Creative Dialogues : Narrative and Medicine [1 ed.] 9781443878920, 9781443874489

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Creative Dialogues

Creative Dialogues Narrative and Medicine Edited by

Isabel Fernandes, Cecilia Beecher Martins, Amândio Reis and Zuzanna Sanches

Creative Dialogues: Narrative and Medicine Edited by Isabel Fernandes, Cecilia Beecher Martins, Amândio Reis and Zuzanna Sanches This book first published 2015 Cambridge Scholars Publishing Lady Stephenson Library, Newcastle upon Tyne, NE6 2PA, UK British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Copyright © 2015 by Isabel Fernandes, Cecilia Beecher Martins, Amândio Reis, Zuzanna Sanches and contributors This book is an output of research developed under Narrative & Medicine – (Con)texts and practices across disciplines (PTDC/CPCELT/3719/2012), a project financed by Portuguese national funds through the FCT (Fundação para a Ciência e a Tecnologia). All rights for this book reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the copyright owner. ISBN (10): 1-4438-7448-5 ISBN (13): 978-1-4438-7448-9

To Rita Charon, pioneer and inspiring figure in the field of Narrative Medicine, with the deepest gratitude for her unfailing support to our project.

TABLE OF CONTENTS

List of Tables and Figures ........................................................................... x Acknowledgements .................................................................................... xi Introduction ................................................................................................. 1 Part I: Framing Narrative in Medical Practice On Clinical History.................................................................................... 10 Diego Gracia Confronting the Other: The Interpersonal Challenge in Literature and Medicine ............................................................................................. 21 Isabel Fernandes Venatio, Vexatio and the Subduction of Meaning in Medicine ................. 40 Manuel Silvério Marques The Third Culture ...................................................................................... 67 João Lobo Antunes Part II: The Relevance of Communication and Narrative in Medicine and Healthcare Can You Die from Not Being Listened to? ............................................... 80 Teresa Casal Narrative Medicine: The Essential Role of Stories in Medical Education and Communication................................................................................... 95 Rita Charon Lessons from a Brain Disease ................................................................. 112 António Martins da Silva

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Selves, Holding Their Own with Illness .................................................. 120 Arthur W. Frank Dissonance and Decision......................................................................... 130 Richard M. Zaner Part III: Illness and Trauma in Literature Representations of Illness in Contemporary Short Fiction: Some Portuguese and British Examples ............................................................ 144 Ana Raquel Fernandes William Shakespeare and the Representation of Female Madness.......... 150 Maria Isabel Barbudo Poetics of Trauma: Modes of Narration in Contemporary Fiction .......... 156 Fernanda Mota Alves Don’t Look Back: Aesthetics of Survival ................................................ 164 Gerd Hammer Fiction as Healing: Memory, Trauma and Forgetting ............................. 170 Luísa Afonso Soares Mary Shelley’s Frankenstein: Writing a Way out of Trauma? ............... 179 Cecilia Beecher Martins Part IV: On Pain and Suffering Variations in Suffering According to Different Contextual Pressures..... 196 Lambros Couloubaritsis Affecting the Body and Transforming Desire: The Treatment of Suffering as the End of Medicine ........................................................ 211 Hillel D. Braude The Narrative of the Man Who Suffers ................................................... 234 Maria Luísa Couto Soares

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Part V: The Limits of the Verbal Being-in-Stories: On the Symbolic Efficacy of Self-Narratives .............. 244 Paulo Jesus On the Limits of Knowing Suffering and Pain ........................................ 259 Smadar Bustan Screams, Shouts and Silences: The Noise of the Wor(l)d and the Impossibility of Narrative ........................................................... 274 Marijke Boucherie Contributors ............................................................................................. 286 Index ........................................................................................................ 294

LIST OF TABLES AND FIGURES

Table 1.1-1 Private Deliberational Relationship Table 2.1-2 Public Deliberational Relationships Table 5.3-1 Image categories Table 6.3-2 From Mertonian science to post-academic knowledge Table 7.3-3 Herba/Verba Table 8.3-4 Evidence-Based Medicine/Narrative Medicine Table 9.3-5 The System of Medical Negations (a sketch) Figure 1.3-1 Science, Epistemic Plurality and the Unity of Medicine Figure 2.6-1 A Concept Map of the Movements of Narrative Medicine

ACKNOWLEDGEMENTS

Without the generous collaboration and support of all the authors of the articles and essays gathered here, this book would not have been possible. Thanks are also due to all the people who have, in one way or another, given their advice and feedback concerning its content and/or possible forms of publication, in particular Professors Adelino Cardoso, Rita Charon, Brian Hurwitz, and Raymond Tallis. A special word of thanks is due to Azzurra Pici (Leonardo Da Vinci student to the Narrative & Medicine project) for her invaluable help in the preparation of this volume’s manuscript during her stay in Lisbon. Our gratitude also goes to the Brazilian photographer André François, who has generously given permission for the publication of some of his photos on the cover of this volume. Finally, we would also like to thank our sponsors, namely, FCT – Fundação para a Ciência e a Tecnologia, ESF – European Science Foundation, and CEAUL/ULICES – University of Lisbon Centre for English Studies.

INTRODUCTION ISABEL FERNANDES

This volume is the outcome of work done in the groundbreaking field of Narrative Medicine by an interdisciplinary research team based at ULICES – University of Lisbon Centre for English Studies – and devoted to the international project Narrative & Medicine since 2009. It corresponds to research work carried out in its launch phase, which came to an end in 2012, when the project was approved for funding by FCT – the Portuguese Foundation for Science and Technology – under the name: Narrative & Medicine: (Con)texts and Practices across Disciplines (PTDC/CPCELT/3719/2012). In the following paragraphs I will summarise the theoretical premises underlying this project and briefly present its contents. In the last two decades, the field of the humanities in general, and of literary studies in particular, has witnessed deep changes, both in terms of the disciplinary boundaries previously set and inherited from a rational model of university, and of new methodological approaches and a selfreflexive praxis (Fernandes 2011a, Belsey 2011). This bursting out of disciplinary constraints was already apparent in the field of English Studies in the 1990s, when the new place of literature in the university was seen as having “negotiate[d] a transition or a displacement into the almost unlimited domain of cultural studies, media studies, communications, etc.” (Kamuf in Bissell 2002). The move away from disciplinary conformity was to evolve even more decisively into the field of the so-called hard sciences, and promote a significant movement of convergence recently recognised by Ceserani (2010). By adopting Gillian Beer’s perspective of the open fields and the presuppositions concerning interdisciplinarity, Ceserani showed the relevance and adequacy of literary concepts and instruments in domains such as philosophy, mathematics, biology, anthropology, economics, and medicine, among others. Similarly, Davis and Morris favoured a blurring of boundaries between the sciences and the humanities, arguing for the emergence of “biocultures” which aim at building “a community of interpreters, across disciplines, willing to learn from each other” (Davis and Morris 2007) – a view based on the belief that “the biological without the cultural, or the

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Introduction

cultural without the biological, is doomed to be reductionist at best and inaccurate at worst” (Davis and Morris 2007). It is our belief that literary studies have achieved a phase of maturity (Fernandes 2011a), and thus become particularly apt for training in any hermeneutical practice or interpersonal relationship. Besides, literary studies can be seen as used to dealing with the uncertainty of an object whose meaning defies stabilisation (Gusmão 2010) with relevance for the uncertainty and singularity attending clinical decision-making (Danou 2007, Hurwitz 2009). The emergence of reader-oriented criticism and theory and, more recently, of ethical criticism (Attridge 2004, Fernandes 2011b) have focused on reading as an ethically charged dialogic cocreation. Attridge argues for “literary reading” (vs. instrumental readings) as capable of raising readers’ awareness and increasing the potential for a complex and generally quite demanding exchange, evoking the emotions, knowledge and values called for by the forms of life literarily represented. This exercise presupposes on the reader’s part a double attitude of passive awareness and radical hospitality (Derrida 1997) towards the text as “other”, which entails the acquisition of “[a] disposition, a habit, a way of being in the world of words” (Attridge 2004) which may correspond to a liberating gesture for the other and for oneself (Ricoeur 1990). Literary studies can/must promote these processes of opening up, receptiveness and (self-)questioning, this response-ability (Levinas 1986), which is unpredictable and non-programmable at the outset, through this reading practice, carried out across disciplines. A comparative view of ethics also plays a crucial role (Hervé 2008). In the case of narratives, the development of the relatively new fields of narratology (Pier and Landa 2008) and socio-narratology (Frank 2010) has promoted a heightened awareness of narrative devices and forms of construction and allows those involved in communication to better “read” their encoding. Authors, methodologically focused, highlight the importance of narrative – in sociology, anthropology and psychology (Riessmann 2008) – and the strengthening of bonds among phenomenology, narrativity and medical ethics (Wiggins and Allen 2010). Such contributions have been acknowledged in medical training (Coulehan 2003), and the incorporation of literary training in medical schools’ syllabi has been in place in the US since the early 1990s. In this context, Charon argues that “narrative training in reading and writing contributes to clinical effectiveness” (Charon 2006). She even adds that “the kind of therapeutic decisions we make can be remarkably different from conventional decision-making as a result of narrative deepening of doctor-patient relationships” (Charon 2006).

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The hegemony of the EBM paradigm in clinical practice in a context where “a culture of profit, consumerism, and mythical adulation of ‘science’ has invaded and complicated the mission of real medicine” (Newman 2008) requires a critical redressing and a readjustment of the praxis (Tauber 2009) so as to offer a richly contextualising and humanising framework for appreciating and responding to human illness, dilemmas 1 and suffering (Hurwitz 2011, Marques 2003). It was in this context, and bearing in mind such presuppositions and constraints, but also the prospects opened up by an interdisciplinary venture of this kind, that we decided to launch the pioneering Narrative & Medicine project in Portugal in 2009. Rita Charon’s role as advisor was crucial from the start: a medical doctor and literary critic, she directs the Narrative Medicine program at Columbia, is an international reference in the field and an inspiring figure for us. Also noteworthy and deserving of our gratitude was João Lobo Antunes’s invaluable support and advice throughout the process. No less decisive was the joint collaboration of three European Research and Development units that have pursued work in this area: the Centre for the Humanities and Health, King’s College, which has promoted research and initiatives in the field since 2002; the Laboratoire d’éthique médicale et de médecine légale, Univ. Paris Descartes, which introduced advanced training in ‘Médecine et Humanités’ in 2011-12, and ULICES – University of Lisbon Centre for English Studies, the centre that hosts the project and has promoted various initiatives in the area since 2009, in collaboration with other national Research and Development units, but especially CFUL – Centre of Philosophy of the University of Lisbon and CHC UNL – Centre for the History of Culture of the New University of Lisbon. Since 2009, all the members of our interdisciplinary team (most of them authors in this volume) have done work in the field by taking part in joint initiatives, namely by attending the European Science Foundation Exploratory Multidisciplinary Workshop on Pain and Suffering in November 2009 at the University of Luxembourg, and organising: an International Conference in September 2010 at the University of Lisbon; two cycles of lectures, one in 2011, with nine (inter)national guest speakers and one in 2012, with eight (inter)national guest speakers; two workshops, one in July 2011, lectured by R. Charon (Columbia University) and A. Radley 1 This introductory section follows parts of the texts prepared for presenting our interdisciplinary Project Narrative & Medicine: (Con)texts and Practices across Disciplines when submitted for funding.

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Introduction

(Loughborough University) and one in July 2012, lectured by K. Hammerschlag and J. Whitehead (both from CHH, King’s College), and the first interdisciplinary post-graduate optional curricular unit in Narrative Medicine at the University of Lisbon (in progress). Moreover, CHC–UNL successfully concluded the project “Medicine and Society” and published a book: Arte médica e imagem do corpo: de Hipócrates ao final do século XVIII. Lisboa: Biblioteca Nacional de Portugal, 2010 (Cardoso 2010). The contributions in this volume are either from a selection of papers presented at the International Conference Narrative and Medicine: Illness and Dialogue or at the “Workshop on Pain and Suffering” (Bustan, Braude and Couloubaritsis), or else lectures delivered during the two cycles that took place in Lisbon in 2011 and 2012 (Antunes, Gracia, Fernandes, Frank). They have not yet been published, except for H. Braude’s and L. Couto Soares’s texts (we acknowledge permission for publication from Johns Hopkins University Press and Journal des psychologues, respectively). We are convinced that these articles and essays, heterogeneous as they inevitably are (coming as they do from different disciplines and perspectives), are not only of high caliber when read individually, but also an invaluable contribution to the field of Medical Humanities when taken as a collection. They will no doubt appeal and be highly beneficial to a general audience, encompassing first and foremost doctors and medical students, as well as other professionals in the field of health care, such as nurses and therapists, but also people in the Humanities, where there is a growing interest in this disciplinary interface, as seen at recent conferences on this and other related topics around the world. The contributions to this volume are organised into five sections, according to the different emphases, subjects and points of view present in each of them. The first section, “Framing Narrative in Medical Practice”, is of an introductory nature, starting with an historical overview concerning the presence and pertinence of narrative in clinical practice (Gracia) and followed by a text where the hermeneutical demands inherent in medical practice are highlighted by similar demands as exemplified in the literary reading of fictional texts (I. Fernandes). Marques addresses questions pertaining to the complex process of how meanings emerge in medicine, while Antunes argues for a third way or “third culture” as a means of redressing the much needed balance between an exclusively scientific approach in medical practice and a more narrative- or patientoriented attitude. The second section, “The Relevance of Communication and Narrative in Medicine and Healthcare”, starts by giving voice to a patient whose extreme experience in hospital calls for an awareness of the intersubjective

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aspects of clinical practice and of the underlying assumptions that shape the therapeutic relationship (Casal). Charon highlights the importance of narratives in medical education and in clinical practice, while Silva illustrates their impact when dealing with particular diseases. Frank calls attention to the contribution given by socio-narratology to the area of Narrative Medicine, and Zaner illustrates all the preceding issues by giving the reader a true medical case where the narrative dimension is inescapable. “Illness and Trauma in Literature” is the most literary of all the sections in this volume in that it deals with representations of illness and trauma in literature. The authors addressed vary from Shakespeare (Barbudo) to contemporary fiction, both British and Portuguese (A. R. Fernandes), American (Hammer), Hungarian (L. A. Soares), and German and American (Alves). Mary Shelley’s famous Frankenstein is also here, invoked by Martins. “On Pain and Suffering” addresses issues generated by extreme experiences both in psychological and/or physical terms. Drawing on philosophical ideas about suffering and neurobiological research on pain, Braude analyses the question of suffering as a clinical entity, while Couloubaritsis calls attention to the importance of moral suffering in human life. The section closes with a piece by Couto Soares suggesting that narrative can be a “cognitive operational tool” that integrates the heterogeneous and incommensurable discourses generated by suffering. The final section in this volume addresses “The Limits of the Verbal” as a means of questioning the volume’s departing premise of the relevance of narrative and the verbal. In their very different ways, the three contributors to this part draw attention to a pre-verbal dimension which impacts human experience, as in the phenomenological approach by Bustan to explaining the resistance of pain and suffering to conceptualisation or in Boucherie’s argument for the impossibility of narrative in specific psychological conditions. Jesus, on the other hand, argues for the “storied creation of selfhood”, while nevertheless calling attention to the “continuous task of producing embodied intelligibility at the intersection of semiotic saturation and nonsense, and phenomenological inarticulacy and silence”. I feel confident that the reader of this volume will find much food for thought in the diverse contributions gathered together, which ultimately converge in a creative dialogue between narrative and medicine.

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Works Cited Antunes, João Lobo 2012. A Nova Medicina. Lisbon: Relógio d’Água. Attridge, Derek 2004. The Singularity of Literature. London & New York: Routledge. Belsey, Catherine 2011. A Future for Criticism. Massachusetts, Oxford, Victoria: Wiley-Blackwell. Bissell, Elizabeth Beaumont, ed. 2002. The Question of Literature: The Place of the Literary in Contemporary Theory. Angelaki Humanities. Manchester: Manchester University Press. Cardoso, Adelino, Braz de Oliveira, António e Marques, Manuel Silvério, (eds) 2010. Arte médica e imagem do corpo: de Hipócrates ao final do século XVIII. Lisboa: Biblioteca Nacional de Portugal. Ceserani, Remo 2010. Convergenze. Gli strumenti letterari e le altre discipline, Milano: Bruno Mondadori. Charon, Rita 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press. Coulehan, Jack 2003. “Metaphor and Medicine: Narrative in Clinical Practice,” Yale Journal of Biology and Medicine 76, 87-95. Danou, Gérard 2007. Langue, récit, littérature dans l’éducation médicale. Limoges: Éditions Lambert-Lucas. Davis. L.J., and Morris, D.B. 2007. “Bio-cultures Manifesto,” New Literary History, XXXVIII, 411-418. Derrida, Jacques 1997. De l'hospitalité. Paris: Calmann-Lévy. Fernandes, Isabel 2011a. Literatura: a (in)disciplina na intersecção dos saberes e das artes. Cadernos de Anglística 16. Lisbon: Centro de Estudos Anglísticos/Edições Colibri. —. 2011b. Critical Dialogues: Slow Readings of English Literary Texts. Lisboa: Edição de Autor. Frank, Arthur W. 2010. Letting Stories Breathe: A Socio-Narratology. Chicago and London: University of Chicago Press. Gusmão, Manuel 2010. Tatuagem & palimpsesto – da poesia em alguns poetas e poemas. Lisbon: Assírio & Alvim. Hervé, Christian 2009. Visions comparées de la bioéthique. Éditions. L’Harmattan, coll. «L’éthique en mouvement». Hurwitz, Brian and Paola Spinozzi (eds.) 2011. “Discourses and Narrations in the Biosciences,” in Fortunati, Vita and Agazzi, Elena (eds.), Interfacing Science, Literature and the Humanitie/ACUME 2, Vol. 8. Germany: V&R Unipress. —. and Aziz Sheikh 2009. Health Care Errors and Patient Safety. Massachusetts, Oxford, Victoria: Wiley-Blackwell.

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Levinas, Emmanuel 1986. Ethique et infini. Paris: Fayard, Col. Biblio Essais. Marques, Manuel Silvério 2003. A Segunda Navegação – Aspectos clínicos da Ética na dor oncológica. Lisboa: Permanyer Portugal. Newman, David H., Hippocrates’ Shadow. New York: Scribner, 2008. Parker, M. 2005. “False dichotomies: EBM, clinical freedom, and the art of Medicine,” Journal of Medical Ethics, 31: 23-30. Medical Humanities. Pier, John and José A. García Landa 2008. Theorizing Narrativity. Berlin: The Gruyter. Ricoeur, Paul 1990. Soi-même comme un autre. Paris: Seuil. Riessmann, Catherine 2008. Narrative Methods for the Human Sciences. Thousand Oaks: Sage. Tauber, Alfred I. 2009. Science and the Quest for Meaning. Waco, Texas: Baylor University Press. Wiggins, Osborne P. and Annette C. Allen (eds.) 2011. Clinical Essays and the Necessity of Stories: Essays in Honor of Richard M. Zaner. London & New York: Springer.

PART I FRAMING NARRATIVE IN MEDICAL PRACTICE

ON CLINICAL HISTORY DIEGO GRACIA

Introduction Clinical history is the fundamental document of clinical practice. It collects all the interesting health data of a patient or person, hence its enormous importance, well matched by its complexity. As documentary support of information on patients, clinical history raises many problems. Currently it is the object of strict legal regulations, which are not our main subject. We will focus on the analysis of the ethical problems that it raises, that is, the conflicts of values which it gives rise to. In this paper we will analyze the following points. First, the historical evolution of this extremely important document and its current situation. Next, the ethical problems that this document raises and, finally, special cases, that is, its various uses as regards the patient (scientific, legal, forensic, epidemiological, etc).

A Millenary Document Clinical history is as ancient as the introduction of writing in medicine itself. In other words, from the time that physicians learnt to write, they began to take notes on their patients. It is common knowledge that writing appeared for the first time in the basin of the Euphrates and Tigris rivers sometime before the year 3000 B.C. The first people who used it were priests, and that explains why the first oral traditions to be set down in writing were religious. But the Mesopotamian High Priests also had medical duties, as was the case amongst many other primitive peoples, for which reason they had to take notes on the diseases of their patients. There remain some testimonies of this, but they are few and of scarce relevance. Where clinical history becomes a true medical document is in Greece, by means of the Hippocratic physicians. This is what is demonstrated to us in the collection of clinical histories collected in the book named Epidemias. It is the first collection of clinical histories that we know of (Tratados hipocráticos, 1989), and as that book was written circa the 4th

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Century B.C., it means that physicians have been writing up clinical histories for at least 2,500 years. Since then, clinical history has become the document in which the the main data of any clinical interview are collected. That is why we now need to raise the subject of the clinical interview (Laín Entralgo, 1998). The clinical relationship is a special type of human relationship, but so characteristic and paradigmatic that it suffers from all the problems of any other kind of relationship between rational human beings. There have been extended debates over what kind of relationship it is. It is a classical theme in literature on bioethics (Childress and Siegler, 1984; Emanuel and Emanuel, 1992). The models that have been used to try to understand it are many: paternalistic, social, alliance, friendship relationship, etc. I submit that it is a relationship of deliberation, and that the entire process of the clinical relationship has to be one of deliberation on facts, values and duties, in order to be able to make a decision that both physician and patient can consider wise, reasonable, responsible or prudent (Gracia, 2004). All human relationships probably have to be, in one way or another, of deliberation, but naturally not all in the same way. Deliberation is particularly important when the aim of the relationship is to make a decision, and more specifically, as in this case, a decision binding to both parties, that is to say, that is common to both. In what follows, therefore, we shall deliberate first on the facts, then on values, and finally on duties (Gracia, 2001b, 2011a, 2011b).

The Clinical Relationship: Facts The concept of “fact” as we understand it today is very recent. We have to almost completely change our categories if we wish to understand what happened in the days before the modern liberal and scientific revolutions. In the ancient world there was no awareness of individuality. This is something that is so foreign to us, contemporary human beings, that we do not understand it. For us, the beginning of the clinical relationship is a fact, an objective fact: someone detects something that is not working properly in his own body and goes to the physician or to the health system to ask for help. In classical times this was not so. The clinical relationship was one more interpersonal relationship, and these were not the result of the initiative of individuals, who established relationships with each other and constituted a social group. This explains why contractualistic theory is contemporary, not ancient. For the classical mindset, contractualism was simply incomprehensible. It is not that the individuals, autonomously,

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constituted by an act of will a social or political reality; it is rather that they were already naturally constituted in this way. So says Aristotle in the beginning of his Politics: all pólis is a koinonía (Aristotle, 1821, 1252 a 1). We often see the term koinonía translated as “association”. This is an error. It is not that human beings associate with one another by means of an act of will. The koinonía is a “natural community” that has the characteristic of existing before the individual and is superior to him. This has extremely important consequences. The most important of them is, undoubtedly, that the idea of “individual” is meaningless. One is only an individual within a natural community, and therefore the community is the true individual. This explains, for example, why the term autonomy is only applicable in Greece to the póleis, not to individuals. These are not autonomous. The autonomous being in Greece is the idiótes, the declassified, the one who lives outside the pólis. He acts against himself, because no-one can achieve his natural perfection unless he is within the pólis, which is the only autonomous structure. This explains why, for Aristotle, for example, ethics were part of politics (Aristotle, 1821, 1094 a 26-b 11). This is often interpreted as a watered-down version, as if ethics is individual, but integrated into a higher unit, the city. But that is not the meaning; rather it is another, stronger one: ethics is not individual, but common. The purpose of moral life is the eudaimonía, and this cannot be achieved unless one is within the community. The role of ethics is precisely to adapt the individual life to that purpose that is communitarian, common. Another consequence of this is the logic of practical reasoning, and in particular, ethical and political reasoning. It is common knowledge that this reasoning is dialectic, according to Aristotle (Aristotle, 1821, 100 a 15-101 b 4). Therefore, its premises are not self-evident truths but “opinions”. And here we see once again that the community is the only self-sufficient or autonomous unit, because these opinions have to be shared by all or by the majority. It also says that, if they are not shared by all or by the majority, they must at least be shared by the wisest or most prudent. And from this follows another fundamental consequence, which is that there are persons who have a greater capacity to understand that viewpoint which is not individual but higher than the individual, that is, common. They are the áristoi, the best, not because they are the best individually, but because they are the best from the viewpoint of what is common or of the community. These are the natural rulers of the others. That explains why, for Aristotle, as well as for Plato, they should be the rulers. Aristotle says that, if it is not them, then the best option will be the democratic system, precisely because it yields to the common or

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communitarian opinion (Aristotle, 1821, 1281 a 39-1282 b 14). Let it be said that democracy is not meant in the modern sense of the word, as a conflict of private interests that require the search for a common minimum, but as a search for the common good. Between one position and the other, there is the same difference that Rousseau established between the “volonté générale” and the “volonté de tous” (Rousseau, 1782). The ancient thesis is that it is necessary to rule by seeking the general will, not the will of all, which is instead the modern thesis. Only in this framework can social and interpersonal relationships prior to modernity be understood. One is an individual within the group and only in relation to it. Identity is bestowed by the group, the community, be it by blood or political. From there, it follows that the value of the community is higher than that of the individual, and consequently, the life of the individual is subordinated to the group; furthermore, within the community relationships are vertical, of the mandate-obedience type. Obedience is moral and political virtue by antonomasia. This was the conceptual framework of all human relations, both religious and civil. Those who know how to find the perspective of the common good rule, and their mandate consists precisely of saying what is good, what good consists of. They define, therefore, what is good, and the rest have no other duty than obedience. This was the case in the religious, civil, political, and familial spheres, and obviously also in the medical one. When the ruler of any one of the natural communities seeks his own benefit instead of the common benefit, then he is called “despot”. So says Aristotle in his treatise Politics (Aristotle, 1821, 1278 b 32-37). Being a despot means treating others as slaves. This is not how a ruler should behave; rather he should treat his subjects like a father treats his children. This is “paternalism”, the model that has ruled social relations, at least in theory, during the greatest part of western history (Aristotle, 1821, 1278 b 371279 a 10). It goes without saying that the clinical relatioship also established itself according to this model. The physician is the ruler, therefore he has the power of saying what is “good” for the patient, and this is not because he includes his own values and not those of the patient in the process of decision-making (this is a completely modern view of the old scenario), but because he knows the order of the phýsis, which is what determines what is correct and incorrect. That order, in classical Greek culture, was understood more as a “framework” than as a “natural law” which prescribed with total exactitude the correct conduct of human beings. This permits us to understand why Aristotle said that it has to be “prudently” managed. Only later, with stoicism, was a strictly ethical character

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ascribed to it, and therefore this normative framework was interpreted as an absolute and immutable order, a source of universal obligations, with no room for exceptions. It is the theory of natural law, which gave rise to the modern reaction. Modernity reacts against all that is held to be a “fact” in the ancient and medieval conceptions of life. The natural order does not have an ethical character. If it has one, this order has to be in reason, and the reason is not common but individual. This is where the process of the “emancipation” of individuals began, and consequently the term “autonomy” took on a new meaning, one which was no longer common or political, but individual or ethical (Gracia, 2001a). This emancipation was achieved initially in the political sphere. This is the modern contractualist theory, and its logical consequences, the socalled liberal revolutions. The creation of the state is a free and voluntary act of individuals, therefore a moral act. From this one can deduce that the primary moral subject is the individual, not the community. Individuals have a diversity of values, and therefore one goes from the axiological “uniformity” to “pluralism”. This pluralism began with the Protestant Divide and the modern religious wars. In order to get along, therefore, a principle was imposed, and that principle is “axiologic neutrality”. The state was no longer the one to define the good, but it had to remain neutral in questions of value, at least in those which were discussed between individuals, and therefore in those where there was pluralism. It is this need to remain neutral in questions of value which led to the slow emergence of a value-free space or territory. This is what would begin to be called “fact”. And as this phenomenon coincided with the birth of modern experimental science, it makes sense that a fact by antonomasia was now “scientific fact”, not only distinct from value but absolutely neutral in matters of value. Scientists, therefore, have to devote themselves to the management of pure facts, without going into questions of value. This is what must be done by the physician, as either a technician or a scientist. Neutrality becomes for him a duty, since otherwise he is not respecting the plurality of values. But from here arise ethics which have been the hallmark of medical ethics, and in general of the ethics of all social and interpersonal relationships. The point is that the scientist wants to be neutral in matters of value, but without renouncing the definition of good. The good is defined by science, in such a way that that there is a gap between the facts and the duties. It is, once again, the naturalistic fallacy, now fostered to an extreme by axiological neutrality. The physician, as a scientist, does not renounce the definition of good, and nor, therefore, the declaration of what

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is good and what is bad, what should be done and what should not be done. This means that, the liberal revolutions having led to the respect of pluralism in the sphere of political decisions notwithstanding, this did not happen in other fields, such as the management of the body, life and death. In this field, the revolution has been very recent, happening in the last 50 years. Until then, relations continued to be vertical, authoritarian and paternalistic. There has been no respect of axiological pluralism in the definition of the good, but an attempt has been made to define it objectively, by means of a neutral knowledge called science. This is the revolution that we are witnessing today. It is a question of extending to the world of the management of the body the same pluralism that has already existed for centuries in the management of public affairs; in other words, introducing axiological pluralism in the definition of the good into the sphere of body and life management. The facts are not sufficient to establish the goodness of any practice. Values must also be considered.

The Clinical Relationship: Values It is not possible to be completely neutral in questions of value, and therefore there are no decisions that do not include values. The soughtafter neutrality is always fictitious. This can be clearly seen in the case of medicine. What the physician has always done is to include, generally unconsciously, values in his decisions; in concrete terms, his own values. In the case of the management of the body. it is clear that our societies have not been neutral, amongst other reasons because they could not be neutral. The values in this kind of question have been imposed by the most powerful ideological institutions. For example, in countries with a catholic tradition, these values were set by the Catholic Church, which laid down which practices were correct and which were not. The catholic tradition has not spoken so much of “values” as of “duties” and “laws”. The overriding criteria has been “natural law”, which is also “divine law”. From that point on, moralists established duties. This was so much the case that “ethics” was considered a speculative and philosophical discipline, since “morality”, the discipline related with he normativity in life and the practical conduct of human beings, was taken as an intrisic part of of theology. The phenomenon of secularization has meant that the strength of ecclesiastical institutions in this kind of matter has drastically decreased, but only to be replaced by other institutions, now civil ones. Hence from

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ecclesiastical law we have moved to civil law, and nowadays the duties of the majority of people are established by what is laid down by law. There has been, in effect, secularization, but it has continued to be assumed in a heteronomous way. This tendency of the human being to jump from facts to duties without passing by values is very significant, and its consequence is the belief that duties should be defined by others and not by oneself. It is an attempt to avoid responsibility for our actions, instead letting them be endorsed by others. In this way, we renounce autonomy and convert ourselves into heteronomous entities. This is paramount to renouncing being moral subjects, ending in ourselves, as Kant said, by converting into mere media, that is, instruments of the decisions of others. It is the phenomenon of “reification”, so frequent in moral life. In this way, we continue in the paternalistic line. In order to avoid it, it is necessary to begin with the facts, but give space to the analysis of values, of the values of each individual, and of the values shared intersubjectively by all or by many. Only then can duties be determined. In the case of the clinical relationship, it is necessary to start from the finding that disease is not a mere fact, but also a value, and that only bearing this in mind can we manage it adequately. The dimension of value is so important in the clinical relationship that, with unreasonable values, the clinical relationship not only becomes very difficult, but can even become impossible.This applies not only to the individual clinical relationship, but also the health system itself. Irrational or inadequately deliberated values lead to irrational decisions. The problem of values is that they are in conflict among themselves. Conflictuality is an axiological category, and a daily phenomenon in human life. It is much more frequent in clinical practice. Hence a necessary capacity of the health professional is to be capable of identifying with precision the values in conflict, for only in that way can he then analyze the possible courses of action, and establish his duties or duty (Gracia, 2013a, 2013b). A value that is always at stake in the clinical relationship is health, or life. It is what creates the relationship between the professional and the patient. But there have to be other values: those which qualify the relationship as such. Based on these values, the clinical relationship will take on distinct characteristics. On the other side of the conflict there may be very different values. In the case of a Jehova’s Witness, it will be religious values; in the case of a person with few resources, financial ones. In other cases, it will be aesthetic values, or culinary, or patriotic etc. All these values can be grouped into one, the value of liberty, or liberty of

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conscience, meaning that there are values that are as important or more important than life, for which one can risk, or even sacrifice one’s own life. In traditional societies, the values for which one could give one’s life were religious, patriotic, etc. Today, some of them, like patriotic values, seem to have lost amongst us much of their former strength. But others have replaced them. For example, the avoidance of pain, quality of life, not spending resources, not depending on others, etc. Therefore, the basic conflict is always between life and liberty.

Ethics of the Clinical Relationship: Duties The usual procedure has been to resolve the conflicts between these two values incorrectly, choosing only between the two most extreme courses of action, which are always the worst. The extreme courses are, in the conflict between the two values described before, the following: the first is what can be called the impositive model, the imposition of the professional’s viewpoint on the patient, which will entail also the uncompromising defense of human life. The second is the purely informative model, neutrality, accepting whatever the patient decides, without further inquiry. These two forms of action are clearly incorrect. They avoid the conflict of values by cancelling out one of the two values. In the first case, there is the imposition of the value of biological life as defined by medicine. In the second, the winner is the other value, the decision of the patient. They are extreme courses, which as we already know are always bad, because they utterly jeopardize a value. Hence the need to seek intermediate courses, since they will be more respectful of the values in conflict and jeopardize them to a lesser extent. Intermediate courses are, amongst other possibilities, the following: to adequately inform about the risks and benefits without manipulating the information; to evaluate the capacity of the patient, and to avoid all kinds of external coercion; to avoid internal coercion, giving time to accommodate the bad news and providing emotional support until the patient is able to master his defense mechanisms and make a prudent decision, and to analyze the authenticity of the values that are related to this process, elaborating on the history of values and deliberating on them, so that they are reasonable and prudent. It goes without saying that the optimal course is to decide between these intermediate courses, and that our moral obligation consists of choosing this course, because any choice of a course worse than the optimal is by definition wrong. In ethics, only the optimal is good.

On Clinical History

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By Way of Conclusion In what was said before we have considered that the relationship is between an isolated physician and his patient. But reality is much more complex, because they are never alone. Hence it is a plural relationship, where there are different moral roles (Gracia, 2004). These social and moral roles can be thus summarized: PRIVATE DELIBERATIONAL RELATIONSHIP

FIRST PART IN THE RELATION PRINCIPLE OF AUTONOMY

SECOND PART IN THE RELATION PRINCIPLE OF BENEFICENCE ETHICS OF THE PROFESSION

ETHICS OF THE ELECTION x x

Informed Consent Capacity

x x

Excellence Diligence

ETHICS OF THE ATTACHMENT x x x

Table 1.1-1

Relatives Close ones Friends

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PUBLIC DELIBERATIONAL RELATIONSHIP

THIRD PART IN THE RELATION PRINCIPLE OF NONMALEFICENCE ETHICS OF THE CONTRAINDICATION Criminal limits of “Lex artis” x x x x

Ignorance Unskillfulness Negligence Imprudence

ETHICS OF THE OBJECTION x x x

Pseudobjetion Criptobjection Genuine Ojection

THIRD PART IN THE RELATION PRINCIPLE OF JUSTICE

ORGANIZATIONAL ETHICS OF MANAGEMENT Management of private resources: principle of efficiency x x x

Efficacy Efficiency Effectiveness

Management of public resources: principle of equity, avoiding: x x x

Discrimination Segregation Marginalization

Table 2.1-2 What we have analyzed in this article is only the second binome, autonomybeneficence, which is what is directly at stake in the clinical relationship. The other one sets the framework for the clinical relationship, and is determined, not entirely but to a large extent, by civil law. For example, professional negligence qualifies as a criminal offence. But the duty of the professional is not to be negligent but diligent, which requires him to provide care to everyone, without exception, at all hours of the day or night, even if he does not receive financial compensation in exchange, seeking not only technical correction but also the maximum human quality, ensuring the secrecy or confidentiality of all the data, and aspiring to excellence.

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Works Cited Aristotle 1821. Aristotelis Opera. Berlin: Reimer. Childress, James F., Siegler, Mark 1984. “Metaphors and Models of Doctor-Patient Relationship: Their implications for Autonomy”, Theoretical Medicine 5: 17-30. Emanuel, Ezekiel J., Emanuel Linda L. 1992. “Four models of the physician-patient relationship”. JAMA 267(16): 2221-6. Gracia, Diego 2001a. “Democracia y Bioética”. Acta Bioethica 7(2): 343354. —. 2001b. “Moral deliberation: The role of methodologies in clinical ethics”. Medicine, Health Care and Philosophy 4: 223-232. —. 2004. “La relación clínica”. In: Jaime Arias (Coord.). Propedéutica quirúrgica: Preoperatorio, operatorio, postoperatorio. Sevilla: Tébar, pp. 17-31. —. 2011a. “Deliberation and Consensus”. In: Ruth Chadwick, Henk ten Have & Eric M. Meslin (Eds.). The SAGE Handbook of Health Care Ethics: Core and Emerging Issues. London: SAGE Publications, pp. 229-239. —. 2011b. “Teoría y práctica de la deliberación moral”. In: Lydia Feito, Diego Gracia, Miguel Sánchez (Eds.). Bioética: El estado de la cuestión. Madrid: Triacastela, 101-152. —. 2013a. Valor y precio. Madrid: Triacastela. —. 2013b. Construyendo valores. Madrid: Triacastela. Hippocrates, Esteban Alicia et al. 1989. Epidemias. Tratados hipocráticos Madrid: Gredos. Laín Enteralgo, Pedro 1998. La historia clínica: Historia y teoría del relato patográfico. Madrid: Triacastela. Rousseau, Jean-Jacques 1782. Du Contrat Social ou Principes du Droit Politique. Londres.

CONFRONTING THE OTHER: THE INTERPERSONAL CHALLENGE IN LITERATURE AND MEDICINE1 ISABEL FERNANDES

“We live as we dream, alone”. —Joseph Conrad, Heart of Darkness

Introduction The chosen epigraph is taken from the book Heart of Darkness by Joseph Conrad, a well known author of Polish descent, who later became a naturalised British subject, and it emphasises the solitude that is inherent in our condition as human beings. This emphasis on solitude as a corollary of the human condition invites us to look at one of the oldest activities in the history of humankind, storytelling, as an act designed to mitigate this solitude, reconciling man with his surrounding universe, building bridges of dialogue with a plural or singular interlocutor, and thereby creating a shared community in which he can seek to make sense of his life experience. Forever underlying these narrative exercises (of greater or lesser elaboration) is the nostalgia of causing a discernible pattern of meaning to emerge from the chaotic flow of experience, turning what we have lived into something that can be shared, cumulatively constructing both a personal and a social identity from the disconnected moments of individual and collective becoming, overcoming despair and suffering, projecting onto them a consolatory plot and postponing the inexorable end – death. In the end, storytelling has always corresponded to a basic need to reconcile man with his mortal and contingent condition, subject to vicissitudes and forces that are sometimes incomprehensible and uncontrollable, confronted with his own vulnerability and with the eminence of his finiteness. Such a narrative 1

Adapted from a lecture given at Sete Rios Health Centre on 20th Oct. 2011, “Contar a doença, falar do sofrimento: alguns exemplos literários”.

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compulsion naturally becomes more acute at critical moments: moments of loss, suffering, catastrophe and death. Storytelling is, then, an integral part of our lives, whether or not we are writers, and literary studies are particularly well placed to provide us with the necessary skills and instruments to understand the mechanisms of constructing stories and the characteristic patterns that these narratives make use of, as well as enabling us to interpret less obvious meanings in them.

Developments in literary theory and criticism in the last century It is worth mentioning some of the theoretical and critical movements that, in the course of the 20th century, were to introduce an increasingly subtle refinement to the exercise of literary hermeneutics, gradually affording a focus that gave greater attention and value to both the message and its interpreter, as well as, more recently, to the relationship of dialogue between them both: the text and the reader. This greater interpretive awareness means that modern-day students of literature have acquired a knowledge that is very useful for other areas, being particularly valuable, for example, in the case of health practices and the clinical encounter. In the first part of this text, I shall illustrate the successive contributions that literary criticism and theory made throughout the 20th century to the development of the informed and theoretically grounded practice of what I like to describe as literary reading, making this activity particularly suitable for contributing to the spread of semiotic practices into countless areas of human activity. A famous academic from the world of literature, born more than a hundred years ago and now an essential reference in North American culture, M. H. Abrams, considered the 20th century, in terms of the evolution of literary studies, to be divided into two roughly equal halves: he designated the first (up until the 1960s) as the “Age of Criticism” and the second the “Age of Reading” (Abrams 356-366). In this way, he sought to draw attention to what he considered to be the keynotes in each of these historical phases: in the first half of the century, the emphasis was placed on the text, in detriment to the historical context and the author’s biography, as an inevitable reaction to the abuses of biographism and historicism that had marked the previous century. In the second half of the 20th century, the emphasis was placed more upon the interpreter or the reader and his/her context, as we shall see.

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The first movement that distinguished the “Age of Criticism” was reactive in nature, placing the spotlight, among others, on T. S. Eliot, who was not only Poet Laureate, but also an essayist and thinker of the highest quality. Although, on the one hand, such a movement, which was to go down in history under the name of New Criticism, paved the way for an undesirable decontextualisation that would later be repudiated, it nonetheless had the undeniable merit of once again placing the literary text itself at the centre of critical attention. Until then, the text had been seen as a mere pretext for intentionalist conjectures of a biographical nature, or as a starting point for considering the respective sociohistorical moment, markedly overlooking the language and mechanisms involved in the construction of the text itself. Above all, New Criticism dominated the Anglo-Saxon academic world, where it was to mark successive generations of students, and the method of reading that it used was popularised as close reading, precisely because it addressed relentlessly the letter of the text. Let us hear what T. S. Eliot himself said on this subject: I have recently noticed a development, […] which is, in its way, a healthy reaction against the diversion of attention from the poetry to the poet. […] The method is to take a well-known poem […] without reference to the author or to his other work, analyse it stanza by stanza and line by line, and extract, squeeze, tease, press every drop of meaning out of it that one can. It might be called the lemon-squeezer school of criticism. (Eliot 113)

It should not, however, be thought that such a method of reading was limited to the Anglo-Saxon world. Given the political importance and cultural impact of the USA in the period following the Second World War, the pedagogical and critical model of New Criticism had repercussions in Europe, if not in a widespread manner, at least in some departments of English Studies, or, as they were generally known at that time, departments of Germanic Philology. The painstaking attention paid to the letter of the text was not, however, restricted to this movement. Europe, and France in particular, were to import and incorporate into the critical thought of the 1950s and 1960s the results of the research undertaken in Russia by a group of avant-garde scholars who became known as the Russian Formalists. It is, however, important to highlight the differences (and most notably the ideological ones) that existed between the two groups. The Russian Formalists (a pejorative name that was given to them by their detractors) were committed to constructing a literary science. To this end, they sought to lay the foundations for Poetics, i.e. to develop, within a kind of grammar of literature, a trans-historical abstract model

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that was capable of explaining all existing literary phenomena. This was an ambitious project that, according to them, also sought to isolate those peculiar characteristics of literary language that afforded writing the very quality of being literature, to which they gave the name of “literariness”. Despite these differences at the level of each group’s projects, the fact is that, in actual practice, members of both movements – New Critics and Formalists alike – were more concerned with the detailed analysis and meticulous observation of the behaviour of language in the literary text than their respective predecessors had been. It was Tzvetan Todorov who became responsible for disseminating the ideas of the Russian Formalists in the West, and particularly so in France, where he was eventually to settle, having contributed to the appearance of another extremely important critical movement in the 20th century: Structuralism. Inspired by the rigorousness and scientific objectivity of the Formalists and by the linguistic science project such as it had been conceived by Ferdinand de Saussure with his structural linguistics, the Structuralists, basing their work on grammatical processes, treated literary text with surgical objectivity, seeking to discover in what they designated as literary signs differential relationships, such as the ones that govern words in language. They also sought, for example, to construct a grammar of narrative, identifying unchanging functions that defined the respective construction and genre;2 of lyrical text, on the other hand, they left us with remarkable analyses in which they highlight the relevance of meaningful sound patterns (see Jakobson and Lévi-Strauss). But a common feature of the three movements that I have referred to so far is the attention that they all paid to the text, rather than (or instead of) the context. Not surprisingly, the first structuralist authors began by being regarded as belonging to what was significantly known in France as Nouvelle Critique.3 And, in fact, they can all be seen as displaying (in the words of T. S. Eliot), that “healthy reaction” to the excesses of 19thcentury biographism and historicism. Curiously, it was Structuralism itself, or some of its authors, that would make it possible to go beyond this stage. I am referring here to today’s household names, such as Umberto Eco and Roland Barthes. The former published his classic, The Open Work, in 1962, and, despite the fact that in this book he was still driven by the formalist dream of “distinguish[ing] the characteristics of aesthetic language” (Eco 28), he emphasised what he 2

See, in this respect, Propp and Greimas. Barthes’ 1966 essay, Critique et Verité, was conceived as a response to an attack upon Barthes and some other structuralist authors in an article by Raymond Picard, entitled “Nouvelle Critique ou nouvelle imposture” (1965). 3

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designated as the “field of suggestivity” (32) of the literary work, which, in his own words, represents an invitation to the reader, a stimulus to “an ever newer, ever richer enjoyment” (42).4 In a particularly fortunate expression, Eco underlines his idea: “the very precision of the mechanism that charms [me] with imprecision” (34). In doing so, he was paving the way to the second great stage of 20th-century literary theory and criticism: the “Age of Reading”, with its emphasis on the reader and his role. In essays such as The Pleasure of the Text (1973) or The Death of the Author (written in 1968), Barthes goes beyond the defence of an interpretive logic that is inherent in text, while at the same time devaluing the role of the author as a creator, regarding this figure as a scriptor, whose sole power is the capacity to combine and interweave fragments of pre-existing texts. In short, what the author does is rewrite, performing a palimpsestic, and not a truly creative, activity, in which the main role is handed to the reader. If the idea of the work as a palimpsest anticipated postmodern writing, the emphasis on the reader and his active role in the eternally postponed construction of the text drew attention to the pivotal position that he was to occupy in post-structuralist critical theory.5 It is within this panorama that we should consider the movements that, above all in the last few decades of the 20th century, were to resurrect this role played by the reader: “reception aesthetics” or “reception theory” in Germany, and Reader-response Criticism in the United States. Everyone examined the role played by the reader in literature and restored its former importance. Roman Ingarden, for example, drew attention to the “spots of indeterminacy” or gaps in the text (as highlighted by Iser 58) which open up for the reader the possibility of filling them in with different meanings. While these movements led to a rehabilitation of the reader, various others were taking place in parallel to them, restoring the balance, rectifying the changes introduced and seeking to place the historical context once more within the range of understanding of critics and academics. I am referring to New Historicism, a movement led by, amongst others, Stephen Greenblatt, who revolutionised (at least methodologically) the study of Shakespeare, for example, and also Cultural Studies, a movement that also became known among British scholars as “Cultural Materialism”, given its Marxist inspiration. While the first of these movements did not reject the lessons provided by the idea 4

Quotations are from the English translation of Opera Aperta (The Open Work). The idea of eternal postponement in the reading of the text’s meaning is also to be found in the writing of another extremely important figure from the 20th century, Jacques Derrida. 5

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of close reading, the latter repudiated everything that could even remotely suggest what its followers judged to be the elitism of an approach that adopted an aesthetic stance towards the study of literature. In the case of Cultural Studies, in my view, its powerfully ideological and political orientation ended up having the perverse effect of putting all literary texts at the same level and thereby devaluing them, regarding them as mere documents from their time, just the same as any other texts of any nature: a newspaper article, a religious tract, a political pamphlet, a scientific text, etc. What this movement actually brought that was positive – in the renewed awareness of the historicity of literature as a cultural and political phenomenon and in its questioning of the literary canon, for example – ended up being lost in the confrontation that it initiated in universities, with its defenders opposed to the critics and theoreticians of literature and to approaches that were more concerned with another materiality – that of the text. These were the so-called “culture wars”, which many of us still remember quite vividly. During the 1980s, together with the emphasis on the reader and reading, there was yet another change of direction in literary studies, with extremely important consequences for the moment that we were passing through at that time: I am referring to ethical criticism, the last movement that I shall mention in this first part of my paper. We have already seen how the movements of the first half of the 20th century were more concerned with the letter of the text itself and tended to overlook the notion of the literary text as a record of experiences undergone in a certain context. Some ethical approaches to literature, however, presuppose the literary text as a privileged place for readers to come into contact with certain types of human experience, with an ethical and affective impact on those who read it. This is the case, for example, with Wayne Booth (in a work entitled The Company We Keep, from 1988) and Martha Nussbaum (in Love’s Knowledge from 1990 and Poetic Justice from 1996). They both believe that literary texts, especially narrative ones, are the best mediators of ethical values. In parallel to this, Cultural Studies, Women’s Studies and Post-colonial Studies from the end of the century imposed on text from the outside their respective political agendas, projecting onto it the emphases that they sought to highlight, centring attention on groups that were politically in a minority, such as women and colonised peoples. Ironically, such varied movements as the ones that I have thus far referred to have converged in the renewed attention that they pay to the content of works. However, there has been a second line of development within ethical criticism itself (Belsey 59), which has introduced corrections by placing

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the main emphasis on the linguistic experience that is inevitably used to transmit these life experiences, and which conditions their respective impact on the reader, thus drawing attention to the conventionality and refraction that are inherent in all forms of literary representation, which must not be regarded as a mere direct and immediate transmission of reality. As Catherine Belsey recently reminded us: “mimesis mimics the world, mimesis is not the world; […] The magic of realism depends on the similarity in conjunction with the difference” (59). Inspired by the philosophical writings of Emmanuel Lévinas, with their emphasis on responsibility both towards the other and for the other, and, at the same time, seeking to rethink and go beyond the dichotomy between form and content that remained at the root of the disagreements and splits at the very heart of literary criticism and academia, as I attempted to suggest earlier, some of the representatives of this new ethical orientation in criticism were to replace the static conception of the literary text with a dynamic conception and a renewed attention to textuality. This is what Derek Attridge proposed in The Singularity of Literature (2004) when he spoke of the literary work as an “act-event”, as a process that is essentially temporal in nature and which is realised in the performance of a reader. Now the literary work, as an inventive “act-event”, implies the creation of an Other, who produces the need for readjustments, both in the reader’s own particular situation and in the cultural conditions under which the reading takes place. The encounter with the words of another therefore presupposes a capacity for dialogic interaction, a generous hospitality, capable of welcoming and recognising the more subtle nuances in their register and matching them in an active and creative response. This is what Attridge designates the literary reading of a work: [t]o read creatively, in an attempt to respond fully and responsibly to the alterity and singularity of the text is to work against the mind’s tendency to assimilate the other to the same, attending to that which can be barely heard, registering what is unique about the shaping of language, thought, and feeling in this particular work. It involves a suspension of habits, a willingness to rethink old positions in order to apprehend the work’s inaugural power (Attridge 80, emphasis added).

In proposals such as this one, we understand the confluence of some of the most important theoretical and critical movements that I have mentioned, as well as others, which it would have been too tiring to enumerate here: the emphasis placed upon the reader, peculiar to the second half of the 20th century, close reading, deconstruction (following the path laid by Jacques Derrida), dialogic poetics, clearly inspired by a disciple of the Russian

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Formalists, Mikhail Bakhtin – these are just some of the contributions that converge upon this new position and which, because of the theoretical maturity that it reveals, make it particularly suitable for being appropriated by other areas of activity and by other disciplines lacking in hermeneutic instruments. The ethical responsibility for the Other, presupposed by the act of reading, is a form of hospitality and generosity in which I am completely involved, calling into play all my cognitive faculties – as well as my emotions and my physical body. Hence the risk that is implicit in any intersubjective act of this type: I acknowledge and accept something to which I am entirely committed, before knowing what is really at stake (Attridge 119). This is how I voluntarily set myself up as a reader of literature, enabling the work to gain its existence through my generous act of attention and hospitality. What determines the ethical experience aroused by literature is to be found precisely in what makes this latter activity unique: its staging of the fundamental processes through which language operates upon us and upon the world. The literary work requires the reader to engage in a reading that does justice to the formal elaboration of these processes, a reading in the sense of a “performance”, a puttinginto-action and a bringing-into-play that implies both passive receptiveness and active commitment, receiving and welcoming the Other, as well as inventing the Other. The Other that literature creates is simultaneously challenging and vulnerable – its power lies in its very fragility.

From literature to medicine The proposal that I wish to make is (apparently) a simple one: let us now attempt to transpose the radical requirements of literary reading, such as it is conceived by ethical criticism, albeit with the necessary adaptations, to the clinical encounter, where the intersubjective relationship is also pivotal. It is not just a question of our paying close attention and being willing to accept as part of a patient’s clinical history the most notable aspects of the plot that is conveyed by that same patient’s narrative. It also requires us to be receptive and capable of recording and decoding the particular language used in the narration, a language that maybsometimes even enter into conflict with the ostensible plot of the story that is being recounted. In relation to this very matter, Rita Charon used the expression “close listening” to refer to the type of attention that the doctor should pay

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to the information that the patient is transmitting.6 From the type of metaphors that are used, from the insistent repetition of certain words or expressions, from the point of view and the time sequence that are adopted, from the ambiguities, the silences or even from the contradictions that are displayed, as well as from many other discursive characteristics, healthcare professionals will therefore be able to better understand and more completely diagnose the patient’s unique psychosomatic situation. As Charon underlines in her defence of what she calls “Narrative Medicine” (in contrast to “Evidence-based Medicine”): [i]f narratives are stories that have a teller, a listener, a time course, a plot, and a point, then narrative knowledge is what we naturally use to make sense of them. Narrative knowledge provides one person with a rich, resonant grasp of another person’s situation as it unfolds in time, whether in such texts as novels, newspaper stories, movies, and scripture or in such life settings as courtrooms, battlefields, marriages, and illnesses. […] Unlike scientific knowledge or epidemiological knowledge, which tries to discover things about the natural world that are universally true or at least appear true to any observer, narrative knowledge enables one individual to understand particular events befalling another individual not as an instance of something that is universally true but as a singular and meaningful situation. (9)

This grasping and deciphering of the specific human situation, which characterises the patient at a certain moment and which leads to the diagnosis, will be made all the more competent and effective whenever healthcare professionals have available to them the instruments of analysis and interpretation that enable them to make sense of the account they have just been listening to. Some of these instruments, at least, can be provided by literary studies in general. It was the recognition of this necessary complementarity between scientific knowledge tending towards the universal (typical of the biological sciences) and a close and attentive approach, open to the particular resonances of the concrete historical case (gradually revealed in the course of the clinical encounter and clinical history, with the inevitable constraints of culture-specific factors such as religious beliefs, life experiences, traumas, expectations, etc.) that, at least partly, led Lennard J. Davis and David B. Morris to publish their manifesto in favour of what they describe as “biocultures” in the journal New Literary History in 2007. The text, entitled “Biocultures Manifesto”, defends the following: 6

Rita Charon, during a lecture in Lisbon on 12th July 2011, “On the Narrative Medicine Program”.

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Confronting the Other [t]o think of science without including an historical and cultural analysis, would be like thinking of the literary text without the surrounding and embedding weave of discursive knowledges active or dormant at particular moments. It is similarly limited to think of literature […] without considering the network of meanings we might learn from a scientific perspective. […] The biological without the cultural, or the cultural without the biological, is doomed to be reductionist at best and inaccurate at worst. (411)

With this term, biocultures, they sought to cover, validate and consolidate a multiplicity of interdisciplinary experiences that were already under study at countless universities and which range from the “medical humanities” (a designation and concept that is close to that of “Narrative Medicine”) to the history of medicine, passing through public health, bioethics, epidemiology, identity and body studies, medical anthropology, medical sociology, philosophy of medicine, “queer studies”, AfroAmerican studies, etc. Mapping out the genesis of the division between the so-called hard sciences and the others is also part of their aim, as well as questioning the legitimacy of that dividing line, because, as they claim: [i]n the end, all branches of knowledge interpret. Interpretation isn’t all that they do, but it constitutes a massive common ground. […] Biocultures argues for a community of interpreters, across disciplines, willing to learn from each other. (416)

The literary texts Now that I have established the theoretical framework that I consider to be indispensable for any project in the field of Narrative Medicine and for seeking to underline the pertinence and relevance of literary studies and literature for the training of healthcare professionals, I shall devote the second part of this text to the observation of some brief narratives that highlight the challenge presented by the confrontation with the Other, and illustrate the need for the recognition of that Other to be taken fully into account if the interpersonal relationship is not to end in mutual misunderstanding, insufficient judgement, fear or cruelty. I am interested in exploring these aspects, such as they are dealt with in fictional texts, as a way of drawing attention to the importance of the dangers to which any interpersonal relationship is subject, and therefore also consequently to the relationship that arises in the clinical encounter.

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I have selected three short stories by three English authors. Each of these is designed to illustrate one of the following topics: (1) “the Other as a stranger”; (2) “‘the fear of the incomprehensible’ and the importance of the imagination”; and (3) “the danger of underestimating the suffering of others”.7

1. “The Other as a stranger” To approach this topic, I have chosen the text by D. H. Lawrence, Odour of Chrysanthemums.8 Lawrence was born in 1885, the son of a miner from the East Midlands and a primary school teacher, and died of tuberculosis in 1930, having published, amongst others, novels such as: Sons and Lovers, The Rainbow, Women in Love and Lady Chatterley’s Lover. He was also a poet, translator and essayist. In 1911, at the beginning of his career, he published the short story to which I am drawing attention here. It is a story with a very simple plot: while waiting impatiently and sorrowfully for her husband to return from the mine at the end of yet another day’s shift, a young woman, already the mother of two children and once again pregnant, is confronted with the unexpected news of his death through asphyxiation following the collapse of a gallery where he had stayed behind to work. It is only when, with her mother-in-law’s help, Elizabeth Bates washes the body of her children’s father in order to dress him afterwards, that she realises that he is a stranger to her: the inviolability of the beautiful body of the dead young man highlights for her the complete lack of knowledge that she has of that other person, with whom she had shared her everyday and most intimate life, but whose innermost feelings she had never truly known. Immersed in a domesticity made up of daily problems that have rendered her insensitive, and living in a rural landscape threatened and corrupted by mining, where the traces of a once prodigious Nature (now become suburban and somewhat sordid) only subsist symbolically in the chrysanthemums that laconically and leaflessly punctuate the different stages of a socially planned and programmed existence, the protagonist drifts off into self-absorption dictated by her immediate needs for survival. In this way, she gradually forgets the companion that she has by her side, condemned to perform the already prescribed role of breadwinner and father of the family, although this is a role that he either does not know how to fulfil or else is incapable 7

“The fear of the incomprehensible” is an expression used by Conrad in the short story Amy Foster, which I shall examine later on. 8 I am referring to the text that appears in the volume entitled The Prussian Officer and Other Stories (Lawrence 181-199), henceforth referred to as OC.

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of fulfilling. Disillusioned and disgusted by the thwarted expectations of a marriage that has brought her far too heavy burdens (without offering her the means to confront them), and embittered by the insufficiency of a wage that has been made even more meagre by her husband’s ever increasing addiction to drink, Elizabeth ignores the man and only finds in him the reflection of the frustration of her dreams, the origin of her daily anguish: the spurious and ineffective husband, the absent father that she does not refrain from criticising, even in front of the children, who are themselves also prematurely trapped in this domestic drama. To complement this brief paraphrasing of the short story I shall now quote two of the most significant passages. In the emotional restraint of the naturalist register that has been chosen, the first of these passages touches us like a surprisingly moving Pietà: “We must lay him out”, the wife said. She put on the kettle, then returned and kneeling at the feet, began to unfasten the knotted leather laces. The room was clammy and dim with only one candle, so that she had to bend her face almost to the floor. At last she got off the heavy boots, and put them away. “You must help me now”, she whispered to the old woman. Together they stripped the man. When they arose, saw him lying in the naïve dignity of death, the women stood arrested in fear and respect. For a few moments they remained still, looking down, the old mother whimpering. Elizabeth felt countermanded. She saw him, how utterly inviolable he lay in himself. She had nothing to do with him. She could not accept it. Stooping, she laid her hand on him, in claim. He was still warm, for the mine was hot where he had died. His mother had his face between her hands, and was murmuring incoherently. The old tears fell in succession as drops from wet leaves; the mother was not weeping, merely her tears flowed. Elizabeth embraced the body of her husband, with cheek and lips. She seemed to be listening, inquiring, trying to get some connection. But she could not. She was driven away. He was impregnable. She rose, went to the kitchen, where she poured warm water into a bowl, brought soap and flannel and a soft towel. “I must wash him”, she said (OC 196).

The second passage appears at a later moment, towards the end of the story, in which there is a kind of epiphany and death comes to re-establish the truth that until then had been kept away from that human relationship, which after all is itself also fatally placed at the mercy of the critical contingencies of a day-to-day life dictated solely by the need to satisfy the basic requirements of subsistence. The point of view offers us access to the

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protagonist’s innermost self, mimicking the inflections of her tormented thoughts: As she looked at the dead man, her mind, cold and detached, said clearly: “Who am I? What have I been doing? I have been fighting a husband who did not exist. He existed all the time. What wrong have I done? What was that I have been living with? There lies the reality, this man”.9 And her soul died in her for fear: she knew she had never seen him, he had never seen her, they had met in the dark and had fought in the dark, not knowing whom they met nor whom they fought. And now she saw, and turned silent in seeing. For she had been wrong. She had said he was something he was not; she had felt familiar with him. Whereas he was apart all the while, living as she never lived, feeling as she never felt. […] She had denied him what he was–she saw it now. She had refused him as himself. And this had been her life and his life. She was grateful to death, which restored the truth. And she knew she was not dead. (OC 198)

Through this short story, we can see how easy it is to replace the radical alterity of the other with a domesticated version of the difference that both appeals to us and disturbs us, and which, for that very reason, we are either unable or unwilling to correspond to and accept! Just like the doctor who clings to the identification of the clinical case, as it is described in the manuals and confirmed by statistics, and thus becomes blind to the concrete and singular situation that he has before him.

2. “‘The fear of the incomprehensible’ and the importance of the imagination” In order to illustrate this second topic, I shall make use of a short story written by the already-mentioned Joseph Conrad, from which I borrowed the expression: “the fear of the incomprehensible”. In this case, we are faced with a relatively unknown short story, “Amy Foster”, from the volume Typhoon and Other Stories (Conrad 133-162).10 This is a text written in 1903, in which, curiously and not by chance, the narrator of Amy’s story is a country doctor, Dr. Kennedy, who recounts to the authorial narrator the surprising events taking place in the life of the unlikely “heroine”. As is customary from this Polish-born writer, the artifice of resorting to two narrators and a narrative within another 9

If the previous passage seemed to me like a Pietà, then this moment might be associated with another famous theme from painting, which is also of a religious nature: Ecce Homo. 10 Henceforth referred to as AF.

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narrative (a framed and a framing narrative) is not a gratuitous event, and, through the presentation that is made of Dr. Kennedy, we end up discovering that he is a very special individual: [m]y friend Kennedy [this is how the first narrator calls Dr. Kennedy] had begun life as a surgeon in the Navy, and afterwards had been the companion of a famous traveller, in the days when there were continents with unexplored interiors. His papers on the fauna and flora made him known to scientific societies. And now he had come to a country practice– from choice. The penetrating power of his mind, acting like a corrosive fluid, had destroyed his ambition, I fancy. His intelligence is of a scientific order, of an investigating habit, and of that unappeasable curiosity which believes that there is a particle of a general truth in every mystery. (AF 135-136)

Furthermore, Dr. Kennedy’s gaze is “profoundly attentive” and “[h]e had the talent of making people talk to him freely, and an inexhaustible patience in listening to their tales” (AF 136). It is important to remember these characteristics, because they will turn out to be significant, in contrast with everything else that follows. Amy Foster’s story paints a fairly unflattering portrait of the protagonist herself: devoid of any physical attractiveness, she is also “dull”, i.e. she lacks intelligence or is stupid, a term that is used repeatedly. However, and rather surprisingly, she shows that she has “enough imagination to fall in love” and also “to understand suffering and to be moved by pity”. In turn, Yanko, the male protagonist, is the sole survivor of a shipwreck that occurred along the English coast, from among a larger group of emigrants from Eastern Europe, heading for the United States of America. He manages with some difficulty to drag himself to land, where he finds himself in the midst of a small rural community; his clothes are tattered; he is wounded, starving, thirsty and desperate. His appearance is terribly frightening to the inhabitants of this community, who repel him with great brutality, being incapable of understanding his situation and not comprehending the strange sounds that he emits; he is taken for a thief, a beggar and a lunatic. Conrad is ironic in the way that he explores the lack of understanding (which is immediately a linguistic problem) between the native inhabitants and Yanko. An eloquent example of this occurs when Amy’s boss, Mr. Smith, encounters the stranger in the barn: Smith is notoriously hot-tempered, but the sight of some non-descript and miry creature sitting cross-legged amongst a lot of horse straw, and swinging itself to and fro like a bear in a cage, made him pause. Then this tramp stood up silently before him, one mass of mud and filth from head to

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foot. Smith, alone amongst his stacks with this apparition, in the stormy twilight ringing with the infuriated barking of the dog, felt the dread of an inexplicable strangeness. But when that being, parting with his black hands the long matted locks that hung before his face, as you part the two halves of a curtain, looked out at him with glistening, wild black-and-white eyes, the weirdness of this silent encounter fairly staggered him. […] Then a sudden burst of rapid, senseless speech persuaded him at once that he had to do with an escaped lunatic. […] As the creature approached him, jabbering in a most discomposing manner, Smith (unaware that he was being addressed as “gracious lord”, and adjured in God’s name to afford food and shelter) kept on speaking firmly but gently to it, and retreating all the time into the other yard. At last, watching his chance, by a sudden charge he bundled him headlong into the wood-lodge, and instantly shot the bolt. Thereupon he wiped his brow, though the day was cold. He had done his duty to the community by shutting up a wandering and probably dangerous maniac. Smith isn’t a hard man at all, but he had room in his brain only for that one idea of lunacy. He was not imaginative enough to ask himself whether the man might not be perishing with cold and hunger. (AF 146-147, emphasis added)

The one who takes pity on him and intuitively understands that the stranger is only begging for help is Amy, who furtively takes bread to him and satisfies his hunger. Later, Yanko benefits from the help of Swaffer, a man of some wealth, with an intellectual and cultural level somewhat above that of his fellow countrymen, and who, being partly motivated by a particular curiosity for everything that is out of the ordinary, becomes interested in Yanko, while the latter gradually becomes integrated into the local community. Even so, the feeling of strangeness in relation to the land and its customs, which are so different from those of his country of origin, keep him alienated and fill him with a feeling of profound loneliness and even despair, only mitigated by his marriage to Amy and the birth of a son. Finally, his son gives him hope that he may now have a genuine interlocutor: someone who speaks his language, someone to whom he can teach the songs of his childhood, who can learn the dances and prayers that his father had taught him. However, shortly after the birth of the child, a climate of tension begins to build up between the couple, because Amy feels threatened when she sees him talking to the baby in a language she does not understand. It is then that her husband falls ill, with lung trouble, exacerbated by the inclement winter. Feverish and half-conscious, Yanko begins to speak deliriously in his mother tongue, which Amy does not understand and which frightens her. At a certain point, burning with fever, he begs her for water, and, on getting no reply, shouts at her in despair, but his wife, not understanding a word of what he is saying to her, is so

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frightened by the sudden appearance of this strange agitated creature that she believes to be completely crazed and in whom she no longer recognises her husband that she runs away in panic, taking her son in her arms and leaving Yanko to his sad fate. Yanko ends up dying that same night of thirst, cold and despair. The imagination and pity that previously rescued him are now lacking in Amy, who is overcome by her fear of the unknown, of what she is incapable of understanding. Just as it does for the protagonist of this short story, imagination appears in Conrad as an essential ingredient in interpersonal relations. In fact, it also seems to be equally as important for the clinician, so frequently confronted with the unexpected case, with unmatching and apparently incongruous symptoms, in the patient that he has in front of him, facing the extreme complexity of a singular situation that surprises even the best scientific preparation and the most systematic intelligence.

3. “The danger of underestimating the suffering of others” The short story by the contemporary British writer Sue Hubbard entitled “Mona Lisa”, which is included in the volume Rothko’s Red,11 published in 2008, is one of a series of ten short stories that deal with women’s lives, marked by disillusion, pain, suffering and trauma. Undoubtedly due to the author’s activity as an art critic, the volume presents as its distinctive feature the fact that all the stories refer to more or less famous paintings, as is the case with the story selected. “Mona Lisa” is a short story that tells us the tale of a schoolgirl, Molly, whose age we are not told (she is probably aged somewhere around eight to ten), who, one day, instead of going to school, decides to wander along the canal bank, disobeying the recommendations of her mother who has made her promise never to return there again (something that immediately reminds us of the beginning of the story of Little Red Riding Hood). The narrative is told from the point of view of an omniscient and impartial narrator, who adopts a dispassionate and objective view by describing the successive actions performed by the character or else adopts the innermost point of view of the girl herself in order to afford the reader access to her thoughts. This immediately creates a kind of double response in the reader. By having access to a factual description of Molly’s apparently unmotivated and illogical actions and, at the same time, to the apparently chaotic stream of consciousness of the child’s memories and associations, the reader ends up in possession of the elements that allow him to 11

Henceforth referred to as RR.

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diagnose the case and complete the apparently open and enigmatic narrative that confronts him. The story’s two opening paragraphs will exemplify this idea: Molly’s severed plait lay in her lap like something dead. She sat scowling into the water, a small girl clutching a pair of kitchen scissors in one hand and the ragged end of her hair in the other. She poked the centre of a nearby dandelion with the stainless steel points, and then angrily chopped the muddy crisp packet lying beside her on the path before jabbing the reflection grimacing back at her from the murky canal. After that she cut a hole in the knee of her jeans. “Bugger, bugger, bugger”, she growled. “Fuck, fuck, fuck”, she hissed, shocked at her use of the forbidden F-word. There was no one else around. A cyclist had ridden past on the towpath and, in the distance, by the bridge; she could see a man fishing. Two drakes were pecking at some weed on the other side of the canal below the paint factory and, from the greasy water, the rusty skeleton of a pushchair poked through the film. She wondered if there’d been a baby in it when it had fallen in. Perhaps it was still lying on the muddy bottom, its little fingers clenched in a withered fist, its face bloated like a piece of grey bath sponge. (RR 20-21, emphasis added)

Molly’s clearly self-aggressive behaviour (highlighted in bold in the quotation), her despair and rage, the reasons for which the reader is still unaware of, seem to be in harmony with the sordid suburban landscape and are associated with references to death (marked in italics), which immediately condition us and prepare us for the worst.12 What we learn later on, in the course of the narrative, has to do with the fact that Molly is not capable of overcoming what she sees as the loss of her father, whom she adores. After having separated from her mother (whom Molly hates and whom she sees as the cause of everything that had gone wrong in the family), he had gone to live with a younger woman, Moira, whom the girl does not trust, especially because of “that funny smile of hers so you could never tell what she was really thinking. She didn’t know who she hated most, Moira or her Mum” (RR 25). We end up deducing that some of the symptoms of psychological disturbance exhibited by Molly have led her mother to take her for a consultation with a certain Dr. Berg, who, in turn, seeks to reassure her by once again stating that she should not feel guilty about anything. He does

12

On the subject of the convergence between self-aggressive behaviour, selfmutilation and suicide attempts among young people, see, for example, Oliveira (112).

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not, however, meet with great success, as can be deduced from the stubborn silence that the girl maintains throughout the whole session. The reference to the painting of the Mona Lisa occurs before the story’s final section, so it can be considered the catalyst moment in the respective unravelling of the plot. In the course of her strolls along the canal towpath, Molly meets a man walking his dog (a realistic substitute for the meeting between Little Red Riding Hood and the wolf, and, as we shall see, a decisive moment in this story, as in the traditional folk tale). Convinced that there is no danger, since, being aware of her mother’s warnings, she can see that the man does not want to offer her any sweets, Molly strokes the dog and asks what its name is. “Mona Lisa” replies the man. And, noting Molly’s puzzlement, the man explains: “‘It’s a famous painting, love. Of a lady with a funny smile. You can’t tell what she’s thinking. Just like this one here,’ he nodded indicating the dog” (RR 27). At this point, the reader already knows what type of associations such a reference to an enigmatic smile will set in motion in Molly’s tormented mind: Moira, the mother, the hatred that she directs towards them both, since they are the ones who have caused her present situation in which she is deprived of her father’s presence, her feelings of loss and anger. However, instead of this, what takes place in the girl’s mind, as an introduction to the concluding section that follows immediately afterwards, is the reference to a much more insignificant loss: her having just missed a swimming lesson, where she had begun to train for a bronze medal in lifesaving (RR 27). We do, however, quickly understand the connection of this apparently unexpected association, since Molly recapitulates everything she has learned in swimming about the procedures to be followed in saving someone from drowning. It is then that she imagines her mother (who has never learned to swim) being caught in that type of extreme situation, and also how she would throw herself into the water, with the aim of saving her, but how, at the last moment, she would not be able to resist the temptation of leaving her to die instead. At that moment, she begins to think how her mother’s disappearance would make life easier for all concerned, especially for her father, who would undoubtedly come back to her, Molly. When, finally, the child undresses and, wearing just a vest and knickers, sits down and begins to cry, in the rain, on the muddy grass, in the midst of the rubbish left on the canal bank, the reader, touched by this image of great vulnerability and abandonment, wonders what she will do next, although it has become obvious that, in her disturbed condition, Molly has identified with her mother (with whom she shares the burden of guilt) and may therefore, in an extreme gesture, attempt to drown herself,

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or, at least, catch pneumonia. The story’s final paragraph, however, refuses to give the reader an explicit tragic ending, leaving us, as in Leonardo da Vinci’s famous painting, in a state of unbearable vagueness and indefinition: [s]he sat there for a long time, as the rain, a downpour now, washed over her small shivering body, until she couldn’t tell whether it was the rain or her tears that were soaking her face. (RR 29)

Works Cited Abrams, Meyer Howard 1989. Doing Things with Texts. New York: W. W. Norton. Attridge, Derek 2004. The Singularity of Literature. London: Routledge. Barthes, Roland 1966. Critique et vérité. Paris: Editions du Seuil. Belsey, Catherine 2011. A Future for Criticism. Sussex: Wiley-Blackwell. Charon, Rita 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press. Conrad, Joseph 1992 [1903]. “Amy Foster”, Typhoon and Other Stories. Harmondsworth: Penguin, 133-162. Eco, Umberto 1989. The Open Work. Trans. Anna Cancogni. Cambridge, Massachusetts: Harvard University Press. Eliot, T.S. 1957. On Poetry and Poets. London: Faber and Faber. Greimas, Algirdas Julien 1966. Sémantique structurale. Paris: Larousse. Hubbard, Sue 2008. “Mona Lisa”, Rothko’s Red. Cambridge: Salt Publishing, 20-29. Iser, Wolfgang 1980. “The Reading Process: A Phenomenological Approach”, Reader-response Criticism: From Formalism to Poststructuralism. Ed. Jane P. Tompkins. Baltimore: The Johns Hopkins University Press, 50-69. Jakobson, Roman and Claude Lévi-Strauss 1981. “Les chats de Charles Baudelaire”, Selected Writings: Poetry of Grammar and Grammar of Poetry. Ed. Roman Jakobson. Vol. 3. Berlin: Walter de Gruyter, 447464. Lawrence, D.H. 1983 [1911]. “Odour of Chrysanthemums”, The Prussian Officer and Other Stories. Ed. John Worthen. Cambridge: Cambridge University Press, 181-199. Lennard J. Davis and David B. Morris 2007. “Biocultures Manifesto”, New Literary History 38 [3]: 411-418. Oliveira, Abílio 2011. O Desafio da vida. Lisboa: Coisas de Ler. Propp, Vladimir 1958. Morphology of the Folktale. Trans. Laurence Scott. Bloomington: Indiana University.

VENATIO, VEXATIO AND THE SUBDUCTION OF MEANING IN MEDICINE* MANUEL SILVÉRIO MARQUES

“Fools you measure everything by your own measure” (2, 73) —Petrarca, Invective contra medicum (Trans. D. Marsh) “If scientific thought resembles the artifactual, in which sense does a description remain in it?–which is indubitably, for as much as it may weigh the operationalist idealisms or the velleities of ‘deconstruction’, none other than the auto-criticism of science […]. Now, both the scientific construction and neutrality are necessary conditions of objectivity–thus reencountering the aporia of representation.” —F. Gil, Mimésis e Negação, 1984, 349 (Trans.) “Toute action humaine renferme un noyau dure d’incompréhensibilité. S’il en était autrement, nous serions en mesure de prévoir les actes de notre prochain” —Primo Levi, in L’assymétrie de la vie, 2004, 94

Introduction: medicine as venatio and vexatio In Mimésis e Negação, Fernando Gil wrote that scientific research: Only rarely is an object well constructed and the subject is at no time entirely normalized. For that reason, the choice of possible solutions will only be clear occasionally and the problems of the meaning–in principle ill posed–are never completely repressed. Those are the profound causes of [scientific] controversies. (Gil 1984: 349)

I dare to ask, are the issues raised by Gil the reasons for the mysterious historic silence over the limits, opacities, failures and errors of medicine? Why, in medical history, have there been so many incidents of shameful

*

To my parents, Maria Marcelle B. S. Marques (1926-2012) and Silvino Silvério Marques (1918-2013), in memoriam.

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commerce and secrecy, so many personal and ad hominem fights, and so few known impeachments, apologies and mea culpa? This paper arises from the desire to discuss issues inherent in the statements and questions above within the context of the philosophy and science of medicine. It draws on Fernando Gil’s teachings (I believe that his theories of evidence, proof and conviction are important to medicine) and develops ideas presented in recent publications, including Rita Charon’s Narrative Medicine (2006) as well as the publications of Frederick Grinnell, Daniel Rothbart and Bas van Frassen on the role played by subjectivity and the emotions, the lab and the instruments, in contemporary science.1 These works demonstrate that today narrative approaches and scientific theories interconnect along the unavoidable indexical operations of self-location in the (research) protagonists’ logical spaces. As microphysics did a century ago, western technomedicine and Big Pharma industrial complexes should accept the pervasive epistemic pluralism and epistemic relativism and the consequences of these for medical science (Lloyd 2012). The problems raised by Gil have been further complicated in contemporary medicine by the technical advances and changing practices associated with this field over the last years. These include the geneticisation of health and disease, the commodification of body parts, the fragmentation and anonymity of the patient’s body, the stories about prosthetics and/or robotics, and the propensity for the reification of the patient himself. As a result of these changes, whole new areas of concern have been born around the body, or more particularly, the organs that constitute the body, as medical professionals strive to develop appropriate means of dealing with organ donors, recipients and their families. The startling reality is that organ regeneration, production and transfer - to mention a pertinent paradigmatic example - have generated a remarkable form of medicalised communion and at the same time a global kind of symbolic (auto)cannibalism (Sharp 2007: 24, 118). The quest for meaning or significance in medicine (as in politics, in economics, in everyday life) is obviously urgent and extensive. This paper develops a subject that I have written on previously, namely the bodily experience in the baroque concept of the fibrous body. Even if it is of necessity very partial and schematic, it also acknowledges the Krisis diagnosed by Husserl and the gap between C.P. Snow’s Two Cultures, and it attempts to respond to Michel Henry’s La barbarie. I present my 1

For the abolition of experience, the experience of meaning and the excision of meaning with the homo faber and modern times see Benjamin (1992: 27); Arendt (1989: 62, 138, 324); Agamben 2002: 23).

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proposals within this context, because I believe that the bodily experience shows the ontological instability and plurality of medicine. In the baroque concept of the body, the fibre, a robust and stable scientific representation, as presented in Albrecht van Haller’s medicine, was a bridge between the anatomical and the microscopic levels.2 It appeared simultaneously as an epistemological obstacle and the precursor “cellular” element. As van Haller’s medical model required a bridge, so does my approach. It has as its primary objects the parameters inherent in three topics: (i) the genealogy of both scientific representation and evidence; (ii) the idea of the authority of nature (Vidal 2004), and (iii) the basic issue of hospitality as understood within the context of medical care – this should embody the physician’s attitude of openness, solicitude and care for, and care of, the patient, as Lot cared for the stranger in the biblical parable (Derrida 2003; Marques 2009). This hospitality/care implies the preservation of the patient’s self and the valorisation of the first person perspective. In this paper, I will focus on how patients’ narratives are subjugated by evidence-based medicine (hereafter referred to as EBM), and the valorisation of this narrative in narrative-based medicine (hereafter referred to as NBM), as the patient’s narrative is of central importance in the latter. I believe this phenomenon is emblematically expressed in Petrarca’s injunction herba non verba. I would like also to touch on the fashionable topic of “personalised medicine”, showing en passant that predictive, personalised, preventive and participatory genomic technology is, at most, wishful thinking at the moment. This so-called P4 medicine appears to some to be more like an unconscious compensation for a gigantic experimentum humanum and a huge commodification of health (Price 2010: 132). When one understands these principles, one becomes aware that in science (or in law, theology, or elsewhere) “nature’s authority can circumvent the discourse of legitimation to penetrate directly into habits, perception, judgements and feelings”, contributing toward the obligations

2

This topic has been addressed elsewhere (Marques and Braz de Oliveira 2011). The following statement by François Duchesneau explains the so-called baroque fibrous body: “a máquina e o paradigma do modelo iatromatemático e iatrofísico, da metáfora do relógio, da redução ad minima, da epistemologia newtoniana (Boerhaave, Baglivi, Haller)–sejam as mónadas físicas, as moléculas orgânicas ou as fibras animadas por forças específicas vitais–, durante os cem anos que atravessam a segunda metade do século XVII e a primeira do XVIII, foram decisivos para a hegemonia do método experimental, do organicismo e do microestruturalismo” (Duchesneau 2012: 279). See also Stafford (1993).

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of rational argumentation and the imperatives of ethical awareness (Vidal 2004: 9).3 To know the patient as an individual, it is vital that the physician has the capacity to discern between the part and the whole, the reflexive and the normative, the normal and the pathological. As Canguilhem suggested long ago, the demarcation between physiology and pathology only has, and can only have, clinical meaning when: “The disease is a negatively valued behaviour to a concrete individual living being in a polarised relationship with his environment [...]. A disease only exists of the whole organism” (Canguilhem 1978: 182).4 Over the last few centuries, the strong libido curandi and enlightened materialism, as well as the instinctual approach-avoidance from metonymic inversion, has isolated clinical medicine from natural philosophy and from the “exact” natural sciences (Foucault 1991: 192).5 For that reason, many would argue that contemporary ex vivo, in vitro, in silica, fragmentary biomedicine is a special or immature science (Gil 1984, Hackling 2002: 87). Whatever happens to be the case, medicine is nowadays the theatre of many and diverse robust research programs supported by evolutionary theory and by (good and happy or self-delusionary and bad) clinical (self-)evidence (most necessary and valid at the bedside) and by unavoidable elementary naturalistic experience. Still, what we physicians most need nowadays are pragmatic and objective intermediaries – the classical example would be a Hempelian-kind of cover or bridge law – multiply realised between beliefs and theories (like organismic unity, Darwin’s evolution, Mendelian heritance, immune surveillance and individuality, etc), natural experiences (clinical “findings” bound in the cognitive “apparatus” of the physician) and laboratorial experimental protocols, artefacts, specimens and data. But this “technical” perspectivism is one side of the coin of modern 3

Broadly speaking, I endorse a seminal but restrictive notion of ethical experience as the one born in the free, conscious and responsible human encounter between humans (Marques, in Lessa et al. 2010). 4 (Author’s transl.). This conceptualization was later radically developed by one of his best students, Michel Foucault: “[T]he establishment in medical discourse of relationships among a certain number of distinct elements, some of which involve the status of physicians, others the place of institutions and the techniques of which they speak, others their standpoints as subjects, subjects who understand, observe, describe, teach, etc, [...] and it may be affirmed that the establishment of relationships among these different elements is achieved by the medical discourse itself” (Foucault 1969: 72). 5 For the concept of metonymic inversion also see “Problems of Evidence and Scientific Representation”, to follow.

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organic/funcctional talkingg; what abou ut the other? The human side, the clinical listeening and interrsubjective tallking? Let’s address the scieentific narrativ ve first. The ppresent trend toward a pluralistic vview of scieentific beliefss has been vvindicated by y several historical caase studies, likke those presented by Hasokk Chang (Chaang 2003; Marques 2011c, 2012).. Brancusi’s modular “sself-supporting g” block sculptures offfer a visual representation of how I enviision the charaacteristics of both barooque and Darw winian medicin ne as they devveloped over time. t The baroque: beeginning in epistemic beliefs (like thheological rellationship between the Creator and created c beings) against the eevolutionary, beginning b with Darwinn. The baroqque body wass still markedd by the fou ur humors (phlegm, bloood, yellow biile and black bile) b and later bby a fibrous or o nervous structure. Thhe modern boddy is the prostthetic body. H However, in sp pite of the enormous ddifferences, thhe cognitive operations aare the same in both ontologies. T The graph beloow offers a rep presentation off this:

Figure 1.3-1

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The direction of explanation (here read from the bottom up) is opposed to the direction of causation. Medical knowledge, as knowledge about a singular bio-psycho-social individual, implies the intersection of physical/natural, human/social and biomedical sciences, producing a kind of “tree of knowledge” which seems to express an epistemic duality of medicine. Both ontologies imply universal ens rationis like cognitive operations and models (Lloyd 2007) and physico-chemical processes and data. For these to work towards the better care of the patient, they require a unity of the sciences, as existed before the Modern Age. After all, Galileo, Descartes, Boyle and Newton were all natural philosophers, applying the principle of the unity of knowledge. These ideas are expressed by Klee (1997: 93). These notions are important in medical practice because at the end of the day, the physician is dealing with heterogeneous narratives involving horizontal and vertical causation. Until the “scientific revolution”, in the system that evolved from epistemic beliefs, heat was understood as an element, and fever was caused by and defined as the accelerated motion of blood. Also facing vertical determinations, fibre irritability was based on its vis insita and explained the contractility of the muscles, the feverish spasms and the sensibility of the nerves. The galenic theory of plethora justified bloodletting, etc. Of course, many other beliefs were active, for example on putrefaction and fermentation, mechanical operations in digestion, brain secretions and ethereal substances, other microstructures of the body like membranes, empty cells, growth, development and generation (here exemplified by preformism) etc. Returning to Fernando Gil’s thinking on evidence, as introduced at the beginning of this essay and stated elsewhere, self-evidence is defined as an index veri and index sui (Gil 1993, 1996; Marques 2002). This sort of “inner apperception”, or immediate evidence, is opposite or complementary to scientific or objective proof. I will deal with this point below.6 Of course, in bedside medicine, every clinical and technical decision conveys values and builds up (or annihilates) meanings: diagnosing diseases is a value-laden activity. If we define the clinical field as a holistic “space of differentiation” – that is, of individualisation7 – we are arguing that it is opposed to the normalised, metric space of the physical or natural sciences with all its paraphernalia of machines and, by the same token, contrasting it to the social or moral sciences. I believe Hannah Arendt expresses this predicament fittingly in the following text: 6

I am not referring here to the so-called “narrative kind of explanation”, typical of the historical (Danto), biological, and prudential/clinical sciences. 7 I will not be able to deal with this difficult subject here.

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Venatio, Vexatio Within the category of means and end, and among the experiences of instrumentality [...] there is no way to end the chain of means [...]. Meaning, on the contrary, must be permanent and lose nothing of its character, whether it is achieved or, rather, found by man or fails man and is missed by him. (Arendt 1989: 154)

The clinical rapport, the living story and the patient’s narrative necessarily capture different subjectivities and gravitate around subtextual forms of complexity, namely a (nosographic) ontology of diseases and a code or theory of symptoms (ideally pathognomonic), especially as the latter must be caused by, correlated with and explained through underlying physicochemical factors, biological agents and physiological and morphological structures. These values (relations, meanings, virtues, judgements) and facts (specimens, samples, data, measurements, information) define a robust division in and of medicine. The presupposition here is not only the unity of the sciences, but also, and more importantly, the existence of natural categories or borders. However, if the rigid classification of all beings in nature into unyielding categories of living, non-living and dead matter is impossible, this type of rigid classification is still more difficult in the medical field (Klee 1997, Van Frassen 2010: 244). During the Early Modern and Modern eras the salient (medical) objects were not only blood circulation, bone anatomy and muscle physiology (which are massive classes), but membranes and tissues (and, much later, cells and genes), so the boundaries between elements was not always clear. As in Bichat’s programmatic prescient motto: “It is nature not science that draws the line between tissues” (Dagognet 2004: 205).8 The implications of this idea are much deeper and stronger than anticipated. Firstly, it implies that “experimentation is a continuation of theory by other means” (Van Frassen 2008: 112). Secondly, it suggests a pragmatic minimalist conviction that science “represents the empirical phenomena as embeddable in certain abstract theoretical structures [...] describable up to isomorphism” (Van Frassen 2010: 239).9 Historically, there was, I feel obliged to mention, a crossbreeding between venatio (the Hippocratic hunt for the diagnosis and treatment of the disease) and vexatio (the Baconian method for the advancement of 8

Compare this idea to “C’est la nature, non la science qui a tracé une ligne de démarcation entre les tissues” avec “J’ai cherché le plus possible, en classant les fonctions, à suivre le marche tracé par la nature elle-même ” Bichat (1812: C). This is a norm that cannot easily be applied to sub cellular (ultramicroscopic) structures (Rheinberger, 2000). 9 Could this mean that medicina practica (and Bernard’s experimental medicine) is the continuation of medicina theorica by other means?

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learning).10 But sometimes the hunter falls into his own trap. In previous publications, I have already discussed the two idolae (venatio/vexatio) a propos of the excision of meaning from medicine (Marques 2002). I have tried to show that the sciences, and by necessity medical sciences, aim to “cut nature at its seams” (Klee 1997). When concluding this essay, I will put forward a foundational theory that I believe can balance physicality, evidence, and narrativity in clinical practice (and in guiding medical decision making). In spite of the obvious global trends, one must hope that post-academic science, “by renouncing all transcendental pretentions to authority, and presenting science as an epistemic institution trading publicly in credibility and criticism” (Ziman 2000: 329), may and should favor a culture propitious for social responsibility in science, in our culture: less voracious, more respectful.

Problems of evidence and scientific representation First of all, I would like to present a few preliminary remarks about the conjunction of scientific representation and scientific evidence. Picking up on the arguments of Bas van Frassen and Fernando Gil I will stress that clinical facticity, judgement and decision, even when well grounded, are ultimately derived from an act of perception. Fernando Gil believes that perception “reconstitutes in another form the hallucinatory regimen that holds sway over the initial real-I, a regimen in which ‘the existence of the representation already serves to guarantee the reality of that which is represented’” (Gil 1998: 9). Thus, in his proposal, scientific evidence is often not based on fact, as commonly believed, but on “readings” or interpretations obtained from (visual and other) observations, representations, and practical (empirical, experimental) interventions.11 For example, as the microscope does not “show” the actual tissue or cell, so the fMRI does not “show” the brain. Both demonstrate pictorial representations of the objects they examine; the cell/tissue in the case of the former, the brain in the latter. Gil referred to the primum movens of these images as hallucinations. 10

On venatio and the thesis of the body feelings as the first criterion of knowledge, in Hippocrates: “For it is necessary to aim at some measure. But no measure, neither number nor weight, by reference to which knowledge can be made exact, can be found except bodily feeling” (On Ancient Medicine, IX, Loeb Edition, transl. W. Jones). About vexatio: “The secret operations of nature are better revealed under the torture (vexatio) of mechanical arts than in their own vulgar course” (Bacon: 98). 11 Observations are not neutral or crystal clear and interpretations are not easy, as the history of astronomy and microscopy and medicine shows (Hacking 1983).

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Stretching a Freudian argument, the Portuguese philosopher concludes: “The representation would be, per se, proof of the reality of that which is being represented: this is the very style of the ontological argument!” (1998: 9). This epistemic circularity of good (or bad) self-evidence underlies and concurs with the hermeneutical cycle of science mentioned by van Frassen. Consider now, at the empirical level, this philosopher’s convergent argument: objective clinical and lab facts and quantified data are, mostly, derived from or expressed as (subjective) probabilities (recall the Cochrane initiative and EBM). Van Frassen insisted that nature only presents frequencies. He added that to be able to read any series of events, the investigator must also determine his own (self-)location (Van Frassen 2010: 157).12 Thus the putative conversion of softer data into harder data arises from the iteration and confirmation of observations by the same and/or other experts. And so, clinical medicine qua science exhibits the scope of measurement as representation, and simultaneously generates its own authority. One is left asking if this is the Archimedean position so eloquently described by Hannah Arendt (Arendt 1989: 262, 322).13 One can also enquire how this centrality of the imagination, the idea of the hallucination as an operator of evidence proposed by Gil, and van Frassen’s concept of scientific representations as public hallucinations, got its hold. One easy way of understanding how the phenomenon of hallucination became important in scientific investigation is by observing how data obtained using the microscope influenced popular conceptions at a global level. When invented in the 17th century, the microscope did not simply offer a window into micro-worlds, but acted as a tool for the creation of new optical phenomena, even new “creatures”, like homunculi or fibres (in the medical world). These were two important proto-scientific hallucinated “objects” (Van Frassen 2010: 105, 109).14 However, the microscope did not “show” these entities; it showed images of them, and this is why they are classified as hallucinations. Another optical phenomena 12 This absence of an ethos or habitus of proper self-location and perspective may explain, partially, the misguided history of the decisions regarding HIVcontaminated blood transfusions in several countries. This case offered a new – non-local - very stressful situation (and a public fearful hallucination of contagion) and caused a kind of dissociation between belief and conviction. This could explain the misbehavior of very highly-positioned medical and political authorities in France (Ricoeur, 2001: 289; Gil 2006). 13 If we return to the Archimedean point, all our activities “would appear not as activities of any kind but as a kind of process, so that [...] modern motorization would appear like a process of biological mutation in which human bodies gradually begun to be covered by shells of steel” (Arendt 1989: 322-3). 14 These ideas are presented in greater detail in Marques 2011c.

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demonstrated by lens was that surprisingly, rainbows are not objects, events or processes, but images. Van Frassen’s structural-empiricist position draws a fine line between observables and non-observables. He stated that “seeing an image is a code for a classification of experiences that refers both to the spontaneous judgement on the experiencer’s part, and to what is really happening to that person” (Van Frassen 2010: 107, 110). These ideas can be applied to the cell today, and its ultrastructure, the “fibre”, which was “seen” everywhere two or three hundred years ago. Even today, using microscopes with better optics and fewer chromatic aberrations, these microscopic structures are still invisible. We are forced to infer their structures by collectively hallucinating them as tangible objects. However, despite the fact that the images obtained and presented are collective hallucinations, they are not viewed as representations (or images), but as realities. The only difference many people consider to exist between these structures and things seen with the naked eye are their minute size (Van Frassen 2010: 105).15 However, as every young clinician or amateur astronomer knows, observation is a skill (Hacking 1983: 180). Without incurring Quine’s relativism and indeterminacy (of translation, etc), van Frassen shows that every bona fide scientific representation is opaque, with a subject term, a relational predicate and a term for the second relatum. Indeed, any (scientific) representation is not only content-ridden and contextual, relational and intentional, but over-determined by its use and also, most importantly, definitionally inexhaustible (van Frassen 2010: 26). The “hallucination” or image of a real thing, like a tree reflected in a lake, is (and has) a local invariant (the tree), as opposed to a desert mirage or a rainbow, which has no local invariant. The original tree will look the same to all observers, whereas no two people in different places see exactly the same coloured arc. Curiously, direct parallels can be seen between the construction and use of apparatus by Dutch artists and van Leeuwenhoek’s development and application of the microscope. Just as the artists used apparatus like the camera obscura, and developed new canvases and pigments to produce particular types of paintings/representations, van Leeuwenhoek developed specific lenses for each experiment, honed to help him make a certain type of microscopic observation or experiment. Van Frassen affirms that what held for not-copy qualified images (because they are not susceptible to being exactly re-produced) must also hold for images obtained in scientific reproduction, like the images Newton 15

See also the section “A system of foreclosures”, below, and Bruno Latour’s proposal for the determination of a post-Mertonian or post-modern science.

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obtained with his lenses: “essentially the very same sort of thing as Newton did with his prisms–namely, imitate the ability of nature to create public hallucinations” (van Frassen 2010: 105ff). However, we can still ask about a cell, a van Leeuwenhoek’s “fibrin” image or fibre model, or any other “copy qualified” image: “Is it really of something real or is it not? That is always a question of fact transcending the experience itself” (idem). Where should one draw the line separating microscopic realities from artefacts, observables from non-observables? I would dare to say that at a certain level of discourse, the representation provides its own foundational (implicit) criteria, pre-text or sub-narrative, like Wittgenstein’s old Paris (now in Sèvres) standard metre bar. An extension of van Frassen’s typology is presented in the following table: IMAGE CATEGORIES Modif. from Bas van Frassen, Scientific Representations, 2008: 104 Graven Private Public hallucinations Images images Painting “CopyNot “copyPhoto qualified” qualified” After-image Sculpture Dream Reflection Rainbow Hallucination? Shadow Mirage Standard meter Fata Morgana

insita) Fibre?, tissue, cell Table 5.3-1 Can mimesis, copy, good form, the pregnant analogy,16 be capable or powerful enough to build deductive, inductive or abductive architectonic models, artefacts, apparatuses or philosophical tools? Do we not need first and foremost the negation, subtractive or differentiation (différance) operator?17 The theory on the fibrillar or fibrous structure of the body (and 16

By this “scale”, I mean several operations centered on perceptual readiness and Gestalt qualities, like figures from ground extraction, completion, symmetry, that is, generally, good forms’ saliency and pregnancy. 17 Fernando Gil wrote extensively on the hallucination in Mimésis e Negação (1984) and in Traité del’Évidence (1993) he proposed “Sa structure signifiantel’opérateur-X-est une forme vide et une force nue-ne l’affuble pas d’un coefficient d’illusion, au contraire elle est la condition de son opérativité” (145), thus capturing (in his own system) an essential opposition between cognitive object and cognitive operation.

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the associated spasms and paroxysms) seems to have been determinant of a kind of hallucinatory bodily experience with general reflexes in medicine, and was understood in early modern Europe as complexion and general “constitution” (Pilloud and Courvoisier 2003; Marques 2011a, b, c, 2012). Was it Gil’s intuition that led him to adopt some of Bion’s proposals and claim that one of the main operators of (self-)evidence is hallucinatory? (Gil 1996: 142).18 To close this theme, the phenomenological cycle should be mentioned: the Hippocratic method, as described clearly by Plato in Phaedrus, implied a cycle: from the part to the whole to treat the part. This easily enables a metonymic pars pro toto operation. The complementary cycle, the hermeneutic cycle (from the whole to the part, to understand the whole), compensates for that regression or reduction. I would advance one example of a historically relevant metonymic inversion: the conversion of Bichat’s axiom (a clinical event is visible because it is a local lesion), into Broussais’s axiom, which postulates that the organ, being the space of the disease, is the causal space (Foucault 1991: 192).19 Summarising the ideas presented above, it can be said that images or representations can be collectively hallucinated as things, as something tangible (van Frassen 2010: 105). I have mentioned briefly the fibre model and referred generally to the cell. However, at a lower level, the gene (a concept, not, prima facia, a natural form), in today’s genomics, presented itself as a good mediator, able to cross the chasm separating sensible macroscopic behaviour from intelligible infracellular programs and groves. Its generativity is of course present on several scales (phenotypically: epigenoma, proteoma, metaboloma, etc.) and provides a replicable attitude; namely, the geneticisation of life, Futuyama’s post-humanity. Notice, however, that the gene has less power of facticity and objectivity than the cell; it is of a more metaphorical-metonymic kind than the cell and the fibre. It is a hybrid object (in Latour’s terminology), without the reality of the fibre or the cell. Thus the gene is deprived of their saliency (sensual, perceptual, clinical), so the pertinent opposition changes from depiction/description to fact/value. With this transfer we are entering the 18

In the original French: “La croyance hallucinatoire fait un recours permanent au témoignage indubitable des sens. [...et…] est marquée (index sui), elle s’impose et dispense de la preuve (index veri), elle renvoi intrinsèquement au sensible, sous ses différents modalités [...]. En même temps qu’elle la produit, l’hallucination rassemble la signification de l’évidence (l’attention, l’ostension, etc.) en une vécu unique, à savoir, un sentiment d’intelligibilité dont la satisfaction de l’esprit est la pierre de touche. Ce sentiment est l’évidence à proprement parler (Gil 1996: 217). 19 In the original : “la maladie est de l’espace avant d’être pour la vue.”

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domains of the community, of common good, of ethics, that is, finding a continuity, a hybrid space between naturalisation and socialisation (Latour 1997).20

Sources and sieves of the clinical meaning There are questions like “who are you?”, the question addressed to every newcomer, that show the human and humanity’s “embracing” of action and speech (Arendt 1989: 178). I am interested in the problems of first person authority and in the anonymity and asymmetry in medicine.21 This question has a sui generis effect, demanding the recognition of the patient as a person with a name. Giving/getting a name – a personal (referential) meaning – opens the door between the depiction and the description, the private image and the public hallucination in every new “House of the Commons” (Gil 1998: 467). Is it possible that scientific theories could cross-match with narrative approaches along the indexicalities of the selflocated logic space of the (research) subject?22 Can scientific artificiality and (clinical) alterity meet (with) hospitality? I bring the issue of hospitality to the foreground. I hold that when the doctor receives a patient, he/she must be willing to give and hold back nothing, in a similar manner to the way in which Lot received the strangers who came to his house in the Biblical dictum from Genesis 19: 3

[Lot] entreated and urged them greatly until they yielded and [with him] entered his house. And he made them a dinner [with drinking] and had unleavened bread which he baked, and they ate.4 But before they lay down, the men of the city of Sodom, both young and old, all the men from every quarter, surrounded the house.5 And they called to Lot and said, Where are the men who came to you tonight? Bring them out to us, that we may know (be intimate with) them.6 And Lot went out of the door to the men and shut the door after him7 And said, I beg of you, my brothers, do not behave so wickedly.8 Look now, I have two daughters who are virgins; let me, I beg 20 Medicine, technomedicine, Big Pharma, contemporary science and technoscience have been developing quickly in peace and war, for good and for bad. Does this depend only on the uses and applications that we, the humans, choose? No: we are well acquainted now with the reality of unexpected risks and collateral damages (recall thalidomide with its genetic toxicity; much later, almost by serendipity, the drug was found to be a useful agent in Multiple Myeloma). 21 For body and narrativity see Marques (2011b). 22 About indexicalities: “a narrative has a plot; that is, it does not only announce a series of separate events or states but also asserts meaningful causal states among them” (Charon 2006: 49).

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of you, bring them out to you, and you can do as you please with them. But only do nothing to these men, for they have come under the protection of my roof.9 But they said, Stand back! And they said, This fellow came in to live here temporarily, and now he presumes to be [our] judge! Now we will deal worse with you than with them. So they rushed at and pressed violently against Lot and came close to breaking down the door.10 But the men [the angels] reached out and pulled Lot into the house to them and shut the door after him.11 And they struck the men who were at the door of the house with blindness [which dazzled them], from the youths to the old men, so that they wearied themselves [groping] to find the door. (1987: 2122)

This text leads us to ask, who is the host? Who is the hostage? What is the role of the word, of the oath, of hospitality, of the witness? It raises other questions such as how to face fears and priorities and empower - as much as “indicated” - the vulnerable? What are the clinical roles, now, if any, of philia, of compassion? The renowned ethicist, Jean-François Malherbe, said long ago that one central aporia of medicine is wishing to care for the body that we are, when it is competent just to treat the body that we have (Malherbe 1990: 47).23 Besides, the difficulty with NBM is the programmatic clinical subordination of physicality to narrativity, of scientific discourse to rhetorical stance, that is, to a literary, even fictional, cognitive take on the human condition (Bruner 1990; Stern 2004), which is a controversial issue nowadays. To deal with this conflict I will explore the herba/verba metaphor, the objective/subjective polarity. According to Paul Ricoeur, Jerome Bruner and Daniel Stern, this implies a schematisation that individuates people and “fixates” affections and a plot or fabula that has a sequence and calls for dissonance and incorporating all the dimensions of a drama: actor, plot, object, scene, instrument, and temporality. For Rita Charon, an internist and the leading NBM clinical scholar, the dominance of narrativity over physicality is central (Charon 2006: 48).24 When addressing this last point 23

In the original: “prétend soigner le corps que nous sommes alors quelle n’a de compétence que pour soigner le corps que nous avons.” 24 I am grateful to Richard Zaner for introducing me to Prof. Charon’s pioneering work (Marques 2008, 2011b). A note about clinical meaning (cp clinical versus statistical significance): the diagnosis of a disease - except in the most straightforward cases - is almost always an exercise in comparing interpretations of the deployment of complaints, symptoms and lab/image data over time and its projection on a nosographic conventional map of organismic functions and pathologies.

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I will not comment on the narratives in terms of the epistemic determination of concrete cases or the perception of moral particulars.25 A physician should always remember the unique nature of the individual patient. Because there is no insight without empathy, we know that when treating a patient, for instance an elderly frail one, even when attention is focused on physiognomy, behaviour and clinical details, communication should not be forgotten, as this is vital to finding out the will, wishes and best interests of the patient. This is the domain of first person narrative, but also of scientific akribeia, acumen, and restraint, as the Hippocratic aphorism reminds us: primum non nocere. The physician can thus strive to provide the best possible care (at home, if possible). This evidence (tested at the bedside), and the tacit knowledge it incorporates, must balance the naturalistic, scientific hard data. With this attitude, it becomes much easier for the physician to incorporate the patient’s desires into care, options bringing science and narrative together so that patients’ quality of life is understood as a qualitative factor when care is decided. Willingly or not, we physicians, scientists and technicians are compelled to face, not to avoid, basic fundamental and/or foundational interrogations. We must ask: what are the main distinctive characters of lab practice? What separates labs’ material practice from a fundamental perspective? (Gil 1998). With Rothbart (2007) and others, Gil concludes that bench practice also expresses seminal epistemological choices.26 Referring to Kant’s Third Critique, he claims that the scientific tool has its own transcendental substance and premise, its own philosophical promises and effects. As a consequence, the divisions between objectivity and subjectivity, natural and non-natural, machine and non-machine, are continuously challenged by new technologies that produce new tools, new facts, new signals from noise, thereby delivering and allowing new signs of experience (and, asymptotically, new justified beliefs). One is left to ask: are these real/factual entities or hallucinated ones, or read in the end as signatura rerum? This is the status and function of the instruments of post-Mertonian science, including biomedicine: science discovers through the production of artefacts. Indeed, John Ziman demonstrated that current commodified, spectacular science no longer reveres the Mertonian virtues (communalism, universalism, disinterestedness, originality, scepticism;

25 For instance, analysing the meaning or the (methodological) absence of it, nouns and pronouns can represent the temporal wholes, indexicals and quantifiers, the place of the individuals, or the discourse of subjectity. 26 In the original: “Des activités de fondation, dejà à l’oeuvre dans la fixation du fait scientifique.”

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CUDOS). On the contrary, post-academic science carried out in this field often seems to ignore those values (Ziman 2000: 44). A different way of describing the mutation of western science is through Bruno Latour’s idea of hybrid or impure objects, a collage of natural and cultural determinations (Daston 2000). FROM MERTONIAN SCIENCE TO POST-ACADEMIC KNOWLEDGE Adapted and modified from Bruno Latour, Nous n’avons jamais été des modernes, 1997 Non-separability of the common Nature Transcendent production of society and nature Continuity between naturalization Society Imanent & socialization Purification

Mediations

Liberty–Combinatory of hybrids

God

Deus absconditus

Hybrids & enlarged scientific “democracy”

Table 6.3-2 I would sum up this part of my argument as follows: science is and must be understood as it is carried out. That is, modern laboratorial research and the epistemic attitude of the scientist (with the microscope, the cell sorter and the computer) not only express implicit or explicit theories and material and cognitive cultures, but also build new ones. As products of new tools, these new cultures often ignore philosophical tools; these, as well as lab specimens, are Cartwright’s nomological machines. This situation seems to push the old clinical stance in medicine even further away from the bedside, leading to an unavoidable “scientific” dissociation: an oscillation between corporeality (or physicality) and narrativity (or reflexivity), between the metonymic and the holistic. Of course, these developments call for new instances of scientific imagination, creativity and responsibility.27 One of the principle features of NBM as presented by Rita Charon is the importance of literary texts and the production of written texts. 27 And this somehow justifies the contemporary emphasis on human rights, patient rights, the humanisation of medical practices, patient-centered medicine, reflexive medicine, narrative medicine: how to avoid the worst sorts of collective fears and hallucinations amid this enormous global experimentum humanum? Do we need a new social natural contract (Serres) or an enlightened catastrophism (Dupuy)?

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However, the affectations are not only expressed or repressed feelings and voiced/received wordings. In medicine and nursing, one is left to ask: are not the issues encountered in the wards or the consulating rooms genuine “scripts” or plots? This is not an often-posed question. We know that in every kind of human intercourse, often the important problems/stages/processes are pre-intentional, non-verbal and nonnarrative, even when this intercourse is a hermeneutic exercise that requires the extraction of stories which cannot be expressed in words for various reasons. Examples of this type of hermeneutic exercise are the techniques used when dealing with babies, with foreigners who have not mastered the local language and with many neuro-psychiatric situations.28 And most of the kairic moments, instants or occasions are ineffable, preverbal, non-utterable (Stern 2004). However, despite limitations that may be imposed by particular circumstances, as Richard Zaner impressively showed (1988) and Rita Charon proposes, narrative, from anamnesis to close reading, can be of the greatest importance: The relationships that develop in medicine, as it turns out, bear an uncanny resemblance to the relationships between tellers and listeners [...]. What literary studies give medicine is that our intimate medical relationships occur in words. [...] Yes, doctors touch patients and do rather extraordinary physical things to them, but the textuality and not the physicality defines the relation. [...] In fact we are misled when we try to conceptualize medical relationships as if they were based on love, desire, power or commerce. They are based on the complex texts that are shared between doctor and patient, texts that encompass words, silences, physical findings, pictures, measurements of substances of the body, and appearances. (Charon 2006: 53)

Narrative medicine aims to build a space of differentiation, a space for the realisation of the person, because according to Charon, by definition, “a narrative has a plot. It does not only announce a series of separate events or states, but also asserts meaningful causal states among them” (Charon 2006: 48).29 Some would say that the old division herba/verba is still valid:

28

Evidence of this can be seen in Bruner (1990) and Stern (2004) following the trail of Gadamer, Ricoeur, Certeau and others. 29 But compare the following stronger affirmations: “Plots are functions of the beholding of events and not a function of the narrated events themselves. […] Causality is always a human invention” (Charon 2006: 48); “plot is meaning” (49); “the narrative impulse does not excavate the unknown beyond recognition. […] It

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VERBA

Kher, sark, soma…

Psyche, thymos, pathos…

Manus medica; “surgery”

Istoria, anamnesis, narrative

Curing; not caring

Presence; caring experience

Organism, mechanism, organ

Person: bio-psycho-social…

Physical sciences

Moral sciences

“Physical” treatments

Moral treatments; talking cure

Table 7.3-3 By its very nature, the clinical situation requires presence, listening, dialogue, caring, intervening – knowingly -with respect, benevolence and proficiency, but the pragmatic and practical demands of real-life situations are contingent, heterogeneous, diverse, uncertain. Thus, as Hannah Arendt suggested many years ago, what: In each of these instances saves man -man qua animal laborans, qua homo faber, qua thinker–is something altogether different [...]. From the viewpoint of the animal laborans, it is like a miracle that it is also a being which knows of and inhabits a world; from the viewpoint of homo faber it is like a miracle, like the revelation of divinity, that meaning should have place in this world. The case of action [...qua thinker the...] possible redemption from the predicament of irreversibility [...] is the faculty of forgiving. The remedy of unpredictability, for the chaotic uncertainty of the future, is contained in the faculty to make and to keep promises. (Arendt 1989: 237)

Shall we reverse Petraca’s injunction and repeat Pinel’s gesture and moral treatment,30 to free and empower our patients, recoiling from the exclusive preoccupation with the outcomes, efficacy and costs of the “physical” approaches and move towards the sick person? How can full voice be given back to the patient without transferring or transforming doctors’ responsibilities? Many recent inquiries into the “re-foundation” of medicine celebrates uniqueness and respects the unity of the event while representing it” (Idem). Texts from p. 122 are also worth referring to. 30 Moral or non-physical treatments meant, during the French Revolution, the emblematic release of mental patients from chains, and the general reduction of physical and violent measures as “treatment” (Marques 2011b).

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entail, generally, the consideration of (at least) two main discourses: the illness perspective (which places the patient at the centre) and the disease perspective (which places science and the disease at the centre). The main issue is to discover how to harmonise a scientific representation with a first-person “dramatic” narrative.31 Today, EBM embraces mathesis and statistics as the language of science, including the science(s) of the clinic.32 It is known that EBM, with its excessive claims, has as many affinities with Derrida’s letter (écriture), as with his and Girard’s pharmakon. However, on its busy workdays, current EBM is (or should be) clinically the most demanding of the medical situations. This apparent paradox becomes obvious because some of its commandments are “contra-natura” and “blind” – not least because of the “curse” of the statistical indifference principle (visible, for instance, in the current attack on the normative role and the rule of clinical equipoise, making virtually opaque, in those contexts, the defence of “my patient’s best interest”). Surely, to address correctly the fundamental question “What is tormenting you?” all the scientific intelligence and evidence available must be articulated with and inserted into the singular narrative of the patient. This compulsory symbiosis is illustrated in the following table: EVIDENCE-BASED MEDICINE

NARRATIVE MEDICINE

Galilaic perspective

Illness perspective

Nullius verba

“What is tormenting you?”

Cannibalizes (time, care, etc.)

Gives (care, time, etc.)

Focus: disease/biology

Focus: the individual patient

Facts; Rightness

Values, Goodness

Table 8.3-4 31

The question is, as usual, fundamentally a question of truth. As Primo Levi said in some of his acidic and moving autobiographical papers : “mon métier quotidien [...] m’a accoutumée au concret et à la précision, à la nécessité de ‘peser’ chaque mot avec les scrupules de ceux qui effectuent une analyse quantitative ; surtout il m’a habitué à cet état d’âme qu’on appelle l’objectivité, c’est-à-dire, à la reconnaissance de la dignité intrinsèque non seulement des êtres, mais aussi des choses, à leur vérité, qu’il faut reconnaitre et ne pas déformer, si l’on ne veut pas tomber dans le générique, dans le vide et le faux” (Levi 2002: 42). 32 By sciences of the clinical I meant not only the téchne or ars medica, but also Clinical Epidemiology, qualitative methods, phenomenology, ethno-methodology, philosophy, etc.

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Note that narrative medicine must make explicit the subjective indexicalities, the instance of realisation of the subject–giving voice to the patient – with a plurality of stories, with a phenomenology of the scarred body. Moreover, NBM is today probably the via regia to explicit and objective “individuation” of the patient. In fact, it is a concrete tool, as opposed to the wishful thinking of genomic medicine. NBM is also more demanding scientifically. As John Ziman wrote years ago, statistical hypotheses do not need to be legally responsible to be proved. A statistical argument only tells us if the data is consistent with the theoretical hypothesis. Therefore, a statistical argument per se (without the empirical and/or physio- or etiopathological data) will never be enough to establish new knowledge or a new treatment. So the problem of the foundations of medical practice still remains. I will address this issue to close my paper, bearing in mind that “medicine is at its core a moral enterprise grounded in a covenant of trust” as Crawshaw, Pellegrino et al said years ago.33

A system of foreclosures34 As mentioned in the introduction, this essay arose from reflection on my clinical practise and reading the works of Fernando Gil, Dick Zaner, Rita Charon and the philosophers Frederick Grinnell, Daniel Rothbart and Bas van Frassen. Like many others, I was moved by the unbearable silence over the evaded or ignored question of meaning in medicine. These philosophers address science as it is performed, that is, the material culture of modern laboratorial research and the epistemic attitude of the scientist. Interestingly, Rothbart begins with the notion of techné as the process of creating artefacts through the skilful use of materials and plans, an essential aspect of inquiry; indeed, modern science discovers through the production of ever more artefacts. Drawing on the work of Ian Hacking and Nancy Cartwright, Rothbart is one of the philosophers who address the centrality of the design plans of the instruments, of diagrammatic reasoning and of visual narratives. Generally, Grinnell and Rothbart take the same stance as Fernando Gil. They ask a similar primary question as Gil when reflecting on the object, the specimen, the process of validating data: “As far as the foundations are concerned, what do we make of lab’s material practice?” 33 A medical decision is always an action of calibration and fine discernment, because “la valeur est toujours liée a une certaine occultation du principe que la fonde” (Nabert 1971). 34 Foreclosure is used here according to Lacan’s definition and as used by Fernando Gil.

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In one paper, Gil concludes that bench practice expresses foundational epistemological choices shown in the trail projected by the scientist35 (Gil 1998: 184). So, citing Kant’s Third Critique, both Gil and Rothbart elegantly claim that the scientific tool has its own transcendental “blueprint”. This conclusion requires one to ask how not to (ab)use this transcendental “genetic” and how to renounce all narcissist pretentions to authority in clinical science. One is left asking: are these processes the results of programmatic realist dispositives, incommensurate with Charon’s hermeneutic intersubjective procedures? Should not today’s medical science try to reconcile them, as the medical axiom of the unity of science demands (pace Hannah Arendt and many others of the Stanford Group)?36 Is NBM not the best available means of giving back a voice to the (fragile) patient, to avoid the reification of his body and the fusional violation of the borders? Incommensurate with the ideologies of post-humanity and commodification in the biomedical sciences are the foundational horizons with which I will conclude this essay, recalling the fundamental or foundational violence of medicine.37 The structure and articulacy of my argument have the old Hippocratic triangle at their core and assume the following premises or hypotheses woven together. Before presenting my theory, I would like to dedicate a few words of gratitude and explanation.38 I owe the Giges motif to Dick Zaner. For the 35

In the original “des activités de fondation, déjà à l’oeuvre dans la fixation du fait scientifique […] ne se trouve codifié en aucun manuel d’instructions, il consiste dans ce qu’il faut faire pour satisfaire l’esprit chaque fois qu’il est question d’identifier et de reconnaître: il est dans cette mesure même légitime de parler d’activité de fondation” (Gil 1998: 184). 36 As Arendt wrote: “But the action of the scientists, since it acts into nature from the standpoint of the universe and not into the web of human relationships, lacks the revelatory character as well as the ability to produce stories and become historical, which together form the very source from which meaningfulness springs into and illuminates human existence” (Arendt 1989: 324). 37 I base this proposal on Derrida’s arguments: “Le pharmakon et l’écriture c’est donc bien toujours une question de vie et de mort [...] C’est que la mort du père ouvre le règne de la violence. En choisissant la violence–c’est bien de cela qu’il s’agit dès le début–et la violence contre le père, le fils–ou l’écriture parricide–ne pu manquer de s’exposer lui-même (Derrida 1972: 130, 182). This can be compared to Pigeaud, “La Médecine, dans la théorisation de sa pratique, a fait beaucoup pour la rencontre du ‘se-sentir-soi-même,’” and “Être médecin, c’est être capable de quantifier le qualitatif” (2008: 128). 38 I gratefully declare the origin of the ideas to be presented to the spirit of our team (colleagues and nurses, liaison psychiatrist, social worker, etc.) and to talks

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overall configuration, I am obliged to Fernando Gil’s last philosophical works, where he presents the concept that the true foundations of a domain are foreclosed and occulted by apparent, visible fundaments. For instance, in the political domain, the sovereign power of life and death over a nation’s subjects is “masked” or controlled by the social contract, “supported” by the ideals of human rights.39 The following is a preliminary diagram, framed by the well-known Hippocratic aphorism about the clinical “triangle”. The three lines presented here begin with (i) the patient feeling the intense (unnameable) symptom or saturated phenomenon, which may promote the anonymity and reification of the body and of the patient himself. This can be expressed in the following manner: in the case of a person suffering from a severe migraine, the malady may lead them to feel: “I do not feel anything else! I am this migraine!” The carer/clinic may assume the position: “I will cure your migraine” – often reducing the patient to the symptoms of the malady. This stance can be altered if the clinical relationship assumes a dialogic dimension. (ii) Then the disease is approached via the metonymic/metaphoric tropes, acting as operators of diagnosis fixation, and so empowered by the naturalisation of illness and the discourse of nature. Still, the joint effects of individuation and Hippocratic good may overthrow the reification of the disease. (iii) The outcome is that the founding violence that may be initially seen to be applied and/or implied by the physician’s agency, including Giges's temptations and falls, articulated with and veiled by a word, the oath, can be nullified and Hippocratic goodness obtained (Soares 1999; Marques 1999). Representations of my ideas are schematised in the graph below:

with my colleague Jorge Melo, the late Prof. Fernando Gil and my patients from the Haematological Ward of the Instituto Português de Oncologia. The Classicists António Pedro Mesquita, José Trindade dos Santos and Sir Geoffrey Lloyd helped my critical reading of the Hippocratic Corpus greatly (Lloyd 2003, 2007). The notion of Hippocratic goodness I owe to Diego Gracia Guillén. 39 I am following Fernando Gil’s lessons (Marques 2008). Regarding this application of Giges’s myth, I follow Richard Zaner. I am indebted to Professor Diego Gracia Guilén for the idea of a Hippocratic ethic. See also Agamben (2009).

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THE SYSTEM OF MEDICAL NEGATIONS (A SKETCH) Hippocratic Triangle Patient/Client Disease/Illness Physician

Occluded Foundations Intense and/or Saturated Symptom Metonymic inteligibillity Violence (and selfviolence)

Pragmatical Basis or Fundamentals

Regulatory Ideas or Utopias

Clinical Dyad, Relation or Encounter

Individua(liza)tion Patient Nonanonimity

Disease/Illness reification

Individual (and Public Health) Hippocratic Good (anti-Giges attitude)

The Oath (sacred word)

Table 9.3-5 One “lesson” is that three different regulatory ideas or ideals may supplement and reinforce each other (or not, depending on how authentic, professional and firm the relationship is): goodness, individuality and health. Why should these three elements not compose a system? After all, they combine corporeality, representation and narrativity. Perhaps they could be seen as offering a unique opportunity to place the patients’ interests and values, phronesis (prudence) and epikeia (singularity, alterity) in a central position in medical science and narrative ethics. In such a manner they could unify the soft (yes, soft) Galilaic perspective with the hard alterity of the patient’s perspective, place, and experience. While this essay uses concepts taken from NBM, it also supports a thesis of epistemology put forward years ago by Fernando Gil: After Descartes, no one better than Bachelard could have evaluated the price that the subject pays to raise himself to rationality. […] There is no scientific thought without repression. […] All coherent thought is constructed on a system of solid and clear inhibitions. There is happiness in rigidity at the base of a culture’s happiness. (Gil 1984: 385 quoting Bachelard 1938)

I believe the quest for the truth, the good and the beautiful is still the honour, mandate and fate of Clinical Medicine.

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Conclusion Here is a summary of the main arguments in this discussion about the progressive loss of meaning in medicine. (i) There appears to be a raptus of the meanings of being a body and of having a body in biomedicine. (ii) The meaning of scientific representation, evidence and proof must take into account the cognitive and public status of hallucination and the process of legitimisation through the (self-asserted, putative) authority of nature (as opposed, for instance, to obligatory, formulaic or clerical authority). I subscribe to John Ziman’s description of post-academic science and hope that at the end of the day, it will be possible to establish a stable space for social responsibility in biomedicine (Ziman 2000: 329). Maybe this will help us to find again (iii) the meaning of the clinical sciences and the virtues of philia and kairos (Marques 2002: 65, 198, 406; Stern, 2004). These, I suggest, are reflexive conditions of non-indifference and domesticated uncertainty. The naming of these virtues is to articulate the former dimensions by repeatedly nesting the last foundational “system”, which aspires to Hippocratic goodness. The regulatory ideas/utopias presented above can perhaps be seen as a quest to articulate (under the umbrellas of Reflexive, Humanistic, or Narrative Medicine) corporeality, proof, and narrativity. I believe I have shown that, at least for clinical medicine, an understanding of the compromise of the humanity of each and every patient implicit in the Hippocratic Oath allows the physician to honour the word.

Works Cited Agamben, Giorgio 2009. Le Sacrement du Langage. Archéologie du Serment. Paris: Vrin. —. 2002 [1978]. Enfance et Histoire. Paris: Payot. Amplified Bible 1987 [1954], Grand Rapids Michigan: Zondervan. Arendt, Hannah 1989 [1958]. The Human Condition. Chicago: Chicago University Press. Bachelard, Gaston 1938, A Psicanálise do Fogo. Trans. Maria Isabel Braga. Lisbon: Estúdios Cor. Bacon, Francis 1996 [1620]. “Novum Organon”, Francis Bacon, A Critical Edition of Major Works. Ed. Brian Vickers. Oxford: Oxford University Press. Benjamin, Walter 1992 [1936]. “O Narrador”, Sobre Arte, Técnica, Linguagem e Política. Trans. Maria Amélia Cruz. Lisbon: Relógio de Água, 27-57.

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Bichat, Xavier 1812. Anatomie Gènérale. Vol. 1. Paris: Chez Brosson. Bruner, Jerome 1997 [1990]. Actos de Significado. Lisbon: Edições Setenta. Canguilhem, Georges 1988. Le Normal et le Pathologique. Paris: PUF. Charon, Rita 2006. Narrative Medicine. Oxford: Oxford University Press. Chang, Hasok 2003. “Preservative Realism and Its Discontents: Revisiting Caloric”, Philosophy of Science. 70: 992-912. Dagognet, François 2004 [1970]. Le Catalogue de la Vie. Paris: PUF. Daston, Lorraine 2003. “Attention and the values of nature in the Enlightenment”, The Moral Authority of Nature. Eds. Lorraine Daston and Fernando Vidal. Chicago: University of Chicago Press, 100-126. Daston, Lorraine and Vidal, Fernando, Eds. 2003. The Moral Authority of Nature. Chicago: University of Chicago Press. —. 2003 [1997]. Hospitalidade. Trans. Fernanda Bernardo. Viseu: Palimage. Derrida, Jacques 1972 [1968]. “La Pharmacie de Platon”, La Dissémination. Paris: Seuil. Duchesnay, François 2012 [1982]. La Physiologie des Lumières. Paris: Garnier. Foucault, Michel (1990) [1961]. La Naissance de la Clinique. Presses Universitaires de France: Quadrigue. Gil, Fernando 1998. “De l’Épistemologie à la Philosophie par le laboratoire”, Des Sciences et des Techniques: un Débat. Eds. Roger Guesneries and François Hartog. Paris: Cahiers des Annales 45: 173184. Gil, Fernando 1998a. Modos da Evidência. Lisbon: Imprensa Nacional/ Casa da Moeda. Gil, Fernando 1996. Tratado da Evidência. Lisbon: Imprensa Nacional/ Casa da Moeda. Gil, Fernando 1993. Traité del’Évidence. Grenoble: Jérôme Millon. —. 1984. Mimésis e Negação. Lisbon: Imprensa Nacional/Casa da Moeda. Grinnell, Frederick 2009. Everyday Practice of Science: Where Intuition and Passion Meet Objectivity and Logic. Oxford: Oxford University Press. Hacking, Ian 2002. Historical Ontology. Harvard: Harvard University Press. —. 1983. Representing and Intervening. Cambridge: Cambridge University Press. Klee, Robert 1997. Introduction, to the Philospohy of Science: Cutting Nature at his Seams. Oxford: Oxford University Press.

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Latour, Bruno 1997 [1991]. Nous N'avons Jamais Été des Modernes. Paris: La Découverte. Lessa, Renato et al. 2010. “L’Hôpital et la loi morale”, Philosophie au Portugal. Ed. Maria Filomena Molder. Paris: Rue Descartes, 77-102. Levi, Primo 2004 [2002]. L’assymétrie de La Vie. Trans. Nathalie. Bauer. Paris: Robert Laffont. Lloyd, Geoffrey 2012. Being, Humanity and Understanding. Oxford: Oxford University Press. —. 2007. Cognitive Variations. Reflections on the unity and diversity of the Human Mind. Oxford: Oxford University Press. —. 2003. In the Grip of Imagination. Oxford: Oxford University Press. Marques, Manuel S. 2012. “A pedra parideira e a panaceia universal: Robert Boyle e a constituição da ciência instrumental”, Kairos. Revista de Filosofia & Ciência, 5: 91-139, 2012 (Paper delivered at the Seminar: “Acção Integrada Hispano-Lusa. El surgimiento de la ciência moderna en Europa: G.W. Leibniz.” (Chair persons: Juan Antonio Nicolàs - Universidad de Granada, Marta de Mendonça – New University of Lisbon). Also available [online] at http//www.leibniz.es/A%20pedra.pdf. —. and Oliveira, A 2011. “Medicine in the Tropics: José Pinto de Azeredo’s Essays on Fevers and Other Manuscripts” paper presented at Portuguese Physicians in the Early Modern Period: Geographical Expansion and Medical Prudence, The Warburg Institute, London, -19 Feb 2011 (submitted). —. 2011a. “O Carvalho, o Mato e a Floresta: Das fundações da clínica no Traité Médico-Philosophique sue l’Aliénation Menatale de Pinel de 1809”, Ph. Pinel: Tratado Médico-Filosófico sobre a Alienação Mental. Lisbon: Colibri, 22-42. —. 2011b, “Herba non Verba. Probing the Foundations of Medicine”, Revista Port. Psicanálise. 31:1: 93-118. —. 2011c, “Compte-rendu of Bas van Frassen: Scientific Representation. Paradoxes and Perspectives”, Philosophia. @LISBON. 1: 201. —. 2009. “Uma Sombra o Precede. Notas sobre hospitalidade, suporte e profissionalismo”, Razão e Liberdade. Homenagem a Manuel J. Carmo Ferreira. Vol. 1. Lisbon: CFUL 257-282. —. 2008. “Minando as Fundações: três utopias reguladoras da Medicina”, Razão Apaixonada. Homenagem a Fernando Gil. Lisbon: Imprensa Nacional/Casa da Moeda, 357-417. —. 2002. A Medicina Enquanto Ciência do Indivíduo, Ph..D diss. FM Lisbon University.

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—. 1999. “O umbigo simbólico”, Hipócrates e a Arte da Medicina. Ed. Maria Luísa Soares. Lisbon: Colibri, 91-108. Nabert, Jean 1971. Éléments pour une Étique. Paris: Aubier. Pigeaud, Jackie 2008. Poétique du corps: Aux Origines de la Médecine. Paris: Les Belles Lettres. Pilloud, Séverine & Louis-Courvoisier, Micheline 2003. “The intimate Experience of the Body in the Eighteenth Century: Between Interiority and Exteriority”, Medical History 47: 451-472. Price, Nathan et al. 2010. “Systems Biology and Systems Medicine”, Essentials of Genomic and Personalized Medicine. Eds. Geoffrey Ginsburg and Huntington Willard. San Diego: Elsevier, 131-141. Rheinberger, Hans-Jorg 2000. “Cytoplasmic particles: A trajectory of a Scientific Object”, Biographies of Scientific Objects. Ed. Lorraine Daston. Chicago: Chicago University Press, 270-294. Ricoeur, Paul 2002. “Citation à témoin: la malgouvernance”, Le Juste 2. Paris: Esprit 289-297. Rothbart, Daniel 2007. Philosophical Instruments: Minds and Tools at Work. Urbana & Chicago: University of Illinois Press. Sharp, Lesley 2007. Bodies, Commodities and Biotechnologies: Death, morning and human desire in the reality of organ transfer. New York: Columbia University Press. Soares, Maria Luisa (Ed) 1999. Hipócrates e a Arte da Medicina. Lisbon: Colibri. Stafford, Barbara 1993 [1991]. Body Criticism: Imaging the Unseen in the Enlightenment Art and Medicine. Cambridge Massachusetts: MIT Press. Stern, Daniel 2004. The Present Moment in Psychotherapy and Everyday Life. New York: Norton. Tunhas, Paulo 2007. O Essencial sobre Fernando Gil. Lisbon: Imprensa Nacional/Casa da Moeda. Van Frassen, Bas 2010. Scientific Representation. Cambridge Massachusetts: MIT Press. Zaner, Richard 1988. The Ethics of Clinical Encounter. USA: Prentice Hall. Ziman, John 2002 [2000]. Real Science: What It Is and What It Means. Cambridge: Cambridge University Press.

THE THIRD CULTURE JOÃO LOBO ANTUNES

In 1959, Sir Charles Snow delivered the Rede Lecture at Cambridge, which he called the “The Two Cultures”. A contrast was made between the [l]iterary intellectuals at one pole–at the other the scientists, and as the most representative, the physical scientists. Between the two a gulf of mutual incomprehension–sometimes (particularly among the young) hostility and dislike, but most of all lack of understanding. (Snow 1959: 4)

The topic had, in fact, been the object of an old dispute, begun when Mathew Arnold delivered the same lecture in 1882, which he called “Literature and Science”. To Arnold, literature was the “criticism of life”, and culture the “best that has been thought and said in the world” (Arnold 1969: 6). T. H. Huxley voiced his opposition to Arnold’s proposal in the lecture “Culture and Education”. As far as he was concerned: literature should and inevitably would step down from its pre-eminent place in education and science, not culture, would supply the knowledge which is necessary for an age committed to rational truth and material practicality. Thus science would supply the very basis for the assumption of modern ethics.

Snow inarguably agreed with him: it was the scientists’ spirit, “tough and good and determined to fight it out at the side of their brother man”, which “has made to regard the other (i.e. the literary) culture’s social attitudes as contemptible”. F. R. Leavis, in a vituperous diatribe, spoke out against Snow. The unleashed controversy was discussed in a superb essay by Lionell Trilling. For Trilling, the future was not in the “bones” of the scientists, as Snow claimed, but in the bones of the literary genius. Years later, in a second examination of his work, Snow admitted to the existence of a third culture, somewhat akin to the “social sciences”. This was not, however, explicitly developed, as it is, for instance, in Jerome Kagan’s recent book, aptly titled Three Cultures.

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Others have proposed a third culture, a companion to those advanced by Snow. In an article published in Science a few years ago, Kelly discussed a third culture, an offspring of science. He called it “pop culture” or “nerd culture” seeded in technology for technology. Its purpose is to create novelties as a means to truth and experience. It creates new tools faster than new theories, because tools lead to novel discoveries much quicker than do theories. Kelly points out that this has become a new way of doing science. While science and art generate truth and beauty, technology generates opportunities and both the relevance and significance of this pop culture to technological medicine is immediately evident. John Brockman, a literary agent to many famous scientists, has also submitted his own version of a third culture, a form of “hautevulgarization”, which is being developed by those scientists and other thinkers of the empirical world who through their work and expository writing are taking the place of the traditional intellectual in rendering visible the deep meaning of our lives, redefining who and what we are.

These are the new public intellectuals. A few years ago I wrote an essay which I called “Três culturas (Three Cultures)”. I was referring to the medical, business and political cultures. The first, medical culture, is evidently derived from our Hippocratic heritage, and sustained by the principles of solidarity and altruism, the practice of which is today adequately questioned – mostly from those outside the profession. It is also a culture of professionalism, presently a favorite topic of many medical educators, as they rightly believe its values are now dangerously threatened, especially by the two other cultures I have alluded to. Sociologists like Freidson have incisively questioned whether the statute of privilege we fight so hard to keep is morally justified. Business culture was first recognized in a now classic paper by Arnold Relman, published in the New England Journal of Medicine in 1980. Relman highlighted what he called “the New Medical-Industrial Complex”. Let me simply state that healthcare is big business. In fact, as someone said, “caring is an art, medicine is a science, and healthcare is a business”. The basic issue is how we are able to deal with questions such as the conflicts of interest that necessarily arise when doctors have become more and more involved in this lucrative business. Finally, political culture refers to intervention by governments and politicians in the way doctors do their jobs, which actually started at the beginning of the last century, when the health of populations became too

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serious a matter to be left to the exclusive mercy of the physicians. Moreover, it became apparent in Europe, particularly in the so called welfare states, that free universal access to healthcare, like education, had an undisputable moral basis. You may say I have already discussed my three cultures, thus making it difficult to justify my choice of title for the lecture. Actually, when I initially planned it, I was thinking about it differently: for today, I want to focus on two cultures – the scientific basis of our medical practice and the economic construct that is increasingly shaping our behavior as physicians. I wholeheartedly believe we need this third culture, and you will soon understand its increasing relevance to the present scenario. Let us simply call it the humanistic culture; in others words, humanities taken in their broadest sense. These include languages and literature, history, philosophy, religion, cultural studies, archeology, art history, the history of music, and the study of drama and cinema. According to J. H. Plumb, editor of a book entitled Crises in the Humanities, some parts of political science, government, geography, anthropology and sociology – the “humanistic social sciences” – are more closely identified with the humanities than with other, more quantitative aspects of the disciplines. “Umana cosa è”: so began Boccaccio’s Decameron, and this beautifully expressed the centrality of the human experience, of which I am reminded every time a patient sits before me. Let me begin with a story. A few weeks ago I saw an old couple in my office. The husband was a distinguished looking man well past his 80th birthday. He mentioned that he had come to see me a few years ago because of lower back pain. Some doctor had told him that he needed surgery, but I had said that with adequate exercise there would be no need for it. He did well and was very grateful for the advice. This time he looked at me and said simply: Doctor I have cancer–cancer of the bladder. The surgeon told me that I was cured, and there was no need for any additional treatment, but I have an unbearable, excruciating pain in my groin. He said to me, and another neurosurgeon confirmed it, that this was due to a herniated disc.

Both told him that there was no need for a follow-up consultation. In brief, the patient was being dismissed despite the fact that he was suffering from an unbearable pain. It became immediately apparent to me that his cancer had grown and invaded the pelvis and surrounding nerves. And I said so to him. He looked me straight in the eyes and said: “Doctor, you don’t know how much I am suffering.” I replied: “Yes, sir, I do, I do.” And yet, I immediately realized that in fact I did not know, and in truth, it was

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impossible for me to know. The wife, terrified, spoke for the first time: “Doctor don’t give up on us,” as if she was experiencing her husband’s suffering. So the only thing I could say was: “I will not forsake you.” The fact that I had clearly said I would not be giving up on them brought tremendous relief to the old couple. Simple soothing words, embracing a sort of pastoral duty, words and practices that we doctors, from the most eminent to the neophyte, the young, self-assured, technologically seduced physician, seem to have sadly forgotten. At the same time, a most uncomfortable feeling seemed to have possessed me. Indeed, after almost 40 years of practicing a complex, difficult, risky, daring, surgical specialty, I have become more and more disappointed by my science. Mind you, I have witnessed a lot of progress in genetics, molecular biology, genomics and pharmacogenomics, and the future of personalized medicine seems to be fast approaching. Yet, as far as cancers are concerned, we are facing the same challenges, the same dismal results, and after a multitude of trials we always come back to the conclusion that the most important prognostic factor is how much you take out during surgery. Of course we are deluded, mystified by the wondrous technological progress, particularly in the imaging of the disease, which has assumed an iconic forbearance. Images have replaced words. Patients now sit in front of me and when I ask what is wrong with them, they simply point to their exams: “It is here doctor.” And when I say “I don’t want to see this”, they are surprised and annoyed. So I add: “Tell me your story.” They say, somewhat relieved, “Oh that! Well, I guess I should start at the beginning. I don’t know how much time you have for me.” This is a rather interesting situation – I do have the knowledge, but time seems to be an equally precious commodity – we are all so often time-starved. In Saul Bellow’s Ravelstein, a patient, in fact the narrator of the novel, lying in an ICU bed, sick as a dog, thinks: I might be one of these cunning patients whose master plan is to drink up the doctor’s attention. The sick man sees that the physician must portion it out, and he also recognizes a special need to get ahead of his sick and dying rivals.

As I get older I have come to realize that disease is usually a monotonous, repetitive phenomenon, even if, biologically, each case is unique. This distinction is crucial. So what increasingly fascinates me is the narrative of the disease, and this is in fact an evolving dialogue, as the disease unfolds

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and assumes different disguises. Many years ago Wilfred Trotter wrote: “disease often tells its secrets in a casual parenthesis.” That is why, I believe, “narrative medicine”, as it has been proposed and developed by Rita Charon, may play a decisive role in the contemporary scenario. Its definition clearly states its purpose: “medicine practiced with the narrative competence to recognize, absorb, interpret and be moved by the stories of illness” (Charon vii). From this definition I particularly emphasize “to be moved”, as compassion is so sorely absent from contemporary ethical discourse! Of course it is easier to show our patients the face and location of the enemy in a MRI scan. Image is a map that is easily deciphered, but there is always a bit of “disbelief” when they realize I have to open the skull – “How do you do that doctor?” And this is followed by the trivial, but not futile question: “How much hair do you have to cut?” And yet it is hard for them to understand that the image reveals only the tip of the iceberg, and even the most sophisticated magnetic resonance will not uncover the minute nests of malignant cells hiding both near and far. So I assure them, “I will take as much as I can safely”. “Why can’t you take it all out?” “Because I will hurt you, you may not be able to speak, to move your hand or to read, you will be different”. No words can accurately convey the full picture of this “otherness”. In fact, no doctor is able to imagine it, as this is an unpredictable transformation. Yet, I often find the transfiguration of the illness in people’s descriptions of their own disease (“autopathographies”) like the painfully breath-taking narrative of the great historian Tony Judt, who recently passed away from his motor neuron disease. In the context of my own specialty, the narrative has some intrinsic limitations, as it demands the invention of words, images or metaphors to describe the unspeakable, even to me, an erudite, experienced surgeon, who was brought up to treat words, any words, with the utmost delicacy, and speaks to patients with literary precision. And I will not delve into that most eloquent form of communication: silence. It is particularly hard to describe, to justify, to predict the everso subtle changes in personality, temper, character that one may observe after our interventions upon the brain. Of course one may apply multiple psychological tests, inventories of capabilities, attitudes or emotions, but none of these grasp the uniqueness of what we call dignity. “Doctor this is not the man I married”, or “I fell in love with”. Or “Doctor, my son seems to have regressed ten years and behaves like a disturbed child, or a rebellious adolescent”; all acquired social graces melted away. And we talk, talk, trying to build a new order; in fact, more appropriately, a new chaos, feeling, uncomfortably, that science can do so

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little and only words can provide solace. The decisive battle, our Waterloo, has probably been lost, and we are left with a sort of guerilla warfare, often made busier by the enigma of the normal brain, rather than the miseries of suffering. So we doctors sometimes find a cheap comfort in the entertainment brought by our new magnificent tools, our “pop culture”. We are the new seafarers, Vasco da Gama, Fernando Magalhães, navigating in the brain, no longer lost inside the skull as I was when learning my craft, the brain having no nuances of color or texture, no street signs telling us that this is the area of speech, or “stay away, this is the visual cortex” - “tiger country”, as a famous neurosurgeon used to say. We now follow narrow corridors, we tiptoe towards the enemy, we catch him by surprise. Of course, I still speak to the enemy, I curse him. In fact, I drive in the Operating Room in this atmosphere of hate, because we cannot have any mercy, any compassion towards this enemy. When I come out of the O.R., I go back to words, as I have to speak to my patient’s family. I learned long ago that the first words are conveyed silently by the face and specifically through the eyes, and eyes are so important. There is a wonderful expression in Henry James’s “The Golden Bowl”. Speaking of the millionaire father, Adam Verver’s, eyes, he writes “eyes that both admitted the morning and the evening in unusual quantities” (2013: 108). Even before you start speaking, a lot has already been said, so I have learned that one can never deny through words what the eyes have already said. “Doctor, did you take it all out?” is usually the first question, and then: “How did it go? Will it come back?” “How will we manage it?” The patient, once awake, repeats the same questions in the same order. Later, the words will be found to wrap in attractive packages the adjuvant technologies, the sophisticated chemotherapy, which acts like napalm bombs, or the cyberknife, with the deceiving precision of a laser-guided missile. So we compose truths and half-truths, always warning against the unpredictability of the enemy, of the interplay between the host and the mysterious cancerous bacillus. So we often face the situation of “hope against hope”, a favorite expression of George Steiner, which he actually borrowed from William James (without quoting). I have often repeated that the way to deal with hope is a neglected topic in contemporary bioethics. Hope is tied to another, often unspoken reality – time. Time left, time given, time bought, time dreamed; time.

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Hope only survives in this context when it is shared, and in no circumstance can one, as a doctor, kill it, by running away, or by showing undisguised skepticism. We do not have to lie, but quite often we have to resort to compassionate discretion. This is, at least for me, a delicate balance, as I have a tremendous, I will even say molecular, inability to lie. So the narrative continues its course, day after day, like a play written and simultaneously acted, often–a daily improvisation. It is in this vertiginous labyrinth of emotions that I have found much support for my humanistic culture. As Kagan points out, humanities do their work by communicating profound insights about human nature that should be incorporated into ethical positions, political actions and daily rituals. In fact, they perform several critical functions: they remind society of its contradictions, articulate salient emotional states, detect changing cultural premises, confront the deepest moral dilemmas, and document the unpredictable events that punctuate a life or historical data. In the preface to my first book, years ago, I wrote that the medicine practiced by a cultivated doctor tastes different. In his essay “Chauvinism in Medicine”, written in 1902, Sir William Osler purposefully said: “In no profession does culture count so much as in medicine, and no man needs it more than the general practitioner, working among all sorts and conditions of men” (285). In fact, this is what worries and disappoints me in the new generation of doctors, as I look at my younger colleagues and see that they so frequently lack the emotional vibrato that I have felt all my life. Their emotional response seems to be so bland, as if they are uninterested or afraid to plunge into the world of emotions or to address another’s solitude. Bertrand Russell’s advice is invaluable: “In human relations one should penetrate to the core of loneliness in each person and speak to that” (146). Their approach is circumstantial. They remain outside as if they have not learned the dialect of suffering or do not want to get burned in this cauldron of hell. It is so much simpler to show the CT scan, and say “this is a 50 year old man, etc”. Sometimes they are surprised when I ask to see the patient in the flesh, that I want to “smell” him, as I say, like a hunting dog. I believe that, to a great extent, this lack of curiosity, the flatness of their emotional response, is due to their inability to be enthused by the narrative of the disease, and intrigued by its “subterraneous weave of metaphors, of symbolisms, of ritual gestures” (Steiner).

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Because they do not know how to ask, how to obtain a narrative, they do not know how to answer questions from outside the limited scope of their medical knowledge and their technological wonders. Even so, they have difficulty realizing that they are no longer the sole owners of that knowledge. Sitting next to the patient there is now an invisible colleague, who never worked in a hospital, never gets angry, knows all the answers and assumes no responsibility. It is called “the internet”. Its impact on doctor-patient relationships is tremendous, and doctors have yet to understand that quite often they are merely giving a second opinion. We have still to absorb into our professional culture how this access to information (note: not knowledge, and even less so wisdom) is challenging our authority. Patients now go even further, as more and more they “google” their doctors and easily declare: “Doctor I know everything about you” as they read what other patients have posted about their experiences, the unchecked balance of successes and disasters. I am curious about myself, the way Montaigne was, but I have been completely indifferent about the me that inhabits this cosmic, virtual, unforgiving universe. The truth is, and I would love to keep it this way, that at the end they invariably say to me: “I am in your hands, treat me as if I were your mother, or your son”. Humanities may play a decisive role in dealing with one of the most delicate questions of contemporary medicine. Humanities, someone said, “recognize uncertainty as a prevalent human emotion, for some a chronic mood”. Uncertainty is an unexpected and perplexing gift of modern biology, and disease is equally stochastic, indifferent to pristine diagnostic algorithms, to the security of layered proofs. This is the folly of the apostles of so-called “evidence-based medicine”. Uncertainty has somehow replaced ignorance, the same ignorance whose dimension we could not appreciate before, because so little was known. And yet the old French bard had already said it centuries ago: “rien me n’est sure que la chose uncertaine”. The ignorance that we disguised with self assurance, nourished by our professional authority, is now too naked to escape detection. In fact, strange synapses seem to connect four realities of contemporary medicine: uncertainty, risk, error and hope. So what did I gain by cultivating this humanistic culture long before I became a doctor? I would say that perhaps the most significant advantage was the way it fine-tuned my ability to hear other voices, to understand the full meaning of discourse. I return to Bellow and his Ravelstein: “You have to be learned to capture modernity in its full complexity and to assess its human cost.”

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Now, one may be more or less genetically endowed with this capacity. Only few will have Mozart’s perfect pitch. But I certainly owe much to education, beginning at home with the training we got at the dinner table to talk about serious matters with intelligence and humor. So I have become apt to talk to anybody from the fisherman to the executive, able to detect the baroque harmonies of Bach or the dissonances of Schoenberg. And I learned so much from works of fiction. Moby Dick, for instance, is where I found the echoes of my fears in the operating room as well as the impetus to relentlessly pursue my elusive whale, my leviathan. I know of no other more beautiful eulogy of the priestly character of our profession, its heroism and cowardice, its hubris and humility, as in Camus’s La peste. No textbook of bioethics deals with the very essence of pain and suffering, distinct phenomena frequently confused, as Tolstoi and his The Death of Ivan Ilyich. Rosamond, another character in Bellow’s novella, declares, “reading that story is like walking a mountain of broken glass.” As Martha Nussbaum pointed out, ethicists seem to despise fiction; they find it too soft for a philosophical argument, but I have often thought that I could write a textbook of bioethics solely using fictional works. Considering philosophy as a branch of the humanities, I have learned to maintain a limpid view, the ability to look beyond appearances, and ask questions, knowing in advance that the answers will probably be new questions. I got this from books, but most of all from the precious time I spent with our beloved friend Fernando Gil. Furthermore, from the humanities I uncovered the path where I could find some consolation for the solitude I experience as a surgeon. When you are operating on a difficult case, you are deeply alone, even when the room is full of people, each carrying on with his or her own business. I have also learned much from the poets, best explained by Wordsworth’s saying: a poet should be “a man speaking to men”. Besides our own poets, I have taken refuge in the likes of Auden and Szymborska. Quite often, as a patient sits before me, I am reminded of a poem by this marvelous Polish poet: “A Contribution to Statistics” Out of a hundred people those who always know better –fifty-two, doubting every step –nearly all the rest,

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I trust you now understand why, more than ever before, we need this third culture.

Works Cited Antunes, João Lobo 1999. “Três culturas”, Numa cidade feliz. Lisboa: Gradiva. Arnold, Matthew 1969 [1882]. Culture and Anarchy. Cambridge: Cambridge University Press. Bellow, Saul 2000. Ravelstein. New York: Viking Press. Brockman, John, Ed. 1996. The Third Culture. New York: Simon & Schuster. Charon, Rita 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press. James, Henry 2013 [1904]. The Golden Bowl. London: Sovereign. Kagan, Jerome 2009. The Three Cultures: Natural Sciences, Social Sciences and the Humanities in the 21st Century. Cambridge: Cambridge University Press. Kelly, Kevin 1998. “The Third Culture”, Science 279: 992-993. Osler, William 1906. “Chauvinism in Medicine”, Aequanimitas with Other Addresses to Medical Students, Nurses and Practitioners of Medicine. Philadelphia: Blakiston’s Son and Company, 277-306. Plum, John Harold, Ed. 1964. Crisis in the Humanities. London: Penguin Books. Relman, Arnold 1980. “Intensive Care Units: Who Needs Them?” New England Journal of Medicine 302: 965-966. Russell, Bertrand 1967. The Autobiography. Vol. 1. London: Allen and Unwin. Snow, Charles Percy 1959. The Two Cultures and the Scientific Revolution. Cambridge: Cambridge University Press. Szymborska, Wisáawa 2000. Poems: New and Selected. Trans. Stanislaw BaraĔczak and Clare Cavanagh. New York: Harcourt Brace and Company. Trilling, Lionel 2000 [1962]. “The Leavis-Snow Controversy”, The Moral Obligation to be Intelligent. Ed. Leon Wieseltier. New York: Farrar, Straus and Giroux. Trotter, Wilfred 1941. “Art and Science in Medicine”, The Collected Papers of Wilfred Trotter. Ed. W.R. Trotter. London: Oxford University Press.

PART II THE RELEVANCE OF COMMUNICATION AND NARRATIVE IN MEDICINE AND HEALTHCARE

CAN YOU DIE FROM NOT BEING LISTENED TO?* TERESA CASAL

“Can you die from not being listened to?” The answer is: “Yes, you can.” And if this sounds less empowering than Barack Obama’s presidential slogan, it is not necessarily so: it calls for mutual responsibility, and points out to how vital it is to listen. For if you can die from not being listened to, then it means that speaking and listening are interdependent, that the speaker requires a listener and that, in a non-authoritarian environment, we should constantly switch roles: listen to others so that others listen to us. Narrative does not exist in and of itself any more than a musical score exists as music in and of itself: only when played does the score become music. Similarly, narrative requires a voice to articulate it and ears to listen to it. The analogy of music illuminates how basic the collaborative interplay between listening and speaking is. As Daniel Barenboim reminds us, playing in an orchestra is a constant exercise in listening so as to play better. And it was the perception that such a skill is urgently needed in a world ruled by entrenched divides that led him and Edward W. Said to *

The first draft of this paper was presented at a “Narrative Matters” conference hosted by the Centre for Interdisciplinary Research on Narrative (CIRN) at St. Thomas University, Fredericton, New Brunswick, Canada, in May 2010. Having long hesitated to speak publicly about my experience, but drawn to the interdisciplinary nature of the conference, I learnt much both from listening and from being listened to. I am particularly grateful to all those in the audience who showed me that telling a story that is sadly shared by many could serve practical purposes: it could be used in the training of health care providers, and it could in turn enable others to articulate their own stories, just as I had needed others’ narratives to tentatively articulate my own. It was in this spirit that I welcomed the invitation to contribute to the interdisciplinary conference on “Narrative and Medicine: Illness and Dialogue”, held at my home university in September 2010. The audience was just as attentive and responsive, although the institutional channels through which such stories may reach medical students remain largely to be created. The conference was itself a stepping stone in that direction.

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found the West-Eastern Divan Orchestra in 1999.1 For, as he argues, “everything is connected”: [t]he art of playing music is the art of simultaneously playing and listening, one enhancing the other. This takes place on both an individual and a collective level: the playing is enhanced by the listening and one voice is enhanced by another. This dialogical quality inherent in music was our main reason for founding the [West-Eastern Divan] Orchestra. (Barenboim 65)

This skill is a precious one to the young Israeli and Arab musicians who have grown up untrained to listen to one another’s experiences and are now drawn together by their common passion for music. As a model for collaborative interaction, it is also valid in many other interpersonal and intercommunal settings, not least in the doctor-patient relationship that prompted the question in my title. I therefore propose “the art of playing and listening, one enhancing the other” as an enabling model for us to consider the relational aspect of narrative and its ethical implications in medicine. My interest in the interaction between narrative and medicine has been driven by a desire to listen to others’ narratives so as to somehow approach much that remained inarticulate in my own experience. What follows is my first attempt to put a painful experience into words: I have a story to tell, a question to ask, and some reflections to share. The story and the question emerged from within a medical setting, but the question is relevant in every context involving interpersonal relations: it points to the interplay between narrative and power, and consequently to the need to examine, and remain alert to, the ethical demands it places upon us, both as authors and recipients of narratives.

My story In July 2008 I underwent surgery for the removal of an ovary. I was due to be discharged within two days, but my condition failed to evolve according to expectations. I complained of persistent pain all the way 1

The West-Eastern Divan Orchestra was founded by Daniel Barenboim and Edward W. Said under the auspices of Weimar European Capital of Culture 1999, ten years after the fall of the Berlin Wall. It brought together young musicians from Israel, Palestine and neighbouring Arab countries. It has been based at the Foundation for Three Cultures in Seville since 2003. See Barenboim (60-89 and 181-184, and http://www.west-eastern-divan.org/).

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down my right shoulder, had nausea, my abdomen was hard and swollen, and I was passing bright red blood. I had had abdominal surgery before and had not experienced such post-surgical symptoms. I was given painkillers, but the pain persisted and its cause was neither explained nor investigated; I kept vomiting, had increasing difficulty in breathing and was very worried about the bleeding, which the gynaecologist attributed to so far non-existent haemorrhoids. Throughout my hospitalization, my complaints were dismissed as psychological and a sign of stress. This being a private hospital, there were no medical rounds by other doctors, so I was left hostage to a single doctor’s judgement, and to the patronizing dismissal of my complaints by the head nurse, who treated me like a spoilt child and a non-compliant patient. Although none of my symptoms had subsided, I was discharged on day three, one day after I had been due to leave the clinic. This was a Saturday and I was told to return on Tuesday for a check-up. My condition deteriorated, and phone calls to the gynaecologist proved useless, since she merely prescribed more medication and insisted that a colleague of hers would examine my alleged haemorrhoids on Monday or Tuesday; eventually, another doctor was called and, upon hearing the description of my symptoms, he said that I had to be taken to hospital immediately, and sent an ambulance. I was taken to a public hospital, which lacked sophisticated technology, since all the funding was being channelled into building brand new facilities, which are now in place. After examining me, and with just X-rays in the way of technology, the surgeon on duty decided he had to operate on me. I was not too keen on the idea, so to persuade me of the need for such a drastic course of action, he tried to impress on me the reality of the symptoms I had been complaining about: “Is your tummy usually this swollen and hard? Is that thin little voice your normal voice? So, I have to operate on you.” This diagnosis was based on what Jerome Groopman calls “low-tech thinking […] deeply rooted in the world of the physician’s five senses” (Groopman 28). I learned later that the surgeon was very much at a loss as to what he would find; he simply knew that there was something seriously wrong that called for immediate intervention. He planned to ask the gynaecologist, a former colleague of his, to attend the operation. So, one of the most important conversations in my life was also a very sparse one, with meaning conveyed in non-verbal ways. This was a doctor who looked me intently in the eye as he tried to impress on me the urgency of the situation before I signed my consent. I could see from his

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expression, more than from anything he said, that it was serious. As I scrutinized his look, I found myself asking the question, “Am I going to survive?” He did not say anything, merely turned his head to the left and then to the right, or vice-versa. I interpreted the gesture as meaning that I had a fifty-fifty percent chance of surviving and if I wanted to seize my chances, I had to trust him. I signed the consent form. I had the answer to my question when I woke up in the recovery room. But prognosis was still reserved and this was only stage one in the way of survival. As it turned out, I had had my intestine perforated in the course of the first operation, and the ensuing peritonitis had in the meantime evolved into sepsis. The infection had spared my brain and limbs, but was rampant in my thorax and abdomen. My lungs, particularly my right lung, were drenched with fluid, hence my pain and difficulty breathing. Having failed to listen to my complaints before, the gynaecologist now insinuated that I had not complained enough. A couple of days later I woke up in an intensive care unit, where I had been put on a life-support machine. This was stage two in saving my life. When I was stable enough, I was transferred to a third public hospital, closer to my family. There, stage three happened in the form of a largespectrum antibiotic that finally managed to curb the infection. It was also there that I had reconstructive surgery of the intestine some months later, and where I was again fortunate enough to meet a surgeon who combined technical expertise with personal insight. Once, after the reconstructive surgery, he agreed to see me two days before I was due for an appointment, since I had been feeling an odd pain in one of my wounds and was unsure whether it was healing properly. He checked it and then said, “After what’s happened to you, no wonder you haven’t made up your mind yet as to whether you should trust doctors at all”. I protested that I trusted him, but he insisted; “No wonder, no wonder”. We had never met before the previous summer; he was an affable if guarded sort of person, and not many words had been exchanged between us on “what had happened to me”. But I was immensely grateful to him for making that mental journey towards the sources of my insecurity, for sensing the utter helplessness I felt and the implications of a breach of trust between doctor and patient. So, I nearly lost my life due to one doctor, one nurse, and one hospital. And I survived thanks to the good care of many doctors, many nurses, several physiotherapists, three hospitals, and more than a little help from family and friends. The best health care professionals I encountered in the course of my ordeal were those who honored the common humanity between us, who tended to my wounds while respecting me as a person;

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the worst were those who erected a divide between them and me, who tended to my body as if it belonged to a nobody, as if better to shelter themselves from the thought that they, too, might one day be the patient. Let me return to the best among them and what made them so. The people that they were, they were of different temperaments, some talkative, some circumspect, some more demonstrative than others – but it was the quality of their care and attentiveness that made me feel both cared for and whole in my wounded body, and I felt and expressed my deep gratitude for it. I cannot stress enough how vital this attentiveness is: as we all know, it is important in every interpersonal relationship in our life, from birth to death; it is all the more important when you are seriously ill, struggling for life, and entirely dependent on others for health care, basic needs and basic comfort no less than for your own self-perception. In every walk of life, others play an important role in how we perceive ourselves; in such extreme circumstances, this role is heightened. As you lie in a hospital bed, attached to various machines, you can see part of your body, but you lack a mirror to see the whole of it, so you rely on others to give you a reflection of your face, your condition, your prospects. You see revulsion in some people’s eyes as they stare at your wounds, and you see concern and care in others’. For better or worse, you are at the mercy of their gaze, their care, and their judgement.

The question I was one of the lucky ones: I survived. Eight months later, I went back to work and continued the job of trying to mend the bits and pieces. After the Haiti earthquake on 12th January 2010, I watched an interview with two Portuguese rescue workers who had been among the first to get there as part of a Spanish rescue team. They were asked how they prepared to cope with such devastation. One of them said that they did not, they just relied on one another and while they were there, they just did whatever they could. “It is only now”, he added, “looking at these photos and being asked to talk about it, that we realize where we have actually been.” His words resonated with me. At no single moment can you grasp the whole experience: either you are in the thick of it, coping with the basics of life and death, or you can reflect upon it with the benefit of gradual hindsight, and begin to see the very strange and baffling country where you have been, just as you begin to perceive how the world you now

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inhabit has been changed by this experience. Words are likely to elude you as you first sense the profound gaps across which you have to tread.2 This applies to all of us, which in this context means that it applies to patients no less than to healthcare providers, who are faced on a daily basis with the basics of life and death, and with the need to make decisions that may alter the course of others’ lives. Of all the things that stayed with me, two stand out: the experience of utter helplessness I had at the clinic when the reality of what I felt was systematically denied by doctor and nurse, i.e. by those equipped with expert knowledge of the human body; and the perplexity caused by this systematic refusal to validate not only my complaints of pain, but the very signs that other doctors promptly interpreted as indicative of serious problems. Why had this doctor and this nurse dismissed these signs and complaints?3 As to my experience of utter helplessness, words fail me in attempting to express it. It feels like a “black hole”, or the mouth of a volcano: all I can do is tap gently around it, for fear of being engulfed in it. Nor do I wish to get too close to it, for it is too disabling altogether. For the purposes of bearing witness to it, it is enough to intimate what it feels like, so that healthcare providers may be alert to it, but not engulfed by it either: their job is to care for the ill, and definitely not to dismiss patients’ complaints in such an offhanded way. I suffered more physical pain afterwards, in the course of the major and minor surgical procedures it took to save my life, and I was a lot more aware then of the seriousness of my condition; but by then I felt I was being looked after, and that made a crucial difference. As to the doctor’s refusal to listen to my complaints, compounded with the subsequent insinuation that I had not complained enough – there was a huge gap between the power that she claimed over my life and the responsibility that she was prepared to take. I was blamed for everything that went wrong: for failing to evolve according to expectations first, and 2 On the challenging but also enriching process of hindsight, see Freeman. I am grateful to Donna Legatt at the University of New Brunswick for this welcome suggestion. 3 I am aware of the fact that the ultimate responsibility for clinical decisions lies with the doctor, rather than the nurse. However, nurses can make a difference, too, and one of the stories that later came my way illustrates this point. It was a replica of my story, with a difference: an oophorectomy, a patient who kept complaining of pain, a doctor who dismissed her complaints, and a nurse who insisted that the patient be double checked; her intestine had been perforated and had peritonitis, but was spared sepsis by the nurse’s timely intervention.

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for having failed to complain appropriately later. The official version eventually given by the clinic was that it all amounted to “a post-surgical incident” which was “aggravated by the fact that I had adhesions from previous abdominal surgery”. In other words, accidents happen and I was a less than perfect patient. I can accept that accidents happen; after all, we are all fallible human beings. However, perforating my intestine was the work of a moment, whereas refusing to listen to my complaints and validate my symptoms was the work of several days. What if, I kept wondering, I had been unable to speak, had been too young or too old or too confused to articulate my complaints, what if I spoke a foreign language – wouldn’t the signs in my body have been eloquent enough to command better care and attention? This is what puzzles me, and makes me ask a question that I feel is critical and needs to be seriously addressed by those providing healthcare. And the reason why this is a critical question is very simple: not all of us, in fact very few among us, are ever going to be health professionals, but all of us are, at some point in our lives, going to be patients, having to entrust our lives, and the lives of our loved ones, to the care and judgement of healthcare providers. So it is crucial that these professionals are trained to be alert to the multiple factors, both objective and subjective, that intervene in their decisionmaking process, in diagnosis and in therapy.4 The critical question is: why did this doctor fail to connect the dots? She had even more dots to connect than were at my disposal, for she should have been able to connect the dots of my post-surgical symptoms with those of the difficulties that she had encountered in the course of the surgery itself: the morning after the surgery, she admitted that it had been more troublesome than she had anticipated, that there were many adhesions and that there was this particular vein that would not stop 4

While my own story testifies to the inter- and intra-subjective elements at play in diagnosis, in Hippocrates’ Shadow, David H. Newman devotes a chapter to “the placebo paradox”, arguing that “Modern medicine’s difficulty in accepting the existence and importance of the placebo effect is rooted in a philosophical debate” between “Hippocrates’ vision of medicine – as a science for addressing the complete mind-body organism” and the Cartesian model embraced by modern medicine “in which mind and body are separate” (145-146). He adds: “While the Cartesian model has in some ways served us well, it has made the placebo effect difficult for us to understand. It has also made some of the simplest diseases we know seem like mysteries, and some of our most effective cures seem like miracles” (146). Such “miracles,” he argues, largely consist of what Daniel Moerman would call “a meaning response” (Newman 154), and are “not magical” but “intuitive: The healing is in the psychosocial and biological context – the contact, the ceremony, the bond between doctor and patient” (158).

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bleeding. Yet, to be able to connect the dots she would first of all have to contemplate the possibility that something might have gone amiss. Instead, the argument that “incidents may happen in the course of surgical procedures” was activated one and a half years later as a convenient excuse, but failed to be activated when it could have saved my life.

Reflections Let me say, for the sake of good measure, that this pattern of events is far from unique. As we all know, stories act like magnets, each one attracting a multitude of similar stories. So many similar stories have come my way in the meantime, the first recounted by health professionals themselves: the pattern of psychologizing and thereby dismissing patients’ complaints, of blaming the patient so as to excuse the doctor, of being more eager to discard responsibilities than to examine the truth, is by no means unique to my story.5 It is, however, a disturbing symptom of a culture deeply seeped in power relations monitored by defensive-aggressive patterns of behavior. Medical stories such as mine highlight the literally lethal consequences of such patterns, and the urgent need for us all to engage in collaborative, rather than confrontational, modes of relation. The blame game leads us nowhere. Both confrontation and collaboration are responses to our underlying vulnerability, but while confrontation focuses on difference and fosters entrenched divides, the willingness to engage in tentative collaboration must start with an acknowledgement of basic commonality.6 And the basics are that this is not about us versus them, this is about us all; fallible, mortal, contingent, vulnerable human beings that we are. In the medical sphere, this means that doctors’ knowledge of the human body and my own experience of living in my body, embodied creature that I am, should work together, not separately; they are both limited forms of 5 Many of these stories, in which patients’ initial complaints were repeatedly dismissed as psychological, ultimately culminated in cancer diagnoses. During the process, however, patients would feel completely isolated, for the repeated dismissal of their complaints on the part of successive specialists more often than not led their family and friends to likewise believe that it was all “in the mind”. 6 Marshall B. Rosenberg’s Nonviolent Communication: A Language of Life provides an alternative model of communication to address stress and conflict, and has been applied in a variety of conflict-ridden environments. Nonviolent communication (NVC) shifts the attention from judgement to an awareness of our emotions and the needs behind them – needs and emotions are therefore the “basic commonality” that NVC seeks to retrieve. I am indebted to Jean Burgess, at the University of New Brunswick, for drawing my attention to Rosenberg’s work.

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knowledge and therefore need one another. Similarly, I also need various healthcare providers, as well as doctors trained in different specialties, to work together, not separately, for everything is connected in my body, just as my body is itself the home of my existence as a person. The more I read patients’ and doctors’ stories, including the unique stories of doctors who become patients, the more it seems to me that if healthcare providers are to recognize the person in the patient, they need first of all not to dissociate the person from the provider. In other words, caring for the patient needs to start at home, in providers’ awareness of the full intra- and inter-subjective implications of their daily exposure to illness, pain and mortality. Robert Klitzman’s study of 70 doctors who became patients highlights some aspects of medical training and practice that hinder, rather than facilitate, the doctor-patient relationship.7 One such feature is the stigma attached to patienthood, compounded with a heroic notion of the medical profession that leads some doctors to feel immune to illness and be prone to denial when they suddenly find themselves cast in the role of patient: [t]hese physicians’ surprise was itself surprising, indicating the extent to which they had previously been socialized to feel otherwise. These beliefs persisted to such a degree that physicians may not only distance themselves 7

Robert Klitzman’s When Doctors Become Patients is based on research into the experience of 70 doctors who became patients; their double status as doctors and patients offers highly insightful information on the experience at both ends of the stethoscope. It should nevertheless be noted that the participants in this inquiry were all volunteers and were therefore doctors who not only had the experience of life-threatening illness, but also acknowledged their status as patients, despite the notorious prejudice that many of them used to harbor against the demeaning status of patienthood. The fact that these were voluntary participants should caution us against facile generalizations, such as the assumption that doctors with firsthand experience of life-threatening illness will necessarily become more empathic towards their patients, or the even more problematic assumption that the only safe way towards empathic treatment is via illness itself. Like any other person, different doctors may respond differently to the experience of serious illness, and although in many cases such an experience will foster greater sensitivity to patients’ predicament, in others it may trigger altogether very different emotional responses, which may remain unaccounted for in Klitzman’s study simply because these doctor-patients are unlikely to volunteer to participate in a study focusing on an aspect of their identity that they would rather deny or ignore. This proviso in no way diminishes the unequivocal merits of Klitzman’s study, which offers a nuanced account of doctors’ experiences of illness, and contributes to a diagnosis of some of the ills that undermine the clinical encounter, while suggesting possible future developments.

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from patients, but also look down at, and stigmatize, them. Some doctors thought that being a patient was “the worst possible thing” that could happen to them. […] These doctors revealed the degree of stigmatization of patients that can exist in the medical profession. […] This stigma reflects ostracism of the sick more broadly in society, and is of concern in and of itself, impeding physician readiness to enter this new role of patient. Only now did some physicians become more fully aware of the extent of human fragility. (Klitzman 35)

Klitzman describes how this attitude is passed on within the medical profession: [m]edical students learn values from senior doctors implicitly, by modelling, rather than explicitly […], yet through their training, medical students generally become more cynical and less compassionate […], and medical schools are teaching growing amounts of other, scientific information. Medical education leads doctors to distance themselves, build defences, and feel immune from death and suffering around them. But if physicians adopted more “rational” views, they might easily feel more 8 threatened by the surrounding illness and death. (12)

Patients thus risk being perceived as the flipside of what passes for success in western society, which is more likely to be associated with doctors’ power to save lives and keep death at bay. Yet, medical practice involves facing illness and death on a daily basis, which would suggest that healthcare professionals need to address the intra- and inter-subjective implications of their personal exposure to extreme forms of vulnerability; denial seems luring but is ultimately damaging: [p]hysicians’ refusals to recognize that they, too, would one day face these issues in their own lives had psychological and adaptive advantages. This attitude allowed for denial of painful truths about death all around them, but could clearly cause problems, too. (291)

As some of these doctor-patients eventually recognised, “[c]onfronting one’s own mortality can make it easier to confront that of others” (290). If Klitzman’s study provides a striking diagnosis of existing barriers in the doctor-patient relationship, it raises a critical question in the reader’s mind: these 70 doctors seem to have had their “eyes […] completely opened” 8

Klitzman adds: “Medical students identify first with patients, and only later with fellow physicians. Medical training radically challenges these trainees, taking them apart psychologically, wounding them. They must then put themselves back together, and end up identifying with fellow doctors” (34).

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(310) as a result of their experience of life-threatening, and in some cases terminal, illness. Yet, becoming a patient is not, and cannot be, a prerequisite for being a good doctor, nor does it ensure that one will necessarily become a more empathic person and professional: how each of us integrates the experience of illness into our life largely depends on how we deal with the patient within us, how we face vulnerability and mortality. The question is therefore how best to train doctors to deal with the intra- and interpersonal issues that these doctor-patients faced through illness. Can empathic imagination assist us? Can it be trained and nurtured? Can we learn from others’ experiences? The fear of contact with patients’ vulnerability hides the fear of contamination, hence doctors’ superstitious belief in the immune power of “white coats” referred to by Klitzman. Doctors’ attitudes towards their patients’ vulnerability are intimately linked to the lurking fears that threaten to undermine the sense of power upon which their professional identity rests. These issues seem to be insufficiently (if at all) addressed by traditional medical training, for, according to John Launer in How Not to Be a Doctor, [o]f all professions, doctors are almost invariably the most proficient at not listening. Indeed, a friend of mine sometimes describes my educational work in consultation skills as “remedial therapy for selective brain damage”. It is a cruel characterization, but I do not entirely object to it. I am struck again and again by how much medical listening–even the kind that sometimes passes for being “patient-centred”–falls desperately short of anything that one might expect from an attentive, untrained friend. Many doctors seem to tune out totally from any words or phrases that do not fit the medical construction of the world. In addition, most appear to be extraordinarily timid about going where the patient wants to lead, for fear that this will break some rule, or upset any other doctor who might hear about it. (Launer 2007: 12)9

These barriers between doctors and patients, and between human beings and their own vulnerability to illness, pain and death, are rooted in a 9

In “Do not disturb”, another essay included in How Not to Be a Doctor and Other Essays, Launer recounts a disconcerting visit to a colleague working for the NHS: from the “clean and tidy but rather drab” waiting room filled with notices on the walls that amounted to “eleven ‘don’ts’, and not one ‘please’”, to the doctor’s “unperturbed” demeanour, everything seemed to indicate “the impoverishment of this man’s experience of medicine”. As Launer remarks: “For what notices like this in waiting rooms really proclaim is this: ‘Please remember that you are here to make us feel good, not the other way around. Please do not challenge us because, in reality, we are too vulnerable to cope’” (2007: 105-106).

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defensive-aggressive heritage of which medical training is but one symptom. The body, as the site of pain, and the patient, as the bearer of illness, become the targets of the unacknowledged fears of a society that regards death as defeat rather than as an intrinsic part of life. For all the startling advances of western medicine, it has been shaped by a belligerent mindset and a militaristic language that can be traced as far back as the seventeenth century, as Abraham Fuks points out, adding that, [m]ost exemplars of the military metaphors cast the physician in heroic terms, in many instances, as the individual responsible for identifying the reified disease resident in the patient’s body, naming it and arranging for the means of extirpation or elimination. […] 10 As disease became ontologized, the patient’s voice began to disappear from the chronicle of illness. (5)

Fuks’s own voice draws attention to the paradox that befalls modern medicine, and compellingly argues for a doctor-patient relationship based on the recognition of the personhood of each interlocutor, for the sake of both: [t]he contemporary paradox is thus not simply a result of nostalgia for the good old days of kindly physicians. It reflects the outstanding capacity of a highly technical medicine to work wonders for those diseases that capture the attention of physicians while its practitioners fail to recognize and acknowledge the sufferers that sit patiently while the doctor addresses the ubiquitous computer screen. […] the arena of the sickroom and clinic are bereft of a language that can be shared by patients and their physicians. The healing capacity of the listener needs a phenomenological fusion of horizons with the speaker, or at a minimum, shared goals and the acknowledgement thereof. […] Lastly, it is not simply for patients that medicine must create new metaphors. What is also at stake is the very persona of the physician whose own identity cannot be rooted in warfare and assaults. When physicians forget how to listen to their patients, they also become deaf to their own souls. (7-8)

New metaphors require discarding hierarchical notions of us-versus-them and acknowledging a basic commonality: doctor and patient are people, both resourceful and fallible in the face of life’s vulnerability. Barenboim’s reminder that “everything is connected” applies as much to music as it 10

See Abraham Fuks, “The Military Metaphor in Modern Medicine”: “Though some have attributed this metaphoric stance to the advent of the germ theory of illness of the late 19th century, such language can be found as early as in the works of Thomas Sydenham in England in the mid 17th century” (2).

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does to the human body, societies, and the environment. In an age when we are sometimes shocked into awareness of our global interdependence, the old mechanistic metaphor for the human body is far from satisfactory and the desire for more holistic approaches to healthcare becomes manifest.11 Environmental metaphors premised on interconnectedness, and thus evocative of the body’s dynamic integrity, are perceived as more apt, as proposed by Marni Jackson in Pain: [m]edicine has tended to take a high-tech, interventionist approach to health instead of enlisting the resources and strengths of the body to negotiate with pain. The successful treatment of pain calls for more communication between patient and doctor, communication between the professions, and a view of medicine as something unfinished and integrative, rather than specialized, standardized, and technology based. […] Perhaps the metaphors should shift from war to the environment. Medicine needs to look at pain not as a foreign invasion but as a kind of environmental problem in the body. […] Medicine has to look beyond isolated symptoms and aggressive solutions to the ecology of the larger system. Politically, thinking globally has become less an ideological option than a necessity. Borders protect no one. Our relationship to the earth has become more stark and unavoidable. It’s the same with our health. (356-357)

The proliferation of patients’ stories and of providers’ reflections about the doctor-patient relationship testifies to the commitment of many to reflect on medical practices so as to care better.12 The diagnosis of the ills 11 As David H. Newman points out, the Cartesian model embraced by western medicine perceives “the body [as] a complicated machine with organs and blood vessels and nerves, and its functions are cause-and-effect mechanisms controlled by the brain. The brain in turn is a complex computer that regulates these body parts and their functions, which are separate from mind, or psychological functions like higher thinking and complex reasoning” (146). In turn, Bor, Eriksen and Stapelkamp conclude their volume on Coping with the Psychological Effects of Cancer with a chapter entitled “Being ‘a patient’ and working with healthcare professionals”, with the italicized preposition indicating a shift in the relationship. They introduce a section devoted to complementary and alternative therapies with the following remarks: “Unlike some other cultures, Western culture is often described as regarding the body as being quite separate from thoughts and emotions. This is particularly evident in health care. Medical practice can reinforce this division by focusing on treating the physical aspects of an illness in a way that often seems disconnected and isolated from other dimensions (thoughts, feelings, spiritual aspects). Some may feel that their deeper needs are neglected, particularly if they are facing life-threatening illnesses” (Bor et al 91). 12 Arthur W. Frank’s work, from The Wounded Storyteller: Body, Illness, Ethics to The Renewal of Generosity: Illness, Medicine and How to Live, has been highly

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affecting the doctor-patient relationship includes the reliance on technology to the detriment of inter-subjective relations, the unawareness of the subjective elements involved in both diagnosis and therapy, the defensive attachment to prejudgements that may prevent a clear assessment of a given situation, and, ultimately, the consequences of the Cartesian body and mind split in western culture, as well as the hyperspecialization of all forms of knowledge, which leads, in the case of medicine, to rivalry among medical specialities, so that, as a patient, your body is hardly ever treated as a whole body, let alone as part of your whole person. The inherited positivistic models and ingrained practices have, in various ways, proven unsatisfactory to doctors and patients. Better healthcare requires that a range of traditionally neglected aspects be included in medical training and clinical practice, starting with the awareness that the relational component of medicine is not merely critical to providing more humane medical care; it is also critical to providing better clinical care. Being ill and facing death is a humbling experience. It brings home the basics of life: that we are embodied mortal creatures, a condition we all share but experience individually. It is therefore with a humble and mutually responsible attitude that we should care for one another, and honor our human vulnerability.

influential in helping us to listen to and address the patient’s experience in a society where medical advances have made it possible for more of us to survive life-threatening illnesses, while increasing the numbers of those of us who live with chronic conditions and are therefore members of “the remission society”. Works by other doctors and/or academics who have used their experiences as patients to further their research into their condition and explore complementary forms of treatment include David Servan-Schreiber’s international best-selling book, Anti-Cancer: A New Way of Life and Neville Shone’s Coping Successfully with Pain as well as his Cancer: A Family Affair. In turn, the bioethicist Richard M. Zaner has made a longstanding contribution to thinking about “the clinical encounter”: see his Ethics and the Clinical Encounter and Conversations on the Edge: Narratives of Ethics and Illness. Among medical doctors, see Rita Charon’s work, particularly Narrative Medicine: Honoring the Stories of Illness, which details the premises of the programme on narrative medicine that has been set up at Columbia University; David H. Newman’s Hippocrates’ Shadow, and John Launer’s Narrative-Based Primary Care: A Practical Guide and How Not to Be a Doctor and Other Essays.

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Works Cited Barenboim, Daniel 2008. Everything Is Connected: The Power of Music. London: Weidenfeld & Nicolson. Bor, Robert, Carina Eriksen and Ceilidh Stapelkamp 2010. Coping with the Psychological Effects of Cancer. London: Sheldon Press. Charon, Rita 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press. Frank, Arthur W. 2004. The Renewal of Generosity: Illness, Medicine, and How to Live. Chicago: University of Chicago Press. —. 1995. The Wounded Storyteller: Body, Illness and Ethics. Chicago: University of Chicago Press. Freeman, Mark 2010. Hindsight: The Promise and Peril of Looking Backward. Oxford: Oxford University Press. Fuks, Abraham 2009. “The Military Metaphors in Modern Medicine”. Accessed [online] at http://www.inter-disciplinary.net/wp-content/ uploads/2009/06/hid_fuks.pdf. Groopman, Jerome 2009. “Diagnosis: What Doctors Are Missing”, New York Review of Books, Nov. 5. Jackson, Marni 2003 [2002]. Pain: The Science and Culture of Why We Hurt. London: Bloomsbury. Klitzman, Robert 2008. When Doctors Become Patients. Oxford: Oxford University Press. Launer, John 2007. How Not to Be a Doctor and Other Essays. London: Royal Society of Medicine Press. —. 2002. Narrative-Based Primary Care: A Practical Guide. Abingdon: Radcliffe Medical Press. Newman, David H. 2008. Hippocrates’ Shadow. New York: Scribner. Rosenberg, Marshall B. 2003. Nonviolent Communication: A Language of Life. 2nd ed. Encinitas, CA: PuddleDancer Press. Servan-Schreiber, David 2008. Anti-Cancer: A New Way of Life. London: Penguin. Shone, Neville 1995. Cancer: A Family Affair. London: Sheldon. —. 2002 [1992]. Coping Successfully with Pain. Rev. ed. London: Sheldon. Zaner, Richard M. 2004. Conversations on the Edge: Narratives of Ethics and Illness. Washington, D.C.: Georgetown University Press. —. 2004. Ethics and the Clinical Encounter. Lima, Ohio: Academic Renewal Press.

NARRATIVE MEDICINE: THE ESSENTIAL ROLE OF STORIES IN MEDICAL EDUCATION AND COMMUNICATION RITA CHARON

Introduction Narrative Medicine is a discipline within healthcare that arose in recognition of the essential role of stories in medical education and practice (Hunter 1991). If sickness unfolds in stories, both when the patient tells of symptoms and the doctor hears and retells them, then narrative practice might occupy a central role in the lived experiences of being ill and caring for the sick. It may be that some of the difficulties perceived in contemporary healthcare – in communicating with patients, in collaborating on healthcare teams, in aligning scientific research with public health obligations, and in maintaining clinician professionalism and well-being – can be helped by disciplined and purposeful use of narrative methods of practice. As the divisions widen between healthcare professionals and patients – in lived experience, in health beliefs, in culture and language and in science/health literacy – clinical practice needs mechanisms to ensure accurate transmission of information, knowledge, and commitment from one participant in the clinical transaction to another (Fadiman 1997). As the differences between healthcare professionals of distinct disciplines accrue, methods of ensuring respectful and effective team work are essential (Committee on Quality of Health Care in America 2001). As public health needs compete for resources with bioscientific research, clinicians seek means to reach out to communities through advocacy and social activism to develop effective health policy and public health measures (Farmer 2003). And as the divisions felt by the doctor or nurse himself or herself become painful, experienced as alienation or burn-out, resources for self-awareness and reflective practice become urgent, to restore not wholeness but selfhood to the practicing clinician (Remen 1997).

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Narrative Medicine has emerged in the past 10 years as a response to all these needs being felt (Charon 2001a, 2006a; Engel et al. 2008; Morris 2008). Defined as clinical practice fortified with the skills to recognize, absorb, interpret, metabolize, and be moved to action by stories of illness, narrative medicine lets clinicians practice in full view of all the evidence available about a patient and in full command of all the powers of that clinician’s self (Goyal et al. 2008). Because the conceptual frameworks and methods of this field simultaneously fulfill the concentric goals of improving doctor-patient relationships, collegial teamwork, engagement with the public, and self-knowledge with a view to reflective practice, a unity of practice and meaning becomes visible. The bridging of the chasms that divide patients, colleagues, communities, and self becomes a means of achieving a rare unity of purpose within medicine, aligning forces for the good of the patient, the health of the public, and the well-being of the doctor.

Narrative Medicine’s Roots in Literary Study, Patient-Centered Care, and Reflective Practice Narrative medicine has evolved from and merges several sources: literature and medicine, primary care medicine, and reflective practice. Literature and Medicine: Medical practice has enduringly been informed by narrative elements of literature and story-telling, and medical training has long relied on the particular contributions of literary texts in understanding its mission and rewards (LaCombe & Elpem 2010). When medical schools teach trainees about therapeutic relationships, understanding patients’ perspectives, cultural dimensions of health and illness, listening skills, and the clinical imagination, a considerable part of such teaching incorporates materials from literary studies and texts (Trautmann 1981; Wear et al. 1987; Charon et al. 1995). Primary Care and Patient-Centered Medicine: The skills of doctorpatient communication and relationship-building have been researched and taught in primary care medicine (Lipkin et al. 1995; Novack et al. 1997). Through patient-centered primary care, doctors came to understand that caring for sick people traverses the boundaries between biological, social, cultural, behavioral, and spiritual ways of knowing about patients and influencing the outcomes of their medical care (Engel 1977; Cassell 1982). International movements in patient-centered care opened up patient partnerships and perspectives as the natural starting point for effective healthcare (Stewart et al. 2003). The more recently articulated relationshipcentered care proposes that effective health care depends on the qualities

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of all the relationships among all those who seek and provide care (Inui 1996). Reflective Practice: Far afield from healthcare, scholars and writers from several disciplines and perspectives have examined psychological states of reflection. Contemplative practices provide inner peace (Harper 1991). Tacit knowledge and knowledge arising from the actual practice contribute to effective work (Polanyi 1983; Schön 1984). Phenomenologists and qualitative social scientists each describe the cognitive and interior pathways toward awareness of one’s own position, relationships, and actions in the visible world (Merleau-Ponty 1962; Turner 1995). Medical educators and practitioners took up these ways of thinking about human action to introduce mindfulness into practice (Epstein 1999; Connelly 1999), to encourage reflective practice in medicine (Mann at al. 2009; Oatley & Djikic 2008), to use methods from phenomenology to clarify murky clinical problems (Leder 1990; Zaner 2004; Irvine 2005), and to appreciate careful observation of our work by devoted social scientist colleagues (Mishler 1984; Bosk 2003; Mattingly 2010). By bringing together the sensibilities and practices of literature and medicine, patient-centered primary care, and reflective practice, narrative medicine expands the help given to medicine by any one of these approaches. Not so much a new invention as a fresh combination of diverse ways of knowing about health and illness, narrative medicine both pays tribute to its progenitors and opens up new ground in the care of the sick.

Conceptual Framework from Narrative Theory and Clinical Practice: Attention, Representation, Affiliation Narrative medicine proposes that the central events of healthcare are the giving and receiving of accounts of self (Butler 2005; Charon 2011). The sick person transmits information about himself or herself in words, gestures, silences, postures, mood, and alterations in the body. The attentive clinician is able to receive all that is transmitted by the patient, much as a radar screen might receive and record the traces of moving objects in space. In receiving these messages, the attentive clinician perceives, coheres, interprets, and can then put to use what is learned about the patient. Narrative medicine trains clinicians to represent, usually in writing but sometimes in visual media, what they witness in the lives of their patients as a means to increase perception and understanding. In Parallel Charts, clinical journals, critical incident reports, and field notes, clinicians and medical trainees develop sophisticated skills in representing the complex

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events and states of affairs of healthcare (Branch et al. 1993; Charon 2006a; Wald et al. 2009). Relying on concepts from aesthetic and narrative theories, narrative medicine realizes that, when writers confer form on upuntil-then formless or chaotic experiences, they make the immaterial material, newly exposing to view dimensions of the complex experience in front of them (Loewald 1988). To write about one’s practice, then, is literally to see it more clearly. Attention and representation spiral together toward the ultimate goals of narrative medicine: affiliation with patients, with colleagues, with the public, and with the self. Together, the state of attention and the skills of representation enable narrative medicine practitioners to recognize their patients and partners in care, to understand their own responses to others’ situations, and to enact an investment in others’ well-being. The Concept Map in Figure 6-1 displays the interplay among the three movements. Attention and representation are seen to spiral together toward affiliation. We propose conceptually that the four-way affiliations with patients, colleagues, the public, and the self lead, through various hypothesized intermediaries, to the overarching goals of narrative medicine: reflective practice, effective healthcare teams, improved public health, and effective healthcare. Although these linkages and intermediaries are here merely hypothesized in diagram form, the relationships among the movements can be seen, along with the potential ramifications that spread throughout all our efforts in the care of the sick. Attention: Mindfulness, Recognition, Bearing Witness to Suffering: Attention is the state of readiness of one person to recognize and absorb the situation of another. Sometimes called mindfulness or being in the present moment, attention is achieved when the listener focuses on the teller, is not distracted by non-relevant inner thoughts or extraneous considerations, and fully engages his or her thoughts, emotions, curiosity, and imagination in receiving what the teller conveys (Weil 2001; Schafer 2004; Murdoch 2001). Literary studies train students in close reading, in which the reader pays attention to multiple dimensions of a text at once – the plot, the genre, the imagery, the temporality, the narrative voice, the allusions to other texts, and the unsaid. Attentive listening to oral language is akin to close reading of a written text, and training in close reading is seen to “translate” into improved attention in listening to oral language. Attention in a medical conversation assures that salient clinical evidence will not be squandered by the listener. Words, sights, sounds, smells, moods, and tactile information add to what the clinician learns in

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the attentive encounter. By attentive presence, the clinician signals his or her availability to the patient to hear and to bear witness to the patient’s situation. Not only feeling heard but feeling recognized is the result of an attentive listener. With attention, the patient/teller is able to express his or her thoughts and feelings, often uninterruptedly, to a doctor/listener who appears to absorb what is said, dwell on the new information, and take the time to check his or her understanding with the patient. Expressing a thought can be the prelude to knowing it, accepting it, gradually achieving its meaning. From psychoanalytic practice we have learned that interior transformations occur once a thought is uttered and then heard. Even before analytic interpretation, should this occur, the teller has undergone a process by the virtue of voicing a thought (Rudnytsky & Charon 2008). Perhaps especially with the voicing of matters of the body, the formulation into words of a symptom is a critical movement toward grasping the nature of the bodily sensation and admitting the fears mixed into the sensations. Hence, attentive listening can “birth” the description of a symptom and the meaning ascribed to it, the critical step in any diagnostic process (Charon 2006b). Narrative medicine has learned much about its practice from the fields of trauma studies and testimony. The attentive doctor listening to the patient’s account of handicap, impairment, frailty, or inability to continue the life that has been lived is trying to achieve the witness position so well described by trauma scholars (Felman and Laub 1992; Clark 2002). Sometimes, the most helpful clinical intervention is the silent witnessing of a patient’s suffering. We have evidence of the importance of witnessing from patients’ descriptions of their illnesses. Present more in wished-for default, doctors’ capacity to accompany patients through their ordeals means far more than most doctors realize (Middlebrook 1996; Lorde 1997). At the same time that patients may feel let down by their doctors’ lack of witnessing, doctors feel let down by their own distance from patients. The considerable literature on burn-out or compassion fatigue documents wide-spread disappointment, sometimes achieving the level of anguish, commonly experienced by doctors and other healthcare professionals. Some sense the emptiness of their work. Some feel depleted by their practice. Some turn toward monetary reward to make up, somehow, for the awful experiences their practice forces them to undergo (Konner 1993). In attentive encounters, the listener is acknowledged as helpful, as generous, as one who accompanies the teller in discovery. If the doctor recognizes the patient, the patient simultaneously recognizes the doctor. This mutual recognition adds to the doctor’s sense of self, of worth, of having

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something of value to give to patients. Sadly, such a feeling of worth and joy in clinical work is becoming rare in our current healthcare settings, and so the value accorded to this feature of narrative medicine practice is not insignificant. Representation: Doctors write their way through the days. Even if these days the inscription is done by keyboard onto an electronic health record or dictated for another to type, the hand or voice of the doctor still has to formulate thoughts and sensations into words in order for care to proceed. Narrative medicine takes advantage of the centrality of representation in words to push the boundaries of the benefits of clinical practice. The representations of narrative medicine teaching take many forms. Since narrative medicine methods are now used in teaching students, residents, faculty, health care teams, communities, and patients, there are varied representational tasks and triggers for writing, called writing prompts, for achieving them. The overall goals are the same no matter the level of learner or setting of training: to encourage and develop within learners the skills to represent complex events or states of affairs so that they can be perceived and maybe understood. Based on conceptual frameworks from aesthetic theory and narrative theory, we have come to understand some of the ground rules that might govern the utility and productivity of such writing in clinical settings. Writers Need Readers. The first cardinal rule is that writers need readers. Unlike those who encourage journaling or writing in diaries, narrative medicine insists that the writer needs a reader. Because the writing process is one of discovery and not recording, the originator of the text knows not what his or her text might mean. It takes another, an other, to read or hear what the writer has written in order to discern what might be held in its form. If psychoanalysis requires an analyst listening behind the couch as the patient speaks, and if the novelist requires publication of the novel and readers for that novel in order for it to be a novel, then the writer of a clinical representation requires another set of eyes or ears to receive what has been created and to help the creator to see what, in fact, it is. What is written in clinical narrative medicine training sessions must be heard or read. If the writing is to be done spontaneously in the teaching session itself, the following practices are usually followed. Learners first consider a text of some kind – a poem, a story, a patient’s memoir, a presentation by an intern during ward rounds. They are then asked to write to a prompt given by the teacher in a class that allows them to write “in the shadow of the text”. That is to say, the writers are not strictly instructed to

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write an interpretation of the text or a specific response to it. Instead, they are invited to write within the climate of the text, taking from the discussion of the text either images or methods or states of mind entered into through the discussion of the text. For example, I recently gave a lecture at a large national meeting of physicians about narrative medicine techniques. In a writing workshop after the lecture, I distributed the poem “The Sick Wife”, written by Jane Kenyon when she herself was terminally ill with the cancer that caused her death. The short poem depicts a sick woman waiting in a car in a parking lot while her husband shops for groceries (Kenyon 1996). I directed the group in discussing the poem – its images, its narrative voice, its rhythms and meter, the wishes perhaps voiced between the lines by the woman sitting in the car. We doctors wondered aloud together about the feeling of stasis of the sick woman as others swirled around her in the activities of everyday life. After about 15 minutes of animated discussion of this poem, I encourage the participants to write to this prompt: “Adopting the “I” of the sick wife, write the next stanza of the poem.” I told the learners that I would encourage them to read aloud, in small groups there in the room, what they wrote. Although floored by the request to write poetry, my doctors gamely set to task. I gave them five minutes. Once the writing time elapsed, they gathered in small groups at discussion tables and read to one another what they had written. The listeners at each table were able to acknowledge what was written by each one, reflecting on what was heard and what seemed to be contained in the words. They did with the poems written by their colleagues what we had just done in the large group with the poem by Jane Kenyon. We then regrouped into the whole group. I invited at least one writer from each small group to read aloud what had been written, and we were all able to add, as reader/listeners, to what the writer had found. This process modeled the narrative medicine approach which combines close reading with individual writing that is then closely read or heard by colleagues. In this way, each writer has a taste of the discovery potential of writing, while also practicing the skills of attentive listening, in this case to the benefit of colleague writers. The learners become an interpretive community, able even in one session among strangers to donate a “hearing” to one another and allow each writer to understand something of what he or she has done with words. Sometimes, the writing is assigned to be completed between sessions of a course. For example, if the teaching setting is a fiction-writing workshop or poetry workshop, each participant works on his or her short story or poem and submits drafts of the work. The writing will be posted

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or distributed for all class members to see. During the class session, the teacher will lead a discussion of the texts one by one, opening up the conversation so that all learners can comment on and critique the work. Although a more prolonged procedure, the goals of extended writing match the goals of spontaneous writing – to help the individual writer come to see what is contained within the writing. In both cases, the contribution of the reader/listener is key to the process. Honor the text. The second cardinal rule is to honor the text. This rule distinguishes narrative medicine teaching from support groups or venting sessions. Rather than a session of lamentation or complaint, these sessions focus closely on the text that is read and the resultant texts that are written. Unlike literature and medicine sessions where one discusses a short story or novel, narrative medicine sessions require direct engagement with the text of another and the text of oneself. While reading groups can degenerate into hand-waving voicing of opinions, narrative medicine teaching is anchored in the text, which is treated seriously with literary methods of close reading. In this way, the teaching sessions do not become about emotion-handling only (although indeed the sessions help learners to handle emotion) but become skills-building sessions whereby the learners grow in their abilities to perceive their own experience, represent it, and learn and grow in the process. Writing fulfills its mission by having been written. The third cardinal rule is that the writing fulfills its mission by having been written. This is a cautionary rule and a matter of law. A tendency we have observed among some clinical writers is to try to publish what they have written. I weary of students or doctors who ask me for the names of literary agents or suggestions for journals who will publish their reflections. I think less of colleagues if they publish anthologies of what their students have written. Confidentiality laws and HIPAA regulations apply to anything that might be written about patients. Unless the patient signs informed consent allowing the writer to publish something that describes him or her, the doctor-writer breaks the law in publishing it (Charon 2001b). My group has worked with policy-writing panels at our university to spell out guidelines to govern writing about patients that takes place in clinical settings. We encourage other universities and hospitals to do the same. Affiliation: The affiliations built by virtue of narrative medicine methods are legion. Our methods result in sturdy affiliations with patients, with colleagues, with communities and the public at large, and with ourselves. I will briefly take up each of these, since affiliation is the ultimate goal of these methods. Unless attention and representation spiral toward improved

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affiliation, the methods are solipsistic and self-serving. In each of the sections detailing these four types of affiliation, I will give a clinical or pedagogic example from our teaching or practice depicting specific settings in which affiliation is created. Affiliation with patients. Writing about practice illuminates the process of care. Writing a description of a house call or an office visit and having the representation read or heard by colleagues inevitably leads to hypothesis generation regarding the transactions that may improve care. By opening up one’s impressions to the light of day through narrative means, the doctor or nurse or social worker can inspect anew the relationship. This is not to suggest that truth or accuracy or the last word in interpretation is ever achieved. What it does suggest is that opening the transaction to the light of form is a meaningful act that can widen the potential meanings and consequences of actions, and can intensify investment in the patient’s well-being. Such light, in the end, increases the freedom and choice in being someone’s doctor. As we pursue more complex methods of narrative medicine in clinical practice – sharing progress notes with patients, showing patients what we have written about them in reflective texts, encouraging patients to write back, inviting witnesses into the clinical encounter who can testify as to what occurs – we are in a position to reap even more complex and consequential products from these narratively fortified clinical relationships (Peterkin 2006). Specific sequelae of these fortified relationships can be predicted, and well-designed clinical trials of these methods are envisioned that could document some of these hypothesized outcomes. 1. Building of mutual trust in the clinical relationship 2. Improving patients’ willingness to divulge private aspects of health beliefs and fears 3. Shifting of locus of control of health events from clinician to patient 4. Improved patient adherence to clinical recommendations 5. Improved patient follow-up with preventive health measures 6. Ultimately, improvement in such clinical outcomes as blood pressure control, glucose control, weight loss and smoking cessation 7. As a dividend, improvement in clinician well-being, sense of worth, and sense of reward from practice Clinical example: Patient-Held Medical Record. My routine practice of general internal medicine has changed a great deal since my engagement

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with narrative medicine. When I write notes on office visits, which I do nowadays in an electronic medical record, I give a copy of my note to my patient, believing that anything written about a patient belongs to him or her. Knowing my patient will read my note alters what I include in it. If we spend 10 minutes talking about a family difficulty, this situation will be represented in my note. I will routinely include my own impressions of the patient’s strengths and challenges, letting the patient know in this way of my regard. The diction of my notes has changed from technical, abbreviation-filled jargon to full sentences of effectively laden prose. I have given my patients handsome binders in which to keep all these notes, along with whatever else of the medical record they would like to see – operative reports, discharge summaries and the like. Patients will read what I have written and then often say “We left something out.” So begins a true round of exposure and relation. Affiliation with colleagues. The healthcare team, we all agree, is essential to improved healthcare. Narrative training in mixed groups of healthcare professionals prove their capacity to get over the distinctions that separate doctors, nurses, social workers, therapists, and administrators. The movements of interprofessional education and interprofessional practice are active and growing (Lemieux-Charles & McGuire 2006; Manser 2009). Such outcomes as improved team cohesion, improved team morale, and transparency of self and other have been documented in small studies of narrative medicine training (Sands et al. 2008; St. Louis 2010). As we go forward, such outcomes will continue to be collected and verified. Pedagogic example: Pediatric Narrative Oncology. A pediatric psychologist and I started a narrative medicine writing seminar for in-patient pediatric oncology team members. Doctors, nurses, social workers, and child life therapists were invited to come to a series of weekly writing seminars, held on the day shift and evening shift, and coached by a writer colleague or me. Each time, we started with a short reading – a poem written by a nurse or a short paragraph from a story – and then invited the participants to write to a prompt, for example, “Describe one of your patients from his or her mother’s point of view” or “Write about a time during this week when you felt hope or despair.” Each writer had a chance to read aloud what he or she had written. Over just five weeks, we documented improvements in participants’ ability to see from others’ perspectives and their sense of transparency to one another. Although the perceived stress did not decrease, we found that the gaps between stresses perceived by doctors, nurses and social workers narrowed. In focus groups, the

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participants expressed gratitude for the chance to see one another more clearly and their impression that the seminars’ effects “spilled over” into improved knowledge of patients on the ward (Sands et al. 2008). Affiliations with communities and the public. Community based participatory research and communities of practice are two means by which professionals have affiliated with one another and with those they serve so as to reach the goals of care (Kalmuss and Armstrong 2008; Fung-Kee-Fung et al. 2008). Narrative methods are just recently being introduced into these efforts. By widening the discourse from professional to lay, narrative methods decrease the distance between groups, or at least thin the separating membranes between them. Experience in community health centers, bringing together physicians and community health workers, has begun to specify the means by which such progress can be made. Collaborative example: Community Health Center. Pediatric residents assigned to a community health center worked with community health workers, who were neighborhood residents trained as liaisons with the health center to deliver very basic health information and to survey homes for health problems. There was friction between these two groups – the older Latina women from the neighborhood and the largely white, nonSpanish-speaking male doctors from the medical center. Two pediatricians inaugurated a reading program for these two groups. Twice a month, they spent an hour discussing a health-related reading. The Spirit Catches You and You Fall Down by Ann Fadiman was an early selection. Detailing a cross-cultural health situation in a Hmong neighborhood in California, the anthropological study describes the anguish of clashing health beliefs. For the first time, these doctors and community health workers realized that they were doing something very difficult together, that they were experiencing the tensions, depicted in the book, of a collision of world views. Reading this complicated book together gave the community health workers a great sense of accomplishment and growth and gave the young doctors, for the first time in their residency, an immense sense of the value and strength and power of the patients whom they were committed to serve (DasGupta et al. 2006). Affiliation with the self. The affiliation with the self is a reflective stance that supports self-knowledge, self-forgiveness, and self-regard. By nourishing the capacity to reflect on one’s work, narrative medicine reconciles the doctor-self with the person-self. We simply do not know the magnitude or the cost of the alienating sequelae of clinical work, although we know that there are losses to suicide and addiction disproportional to

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our numbers. Although the goals must not be allowed to end with clinician well-being, this element of affiliation with self is a critical ingredient in the process so as not to lose practitioners on the shores of burn-out, compassion fatigue, and cynicism. Reflective example: The Parallel Chart. Students at Columbia are invited to write in what we call the “Parallel Chart” during their ward rotations. In addition to doing formal admission write-ups of patients admitted to hospital, the students are instructed to write, in ordinary language, about aspects of their patient’s care that do not belong in the hospital chart but that must be written somewhere. Students write about their own attachment to patients, their being reminded by patients of family members, their own fears that are awakened by the care of sick patients. When they read to one another from their Parallel Charts, they make contact with dimensions of their colleagues that are generally hidden. Over short periods of time, they find themselves able to express ideas and sensations that add to what they know about patients and about themselves. Pilot studies of this method showed improvements in perspective-taking and improved skills in coping with death among the students assigned to writing groups, and students found that writing enabled them to understand individual patients with new clarity (Charon 2006a; Lister 2008).

Plans for Future Research and Development Narrative medicine colleagues in the US, Canada, Europe, the UK, Africa, Australia, and Asia have worked hard to assess the outcomes of narrative medicine teaching and practice, with several outcome studies cited in this review and many more now in progress. Methods from qualitative social science research and developmental educational research are enabling us to document the emerging sequelae of our unusual interventions. In addition to quantitative measures or the administration of surveys in a preand post-intervention design, such methods as ethnographic interviews, focus groups, and emergent design assessment are building our knowledge base regarding the outcomes that can be documented from this work. Work in the field has been funded by NIH, NEH, the Macy Foundation, the Rockefeller Foundation, the Guggenheim Foundation and the Fan Fox and Leslie Samuels Foundation, along with national sources in Canada, the UK, and Israel. This young field is now, barely 10 years into its existence, starting to take the measure of its capacity to contribute to respectful and reflective

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healthcare. Having credible and tested methods of approaching patients, supporting teamwork with colleagues, reaching communities of patients, and reconciling the clinician with himself or herself will enable unified means of repairing some of the costly lesions seen in our current systems. Because these methods do not cost very much (beyond salary support for teachers and the time of participants in training), there is reason to predict that they will be taken up by continuing professional education, postgraduate training, and in-service professional training in addition to the school-based educational endeavors of medical, nursing, social work, and therapy training schools. It is our deep hope that we can contribute something consequential to the effort to bridge the chasms in healthcare, to unify the efforts toward the healing of costly rifts now present in our systems of care, and to assure sick people that they will be heard and those who care for them that they will be recognized.

Works Cited Bosk, Charles L. 2003. Forgive and Remember: Managing Medical Failure, 2nd Ed. Chicago: University of Chicago Press Branch, William T. et al. 1993. “Becoming a doctor: critical-incident reports from third year medical students”, NEJM 329: 1130-32. Butler Judith P. 2005. Giving an Account of Oneself. New York: Fordham University Press. Cassell, Eric J. 1982. “The nature of suffering and the goals of medicine”, NEJM 306: 639-45. Charon, Rita 2011. “The novelization of the body, or how medicine and stories need one another”, Narrative 19: 33-50. —. 2006a. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. —. 2006b. “The self-telling body”, Narrative Inquiry 16.1: 191-200. —. 2001a. “Narrative medicine: a model for empathy, reflection, profession, and trust”, JAMA 286: 1897-902. —. 2001b. “Narrative medicine: form, function, ethics”, Ann. Intern. Med. 134:85-87. —. et al. 1995. “Literature and medicine: contributions to clinical practice”, Ann. Int. Med. 122: 500-606. Clark, M.M. 2002. “The September 11, 2001 oral history narrative and memory project: a first report”, Journal of American History 89.2: 569-79. Committee on Quality of Health Care in America. Institute of Medicine

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2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press. Connelly, Julia E. 1999. “Being in the present moment: developing the capacity for mindfulness in medicine”, Academic Medicine 74: 420-24. DasGupta, Sayantani et al. 2006. “Teaching cultural competence through narrative medicine: intersections of classroom and community”, Teaching and Learning in Medicine 18.1: 14-17. Engel, George L. 1977. “The need for a new medical model: a challenge for biomedicine”, Science 196: 129-36. Engel, John D. et al. 2008. Narrative in Health Care: Healing Patients, Practitioners, Profession, and Community. Oxford: Radcliffe Publishing. Epstein, Ronald M. 1999. “Mindful practice”, JAMA 282: 833-39. Fadiman, Anne 1997. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus and Giroux. Farmer, Paul 2003. Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley: University of California Press. Felman, Shoshana and Dori Laub 1992. Testimony: Crises of Witnessing in Literature, Psychoanalysis, and History. New York: Routledge. Fung-Kee-Fung, Michael et al. 2008. “Development of communities of practice to facilitate quality improvement initiatives in surgical oncology”, Quality Management in Health Care 17: 174-83. Goyal, Rakesh K. et al. 2008. “‘A local habitation and a name’: how narrative evidence-based medicine transforms the translational research paradigm”, Journal of Evaluation in Clinical Practice 14: 732-41. Harper, Ralph 1991. On Presence: Variations and Reflections. Philadelphia: Trinity Press International. Hunter, Kathryn Montgomery 1991. Doctors’ Stories: The Narrative Structure of Medical Knowledge. Princeton: Princeton University Press. Inui, T.S. 1996. “What are the sciences of relationship-centered primary care?” Journal of Family Practice 42: 171-77. Irvine, Craig 2005. “The other side of silence: Levinas, Medicine, and Literature”, Lit Med 24: 8-18. Kalmuss, Debra and Bruce Armstrong 2008. “Service-based research: linking public health research and practice to improve the quality of public health programs”, J Public Health Management Practice 14.1: 62-65. Kenyon, Jane 1996. “The Sick Wife”, Otherwise: New and Selected Poems. Minneapolis: Graywolf Press. Konner, elvin 1993. Medicine at the Crossroads: The Crisis in Health

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Care. New York: Pantheon Books. LaCombe, Michael A. and David J. Elpern, Eds. 2010. Osler’s Bedside Library: Great Writers who Inspired a Great Physician. Philadelphia: ACP Press. Leder, Drew 1990. The Absent Body. Chicago: University of Chicago Press. Lemieux-Charles, Louise and Wendy L. McGuire 2006. “What do we know about health care team effectiveness? A review of the literature”, Medical Care Research and Review 63: 263-300. Lipkin, Mack Jr. et al., Eds. 1995. The Medical Interview: Clinical Care, Education, and Research. New York: Springer-Verlag. Lister, E. et al. 2008. “I write to know what I think”: a four-year writing curriculum, J Am Psychoanalytic Assoc. 56: 1231-47. Loewald, Hans W. 1988. Sublimation: Inquiries into Theoretical Psychoanalysis. New Haven: Yale University Press. Lorde, Audre 1997. The Cancer Journals, special edition. San Francisco: Aunt Lute Books. Mann, Karen et al. 2009. “Reflection and reflective practice in health professions education: a systematic review”, Adv in Health Sci Educ. 14: 595-621. Manser, T. 2009. “Teamwork and patient safety in dynamic domains of healthcare: a review of the literature”, Acta Anaesthesiologica Scandinavica 53: 143-151. Mattingly, Cheryl 2010. The Paradox of Hope: Journeys through a Clinical Borderland. Berkeley: University of California Press. Merleau-Ponty, Maurice 1962. Phenomenology of Perception. London: Routledge. Middlebrook, Christina 1996. Seeing the Crab: A Memoir of Dying. New York: Basic Books. Mishler, Eliot G. 1984. Discourse of Medicine: The Dialectics of Medical Interviews. Norwood NJ: Ablex Press. Morris, David 2008. “Narrative medicine: challenge and resistance”, Permanente Journal 12:88-96. Murdoch, Iris 2001. The Sovereignty of Good. London: Routledge. Novack, Dennis H. 1997. “Calibrating the physician: personal awareness and effective patient care”, JAMA 78: 502-9. Oatley, Keith and Maja Djikic 2008. “Writing as thinking”, Review of General Psychology 12: 9-27. Polanyi, Michael 1983. The Tacit Dimension. Gloucester MA: Peter Smith. Peterkin, Allan D. 2006. “Narrative competence: psychotherapy for people

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with HIV”, Focus. 2006 (2): 4-5. Remen, Rachel N. 1997. Kitchen Table Wisdom: Stories that Heal. New York: Riverhead Books/Penguin. Rudnytsky, Peter L. and Rita Charon, Eds. 2008. Psychoanalysis and Narrative Medicine. Albany: State University of New York Press. Sands, Stephen A. et al. 2008. “Pediatric narrative oncology: interprofessional training to promote empathy, build teams, and prevent burnout”, Journal of Supportive Oncology 6: 307-12. Schafer, Roy 2004. “Narrating, attending, and empathizing”, Lit Med 23: 241-51. Schön, Donald A. 1984. The Reflective Practitioner: How Professionals Think in Action. New York: Basic Books. Stewart, Moira et al. 2003. Patient-Centered Care: Transforming the Clinical Method. Abingdon UK: Radcliffe Medical Press. St. Louis, Nicole M. 2010. A narrative intervention with oncology professionals: Stress and burnout reduction through an interdisciplinary group process. Doctorate in Social Work Dissertations. Paper 4. Available [online] at http://repository.upenn.edu/edissertations_sp2/4/ Trautmann, Joanne 1981. Healing Arts in Dialogue: Medicine and Literature. Carbondale: Southern Illinois University Press. Turner, Victor 1995. The Ritual Process: Structure and Anti-Structure. Chicago: Aldine Books. Wald, Hedy S. 2009. “Reflecting on reflections: enhancement of medical education curriculum with structured field notes and guided feedback”, Acad Med 84: 830-37. Wear, Delese et al., Eds. 1987. Literature and Medicine: A Claim for a Discipline. McLean VA: Society for Health and Human Values. Weil, Simone 2001. Waiting for God, trans. Emma Crauford. New York: Perennial Classics. Zaner, Richard M. 2004. Conversations on the Edge: Narratives of Ethics and Illness. Washington DC: Georgetown University Press.

LESSONS FROM A BRAIN DISEASE ANTÓNIO MARTINS DA SILVA

Narrative in clinical neurosciences Some years ago, when young doctors trained in clinical neurology they were taught (by tutors – the neurologists teaching them) to listen to the patient’s narrative of illness. This was considered the best approach to finding out what kind of neurological disorder the patient had. They also learnt that this approach was decisive to the diagnosis. At the time (the 1980s), before the advent of sophisticated imaging techniques, clinical judgement was ahead of, and more important than, any complementary examination. It must be remembered that, at that time, the so-called non-invasive imaging exams such as the CT Scan and the MRI were in limited use. Only invasive methods, such as the cerebral angiography developed by Egas Moniz or other exams performed under anaesthesia, were freely available. Training in neurology at the time was an excellent opportunity to hear about and discuss brain function and brain diseases with patients and with colleagues. The trainers, recognized as excellent neurologists, taught us that the patient’s history of illness (Anamnesis) was the most relevant factor in a neurological diagnosis. In present times and in everyday practice, neurologists go back to the patient anamnesis to reach a good diagnosis. But nowadays, influenced by the facility to access brain pathologies using fast and easy-to-use images or exams which show lesions, doctors interpret anamnesis influenced by what they see in such exams. Doctors pay less and less attention to what the patient says, losing oral communication. All at once they are losing the patient’s and the witness’s narratives. Nowadays doctors’ commitment is increasingly directed more to “the things they can see” than to “the things they tell me”, i.e. the history of disease narrated by both patient and witness. This is caused by doctors’ successive judgement adaptations to the possible solutions that can be found in extremely powerful complementary examinations. Unfortunately this excessive emphasis on the role of complementary examinations is now

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just another step in a progressive change in the clinical judgement made of the patient’s condition. However, while we may consider this tendency to incorporate the results of complementary exams with growing enthusiasm into medical reasoning, to the detriment of listening to patients’ complaints, this is actually not a new phenomenon. In his document entitled “The Art and about The Science of Medicine”, Hippocrates teaches us: .

that medicine can be of value is further demonstrated by the skill of those proficient practitioners whose actions are better proof than their words. It is not that such physicians look down on writers, but they believe that most men are ready to believe what they see than what they hear. (Hippocrates, The Art).

And in believing more in what they see, necessarily one needs more and more data to confirm doctors’ suspicions and reaffirm their judgement (and this increases dramatically the use of technologies to confirm medical reasoning, thus increasing the costs of practice), to the detriment of patients’ narrated complaints.

Why Narrative has been lost in our time As Preven and co-authors claim in their paper “Interviewing skills of first year medical students”, published in the Journal of Medical Education in 1986: Oral tradition of myths and legends, which are continually recreated by word of mouth in successive generations, still feature prominently in many non Western societies and impact profoundly on the experience of health and illness in these societies. In Western cultures this has been lost. (Preven 1986: 842-4)

Like Trisha Greenhalgh and Brian Hurwitz, we argue that: Perhaps it is partly because Western culture has lost its grip on this oral tradition that the skills of listening to, appreciating, and interpreting patients' stories are only rarely upheld as core clinical skills in medical curriculums. Much of the current emphasis in medical training is on the student acquiring the ability to express a patient's problem in the structured and standardised format that has come to be known as the ‘medical history’. (1999: 50)

We also agree that:

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Taking a history is an interpretive act; interpretation (the discernment of meaning) is central to the analysis of narratives (for example, in literary criticism). Narratives offer a method for addressing existential qualities such as inner hurt, despair, hope, grief, and moral pain which frequently accompany, and may even constitute, people's illnesses. The lost tradition of narrative should be revived in the teaching and practice of medicine. (48)

Or as Balint proposes in his book The Doctor, his Patient and the Illness (1957): At its most arid, modern medicine lacks a metric for existential qualities such as: the inner hurt, despair, hope, grief, and moral pain that frequently accompany, and often indeed constitute, the illnesses from which people suffer.

All these “existential qualities” are part of the Patient’s Narrative. As Rita Charon summarizes well, it is necessary to: Pay attention to the narrative’s performance – the patient’s gestures, expressions, body positions, tones of voice. Only in the telling is the suffering made evident. Without the telling, not only treatment but suffering, too, might be fragmented. (2004)

Charon defines narrative competence as “the set of skills required to recognize, absorb, interpret, and be moved by the stories one hears or reads”. She continues: “Not only the story of an illness, but the illness itself unfolds as a narrative” (idem). Narrative in medicine is always a very apt approach to test the level of communication and the relationship between patient and doctor. Four different methods can converge, or not, to explore the meanings of narrative: i) how patients feel; ii) how patients describe their symptoms; iii) how doctors see (hear?) and iv) how doctors interpret (scientific knowledge). The level of communication between patient and doctor needs to be clear, open, loyal, and free from any noise that might disturb or distract from such a relationship. And noise, nowadays, can easily be found in the many disruptions experienced during patients’ consultations – phone calls, other patients’ comments, excessive attention to IT, the use of certain devices, etc. With these distractions, patients’ histories and clinical examinations are certainly useless and the narratives incomplete or inadequate.

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Narrative in Brain Diseases: Epilepsy as a Disease Model Epilepsy is a brain disease in which the narrative is often the only key to diagnosis, helping in categorizing the phenomenon and in locating its origin within a brain region. Patients with epilepsy who tell us the narrative of the occurrence of a seizure, or what they know and how they feel on the development of epileptic seizures, are a splendid example of a (hi)story that cannot be lived by others and a (hi)story that we cannot miss if we wish to make a correct diagnosis. If we miss these narratives we miss the definition of the epileptic attack and the seizure description. Without the seizure description the correct seizure classification is impossible. Without classification the correctness of the treatment will be left to random chance. And without seizure classification the brain location of the seizure’s origin is impossible to determine, and the surgical treatment that is sometimes necessary becomes impossible! This cascade of successive and unfortunate events can only be stopped, or prevented, if patient and witness narratives have been well listened to from the first medical approach of the patient. But a narrative of a disease in which the patient is aware of what is happening to him is one thing. A narrative of a disease in which the major event – the epileptic attack or seizure – is frequently lost to the patient himself because he is not alert or his conscience is disturbed is quite another. This is one of the specificities of epilepsy: a frequent loss of consciousness limits patients’ narratives. In such circumstances, how can the patient tell us the entire story without a witness’s narrative? In the examples of epileptic disease, we will approach the patient’s narrative – what patients feel and how they describe it – and the doctors’ interpretations on hearing the patient’s and witness’s respective narratives. This interpretation is always tainted by analogy (the diagnosis of the patient’s disease is made by what is heard plus what is seen in the patient) and what has been seen and heard in “similar” cases. The narrative of such an illness may be incomplete for a number of reasons, because even if the patient is capable of telling us what he feels, he may not be aware of all the symptoms, or capable of describing them, especially if he falls unconscious. In such circumstances, the narrative must also be based on witness interview. Narrative in epilepsy is even more complex than in other diseases: How does the patient feel – before, during and after an epileptic attack (or epileptic seizure)? How does the patient tell us his feelings? How does the patient interpret the disease? How do “others” – relatives, witnesses, doctors, viewers – perceive what happens to the patient? We know that

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they “only” tell us what they see (and often patients’ feelings are not recognized). When such a description comes from a writer who is at the same time an epileptic patient, as Dostoyevsky was, we may interpret the patient’s behavior better. At the same time we may establish the location of the brain dysfunction better. We can also better interpret the historical concepts of epilepsy as a brain disease (not more sacred than others, as claimed by Hippocrates). Dostoyevsky experienced epileptic seizures that recurred throughout his life. The narrative of seizures was well described in many of his texts, namely the description of epilepsy as experienced by Prince Myshkin, one of the key characters in his novel The Idiot, and that of Smerdyakov in the book The Brothers Karamazov. In The Idiot, Dostoyevsky describes various aspects that have been connected with epilepsy from the oldest descriptions: the impulsive behavior, the “falling evil”, references to all kinds of morbid conditions characterized by the sudden fall of the victim, also “the caducus”, identified in Latin texts, the lunacy, the possession, the spirits, the “spirit cry” that was reported in antiquity and assembled by Temkin in his book The Falling Sickness (1971) – these were extremely well documented in the characters of Dostoyevsky’s books. Nowadays, epilepsy is still a condition that “rarely remains unnoticed in the social environment of the afflicted” and “the unexpected confrontation with a seizure, even in a perfect stranger, often profoundly impresses the terrified observer” (Wolf 2006: 3-10, 2010: 35-43). Not only do individuals react by being petrified, but this also occurs with groups of people, as is elegantly shown in Raphael’s masterpiece Transfiguration, in which some of Christ’s Apostles are terrified by a boy’s expression during an epileptic attack. Calling impulsive behavior “possession” is current in literary narratives describing epileptic attacks – narratives attributed both to lay people and to experienced physicians. Constantinus Africanus (c. 10201087), a physician from Carthage, tried to distinguish between lunacy and possession. He noticed, for example, the similarity between epilepsy, lunacy, and demonic possession, and proposed the following test to decide the nature of the evil: A formula commanding the demon to recede would be spoken into the ear of the patient. If he were lunatic or demoniac, he would be in a death like state for an hour. Afterward he would be able to tell anything he might be asked. If, however, he did not fall down, this would prove him an epileptic. (Temkim, 1971)

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With this description the physician stated that some cases of epilepsy were not, by their nature, cases of falling evil. Other texts, for example Epilepsy and other Chronic Convulsive Diseases: Their causes, symptoms & treatment by Gowers (1885), tell us about the progressive symptoms and give details of the initial symptoms or the objective mode of the onset of an epileptic attack. However, texts by medical personnel are based on the scientific knowledge of the disease at the time and the narrative presented is again much more what was expected by the doctor than what was actually felt by the patient: A new error in the study of epilepsy may be said to have commenced with the investigation, by Hughlings Jackson, of the modes of onset of attacks which begin deliberately, combined with that of the subjective sensations with which attacks commence that are less deliberate in their onset–a mode of investigation which, much more than the attacks themselves, deserves the epithet ‘Jacksonian’. (1994)

And Gowers continues to affirm that: “in considering this part of the subject it is important to distinguish, but not to separate, the cases in which the visible phenomena of convulsion are epileptoid, and those in which they are hysteroid.” In fact it is well known that a form of epilepsy in which the symptoms of fits start at the extreme of a limb, progressing to the face or/and to the full hemi body of the patient or sometimes evolving to generalized convulsion, is called Jacksonian. However, the narrative of what the patient feels often differs from the narrative of the witness. This is because the real beginning could be “only things that the patient feels” and not “symptoms that the patient exhibits”. However, very often the patient forgets what he feels upon the seizure beginning. When the patient does not forget this beginning, it can be interpreted as an aura, the beginning of the seizure often indicating the brain region involved in the electrical field enhancement that starts the fit. The narrative of epileptic symptoms initiating epileptic seizures can be found in medical texts and in scarce patients’ descriptions. They are the most difficult to see, but remarkably felt by the patient. The beginning or the aura of the attack, such as the “irritability of temper” described by Gowers in his book on epilepsy, is hard to report upon, but the precursory symptoms are frequently the most emphasized by the patient. A splendid narrative is achieved when the patient is not only feeling the symptoms, but is also capable of describing and reporting them within a narrative. The best source for the description of the symptoms themselves will be found in narratives reported by patients who are

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themselves writers. The best examples can be found in the texts written by Fyodor Dostoyevsky. As mentioned before, in diverse narratives, Dostoyevsky elegantly describes the symptoms of epileptic fits. Besides The Brothers Karamazov, it is in The Idiot that the descriptions of a patient (the author himself) with precursory symptoms, auras and attacks are remarkable and illuminating from a medical point of view! (Dostoyevsky 1966: 263, 265, 272). The reading of literary texts can teach us and help us identify a person with epilepsy, and can also be of use in characterizing epilepsy. But such elegant descriptions are not available in everyday practice. On the contrary, it is necessary to learn to listen to the flawed way in which the patient expresses feelings, opinions, and emotions. It is necessary that doctors and other healthcare professionals, and also relatives, friends, and witnesses, learn how to listen to and decode patients’ complaints. And we cannot forget that the patient’s language for his disease can often be different from the witness’s or the doctor’s language, and so his narrative may differ from those others. But because medical teaching is centered on biomedical scientific knowledge, a reorientation, or better, an inclusion of other ways of reasoning is necessary. But the only possible way to change mentalities is to teach students differently. It is fundamental to recognize and accept that: “the relentless substitution during the course of medical training of skills deemed “scientific” – those that are eminently measurable but unavoidably reductionist – for those that are fundamentally linguistic, empathic, and interpretive should be seen as anything but a successful feature of the modern curriculum” (Greenhalgh and Hurwitz 1999: 50). Thus we need to change the undergraduate/graduate medical curriculum in order to teach and to prepare doctors to be competent in perceiving the relevance of narrative in order to better approach their patients’ realities. For such competence will turn them into more effective professionals in their practice. As recognized by Rita Charon in her text, published in The New England Journal of Medicine: When a doctor practices medicine with narrative competence, he or she can quickly and accurately hear and interpret what a patient tries to say. The doctor who has narrative competence uses the time of a clinical interaction efficiently, wringing all possible medical knowledge from what a patient conveys about the experience of illness and how he or she conveys it. This competence requires a combination of textual skills (identifying a story’s structure, adopting its multiple perspectives, recognizing metaphors and allusions) creative skills (imagining many interpretations, building

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curiosity, inventing multiple endings), and affective skills (tolerating uncertainty as a story unfolds, entering the story’s mood). Narrative competence includes an awareness of the ethical complexity of the relationship between teller and listener, a relationship marked by duty toward privileged knowledge and gratitude for being heard. The more medicine understands the complexities of illness, the better clinicians can formulate their roles with respect to patients, both in technical dimensions and in dimensions of meaning. Narrative studies, many physicians are beginning to believe, can provide the “basic science” of a story-based medicine that can honor the patients who endure illness and nourish the physicians who care for them. (Charon, 2004)

Works Cited Balint, Michael 1957. The doctor, his patient and the illness. London: Tavistock Publications. Charon, Rita. 2004. “Narrative and Medicine”, New England Journal of Medicine. 350 [9]: 862-864. Dostoyevsky, Fyodor 1966. The Idiot. London: Penguin Classics. Greenhalgh, Trisha 1999. “Narrative based medicine: Narrative based medicine in an evidence based world” British Medical Journal, 318: 323-325. Greenhalgh, Trish and Brian Hurwitz 1999. “Narrative based medicine. Why study narrative?” British Medical Journal. 318: 48-50. Gowers, William 1994 [1885]. Epilepsy and Other Chronic Convulsive Diseases: Their Causes, Symptoms and Treatment: Nijmegen: Arts & Boeve Publishers. Preven, David et al. 1986. “Interviewing skills of first year medical students” Journal of Medical Education. 61: 842-4. Temkin, Owsei 1971. The Falling Sickness. A History of Epilepsy from the Greeks to the Beginning of Modern Neurology. Baltimore: Johns Hopkins University Press. Wolf, Peter 2010. “Sociocultural History of Epilepsy”, Atlas of Epilepsies, Vol. 2. Ed. Chrysostomos Panayiotopoulos. London: Springer, 35-43. —. 2006. “Descriptions of Clinical Semiology of Seizures in Literature”, Epileptic Disord. 8: 3-10.

SELVES, HOLDING THEIR OWN WITH ILLNESS ARTHUR W. FRANK

I wrote what became my first book, At the Will of the Body (1991), because until I had told the story of my several years of critical illness, I could not get on with my life. I was no longer ill but unable to think of myself as well, and telling that story was as necessary to me as surgery and chemotherapy had been. I believe this need to tell often gets lost in scholarly research about illness narratives, including my own writing. We academics forget the unquestioned compulsion felt by people engaged in living their lives. Illness, for me, was not a potential topic that I could write about. Illness was what I had to write about, in order to go on living. That recollection is a kind of preface to whatever else I say about ill people and their stories. What I continue to need from illness narratives, to live my own life, is summarized in an idiomatic phrase that I once thought was simple, but reactions to it have proven otherwise. The phrase is “holding one’s own”, usually spoken about some other person, as in “He’s holding his own”, but also spoken in the first person, “We’re holding our own”. That phrase may be used less commonly today than it was in the decades of my younger life, but it is still recognizable as something people say in times of adversity. Illness narratives, to me, are a gift, both to other people and to oneself. People who are holding their own give themselves a story to feel more certain that they are holding their own. Telling the story to themselves reassures them. And these people offer their stories of holding their own to other people who need that gift because they are barely holding on. I came to this idiomatic phrase holding one’s own in a context that had nothing to do with illness. In 1991 my wife and I took a sort of recoveryfrom-illness sabbatical trip to Europe. We were touring in Venice and went to a grand palace that had been turned into an art gallery. The exhibition was a major retrospective of Andy Warhol, including videos about his films. In one video, a critic was commenting on the acting of Edie Sedgwick, who starred in several Warhol films. These films were made in the mid-1960s, just before second-wave feminism, and Sedgwick

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then died of a drug overdose, leaving feminists to figure out her place in relation to their thinking about women. This critic said that when she watched Edie Sedgwick in a Warhol film, she saw a woman positioned between the male gazes of a co-star, a cameraman, and a writer/director. What she saw was a woman “holding her own” as the object of these multiple, intrusive, male gazes. For those who do not remember the films, they involved a lot of dialogue between a man and a woman who were in an ambiguous sexual relationship that bordered on hostility; both were in their underwear for most of the films. I think the critic was getting at how Edie Sedgwick was not only performing vulnerability as an actor playing the part of a vulnerable woman; she also embodied vulnerability. As a woman surrounded by men in a closed space, she herself was vulnerable, and that was the edge that made her performances compelling. We in the audience watched her hold her own against gazes including our own, because we became part of the network of visual relations to which she was vulnerable. Several years went by before I connected Edie Sedgwick to illness and thought seriously about what this phrase “holding her own” represents in terms of medical patients and the condition of being ill. The medical patient is usually partially clothed and positioned as the object of intrusive gazes, often with a potential for pain being inflicted. As a player in the production of clinical theatre, the patient performs her or his vulnerability. But the patient also embodies vulnerability. To be a patient is to have to hold one’s own. With this analogy in mind, I can be more specific about what that phrase actually means. Sociology offers an initial perspective on holding one’s own. Erving Goffman understood the self as a function of the self-representational practices that constituted possibilities for making claims about who one was. The self in Goffman’s imagination is what one person can effectively claim for other people to recognize as valuable and thus worthy of respect. A self is defined by the effectiveness of its claims to others’ deference – their respect for the self’s dignity. Deference is claimed by sustaining proper demeanor, including personal grooming, appropriate speech, and other signs of being a person worthy of deference (Goffman 1967). Goffman’s world is precarious, always potentially out of control. Any self is vulnerable to having its claims to deference undercut. Stigma, in Goffman’s view, is information – either an embodied condition or personal history – that could discredit the claims a person is making for his or her self (Goffman 1963). Goffman’s book Stigma is about practices of managing potentially discrediting information; in other words, how people hold their own against threats of being discredited. Goffman understands

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stigma as a constant, universal risk of selfhood, because any self always risks being discredited on some grounds. Holding one’s own is the fundamental human work of sustaining a self in this condition of endemic vulnerability. Vulnerability, from a narrative perspective, is a condition in which the story that has grounded the self’s claims to deference, respect, and dignity has broken down. That is what illness does to people: it breaks down the bases on which they have claimed to be a self, entitled to be treated in certain ways. These include but are hardly limited to: x the physical issues that are the focus of medical attention: loss of living in a body that goes about living without being interrupted by troubles ranging from inconveniences in self-care to chronic pain and disability; x those physical issues morph into the social issues that are the focus of psychosocial attention: loss of the ill person’s employment and financial viability; but also loss of his or her capacity to present an appropriate demeanor, including choice of clothing and capacity for grooming and cleanliness; x and, to truncate a list any of us could extend, narrative issues: illness takes away a person’s ability to project a story of his or her future as a viable self, a self worth living both for one’s own sake and for others’ sakes. Now, finally, I can provide something approaching a definition. Holding one’s own is what Goffman would call a collection of management techniques for neutralizing the effects of vulnerability. But here I need to depart from the discourse of sociology, because more is going on. Holding one’s own is not simply practical and instrumental; as I will try to show, it is also moral. Here I turn to the great lecture delivered in grand rounds at the University of Chicago in the early 1990s by the New York literary critic Anatole Broyard, who was dying of prostate cancer. “It may not be dying we fear so much”, Broyard told his medical audience, “but the diminished self” (Broyard 1992: 25). That, to me, expresses the core problem of living with illness, disability, and normal deteriorations, including aging. One holds one’s own against the fearsome prospect of becoming a diminished self. If I think back to my years of critical illness in the 1980s and then project forward to when I will someday be ill again, the crucial question seems to be what am I afraid of? Broyard expresses my fears exactly. It is not dying, at least not at my present stage of life. What I fear is what

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diminishes my self. To specify what “diminishes my self” means, I begin with Goffman’s notion of the self as the possibility of making various claims both to myself and as expectations for how others will treat me. But again, more is involved. My undiminished self also has spiritual and aesthetic dimensions. It involves claims for creative expressiveness. And an undiminished self feels valued by other selves and able to express to others how it values them. Goffman’s deference claims are far easier to specify than spiritual and aesthetic fulfillments, but they may be less important. Returning, provisionally, to a sociological perspective, I can specify Broyard’s notion of diminishment as particular claims that, when I am ill, I will no longer be able to make. A principal claim is to be able to use my body according to my will, rather than living at the will of the body, to quote the title of my own memoir of illness. A complementary claim is the capacity to set my own daily schedule, as opposed to having it set by demands of treatment. When I contemplate future illness, losing the will of the body’s functioning is tied to losing the degree of control I have over my time. To be a medical patient is to give up effective control of time – time ceases to be one’s own, as the clinic appropriates the patient’s time. I could go on with other specific diminishments – readers can fill those in. Broyard then sets up a project of how to avoid feeling that one’s life is diminished by illness, and this project goes considerably beyond deference claims. I emphasize that avoiding diminishment is not about denying the present and eventual effects of illness, including dying. Nor is the need adequately described as coping, in the sense of merely getting by. “It seems to me,” Broyard said, “that every seriously ill person needs to develop a style for his illness” (idem). I have spent years thinking about what Broyard means by style – how is that idea actualized by people living with illness? My first and most literal example of an ill person seeking a style is from one of my favorite illness memoirs, Time on Fire, written by the actor Evan Handler who had leukemia in his 20s (Handler 1996). After multiple chemotherapies, Handler’s hair stopped growing back. This was before the shaved-head look became fashionable, and his loss of hair represents the irreparability of the multiple losses Handler has experienced during his illness. In the following passage he describes finding a style that allows him to feel less diminished by his loss of hair. Please hear the struggle and the ambivalence of a person trying to hold his own against a vulnerability that has heavy symbolic value. Eventually I started to develop a pride in my new look and all the repercussions of it. I was going to be a Mick Nichols kind of guy.

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Everyone would know I wore a wig, but I would never be seen without it, and people would wonder if the rumor was true or just some strange showbiz legend. [...] But I realized that wasn’t for me and I endured the awkwardness and tried to cultivate a new self-image. One of the tattooed survivor. Forever branded by his battles, but refusing to cover his scars for the comfort of any one else. (250)

In this passage, Handler tells part of a story about needing a style, in Broyard’s sense. Insofar as this passage is situated in the long story that is his memoir, I think it is useful to say that his style depends on his story, in order for that style to be convincing to the person living it and to other people who are expected to recognize that style and honor its claims. For Handler’s style to be effective as a self-presentation, other people have to be attuned to what we can call the “tattooed survivor” narrative. That narrative was less recognizable when Handler wrote in the mid-90s than it is today. I notice how many film heroes, especially those taken from comics, have established the recognizability of that narrative. They have survived some physical injury or psychological trauma, and their costume is a kind of external tattoo. I will return to cartoons presently, but first another detour to say something more about stories and why a style works for a person holding his or her own. The literary critic Northrop Frye, in his Norton Lectures in 1974-75, wrote that “kings would have no motivation to act like kings if poets did not provide the imaginative conception of kingship” (Frye 1976: 178). We can understand Frye sociologically and psychologically. We humans do not know how to be the self we become – we do not know what such a self is – until some story offers us an imaginative conception of being that kind of person. Stories teach us as individuals, and storytellers give imaginative conceptions sufficient cultural recognizability that others will honor the claims made when someone enacts this imaginative conception of who she or he is. Sudden illness or the onset of disability is a moment when people find themselves lacking a viable imaginative conception of who they are. When I started writing about illness in the late 1980s, one of the Big Problems that I was responding to was my own lack of viable imaginative conceptions of selfhood during illness. Today, when illness stories can seem so pervasive that their effect risks being devalued by inflation, it is easy to forget how few such imaginative conceptions were available in the 1980s. Going back to the quotation from Evan Handler, what he calls the “tattooed survivor” style would scarcely have been recognized and supported as an imaginative conception of self thirty years ago.

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Here I will venture the big generalization that those of us writing illness memoirs during the last decades of the twentieth century – and I choose especially Stewart Alsop, Audre Lorde, Reynolds Price, Lucy Grealy, and in her own indirect way Susan Sontag – shared a central project of telling stories that made recognizable an imaginative conception of illness that was viable to live with over an extended period of time – the period of time we call survivorship, although very few people are happy with that word. I question whether that is still the project of those writing about illness in this decade. If it is not, one reason is that contemporary writers are able to trade on the imaginative conception of illness developed by those of us writing in the last century. Writers in this century can move on to develop more specific concerns. The late twentieth-century memoirists of illness offered themselves as diverse exemplars of particular imaginative conceptions. I emphasize that none of these writers wanted readers to adopt the same imaginative conception that they had found. The charm of these books is each author’s eccentricity in his or her imaginative conception of self. Their concern was to model a process by which readers might discover their own imaginative conceptions of illness. When Anatole Broyard says that after his diagnosis he started taking tap dancing lessons, he is not recommending others do that specifically. He is saying that everybody needs to find a style that will allow them to feel less diminished by illness, and finding that style generally involves taking off in hitherto unexplored directions. What Broyard called for is happening. The possibilities for ill people to participate in diverse artistic activities have flourished during these last decades. The most basic of these activities is becoming the storyteller of one’s own illness. While that does not require studio space, artistic materials, or musical instruments, narrative resources are required. In this last part of my chapter, I want to turn to the situation of people who need stories to help them hold their own, but who lack certain capacities or resources for storytelling. Sometimes this lack can be immediately physiological. Lars-Christer Hydén has recently written a series of articles on what he usefully calls broken narratives (Hydén 2011 a; 2011 b). A broken narrative is a story that cannot be told due to conditions ranging from speech impediments to dementia. In the book on broken narratives that Hydén co-edited, my own chapter deals with narratives broken by extreme grief over the death of a child (Frank 2008). Such stories can be told only in fragments, that fragmentation reflecting the relation of the storyteller’s consciousness to its world.

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Hydén’s recent emphasis is on how people with dementia are sustained in storytelling relations by the work of others – spouses or care workers – who collaborate in co-constructing their stories. The co-constructor offers the ill person questions that admit simple responses, and then knits these responses together so that a coherent narrative emerges from the sum of their interaction. The point is not the content of the story. Participation in storytelling is what asserts the ill person’s claim to personhood, because the capacity for narrative is a central requirement of that claim. Coconstructed storytelling can be called a moral act in the specific sense that a moral community is one in which claims to dignity are honored, but that community has to have some boundaries if those claims are to mean anything. Hydén, like almost every writer on illness, is concerned with analyzing disputes over the boundaries of moral communities, and he takes an advocacy position about who should be included. To rephrase Broyard’s statement in Hydén’s terms, what we fear is not so much death but rather the loss of inclusion in the moral community, because that membership is the basis of our claims to dignity. Hydén’s work moves us away from those ill people whom we might call privileged in their symbolic resources. Evan Handler is an easy example of Broyard’s advocacy for finding a style of one’s own, because that is what actors do. Their lives are self-fashioning. All the illness writers to whom I have referred so far are symbol workers in their lives outside illness. That is clearly a non-representative sample, although it is usually those whom Frye calls poets who provide others with imaginative conceptions of illness. But to see how people who are not symbol workers find the narrative resources necessary to tell stories enabling them to hold their own, I need to turn to a very different storyteller. This storyteller is Willy, a child whom the anthropologist Cheryl Mattingly met during her decade-long research project on inner-city families in which a child was chronically or critically ill (Mattingly 2010). I turn to Willy because his body badly needs a story, and how Willy fashions a story is a useful example of how storytelling proceeds among those who are not privileged in their symbolic resources. Willy represents the tenacity with which people can find the stories their bodies need, using whatever narrative resources they can find. When Willy was a toddler, his mother went to work and left her children alone in the house. Willy’s slightly older sister decided she was going to cook. Willy was standing next to her when she tipped over a frying pan filled with boiling grease. He was horribly burned and spent his childhood having reconstructive facial surgeries.

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To minimize scarring, Willy has to wear a fitted mask 24 hours a day. Getting Willy to wear the mask is a constant struggle until, when an occupational therapist is fitting one of the new masks, she says to Willy, “Now you look like Batman” (181). It is one of those blessed clinical moments when somebody says exactly the right thing at the right time. Willy finds a style that allows him to hold his own against the demands and sometimes the assaults of his scars and disfigurement: he identifies with superheroes who wear masks. By the time Cheryl Mattingly met Willy, he had settled into his longest running identification, which was with Buzz Lightyear, cartoon hero of the Toy Story movies. In the films, Buzz refuses to remove his visor because he believes earth air is toxic. Willy is instructed not to remove his mask, to protect himself from “toxic” air. Mattingly was surprised by how many children developed strong identifications with characters in Disney films whose embodiment somehow mirrored the children’s disease and treatment issues. Identification reflected a sense of shared vulnerability. But this identification was not simply passive. Children creatively adapt the film stories to fit their circumstances. Thus, Toy Story’s plot involves an evil boy next door, Syd, who threatens to perform surgery on Buzz. In the film, Buzz is rescued. In Willy’s adaptation of the story, when Willy has surgery, his story is that Buzz – his action figure – goes to the hospital with him and also has surgery (183). Hospital workers are quick to pick up on Willy’s identification with Buzz, and with occasional prompting from Willy’s mother, they incorporate Buzz into clinical tasks. Mattingly calls these “healing dramas”. A healing drama happens when a moment of treatment – a moment that is routine for the professional but often discomforting or threatening for the child – is transformed when the child and the clinician collaboratively reframe the task into a plot that enlivens, or at least makes endurable, what is often monotonous and sometimes painful. The healing drama offers the child an imaginative conception of him or herself in which the child can feel less diminished. My favorite brief example of healing drama occurs when Willy and his mother are sitting in a hospital waiting room that is by a corridor. A physician passing by calls out “To infinity and beyond”, which Mattingly tells us is one of Buzz’s expressions. Willy is delighted (182). His mother feels that the hospital cares about her child as a person, not simply a surgical case. The physician realizes that Willy needs more than reconstructive surgery. He needs support in finding a style through which he can live the life that the accident and surgeries impose on him. As great as the years and social distance separating Anatole Broyard and Willy are,

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the fundamental need is the same. To sustain long-term illness and treatment, people need to discover a style for being ill. That style depends upon a narrative that has sufficient imaginative force to prevent a life with illness from seeming diminished. The occupational therapist who says that Willy looks like Batman and the physician who calls out some “Buzz-speak” are happy exceptions to Broyard’s complaint that doctors tend to discourage patients’ stories. Traditionally, physicians think of patients’ stories as part of a medical history – a literal account of what has already happened. But stories do more than report the past. Stories are the medium of discovery in which people discover – not report but discover – a style or imaginative conception of themselves living with illness. Some people show remarkably creativity in discovering a story of illness; others depend on those who care for them to co-construct a story; still others, like Willy, adapt stories they have borrowed. As a sort of conclusion, I want to broaden the scope of my argument by observing that, while I have focused on ill people, the issues involved are also relevant to those who care for them. In the late 1980s Arthur Kleinman described the pervasive demoralization of both patients and clinicians (Kleinman 1988). Too many healthcare workers have lost the imaginative conception of their work that they need for their lives to be meaningful. The working conditions of institutional healthcare narrow people’s imaginative conceptions of themselves. Healthcare workers also have to work to develop and sustain a viable style. They need a story in which they can hold their own. When healthcare workers fail to support their patients’ creative attempts at holding their own, it is often because they themselves receive little support in being creative healers – their work is reduced to itemized task accomplishments. They too are merely coping. But then there are the moments that Mattingly calls healing dramas, when a story is co-constructed that offers both patients and healthcare workers an imaginative conception of a self that remains undiminished despite its circumstances. If ill people and clinicians are to develop their respective capacities to enact such moments, the arts and humanities have a vital role to play, offering resources for reflection and creativity. The healing-arts project is not, however, best thought of as a critical or even hermeneutic one. Instead, the project is broadly pedagogical. What matters on the illness side is building one’s own capacity for finding the story your body needs, and what matters in offering care is recognizing others’ storytelling work – the course of which is tentative, conflicted, and fragmented – and supporting that work.

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Humans are often described as being natural storytellers. I have come to believe that is only half true. People do have a natural capacity for storytelling, but telling the story that allows a person to hold his or her own is hard work that requires the support of others. That support is a gift, but it is also participation in a relationship that truly is reciprocal.

Works Cited Broyard, Anatole 1992. Intoxicated By My Illness. New York: Clarkson Potter. Frank, Arthur W. 2008. “Caring for the Dead: Broken Narratives of Internment”, Health, Illness and Culture: Broken Narratives. Eds. Lars-Christer Hydén and Jens Brockmeier. London: Routledge, 122130. —. 2002 [1991]. At the Will of the Body: Reflections on Illness. New York: Mariner Books. Frye, Northrop. 1976. The Secular Scripture: A Story of the Structure of Romance. Cambridge, MA: Harvard University Press. Goffman, Erving 1967. Interaction Ritual: Essays on Face-to-Face Behavior. New York: Anchor. —. 1963. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs NJ: Prentice Hall. Handler, Evan 1996. Time on Fire: My Comedy of Terrors. New York: Owl Books. Hydén, Lars-Christer and Eleonor Antelius 2011a. “Communicative Disability and Stories: Toward an Embodied Conception of Narratives”, Health: An Interdisciplinary Journal 15 [6]: 588-603. —. 2011b. “Narrative Collaboration and Scaffolding in Dementia”, Journal of Aging Studies 25, 339-47. Kleinman, Arthur 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books. Mattingly, Cheryl 2010. The Paradox of Hope: Journey Through A Cultural Borderland. Berkeley: University of California Press.

DISSONANCE AND DECISION* RICHARD M. ZANER

“I don’t know everything, but I know it’s a story with wings Sara says. They're hard to catch.” —Thomas Wharton, Icefields

It is surely not news that many clinical situations remain unresolved; and if resolved, often this is due not so much to calm, rational discussion among family and health professionals, but emotional or implicit value commitments. Becoming involved in a clinical situation is frequently to encounter a serious breakdown in conversation, sometimes involving a veritable riot of voices, each of which clamors to be heard, regularly resulting in a confusing muddle or an aggressive anarchy – or, perhaps, profound if also belligerent silence. Trying to relate to such situations well and honestly can be a difficult and not always pleasant task: amidst all the silences, or the shouting and yelling, each person is nonetheless earnestly trying to make sense of things – in the end, of their loved ones and even their very own lives. Roger Rosenblatt understands this; each of us, he wrote, “has some monumentally elusive tale we are always trying to get right” (Rosenblatt 1997: 102). However, ‘getting it right’ is not made any easier when the people involved are at loggerheads with one another. In what follows, I try to let some of the people I met in my clinical involvement during my more than two decades at Vanderbilt’s medical center have their say – I tried earnestly to listen and make sense of it all *

This narrative is a substantial revision of one I first presented at The Langdon Review of the Arts in Texas Weekend, September 9-12, 2009, Tarleton State University’s Dora Lee Langdon campus in Granbury, Texas, entitled “If You Would Only Listen.” All characteristics that might identify any person, except myself, in this narrative have been altered to protect their privacy. I should also note that the final reflections echo those in my article “On Telling Stories”, which is scheduled to appear in a book devoted to my writings: Clinical Ethics and the Necessity of Stories: Essays in Honor of Richard M. Zaner, Dordrecht: Springer Verlag, Osborne P. Wiggins and Annette C. Allen (Eds.).

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with them, and for myself. I hope that I got their stories right. I gradually realized as well that, not unlike some eerie obbligato riding atop an otherwise plain (even if at times loud and angry) melody, I was unable to take myself out of these stories. And, with that, it also came to me that I too often needed help as I sought to keep my bearings in the face of the grief and loss that marked so many of those occasions, as, growing older together, in Alfred Schutz’s idiom, we tell and listen within the unfolding of our common lives. Infused in all this, however, is something furtive: while telling a story, it is not only because I somehow need to tell it – though there is that, I readily confess – but in the telling of it, I – and you, too, if you come with me – must ineluctably face the tricky and arduous questions following quickly in its wake; not only about death and loss, but also life and joy. I do not know how far along that path I have come; I do think, though, that I am gradually getting a better sense of that place where wonder holds sway, despite what may seem impossible entanglements, as in the following story. The surgeon was quite young, just a year or two out of a grueling neurosurgery residency completed at our institution – highly trained, they said, with a very promising career ahead of him. On his way up, though, as they say,, he would still have to manage quite a few routine cases, like the one that brought me over to talk with him and the nurses working with him. Josh Dolman looked thoroughly frazzled, neither highly trained nor all that promising the morning I went to his unit, requested by a nurse who worked there. “He’s really upset,” she said on the phone when she asked for a consult, “that patient’s family is driving him nuts, and he’s about to throw in the towel.” Meaning? “Meaning,” she answered my as yet unasked question, “he’s at the end of his rope. He wants to let someone else take over his case.” And, who are you? “My name is Ruth. If you can come over now…” Sure. “…We’ll give you all details when you come over, it’s complicated.” Hell of an introduction, I thought to myself; but I agreed to stop by as soon as I could, find out what was going on. I had not done a consult in surgery for some time; mostly, surgeons didn’t think to ask me. Nor did Josh Dolman, I quickly reminded myself. It was his nurse who called. This could be a sticky situation, I thought to myself as I walked over from my office across the way from the hospital. It was a beautiful day, rare for that place at that time of year: crisp, clear, a gentle wind blowing. This buoyed me up considerably, until, going

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in the door closest to the elevators up to that floor, I remembered what I was there for: a sort of scouting expedition, as I first saw it, seeing if there was anything about the situation that would prompt such a call for my help. Ruth had not been exactly forthcoming in what she said. “Not by phone,” she had said. Why not? “Well, I mean, it’s complicated,” she had said, “and I don’t give very good phone, okay?” I understood that, alright, being similarly afflicted, and quickly agreed. What she had said piqued my curiosity. Though not directly, the call did come from a surgeon, no less; as I said, those folks hardly ever let on that any help was ever needed - part of their training, I was sure. Friendly enough, of course; I even had coffee somewhat regularly with the head of the General Surgery residency program. But no help needed thank you very much, when at work, at the bedside, much less in the OR. So, on my way to what seemed the darker side of things, I still felt very good that day – that atmosphere, that air, so rare for that city. I would much rather be out and about, but as I rode up in the elevator, I was already caught up in what had been left unsaid. As I turned into the hallway where their unit was located, I noticed several nurses at the nurses’ station, looking expectant. Looking for me, I supposed. They were, for one walked up to me immediately and introduced herself as Ruth, the one who had called, and now said she already knew what I looked like. She had been at the in-service I had given some weeks prior. “That was really interesting,” she said. “Glad you thought so,” my laconic reply. I was not impolite, just eager to find out what had prompted her call. She did not disappoint, but opened full-bore, clearly stressed and distressed. “Mr. Settles has been diagnosed with AAA, triple-A as we call it,” she began. “Whoa, slow down,” I urged, “what’s ‘triple-A’?” Even though I thought I knew what that meant, I had learned it is always better to make sure I did understand, that there was nothing hiding beneath the sharp edges of such words. “Sorry. It’s an abdominal aortic aneurysm, where the aorta bulges out like a weak spot on a worn out inner tube. His is a big one, right in the middle of his abdominal cavity, and already on the verge of bursting. It bursts, he dies.” Rather short in height, she had to look up at me. Unusual, but she was that tiny; so am I, of course. Neither of us would get the tall prize. Anyway, she went on to explain why Mr. Settles was in their unit. He had been referred by a local doctor who thought that surgical repair was needed – or did not want to make that decision on his own. Seems that his

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triple-A would require immediate surgical attention, probably open repair, since it was unlikely that a stent would work. An aneurysm is usually considered to be present if the outer aortic diameter measures over 3cm (normal diameter is around 2cm). His was more than 5.5cm, obviously very large and very dangerous; it could burst at any moment and if it did, he would die, very painfully, within minutes. She also pointed out – I realized that I came off as a neophyte – that triple-A is most often seen in elderly men (between 65 and 75), especially those who smoke, and Mr. S., already 89 years old, had been a heavy smoker since his teens. “Most triple-A’s are fusiform,” she started to go on, but saw my raised eyebrows. “All that means is that they are shaped like a spindle, with a bulging middle part. Anyway, a triple-A this size has to be resected. But, the patient is not just elderly; he’s really old, so surgery is quite a risk for him. Without it, he’s going to die, and it will be very painful. So, surgery is the usual procedure of choice, even for a guy his age” – a sort of ‘cut and hope’ situation, I guessed. “Other than the aneurysm, and the smoking,” she continued, “he’s in fair health for his age; even so, open repair of the aneurysm is problematic.” “None of which seems to call for someone like me, Ruth. What’s going on that prompted your call?” “Well, you’re right. Normally, open repair would just be done and that would be that. But, even though he’s in fair health for an old guy, he doesn’t seem to understand much of what we tell him. He’s just out of it. So, we’ve turned to his family – oh, lord, his family!” She stopped, looked up at me again, and, I swear it, sort of twitched her left eye. Never saw that before, but there it was, a twitch, followed quickly by a quick shake of her head, and then back to talking. I looked over at Janie, standing a short distance away, and she just stared back. “There’s the problem, why we called you,” her voice grew increasingly tense. “So, alright, explain, okay?” “Sure.” She looked over at Janie, then back up at me. Coughed, then continued: “His wife, who’s only a bit younger than him, is no help, either. Even though we have to look to her for decisions and help explaining things to him, well, we’ve had to forget that: she doesn’t seem to understand anything we say to her, just weeps, nods her head and wrings her hands. She’s a sweet, sweet lady, but is very non-communicative, and anyway, either can’t or refuses to make any decisions. We asked about not resuscitating him, you know, in the event; but she just broke down. We

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need a decision and for that we need someone to make it, as you of all people know, and we just can’t get anything out of him or her.” “So she knows he’ll die without surgery?” “We’re not sure, but we’ve told her many times.” “And that surgery is a real risk even while it’s the only treatment, if that’s the right term, that can be done for triple-A? Even at his age?” “Well, yes, but we still need to have someone make a decision. And, the fact is, neither he nor his wife seem capable of doing that. At least, neither has said ‘yes’ or ‘no’ when we ask.” “Well, does he have any family other than his wife?” “Like I said before and on the phone, that’s the real problem!” “Meaning?” “Meaning, they have eight children, all adults, five women and three men – and, of course, the usual spouses.” “So?” “Well, I’m getting to that, I’m getting to that.” “Sorry.” “No problem. So, that’s the issue: we’ve met with those folks four, five times and let me tell you I’ve never seen such arguing and carrying on; they just spit and curse each other like you wouldn’t believe! And, they can’t agree on a course of action, a decision, in fact they can’t get together on anything. Truth is, they’re always fighting, arguing, calling each other names like you hear only in bars, I suppose, just spewing and fuming over everything. We’ve met with them all a few times, like I said, and with this or that group of them at other times; we even had them together here in his room, but only once, since they caused such a ruckus that we had to get them out. We tried talking in our quiet room, but, well, it was very far from quiet then. Besides, it is just too small for that crowd. Then, Janie, she’s the other nurse over there,” I looked over; she looked back, “said that maybe we should ask you to intervene…” “Intervene; like, how? Sounds to me like you might need to consult the hospital attorney; there are legal questions here, you know.” “Well, we know that, but,” she finessed the question, not an uncommon response, and went on: “we thought you might try to get them all together, and sort of try to, like, maybe, help them get to a decision? We’re really stuck right now, can’t operate and can’t not operate; something has to break the impasse.” I had done this sort of conference several times in other units, and often found them helpful, not always reaching decisions the clinical folks liked or wanted, but persuasive nonetheless. And, the families I met there seemed to appreciate having gone through it. So I agreed, and set out to try

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and get it done. I had to find out how to contact each of them and then find someplace where we could all meet. But before that, I had to get in touch with Dr. Dolman and make sure this was agreeable to him; I saw him, asked, and it was. In fact, when I met with him that afternoon, as I said, he was clearly on edge, and very relieved when I told him I had agreed to get involved and what I wanted to do. “Please,” he answered when I asked about a family conference. “I told Janie that her idea to call you was a good one; just hoped you’d agree. But let me warn you,” he went on, “I’ve never seen any family like this one. I just hope they’ll meet with you.” “Sounds ominous,” I replied. “What’s the problem? I mean, Ruth told me how raucous they are and that agreement, on anything, seems remote. But you seem to have something else in mind.” “Not really,” he said. “I’ve met with them, or some of them at different times, and it’s just impossible for any of them to listen. I might as well not even be there, for all it matters to them. Except that, well, they seem to agree that I’m a rotten snob, about the only thing they do agree on. And,” he continued, looking anxious, “this is really serious. If that aneurysm ruptures, it’s all over for him; but surgery on a man his age, well, that’s really risky, too. But I can’t justify doing nothing, you know?” “I understand, I think,” I replied, thinking about rocks and hard places. The only question was whether surgery carried as much of, and as serious, a risk as not doing the repair. “I agree,” he said, “it’s a hard question. When they came in several days ago, I tried to get that point across to them, but the ones who brought him in would have none of that, they wanted surgical repair and wouldn’t hear anything else.” “So, why didn’t you just proceed?” I wondered. “Before I could set it up, several others of them came an hour or so later and yelled at me to not do surgery, and they were really adamant, let me tell you. And loud, my lord, were they loud. That’s when Janie and I got together and thought about asking you to get with them. It’s clear I can’t get them to do anything, and Momma, well, she’s just as much out of it as he is.” There it was, then: a family, all adults, nine of them counting “Momma”, so much at odds with each other that no decision could, or would, be made. So, bring in the ethics guy: taa-daa! It seemed, if anything, a very loaded request. So be it; it would not be the first time, nor the last.

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Like I said, it all sounded really ominous. But at the time I was still in the warm embrace of success from several consults I had just completed which had turned out very well for everyone. As if, that is, I knew what I was doing and such. I thanked him, said I would be back in touch, and went off to see what I could set up. It was imperative to get it done asap, so with Janie and Ruth’s help, all nine were contacted, including Momma, and we set up the time – the next morning, at nine – and a place was found: one of the rooms close to the cafeteria, down a couple of floors. Each of them was told how to get to the place, and that I would be there to talk with them. I asked the nurses not to give my title, for that would, more than likely, make them think that something was really wrong (“an ‘ethicist’? Somebody’s being unethical!”) and might put them even more at odds than they were already. Next morning, as I walked up the hall next to the cafeteria kitchen, I could hear what can only be described as a veritable pandemonium, growing louder as I came closer to the door, which was, of course, wide open. Clearly, these folks did not like each other and did not care who heard them. I stood in the doorway for a moment before going in and closing the door; I was as yet unnoticed, and I just listened. “Well, you’re still a bitch,” one said to another. “No worse than you, you whore,” was a reply. “Hell, you hag, all you want is Momma’s and Daddy’s things and money,” someone said. “And what the hell you think you want, huh? You’re disgusting as you always were.” “Yeah? What about that time you were caught with your hand in the till, huh, what about that?” “I mean, just shut up and leave Momma be, dammit, just leave her be.” “Daddy’s got to have that operation, else he’ll die.” “And he’ll die if he has it. You’re just greedy to get your dirty hands on his money.” “What money, you fraud?” And on and on; I will not try to repeat all I heard in just the first few moments as I stood there. Oh my, was I ever in for it, I knew from the outset. How in the world can I get them to listen to one another, much less to me? No wonder Josh and the nurses wanted someone else to take over. But, valiant to the bitter end, I cleared my throat to get their attention. Nothing. I did it again, more loudly, and finally one of them noticed, yelled for the others to shut up, but in more colorful, nastier words. Which, eventually, they did. Momma just sat there through it all, tears in her eyes, and looked up and over at me. During the lull, she softly asked, “are you him, the guy who’s ‘posed to meet with us?” “Yes, Ma’am, I am,” I said, trying to make things a bit lighter. She smiled a little, but the others sat, obviously furious, looking for all the

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world as if I were the next victim. I already knew better than to introduce myself in my usual way, and did not mention “ethics” at all, just that I had been asked to meet with them. “I’d like to find out,” I said, “if there’s any way some decision can be reached for Mr. Settles.” But before I could continue, one lady, sitting beside another, presumably a sister, on one side of the table, quickly stated that surgery was simply out of the question: “Daddy’s too old, too frail, and he’ll surely go through a lot of pain then die anyway if it’s done,” she said. Her sister next to her nodded vigorously. A brother sitting opposite along with the other six adult children (no spouses today, I noticed) snorted out a reply to the effect that all she wanted was Daddy’s land and money: “y’all just want him to die, and that’s the truth,” he swore. “And who got them to sell out here and move down there close to y’all,” the sister sniffed right back at him. “Talk about greedy-guts, y’all ‘re nothing but greedy-guts, got ‘em to sell and move, and then spend all your time up there at the new place gettin’ in real good with ‘em, and that’s the truth,” she scoffed back at him, glaring across the table. At which point, I said, almost yelling to be heard above the insults and foul language being tossed around. “Enough! Please, let me get a word in here, okay? Enough!” Which somehow did the trick. The room grew silent; you could hear the odd bird chirping outside the window. I looked over at Momma, who sat still, her head down, obviously weeping. I looked around the table, trying my best to make it a fierce, defiant glare. Then, I asked whether they had in any way talked things over with Momma, “Mrs. Settles,” as I called her. Which only prompted another outburst of accusations, slurs, and insults. It was perfectly obvious that I was not likely to get anywhere with this group. But, I had to give it a try. “If you’ll keep quiet for a moment, I need to make sure you all, every one of you, clearly understands what your father is going through right now, and the only available treatment that can be offered.” “So, okay, Mr. Man,” one of the men in the largest segment of the family snickered at me. “Go on ‘n do your thing, though we know full well what’s wrong with Daddy and what that surgeon feller said he could do.” “You know about the aneurysm?” “Sure enough,” another, a woman, from the same side replied. “And we here,” she spread her hands to indicate that side of the table, “all agree that the place in his stomach should be fixed. It’s them over yonder,” indicating the side with only two sitting there, “who think it shouldn’t get done.”

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“You bitch,” came from that side; “Just what you are,” replied the other side. And it started up again, until I almost shouted for quiet. This is getting us nowhere, I thought. But I let the quiet come down around us. “This is making things really impossible for the doctor, the nurses, the hospital. We just have to find a way to get at things differently; just have to.” I stopped, looked around the table, found none of them who appeared the least bit friendly. Then said, “well, I might as well point out that if you keep this up, Mr. Settles will die in any case, and it won’t be pretty, it’ll be very painful. ‘Course, if he goes through surgery, chances are that it won’t be any prettier for him. And that’s the important thing you all need to focus on: what’s the best for him? I know that’s not an easy thing to think about, but what is best for him?” “Hell, man,” a man replied, “ain’t nothing good for him, no way. Damned if you do, damned if you don’t, seems like. What’re we s’posed to do? Huh? What?” “All I can say is that, whatever you do or even think about, you’ve just got to focus on him, on what’s best for him, best as you can figure out. And I know that’s not easy; fact is, it’s very difficult, very hard, but that’s what you’ve got to talk about. Right now, not tomorrow, not later today, right now. The folks up there,” I pointed up, indicating the surgical floor where their father was, “need to know, because they cannot do anything the way you are right now.” It grew very quiet again, hushed as falling snow. Then Momma spoke, gently, “I know he hurts, real bad, and I know ain’t nothin’ gonna help, not no more. So, I just wanna know what they can do to ease his hurt, ‘cause no operation can do that far’s I know, only make it worse, just draw it out, like. So,” she sat back in her chair, “so, is there? That’s what I wanna know.” The room remained quiet, the sisters and brothers calm now, not talking, not looking at each other, just staring, unfocused, at something far, far away. “I’ll see if anything can be done,” I said finally. “See if there are ways to ease his pain. Will you all stay here while I go up and talk with the doctor? It’s a hard thing you’re asking of him, too, but maybe there’s a way to do that and let Mr. Settles go peacefully, or as peacefully as possible. Would that be okay, what you want?” Nobody responded; all I heard was the rustling of clothes, and I saw heads nodding. Momma then said, “Just so, young man, just so, and we’ll be here when y’all get back down. And be sure to tell that young doctor up there and them nurses, too, that we meant no harm to him or them neither, tell ‘em we just have our ways; just have our ways.”

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“I’ll be sure to do that,” I said as I got up, looked around, walked to the door, turned and said, “and, folks, thanks for that, and thank you, Mrs. Settles, thank you.” I went back up, but when I arrived at Mr. Settles’ room, I saw Josh standing just outside it looking bewildered. “He just went, like that,” he snapped his fingers, his head nodding, “and didn’t seem to suffer at all, to be in any pain. Never thought I’d see that sort of thing, you know?” He looked over at me. “What do you mean?” “He just went, died, and never uttered a peep, even though the aneurysm ruptured and, my god! Must have caused awful pain. He just, well, just,” he looked at Ruth, who nodded. Josh went on, “well, I mean, he just died, and he had a smile on his lips, a smile, can you beat that?” After a bit, I told them, Josh and Janie and Ruth, about the family meeting, about Momma, her worry, her need, about, as she said, his “hurtin’”, and Josh just stood there, transfixed. “I don’t know,” he said, “I just don’t know if I could have done anything, if he’d shown any signs of severe pain. And he ought to have felt that, but apparently didn’t. Just lay there, smiling, and died. Tell them, okay?” I agreed, and did just that. When I returned, Momma was still there at the table, her lips, slightly upturned as she listened to me, gradually spread wider into a big grin; and her children sat there too, as, slowly, each of them began to smile. And I caught myself remembering Brian Doyle’s remark: “you think, my god, stories do have roaring power, stories are the most crucial and necessary food, how come we never hardly say that out loud?” (Doyle 2008).1 I can still hear Momma’s words, still see her smile. The stories patients, and others involved with them, tell arise from the themes intrinsic to their clinical circumstances – more accurately, from those encounters in which everyone knows that much can be won (by ‘successful’ treatment) and much can be lost (when everything has been done and neither rescue nor restoration is now possible). When faced with such situations, we can be struck dumb, without words or wits to withstand the onslaught of the unspeakable. Facing not-being, we may also face a serious collapse of language and blunt bewilderment at our own finitude (Frank 2001). 1

Brian Doyle is the editor of Portland Magazine at the University of Portland, Oregon.

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James Agee said it best, in his remarkable Let Us Now Praise Famous Men, in which he faces the compelling challenge to any who would dare write about people in times of their utmost distress, how “obscene and thoroughly terrifying” (2001: 5) it is. He writes: to pry intimately into the lives of an undefended and appallingly damaged group of human beings […] for the purpose of parading the nakedness, disadvantage and humiliation of these lives before another group of human beings, in the name of science, of “honest journalism” (whatever that paradox may mean), of humanity, of social fearlessness, for money, and for a reputation for crusading and for unbias which, when skillfully enough qualified, is exchangeable at any bank for money. (idem)

Whether writing as philosopher, seasoned with as much rationality and elaborate jargon as you wish, or as clinical ethicist, talking with and listening to a critically ill patient – and, later, trying to make sense, phenomenologically and clinically – the harsh question refuses to go away: is it ever possible to perceive anything simply “as it stands”, in Agee’s idiom, while being dans le milieu des choses? Can any of us “stand” in the face of that “cruel radiance of what is” and tell it like it is? What amazing trust must be placed in listeners and readers, to understand this ungetaroundable quandary! (Zaner 1991: 45-67). How to put the unconditional and the unspeakable into words, tell the unqualified uniqueness of individual people and their actions, emotions, relationships, circumstances? Our lives and experiences are thoroughly storied, even while most of the time and for various reasons they are only partially told Komesaroff, 1995: 66). The questions at the heart of this are humbling; I offer here only a few deliberations – along with, I should add, an invitation to grapple, for instance, with Rita Charon’s splendid work2 to appreciate this challenge. Trying to focus on moral life, if I may so put it, we must rather be both hunters and gatherers, both seekers and collectors of the stories which make up every clinical encounter. And even beyond hunting for, gathering, listening to, and learning to understand such stories, we must also be witnesses and guarantors, ensuring that every clinical narrative has its

2

As presented in Charon, Narrative Medicine: Honoring the Stories of Illness (2006). A special issue of the Journal of Applied Communication Research will be devoted to this book, based on the symposium at the National Communication Association on her book, and in which I was honored to participate.

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chance to be told and receives its appropriate hearing; even, indeed, when putting these narratives into writing. In a word, narrative writing has been a way for me to discover and understand a sense of what was going on in the situations I am trying to tell. In those moments when I am trying to get clear, trying to find adequate and accurate ways of expressing what went on in a particular encounter; in those always laborious moments of writing, my efforts seem most of all a kind of unearthing of sense, moments when I try out first this or that expression, phrase, or word, and listen to whether it says rightly what went on – whether I have ‘got it right’. This wandering through and then mining of the field of expression is a significant part of explicating the sense of the event I am trying to tell. In this, I am more inquirer than recorder, more interrogator than settler of disputes, more in the posture of one still learning than of one having already learned. With the beacon of Agee’s example as my guide – for all his lamenting, he did after all go on to write, at incredible length and masterfully, even if he was prying “intimately into the lives of an undefended and appallingly damaged group of human beings” – I too find myself having to enact my own sort of prying, hoping that, a little like Agee, I may, in his words, gradually discern, “centrally and simply, without either dissection into science, or digestion into art, but with the whole of consciousness, seeking to perceive it as it stands,” so that I may perchance “perceive simply the cruel radiance of what is” – the telling of which, I believe, can only be a story, accompanied, however painfully, with the obbligato of continually having to face my own involved circumstance and thus always in wonder.

Works Cited Agee, James 2001 [1941]. Let Us Now Praise Famous Men: Three Tenant Farmers. New York: First Marnier Books. Charon, Rita 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Doyle, Brian 2008. “The Greatest Nature Story Ever”, Orion Magazine. Available [online] at: http://www.orionmagazine.org/index.php/articles/article/3649. Frank, Arthur W. 2001. “Experiencing Illness Through Storytelling”, Handbook of Phenomenology and Medicine. Ed. Kay Toombs. Dordrecht & Boston: Kluwer Academic Publishers. Komesaroff, Paul 1995. “From Bioethics to Microethics: Ethical Debate and Clinical Medicine”, Troubled Bodies: Critical Perspectives on

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Postmodernism, Medical Ethics, and the Body. Ed Paul A. Komesaroff. Durham and London: Duke University Press. Rosenblatt, Roger 1997. “Dreaming the News”, Time. 149 [15]: April 14. Wharton, Thomas 1996. Icefields, New York: Washington Square Books, 133. Zaner, Richard 1991. “The Phenomenon of Trust in the Patient-Physician Relationship”, Ethics, Trust, and the Professions: Philosophical and Cultural Aspects. Ed. Edmund Pellegrino. Washington, D.C.: Georgetown University Press.

PART III ILLNESS AND TRAUMA IN LITERATURE

REPRESENTATIONS OF ILLNESS IN CONTEMPORARY SHORT FICTION: SOME PORTUGUESE AND BRITISH EXAMPLES ANA RAQUEL FERNANDES

In her opening note to the essay Illness as Metaphor, Susan Sontag presents the reader with a metaphor concerning our condition as mortals. Sontag explains: [e]veryone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each one of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. (Sontag 2002: 3)1

In her study, Sontag explores some of the great metaphors developed in the 19th and 20th centuries concerning two diseases in particular: tuberculosis and cancer. She recurs to literary examples in order to illustrate different perceptions of these diseases. Indeed, both TB and cancer have been, and the latter still is, prone to metaphor, since they share common traits: an invasive nature, an “intractable and capricious” (5) disposition. Examples of literature dealing with disease and pain abound in contemporary fiction. Illness and death, in literature, are frequently two inseparable themes. Through the analysis of three examples of contemporary short fiction my aim is to discuss the different representations of disease in short narratives by both Portuguese and British women writers. The texts selected are two short stories: “O companheiro sinistro” (“The Sinister Companion”) by Maria Isabel Barreno, “Cavalos nocturnos” (“Night Mares”) by Teolinda Gersão; and a 1

The Portuguese translation by José Lima (Sontag 2009: 11) reads: “Ao nascer todos nós adquirimos uma dupla cidadania: a do reino da saúde e a do reino da doença. E muito embora todos preferíssemos usar o bom passaporte, mais tarde ou mais cedo cada um de nós se vê obrigado, ainda que momentaneamente, a identificar-se como cidadão da outra zona.”

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short novel: Where Three Roads Meet by Salley Vickers.2 In these narratives, all the main characters are portrayed according to the way they deal with different kinds of disease. The construction of various fictional realms illustrates the myriad of possibilities associated with the theme of disease as an object of artistic representation. I would like to start by discussing Barreno’s short story and argue that the narrative “The Sinister Companion” is ultimately a deconstruction of both social and moral metaphors associated with cancer. The narrative deals with life and death, and the way language determines our existence, reminding readers that meaning can only be achieved through language but that ultimately, language is a social construct. The short story illustrates one of the principles associated with the nature of the linguistic sign: its arbitrariness as far as the relationship between the signifier and the signified is concerned (Saussure 121-128). Briefly, “The Sinister Companion” deals with the different ways the main character perceives the world, from childhood to adulthood. The narrative starts and ends with a direct reference to death; in between, family, God, school, politics and work shape the protagonist’s life. From an early age the environment surrounding the main character is depicted as highly negative: pain, suffering, disease and other kinds of misfortunes, apparently propelled by a ruthless God, seem to determine the human condition. Undoubtedly, religion plays an important role in this (mis)conception of the world: “[a]t Sunday school I would be told that all human beings are horrible sinners, making God suffer at every moment; ultimately, human beings will be thrown, in unimaginable quantities, into the depths of hell” (emphasis added).3 The protagonist finds a haven at school. Learning how to read and write allows her to appreciate the process of assembling sounds and shapes in order to constitute words and attribute meanings to both objects and abstract ideas: “The association between spoken sounds and written shapes led her to discover new, odd and unexpected meanings.”4 Gradually, the word sinister and its versatile meanings capture the protagonist’s attention. Its etymology proves that the original meanings of the word are associated 2

Unless otherwise signalled, all translations from Portuguese are mine. The Portuguese original (Barreno 69) reads: “Na catequese ouvia dizer que os seres humanos são todos uns horrendos pecadores, fazendo Deus sofrer a casa instante, indo por isso parar, os seres humanos, em maiorias inimagináveis, às profundezas do inferno.” 4 The Portuguese original (70) reads: “As associações dos sons e das formas levavam-na a significados novos, estranhos, inesperados.” 3

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with the left, the left hand, the left side of the body, eventually becoming a synonym for going astray from the right path, for corruption and evil. However, as the main character realizes, left and right are constructs that crisscross in domains as different as politics or medicine (and, for that matter, linguistics too): both Left and Right-wing politics may evince sinister purposes; and as far as the human body is concerned, the left cerebral hemisphere controls the right part of the body while the right hemisphere controls the left side. Moreover, both main areas involved in language skills (Broca’s and Wernicke’s areas) are situated in the left hemisphere. It is only in the last paragraph of the text, towards the very end of the narrative, that disease and death are introduced again, leading the story to its climatic moment. The protagonist is diagnosed with cancer, “an illness experienced as a ruthless, secret invasion”. As Sontag further explains in her essay, Illness as Metaphor: “Metaphorically, cancer is not so much a disease of time as a disease or pathology of space. Its principal metaphors refer to topography (cancer ‘spreads’ or ‘proliferates’ or is ‘diffused’)” (15). Analogously, in the short story “The Sinister Companion”, the concept of sinister, already present in the title, spreads and proliferates in stages until, at the end, it acquires its whole meaning. The narrative follows a circular movement; it started with a direct reference to death (“When I was little I wanted to die”)5 and eventually it finishes with death: “Sinister companion, at last, you have come to take me.”6 The unlikely association between the positive word “companion” [companheiro] and the less positive term “sinister” [sinistro], however, evinces the absence of absolutes in the short story. On a small scale, Barreno’s narrative illustrates Sontag’s intention of removing the second punishment, of blame, that the metaphors of illness sustain. And indeed the disease introduced towards the end of “The Sinister Companion” is disembodied from any punitive notion. The short story is therefore an example of the way in which our perception of the world and the meaning we attribute to the surrounding reality is structured through language. Literature, then, whose raw material is the word, has not only an aesthetic dimension, but it also leads the reader to question the object of aesthetic experience, to think about the creative process and the meanings conveyed in words. Teolinda Gersão’s “Night Mares”, from A mulher que prendeu a chuva e outras histórias, opposes everyday reason with the logic of dream and 5

The Portuguese original (69) reads: “Em pequena queria morrer”. The Portuguese original (72) reads: “Companheiro sinistro, disse, enfim vieste buscar-me”.

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fairy tale, recurring to folk motives. The short story is narrated in the first person by a female character who suffers from a sleep disorder. The author plays with the etymology of the English word “nightmare”. The suffix derives from the Anglo-Saxon “mara” (spirits who visit in the night, causing bad dreams), synonymous with “incubus” (wicked imps who assault women sexually in their sleep), and not from “mare”, a female horse; the two terms are easily confused. Henry Fuseli’s “The Nightmare” (1782) testifies to this. Although Fuseli’s painting is not mentioned in the short story, it seems to haunt Gersão’s text. In “The Nightmare”, the artist depicts a small wicked spirit responsible for bad dreams. The presence of a horse’s head at the back of the painting perpetuates the etymological entanglement of the word “nightmare”. Nevertheless, the night mares [cavalos nocturnos] that frighten the protagonist are also her antidote, horse being a slang name for heroin. Although the main character longs for death, wishing that her mares would become deadly ones, the only certainty at the end of the story is that her wish is not fulfilled. The main character will have to keep fighting again her frightful mares. The short story assumes the form of a dream or, to be more accurate, of a nightmare told by the main character. Indeed, “Night Mares” starts with the description of a bad dream that wakes the protagonist up, a nightmare: I was running straight ahead, in the middle of the night, on the back of a mad horse dragging me nowhere. There were no familiar reference points in the landscape. We would run at full speed, faster and faster, and yet we didn’t seem to be moving forward. Had space and time, the concept of time, disappeared? I wondered. I didn’t know where I was and I could hardly remember my name. But I hadn’t forgotten your name nor the fact that you were dead. I woke up suddenly and switched on the light. It was a quarter past two in the morning.7

Time and space are sectioned, and the sequential narrative filtered by the protagonist’s memories is replaced by a fragmented account, in which reality and fiction become one unity and the text itself becomes a 7

The Portuguese original (Gersão 7) reads: “Corria para a frente, na noite, no dorso de um cavalo enlouquecido, que me arrastava, para nenhum lugar. Não havia pontos de referência na paisagem, cavalgávamos à desfilada, depressa, cada vez mais depressa, e no entanto sem avançar no espaço. Desapareceu o espaço, e também o tempo, a noção de tempo? Interroguei-me. Não sabia onde estava e recordava-me só vagamente do meu nome. Mas não esquecera o teu. Nem o facto de que estavas morto. Acordei de repente e acendi a luz. Eram duas e um quarto da manhã.”

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nightmare. “Night Mares” thus testifies to the correlation between fearfulness in waking life and nightmares. The protagonist lives haunted by traumatic experiences: the death of a loved one, the horror of the 9/11 attacks, the fear of an imminent tragedy at home. Her narrative is an attempt to bring order and meaning to events. “Night Mares” is thus a literary text that could be interpreted within the domain of narrative medicine. As Rita Charon explains in the preface of her study Narrative Medicine: Honoring the Stories of Illness: [w]hen we try to understand why things happen, we put events in temporal order, making decisions about beginnings, middles, and ends or causes and effects by virtue of imposing plots on otherwise chaotic events. We hail our relations with other human beings over time by receiving and alluding to stories told by others– in myths, legends, histories, novels, and sacred texts. We seek connections among things through metaphor and other forms of figural languages. (vii)

I would like to end the present overview with a brief comment on the short novel Three Roads Meet (2007), by Salley Vickers. In this fictional narrative, biographical information crisscrosses with myth as the story about to unfold brings together the psychoanalyst Freud and Tiresias, the mythical and literary character from Sophocles’s play Oedipus the King (429 BC). The dialogue between the two is often held as if following the Socratic method. The series of meetings between these two characters is triggered by Freud’s health condition towards the end of his life: he is diagnosed with oral cancer. Tiresias’s first apparition takes place in Vienna in 1923, but it is only after Hitler’s invasion of Austria in 1938 and the consequent escape of the Freud family to England that he joins Freud at Maresfield Gardens until his death in 1939. Vickers’s novel therefore combines the timeless myth of Oedipus with Freud’s biography and also his theory of the Oedipus complex as presented in The Interpretation of Dreams (1900). From the very beginning, each new appointment between Tiresias and Freud is meant to cast light on the myth and the way it had such a profound impact on fields such as psychology, anthropology, art, and literature, particularly from the 20th century onwards. As Freud explains in The Interpretation of Dreams (1999), referring to Sophocle’s adaptation of the myth: [i]f Oedipus the King is able to move modern man no less deeply than the Greeks who were Sophocles’ contemporaries, the solution can only be that the effect of Greek tragedy does not depend on the contrast between fate and human will, but is to be sought in the distinctive nature of the subjectmatter exemplifying this contrast. (202)

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In the novel, Freud listens to Oedipus’s tale one last time, told by the blind seer Tiresias. Three Roads Meet thus presents the reader with Freud’s brief biography and his imaginary last days before succumbing to cancer. It gives us a new and subversive account of the Ancient Greek myth of Oedipus, simultaneously allowing for Tiresias to tell his own personal story: his androgynous character, his punishment by the goddess Athena and the gift of prophesy given to him by Zeus. Towards the end of the novel, Tiresias explains that “stories are all we humans have to make us immortal” (174). Indeed, it is through a story that Oedipus becomes immortal. In a metafictional gesture, the same happens to Freud and Tiresias at the end of the novel. Death reunites them once more and leads them to the place where three roads (to Delphi, to Daulis and to Thebes) meet, at the narrow defile where King Laios was killed, and where one of the biggest myths of Western society began.

Works Cited Barreno, Maria Isabel 1993. Os sensos incomuns: contos. Lisboa: Editorial Caminho. Charon, Rita 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press. Freud, Sigmund 1999. The Interpretation of Dreams. Trans. Joyce Crick. Oxford: Oxford University Press. Gersão, Teolinda 2007. “Cavalos nocturnos”, A mulher que prendeu a chuva e outras histórias. Lisboa: Sudoeste Editora. Saussure, Ferdinand de 1995. Curso de linguística geral. Trans. José Victor de Adragão. Lisboa: Publicações Dom Quixote. Sontag, Susan 2009. A doença como metáfora e a sida e as suas metáforas. Trans. José Lima. Lisboa: Quetzal. —. 2002 [1991]. Illness as Metaphor and AIDS and Its Metaphors. London: Penguin. Vickers, Salley 2007. Where Three Roads Meet. Edinburgh: Canongate.

WILLIAM SHAKESPEARE AND THE REPRESENTATION OF FEMALE MADNESS MARIA ISABEL BARBUDO

At the beginning of a paper entitled “William Shakespeare and the Representation of Female Madness”, one would naturally expect some quotation from this English playwright living at the turn of the 17th century, and not one from a Portuguese poet living at the turn of the 20th century. And yet, I will start with a quote from a letter written by Fernando Pessoa in 1935. The letter whose excerpt I translate below was written in Portuguese: The mental origin of my heteronyms is in my organic and constant tendency for depersonalization and simulation. These phenomena – fortunately for me and for the others – gained a mental form in me; I mean, they don’t manifest themselves in my practical and external life, namely in contact with other people; they explode inwards, and I live them by myself […]. If I were a woman – in women the hysterical phenomena give origin to things like violent outbursts […]. But I am a man – and in men hysteria takes on, above all, mental aspects; therefore, everything ends in silence and poetry.1

This same notion of the histrionic dimension of female hysteria pervaded the images of women and madness in literature, psychiatry, drama and art 1

In the original: “A origem mental dos meus heterónimos está na minha tendência para a despersonalização e para a simulação. Estes fenómenos–felizmente para mim e para os outros–mentalizaram-se em mim; quero dizer, não se manifestam na minha vida prática, exterior e de contacto com os outros; fazem explosão para dentro e vivo-os eu a sós comigo. Se eu fosse mulher–na mulher os fenómenos histéricos rompem em ataques e coisas parecidas–[…]. Mas sou homem–e nos homens a histeria assume principalmente aspectos mentais; assim tudo acaba em silêncio e poesia” (Pessoa, “Carta a Casais Monteiro”. Emphasis added).

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throughout the 19th and 20th centuries. According to Elaine Showalter, superintendents of Victorian lunatic asylums even turned to Shakespeare’s plays for models of mental aberration that could be applied to their clinical practice (Hartman 85). The case study of Ophelia in Hamlet seemed particularly useful as an account of hysteria or mental breakdown in adolescence, a period of sexual instability which the Victorians regarded as risky for women’s mental health. The President of the MedicoPsychological Association is quoted as having remarked, in 1859: “Ophelia is the very type of a class of cases by no means uncommon. Every mental physician of moderate experience must have seen many Ophelias. It is a copy from nature […]” (Hartman 85). In Madness and Civilization, Michel Foucault would later mention the case of a 17-year-old girl taken to an asylum in the 18th century, where she was treated with all the severity deemed appropriate to her “haughtiness”. By means of the rigorous methods she was exposed to, she ended by making a frank confession that “she had suffered a loss of reason as the result of a forbidden romantic attachment, naming the person who had been its object” (Rabinow 161). This confirms the fact that the association of madness with femininity existed prior to the 19th century, but it was in the Victorian era that women were more likely to be incarcerated in asylums, and “mad women” came to dominate representations of madness, with a hint of sexuality that Sigmund Freud would explore and analyse in its relation to the unconscious. This is certainly why, in the film version of Hamlet directed by Kenneth Branagh in 1996, which seems to transpose the action of the play to the historical and cultural background of the 19th century, the mad Ophelia is seen in a straightjacket, and under violent jets of cold water. Since the 1960s, the Freudian representation of Ophelia has been supplemented by other perspectives, namely the one that sees her madness, in medical and biochemical terms, as schizophrenia. According to Elaine Showalter: The schizophrenic woman has become the cultural icon of dualistic femininity in the mid-twentieth century, as the erotomania was in the 17th and the hysteria in the 19th. It might also be traced to the work of R. D. Laing on female schizophrenia in the 1960s. Laing argued that schizophrenia was an intelligible response to the experience of invalidation within the family network, especially the conflicting emotional messages and mystifying double binds experienced by daughters. (Hartman 90)

Feminist discourses from the 1970s onwards have added still other perspectives, seeing Ophelia’s madness mainly as a protest and a rebellion,

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and Ophelia herself as a heroine, a powerful figure who refuses to speak the language of the patriarchal order. These brief references may help us come to the conclusion that there is no “true Ophelia”, since the interpretation of this Shakespearean character depends on attitudes towards women and madness that change from epoch to epoch. This is a point made by Elaine Showalter, in her essay entitled “Representing Ophelia: Women, Madness, and the Responsibilities of Feminist Criticism”, in which she proposes to trace the history of the representation of this female character. Bearing this in mind, I now wish to return to Fernando Pessoa’s depiction of male and female madness, since I would like to argue that in the play Hamlet, it is not female but male madness that is represented as being histrionic and as a synonym for violent action, physical or mental, whereas female madness, as seen in Ophelia, is conveyed through “silence and poetry”, to use the same words that Fernando Pessoa ascribed to male insanity. His gendered conception of madness seems somehow to be denied not only in Hamlet, but also in Macbeth. In these Shakespearean tragedies, madness is a central topic, and it happens to affect not only their male protagonists, but also the women they love. And, in both plays, it is female insanity that tends to be represented in terms of silence and poetry. Freud’s approach to the play Hamlet as an obvious representation of the Oedipus complex combines with the dialectical interrelation of the protagonist’s genuine and affected madness. According to Freud: “If anyone is inclined to call him a hysteric, I can only accept the fact as one that is implied by my interpretation. The distaste of sexuality expressed by Hamlet in his conversation with Ophelia fits in very well with this” (Freud 210). In Freud’s interpretation, then, hysteria, related to repressed sexuality, seems to affect both characters, Hamlet and Ophelia. To this approach we may add the analysis of Hamlet’s tragic flaw, generally attributed to his melancholic incapacity for physical action. But this must not obliterate the fact that it is Hamlet’s mental action, as expressed in numerous dialogues and soliloquies, which draws our attention almost all the time. And this histrionic dimension is somehow reflected in his initiative of having a play performed by actors, as a “mouse trap” that will help uncover the truth. This lively verbalization of his perplexing emotions, in long and frequent speeches with a rational and even philosophical turn, makes a stark contrast with the popular songs and the few symbolic words spoken by Ophelia in her state of insanity – in prose and not in verse – which in Shakespeare is, in itself, a signal of irrationality.

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In her most famous speech, it is by naming flowers and their symbolic meanings that she is able to address the other characters, as if the silence beginning to hang over her mind can only allow for a discourse that, even though in prose, has a deeply poetic substance – a sort of discourse seen by her own brother as “a document in madness” (IV, v 176). According to Michel Foucault, the absence of language would become a fundamental structure of asylum life from the 17th century onwards, in obvious contrast with the incessant dialogue of reason and madness that took place during the Renaissance (Rabinow 152). Following this perspective, we may conclude that Hamlet incarnates this same dialogue between reason and madness, still possible in the 16th century, whereas Ophelia is a pre-figuration of the future silencing that classical internment would impose on insanity. Being still a character in a Renaissance play, Ophelia is not sent to an asylum, but she is repeatedly advised by Hamlet to go to a convent: “Get thee to a nunnery”, he says. Confinement and silence seem, in fact, to be the only solution for this female character, who eventually finds her own way to the supreme silence of death by committing suicide. In the most famous portrait of her suicide – the painting by the PreRaphaelite John Millais – she is seen floating, surrounded by water and flowers, and with her eyes, her mouth, and her arms open. The sexual connotations of her attitude in the painting have often been stressed. However, in this visual representation, we may also see her as someone still trying to express herself, which is something she had never been allowed to do. Indeed, throughout the whole play she is only a recipient and a victim of an external authority, embodied in the voices of her father, her brother, and her beloved Prince Hamlet. This is not so with Lady Macbeth, the other Shakespearean female character who goes mad before the end of the play, and who is also reported as having committed suicide. In this case, the voice that suppresses her instincts towards compassion and fragility comes from her own ambition and lust for power. The conflict between feminine and masculine as they are traditionally conceived occurs within her own mind, since she is aware that “the milk of human kindness” must be replaced by the cruelty of “gall”, not only in herself, but also in Macbeth. Her strategies for the manipulation of her husband’s temperament and character eventually succeed, and she has an active role in helping him commit the regicide that will make her Queen of Scotland. In order to gain courage for such a crime, she first invokes the evil spirits, commanding them to “unsex” her, thereby making the conscious choice of suppressing her feminine fragility, and following the voice of her own will for power.

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What seems surprising is that, after the first two Acts, all the action following the murder of King Duncan has Macbeth as its only active agent. We become aware that the successive murders cause his incapacity to sleep and the consequent hallucinations which are the visible signs of his increasing insanity. Violent physical action seems to be his way of dealing with fear and remorse, as seen in his soliloquies. And, in the meantime, what happens to Lady Macbeth? Having become a silent spectator to her husband’s crimes, thus showing that the fulfilment of her wish to be “unsexed” was only temporary, she reappears in the last Act in a state of mental illness which, in her case, is recognized as such. This fact is signalled by her being accompanied by a Doctor of Physic and a Waiting–Gentlewoman, who comments on Lady Macbeth’s somnambulism. Her sleepwalking scenes, repeated night after night, are described by the Gentlewoman as follows: GENT. Since his Majesty went into the field, I have seen her rise from bed, throw her night-gown upon her, unlock her closet, take forth paper, fold it, write upon’t, read it, afterwards seal it, and again return to bed; yet all this while in a most fast sleep. (V, i, 4-8)

What might be the secret thoughts and emotions Lady Macbeth was expressing in written form only to herself, unable to share them with others? Might she be writing poetry? This we will never know, but what we may certainly conclude is that the silencing and internalization of her emotions makes her now more similar to Ophelia, walking the same road to self-destruction. And when she opens her mouth, even though she does not mention flowers as Ophelia does, she insists on an imaginary spot, a spot of blood which clearly symbolizes her guilty conscience. Again like Ophelia, she now speaks in prose, in disarticulated discourse which is a reflection of her disordered mind. The final comment made by the Doctor of Physic – “More needs she the divine than the physician” (V, i 71) – seems to suggest that he recognizes that medical science was unable to cure such maladies, whose origin lay not in the body, but in the soul. Suicide seems, again, to be the only way out of the “sea of troubles” that affects the soul of this female character. Whereas Macbeth, just like Hamlet, somehow exorcizes his state of insanity by speaking, and arguing, and fighting his enemies until he himself is killed, Lady Macbeth, just like Ophelia, chooses to be the agent and the object of her last action, apparently without a word, since we only later get to know that “by self and violent hands (she) took off her life” (V, i 36-37).

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Significantly, it is Hamlet and not any of the female characters who utters the sentence that could well be applied to Ophelia and Lady Macbeth in the final Acts of both plays – a sentence in which silence is a synonym for death. These are his last words, spoken when he himself is dying: “The rest is silence” (V, ii 363).

Works Cited Dunn, Leslie C. and Nancy A. Jones, Eds. 1996. Embodied Voices: Representing Female Vocality in Western Culture. Cambridge: Cambridge University Press. Freud, Sigmund 2004. The Interpretation of Dreams. Montana: Kessinger Publishing. Neely, Carol Thomas 2004. Distracted Subjects: Madness and Gender in Shakespeare and Early Modern Culture. London: Cornell University Press. Pessoa, Fernando, and João Gaspar Simões 1957. Cartas de Fernando Pessoa. Lisboa: Publicações Europa-América. Rabinow, Paul, Ed. 1984. The Foucault Reader. London: Penguin Books. Salkeld, Duncan 1993. Madness and Drama in the Age of Shakespeare. Manchester: Manchester University Press. Shakespeare, William 1994. Hamlet. Oxford: Oxford University Press. —. 1993. Macbeth. Oxford: Oxford University Press. Showalter, Elaine 1988. The Female Malady: Women, Madness and English Culture 1830-1980. Bloomington: Indiana University Press. —. 1985. “Representing Ophelia: Women, Madness, and the Responsabilities of Feminist Criticism”, Shakespeare and the Question of Theory. Eds. Patricia Parker and Geoffrey Hartman. New York: Methuen, 77-95.

POETICS OF TRAUMA: MODES OF NARRATION IN CONTEMPORARY FICTION FERNANDA MOTA ALVES

It was Sigmund Freud who first developed the concept of trauma, between the end of the 19th and the beginning of the 20th century. In a volume published in cooperation with Breuer, trauma appears in association with female hysteria (Studies on Hysteria, 1895). Later on (between 1894 and 1896) Freud will state that trauma is a response to sexual abuse and he explains that it may happen both in male and female patients. Freud later took up this theme again in relation to the disturbances of the soldiers who took part in World War I (“Thoughts for the Times of War and Death”, 1915; “Why War?” essays). His major contributions to trauma theory are Beyond the Pleasure Principle (1920) and Moses and Monotheism (1939). His description of the nature of trauma is still valid, especially the idea that trauma is the result of a “breach in the protective shield of consciousness”, the “belatedness” that manifests itself in the mechanism of compulsory repetition and the notion that trauma may have a collective dimension. As Ann Kaplan states, we read Freud, especially in Beyond the Pleasure Principle, struggling to develop models of the brain that neuroscientists have only recently been able to produce through new lab technologies and lab experiments unavailable in Freud’s day. (Kaplan 2005: 32)

In the 1980s, the consequences of the Vietnam War led to increased attention to trauma and to the creation of a new concept: Post-Traumatic Stress Disorder (PTSD). While the discussion on this topic became widespread, a new dimension was introduced to trauma studies by the work coordinated by Dori Laub and Geoffrey Hartmann, who collected the testimonies of the victims of the Holocaust, thus creating the Fortunoff Video Archive Project. This process was at the origins of the expansion of the concept of trauma, which was formerly only used in the fields of

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psychology and medicine, into the humanities. Trauma theory provided the necessary instruments to address, from the cultural and ethical point of view, problems that had both historical and personal dimensions.1 Literary studies during the last two decades have taken great interest in memory and history, while historical studies have acknowledged the important role of narration in the representation of the past. This convergent movement has led to the close interaction between memory studies (including trauma studies) and literary and historical studies. The recent upsurge of trauma fiction is part of this evolution in the humanities. The work of many authors provided valuable contributions to memory and trauma studies and, on the other hand, literary authors also integrate theoretical knowledge into their work. According to Anne Whitehead (Whitehead, 81-83), trauma fiction arises out of the background of postmodernism, postcolonialism and postwar consciousness. Postmodernist fiction responds to the need to recover and problematize history and memory. Postcolonialism represents a specific aspect of postmodernism, since it aims at producing alternative versions of the (colonial) past. The third aspect – postwar legacy and consciousness – refers to the trauma resulting from the events that took place in World Wars I and II, including the Holocaust and the Vietnam War, and should now include the attacks of 9/11 and even the following international conflict.2 In contemporary theory, trauma is said to be unspeakable. The psychoanalytic approach, on the contrary, argues that discourse may be effective as a form of therapy. If trauma discourse necessarily entails communication difficulties, fictions of trauma will also imply specific poetics, since they both aim at verbalizing a shock experience that subverts subjectivity and modes of relating to space and time. Quoting Geoffrey Hartmann, Anne Whitehead (Whitehead, 83) states that trauma fiction has its own formal properties at the levels of reference, 1

The works of authors like Cathy Caruth, Geoffrey Hartmann, Shoshana Fellmann and Dori Laub, and Dominik LaCapra constitute main references in the field of trauma theory. Cathy Caruth, following the ideas of Freud, stresses the fact that trauma manifests itself in the belated repetition of an experience that takes possession of the person who suffers it, like ghosts of the past haunting their victims. She explores the meaning of trauma as a contemporary historical phenomenon and its relationship to literary language. Geoffrey Hartmann stresses the important role of the listener, which corresponds to the reader of the literary text, and Shoshana Fellmann and Dori Laub reflect on the relationship between testimony and truth. Dominik LaCapra reminds his readers of the danger of identification, which may lead to secondary trauma (see Whitehead, 3-11). 2 Ann Whitehead, however, does not include these latter events in her book.

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subjectivity and story. These fictions tend to oscillate between the inclusion of the supernatural and the fantastic, which results from the accumulation of coincidences. This feature is regarded as a way of conveying traumatic knowledge which is necessarily subject to distortion. Trauma fiction makes use of traditional narrative techniques, pushing them to their limits. However, according to Anne Whitehead, it is possible to identify a number of narrative devices that frequently occur in this type of narrative: intertextuality (the re-reading of other well-known texts, offering new perspectives), repetition (which questions the therapeutic efficacy of narrating) and a fragmented narrative voice (implying the multiplicity of testimonial voices). One certainly cannot assume that these features appear invariably in every narrative. We will consider two fictional texts about trauma: one of the stories included in W. G. Sebald’s The Emigrants (1996) and the novel Extremely loud and incredibly close (2005) by Jonathan Safran Foer, trying to identify how these fictions represent or refer to traumatic experiences. Both texts refer to the historical background of war and conflict in the western world, namely the Second World War, the Holocaust and (in the case of Foer’s novel) the terrorist attacks on the Twin Towers in New York on the 11th of September 2001.

The Emigrants (1996), “Max Ferber” This book is composed of four stories in which the narrator tells the lives of Jewish emigrants whose deaths are voluntarily induced. He collects information about them, by speaking with them and/or their relatives, by reading documents or by travelling to places related to them. Max Ferber is a painter who lives separated from the world in an abandoned quarter of Manchester, a place where there used to be intense commercial activity which is now in complete decay. Max also assumes this decay as an integral part of his life: his artistic work is the result of a struggle with the materials he uses, trying to convey an image by drawing and erasing – the results are always extremely unsatisfactory to him, but in the end he abandons his work due to the effects of exhaustion. He refuses to clean all the layers of dust gathered around him and, as we eventually find out, in his own body, since this is for him a way of somehow escaping the loss entailed by time, and because that dust has partially come from the material he used in his work and thus condensates his efforts to represent what seems to be unrepresentable. The narrator meets Ferber and spends some time with him in 1966, when he is still a student, and visits him again 20 years later. During this

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second encounter, Ferber tells him about his past: he is the son of a Jewish family and lived his childhood under the shadow of Nazi power. His parents managed to send him to England but they postponed their own departure and ended up in a concentration camp. They stopped sending him letters, and Max Ferber eventually understood that they had disappeared. At a certain point, Ferber says that his German past haunts him obsessively (181); this is obviously a symptom of an emotional trauma, which also manifests itself in the tormented nature of his art and makes him forget the German language. This mental condition is also represented by the literary device of allegory: the German past haunts him in the shape of a lady dressed in grey silk, who visits him with regularity (181). Ferber describes his condition in the following terms: Naturally, I took steps, consciously or unconsciously, to keep at bay thoughts of my parents’ sufferings and of my own misfortune, and no doubt I succeeded sometimes in maintaining a certain equability by my self-imposed seclusion; but the fact is that that tragedy in my youth struck such deep roots within me that it later shot up again, put forth evil flowers, and spread the poisonous canopy over me which has kept me so much in the shade and dark in recent years. (191)

His unhappy existence is compared to the growth of a tree – which, in turn, reminds the reader of a photograph of a big tree in a graveyard which is included in the first story (3). A certain type of recurrence in the representation of space is also related to this condition. Max Ferber finds in Manchester the duplication of the reality he left behind: he sees the remnants of earlier German influence and of a Jewish population that no longer exists. This blurs his reference to the dimensions of time and space, since he feels he has returned to the place he came from. In other words, he cannot escape the traumatizing context of his origins, a situation he refers to in ambiguous words when he says he is in the industrial city of Manchester “to serve under the chimney” (192). A competent reader will recognize the allusion to the chimneys in the German concentration camps. The life of the narrator has remarkable similarities to that of Max Ferber: his mother tongue is German; he is also an emigrant to the UK. He comments on his writing in terms that remind the reader of the difficulties that Max Ferber had with his paintings; he experiences the same feeling of incompleteness and the dissatisfaction of an artist who is unable to achieve a final version of his work. In his dreams he remembers the ghetto of the Polish town Lódz (or Litzmannstadt) and associates it with Manchester. In

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general, the reader perceives that he carries as a burden the painful inheritance of the European past – he suffers from a trauma that is caused by historical knowledge. At the same time, he resents the cultural empoverishment and the forgetfulness of contemporary Germans (225). In his efforts to come to terms with this past, he repeatedly tries to recover the story of Ferber’s life and also of his family. He reads the memories of Ferber’s mother, which he includes in his text, and even travels to Kissingen, where he visits the abandoned Jewish cemetery, leaving a stone on the partially empty grave of the Aurachs family. In fact, it becomes clear to the reader that this narrator aims at recovering the past, by revisiting it and by trying to erase the boundaries that separate it from the present. The final image of three girls weaving in the ghetto is also the image of the three Fates (or Parcae) leading human destiny to inevitable death (236-237). This story (like all other stories in The Emigrants) is a melancholic visit to the lost world of the dead, refusing to let go of painful memories. Compulsory repetition and the overlapping of past and present appear in this story as trauma symptoms in both Ferber and the narrator. But the text’s organization also reveals an abstract consciousness that shows some analogous features. One of them is the systematic use of photos to try to approach contents and meanings that words will not convey (in fact, as Barthes pointed out, photography has the power of showing what has disappeared with time and belongs to the realm of the dead – a notion that fully applies to the contents of this book). Another strategy is the repetition of situations or allusions that are presented as coincidences – the most notorious one is the figure of the butterfly man, who appears at several points in the book and evokes a figure from Nabokov’s autobiography (Speak, memory). These repetitions seem to imply that there is a hidden power that commands human destinies in a world in which stability is no longer possible. These figures cannot feel at home in the places they inhabit and these therefore become unhomely, that is, uncanny.

Extremely loud and incredibly close (2005) The main character in this novel is Oskar Schell, an eight-year-old boy whose father died in the World Trade Center in September 2001. On that morning, when he was sent home from school, he received several recorded phone calls from his father; then he called again and Oskar was not able to pick up the phone. Oskar experienced his father’s death at the very moment it was about to happen and this filled him with horror. His inability to respond to his father’s call and the need to know the exact

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cause of his death have haunted him since then. He tries to cope with this by trying to find the lock for a key he found in a blue vase in his father’s closet. Over several months he visits people whose family name is Black, until he finds the owner of the lock. Oskar’s behavior reveals other, less obvious trauma symptoms: he compulsively invents things that might work as safety devices in difficult situations; he shakes his tambourine in public places and often bruises himself. He generally tries to hide his feelings from other people, but he remarks in his monologues that he is wearing “heavy boots”. Oskar is a very evident echo of the figure of Oskar Matzerath in the novel The Tin Drum by Günter Grass – not only his name, but also some of his attitudes remind the reader of the uncommonly intelligent boy who refused to grow up in the world he knew. There is a second narrative thread in which the central figure is Oskar’s grandfather, who lost his family and his pregnant girlfriend during World War II, in the bombing of Dresden. Thomas Schell lives with this trauma for the rest of his life; he loses his speech and he refuses to become a father to avoid the suffering of another loss. When his wife (who was his girlfriend’s sister) becomes pregnant he leaves her, returning from New York to Europe, and starts writing a letter every day to the son he has never seen. This son will later be the father of Oscar Schell. After the attacks of 9/11, he returns to New York, lives secretly with his wife and meets his grandson Oskar. They search for therapy together: they dig up the empty coffin that was used for the symbolic burial of Oskar’s father and fill it with his grandfather’s letters. The latter leaves for Europe again – for him no therapy seems to work – but Oskar has clearly started his healing process. There are three narrators in this text: Oskar and both his grandparents. Since their experiences refer to different times and places, narrated time is not linear; this represents a challenge for the reader, who must permanently update his understanding of the fiction. Since these narrators are the figures who suffer from trauma, some aspects of the narration may be understood as modes of representing this condition. The inclusion of photography in the text represents the way Thomas Schell organizes his world and looks for security or, when it is related to Oskar’s experiences, illustrates his quest for knowledge. Some parts of the book seem to be facsimiles of real documents, like the colored handwriting in a sheet Oskar saw at the stationery store, or Thomas Schell’s written dialogue fragments. This use of the materiality implied by graphism and image, unlike what happens in Sebald’s prose, is a way of stimulating a creative reading process, which prompts the reader to witness and participate in a trauma situation. The most remarkable example of the process is the flipbook of

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the last 14 pages, which correspond to the reversed sequence of photos of a man falling into death from one of the towers. Oskar (and the readers) reverse time in order to imagine that the world is safe again – but this visitation of the origins of the trauma works as part of the healing process, since it deals with the past by using time as it moves forward.3 The rhetoric of this novel is innovative, because it amplifies and radicalizes the use of the narrative devices that are usually attributed to trauma fiction. In his book Writing History, Writing Trauma, Dominik La Capra recovers the Freudian notions of “acting out” and “working through” as ways of reacting to historical trauma. He describes both processes in the following terms: In acting out, the past is performatively regenerated or relived as if it were fully present rather than represented in memory and inscription, and it hauntingly returns as the repressed. Mourning [i.e. “working through” FMA] involves a different inflection of performativity: a relation to the past which involves recognizing its difference from the present– simultaneously remembering and taking leave or actively forgetting it, thereby allowing for critical judgment and a reinvestment in life, notably social and civic life with its demands, responsibilities and norms […]. By contrast, to the extent someone is possessed by the past and acting out a repetition compulsion, he or she may be incapable of ethically responsible behavior. Still, with respect to traumatic losses, acting out may well be a necessary condition of working through, at least for victims. (70)

These concepts are useful for the understanding of these texts. It is now clear that Sebald’s text is fixated on the past, which is repeatedly visited – both the implicit (and also the explicit) author and his figures remain trapped in the mechanism of “acting out”. In Foer’s novel, the same happens to Thomas Schell. But Oskar revisits his father’s death in a search for symbolic meaning, for a way of putting trauma into words. This process is concluded when the empty coffin is dug up and filled with the letters written by Thomas Schell for his son. Oskar recovers his affective bonds to his mother, and says he wants to be “happy and normal”. He is engaged in the process of “working through”. A final note: the fiction in Foer’s novel shows that part of western cultural imaginary establishes a link between the 9/11 attacks and the European past. In fact, that event brought about the revival of traumatic memories among those members of the American Jewish community who had escaped the Holocaust. By representing a healing process, this text 3

See Huehls 43.

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thus contributes both to a sort of collective therapy and to the shaping of western cultural memory.

Works Cited Acting out/Working through La Capra. Available [online] at: http://muse.jhu.edu/journals/holocaust_and_genocide_studies/v017/17. 1rubenstein.html Barthes, Roland 2000. Camera lucida: reflections on photograghy. Trans. Richard Howard. London: Vintage Books. Foer, Jonathan Safran 2000. Extremely Loud & Incredibly Close. London: Penguin Books. Huehls, Mitchum 2008. “Foer, Spiegelmann, and 9/11’s Timely Traumas”, Literature after 9/11. Eds. Ann Keniston and Jeanne Follansbee Quinn. New York, London: Routledge, 42-59. Kaplan, E. Ann. 2005. Trauma culture: the politics of terror and loss in media and literature. NJ: Rutgers University Press. La Capra, Dominik 2002. Writing History, Writing Trauma. Baltimore, Maryland: John Hopkins University Press. Sebald, W. G 1996. The Emigrants. London: Vintage. Whitehead, Anne 2004. Trauma Fiction. Edinburgh: Edinburgh University Press.

DON’T LOOK BACK: AESTHETICS OF SURVIVAL GERD HAMMER

My name is Frank Bascombe. I am a sportswriter. For the past fourteen years I have lived here at 19 Hoving Road, Haddam, New Jersey, in a large Tudor house bought when a book of short stories I wrote sold to a movie producer for a lot of money, and seemed to set my wife and me and our three children – two of whom were not even born yet – up for a good life. Just exactly what that good life was – the one I expected – I cannot tell you now exactly, though I wouldn't say it has not come to pass, only that much has come in between. I am not longer married to X, for instance. The child we had when everything was starting has died though there are two others, as I mentioned, who are alive and wonderful children. (Ford 2006: 1)

Frank Bascombe is the main character of Richard Ford's novel The Sportswriter, published in 1986. The figure of Frank Bascombe is resumed by Ford in two other novels, Independence Day (1995) and The Lay of the Land (2006). With Independence Day, Ford became the first author to win the Pen/Faulkner Award and the Pulitzer Prize for Fiction in the same year. I shall focus my paper only on the first part of this trilogy, as the character of the protagonist is here already defined. The story starts in the fictional town of Haddam, New Jersey, where Frank Bascombe leads the apparently calm life of a member of the upper middle class. However, the death of his son Ralph – who died of Reye's syndrome at the age of nine – and his divorce from his wife – she appears in the novel only under the abbreviation X – have led his life into a deep existential crisis. I do not want to go into detail regarding the somehow problematic concept of trauma, as the point of The Sportswriter is precisely how to prevent a traumatic experience, in this case the death of a child and the failure of a marriage, turning into trauma. Frank Bascombe does not show the psychological disposition necessary for the evolution of a traumatic experience to real trauma. He finds strategies that make it possible for him to survive. And it is precisely those strategies that seem to me to be of

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particular importance, because they do not lead to the “normal” path of therapy or meticulous psychological rehabilitation from traumatic events. On therapy, Frank Bascombe speaks only with sarcasm and mockery; therapists, to him, do not seem to be more than clever businessmen who try to eternally attach the patients to the therapists and do not really contribute towards a solution for their problems. But it is obvious that this attitude is already part of his own survival program on the surface of reality. Quite contrary to therapeutic approaches, his defense against the nevertheless permanently present traumatic events consists of the adherence to the surface; in a way he is like a modern Baron Münchhausen, pulling himself by his own bootstraps out of the swamps of the past. And that therefore his personal relations tend to be superficial is certainly also part of the program. Even nowadays, the surface is considered mostly a disdained category, connoted normally with superficiality, and even the tradition of the humanities, the philosophic as well as the artistic, makes a well-known effort to get to the bottom of ideas, constantly searching for profoundness. Among others, Hans Ulrich Gumbrecht (2004) reverted to these circumstances in his book about the Production of Presence. We are searching for meaning or truth nearly exclusively in the profound. And that, for example, makes German romanticism look literally for the blue flower on the inside of a mountain. There are plenty of other examples that could be mentioned regarding the problematic relationship with the surface, like rhetoric or a beautiful appearance, i.e. only words or appearance. And even if we can find some attempts at the retrieval of the honor of the surface, for instance in more recent interpretations of German literature from the beginning of the 20th century (the novels of Heinrich Mann or Franziska zu Reventlow could be mentioned here), the acceptance of pop culture or the importance of the surface in fashion and architecture, the general suspicion against the surface persists. In The Sportswriter, the surface does not appear as a program of literary or artistic avant–garde movements; surface in this novel means an extremely delicate, challenging process of balance, a kind of tightrope crossing over the depths of the past, rather a survival strategy than an artistic decision, even though the two levels, the artistic and the everyday level, coincide.

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Sportswriter or novelist Frank Bascombe began his literary career with a book of short stories which soon caught the attention of a movie producer and guaranteed him a certain financial independence. The small novel he started to write afterwards remains half finished. He was then offered a job as a sports writer, which he accepted, even to his own surprise, and which changed his life. Bascombe therefore turns from the profoundness of the novel to the superficiality of sports writing. This change is, of course, depicted in the form of a novel, which confers a certain ironic tone to the book. In a dialogue with his readers, the first-person narrator Frank explains the change: [w]hy, you might ask, would a man give up a promising literary career – there were some good notices – to become a sportswriter? It's a good question. For now let me say only this: if sports writing teaches you anything, and there is much truth to it as well as plenty of lies, it is that for your life to be worth anything you must sooner or later face the possibility of terrible, searing regret. Though you must also manage to avoid it or your life will be ruined. I believe I have done those two things. Faced down regret. Avoided ruin. And I am still here to tell about it. (Ford 2006: 2)

Literature appears here as a lie, because novels pretend to show profoundness that in reality does not exist. In relation to real life, this profoundness means untruthfulness, as it turns our lives into the lives of dreamers, distracts us from reality. And it might not be by accident that this sounds a bit like a simplified Wittgenstein as a program for literature: [w]hereof one cannot speak, thereof one must be silent. (Wittgenstein 2010: 108) [t]he results of Philosophy are the uncovering of one piece of plain nonsense and the bumps that the understanding has got by running its head up against the limits of language. These bumps make us see the value of the discovery. (Wittgenstein 2009: §119)

Sports writing in this case must be seen as an attempt to avoid profoundness, access to problems which are not directly related with everyday life and which represent in a certain way philosophical problems. Literature brings us in contact with problems that will attack and question our own lives. Learning from sports writing means learning for our own survival:

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[i]f there's another thing that sports writing teaches you, it is that there are no transcendent themes in life. In all cases things are here and they're over, and that has to be enough. The other view is a lie of literature and the liberal arts, which is why I did not succeed as a teacher, and another reason I put my novel away in the drawer and have not taken it out. (Ford 2006: 14)

However, sports writing reveals itself to be more problematic for Frank than he would have expected. He flies to Denver for an interview with a former football player, now handicapped and sitting in a wheelchair. But Herb Wallagher is a desperate man, depressive, aggressive and unpredictable, absolutely not the kind of athlete Frank wanted to write about. In his fantasy, he had imagined Herb as a stabilized man who has overcome his handicap and now behaves like an optimistic former football player, who once had bad luck but is now happy and content with reality. Somehow, Frank wanted to describe him as an example of his own philosophy of life. In the face of the desperate and depressive Herb, Frank gives up the idea of writing about him. And it cannot be by chance that Herb wants to discuss arts, and that gives us the impression that those were responsible for his desolate condition. Herb mentions his problems to Frank, which he actually wants to get away from and which do not correspond to the aesthetic of his surface. Obviously Frank cannot write this story, and at the end of the novel he stops writing about sports – at least for some time. Frank experiences Herb Wallagher and his sad story as a defeat. He feels threatened on a field where he had thought to be safe from profoundness. To give up this literary form is simply a consequence of his effort to stay at the surface and to survive.

Surface as a strategy for survival The overlapping of sports writing and life on the surface is not accidental. Aesthetic criteria are assigned to reality or daily life and vice versa. In everyday life, the idea of distance is of particular relevance. Frank’s conversations with the neighbors, with his African lodger, with his new girlfriend Vicky are all based on social conventions and the will to reveal nothing about himself and – even more important – not to listen to the problems of other people. All his social contacts, his so-called friendships, are superficial, just as his former wife accuses him of being. On an old friend, whom he meets from time to time on the way to work on a train, he writes: “we see each other only on the train to Gotham, something that happens once a week. It is, I think, the essence of a modern friendship” (Ford 41). And of course the poem that he reads to his wife by the grave of

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their son is “a poem about letting the everyday make you happy” (Ford 17). Exemplary for Frank's distant attitude is the Divorced Men's Club, five divorced men who sometimes rent a boat for fishing or have a drink together: [a]ctually we hardly know each other and sometimes can barely keep the ball moving before a drink arrives. [...] But given our characters, I believe this is the most in friendship any of us can hope for. [...] And even though I cannot say we like each other, I definitely can say that we don't dislike each other, which may be exactly the quiddity of all friendships that have not begun with fellows you know before your own life became known to you– which is the case with me, and, I suppose, for the others, though I truly don't know them well enough to say. (Ford 2006: 76)

However, the strategy of distance has its own limits. Walter Luckett, also a member of the Divorced Men's Club, comes into Frank's house to tell him about his problems and confesses that he went to a hotel with a man and slept with him. But Frank does not want to hear these kind of stories; he is only defending himself. Asked for advice on how to cope with problems he answers in an almost trivial way: [w]ell, I take a hot bath sometimes. Or a midnight walk. Or I read a catalog. Get drunk. Sometimes, I guess, I get in bed and think dirty thoughts about women. That always makes me feel better. Or I'll listen to the short-wave. Or watch Johnny Carson. I don't usually get in such a bad state. (Ford 2006: 180)

When Walter finally shoots himself, for Frank it comes as a shock. Walter has come too close, has broken the distance. So it is only consequent that he does not attend his funeral, as he is not willing to alter his own program of survival. On the other hand, for Frank, distance means the failure of all his relationships. The surface he clings to and which guarantees his survival takes its specific shape through the experiences of his past. These experiences not only determine Frank's behavior; his actions and reactions indicate in a somehow ironic way how deeply the losses of his son and of his marriage have hurt him. In the long run, the darkness from the past, which he wants to get away from, forms every single action on the surface and his relationships to other people. To keep himself on the surface and to maintain a certain invisibility Frank adds to distance the gesture of praising. In all events, Frank tries to stay positive and distanced. And the gesture of praising helps him to keep everything away from him. Even during a disastrous Easter lunch with the

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family of his girlfriend, Vicky, he wants to see something good and laudable. The fact that this lunch and family meeting represents the end of his relationship with Vicky is only secondary. More important is to keep your distance, defend yourself from negative ideas and move as fast as you can to another place. In fact, this distance is conscious and is praised because it creates a free space between Frank and other persons or events that he can fill with positive, almost conventional thoughts. One aspect of the function of distance is what Frank calls “mystery”. He gives as an example a short trip to Cleveland, where one might meet a beautiful girl, have a nice lobster dinner and have a common talk, followed by a wild night at the hotel: “Next morning all is well. You fly off to another city, forget about the girl. But you also feel differently about Cleveland for the rest of your life, but can't exactly remember why” (Ford 2006: 99). For the main character of this novel, the strategy of staying on the surface works quite well. He survives and can tell us his story. At the end of the novel we find him in Florida: [t]he time since last April has gone by fast, in an almost technicolortelescopic way – much faster than I'm used to having it go – which may be Florida's great virtue, instead of the warm weather: time goes by fast in a perfectly timeless way. (Ford 2006: 359)

Frank has changed into a figure of the surface par excellence, the modern traveler. Meanwhile, he has given up sports writing, and his last girlfriend, whom he met in New York, he probably might never see again, even though he only finds laudable words for her. She wants to visit him some day, but by then Frank will have already moved to another place. He has made himself small, almost invisible and absent, and everything stays at a great distance from him. He survived his traumatic experiences on the surface; even grief and mourning for his son Ralph are finally over. The price for this survival might seem high, and we hardly can speak of healing. But he has survived on his own, aware of himself and of the meaning of the surface.

Works Cited Ford, Richard 2006 [1986]. The Sportswriter. London: Bloomsbury. Gumbrecht, Hans Ulrich 2004. The Production of Presence: What Meaning Cannot Convey. Stanford: Stanford University Press. Wittgenstein, Ludwig 2009. Philosophical Investigations. Oxford: WileyBlackwell. —. 2010. Tractatus Logico-Philosophicus. New York: Cosimo.

FICTION AS HEALING: MEMORY, TRAUMA AND FORGETTING LUÍSA AFONSO SOARES

In the 1990s, a number of literary theorists, clearly influenced by the socalled memory boom of the 1980s, turned their attention to trauma and formed the core of a new interdisciplinary field, known as trauma studies. This new turn has been interpreted by certain scholars as a fin de siècle phenomenon, yet it has flourished rather than waned in the 2000s (Bennett 18). No doubt the post-colonial and post 9/11 contexts, and the ensuing “War on Terror”, have been important factors in this regard. Furthermore, the fact that most of the witnesses of the Holocaust are coming close to death and the intense fear of oblivion gave rise to so-called WitnessLiterature or Holocaust Culture or even Holocaust Aesthetics. Indeed, in our post-Holocaust world there is an overflow of memory issues, museums, memorials, films that reflect the necessity to remember the traumatic events of the twentieth century and to account for the ways in which they have contaminated our civilization. Academic discourse is also prolific in the reflection and theorization of the possibilities of the aesthetic mediation of traumatic memory. As Cathy Caruth (1995: 4) points out, psychoanalysis, psychiatry, sociology, history and literature are not only beginning to hear each other anew in the study of trauma, attempting to understand the impact of the overwhelming event of the past on individuals, but also to mediate access to memory and testimony and at last to our historical experience - because historically there was no witness to the Holocaust, either from outside or from inside the event (Laub 1995: 66). Moreover, as Andreas Huyssen (2003: 14) remarks, the Holocaust is losing its quality as an index of the specific historical event and begins to function as a metaphor for other traumatic histories and memories. Despite the multiple definitions of trauma that different disciplines and thinkers have brought forward, I recall here a quite simple notion proposed by the historian Dominick LaCapra, which adjusts itself to my analytical perspective:

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Trauma is a disruptive experience that disarticulated the self and creates holes in existence; it has belated effects that are controlled only with difficulty and perhaps never fully mastered. (LaCapra 40)

Intrusive thoughts, painful recollections, anxiety, numbing, nightmares and flashbacks are the most recurrent among post-traumatic symptoms. LaCapra, who engages with the legacy of Freud, argues that one can respond to trauma by acting it out through a compulsive repetition of the traumatic scenes or by working it through, offering resistance and trying to mitigate the overwhelming presence of the past. According to LaCapra, these processes are distinct but not opposed or incompatible. Further, the Historian distinguishes between structural trauma and historical trauma. This last category refers to historical occurrences, such as the Holocaust, slavery or apartheid and is susceptible to working through and for this reason I will be focusing on it in this essay. Despite his critical distance from so-called witness literature, the work of Imre Kertész, a Jewish Hungarian writer who survived Auschwitz, is paradigmatic of the impact of the Holocaust on his life and subsequent writing. In fact, the events of World War II, and in particular the Jews’ fate, have thrown a long shadow over Kertész’s life and work. It is this shadow that I would like to pursue in this essay, following the strategies the writer took to overcome or to live with what he calls “the Auschwitz disease”, and how he translates it into his writing. Imre Kertész carries his traumatic experience as a Sisyphean burden, always aware that it would be impossible to accomplish his task, but always insisting on it, facing the confrontation with the past as an ever-lasting task. Allow me a brief biography: Imre Kertész was born in Budapest. He was deported to Auschwitz and later to Buchenwald before the age of 15. Returning to Hungary in 1945, he worked for a few years as a journalist, till 1951, when the consolidation of Communist rule and the Stalinist dictatorship led to his dismissal. Later, Kertész worked as an independent writer and translator of German literature, but for decades Kertész remained unknown, even in Hungary. The retranslation of his novel Fatelessness into German in 1995 paved the way to a vast new audience. He was awarded the Nobel Prize in Literature, primarily for Fatelessness, written between 1961 and 1974. I will return to this novel later. It was a long time until Imre Kertész was able to put into words his traumatic experience of the concentration camps, as if it had been dissociated from his awareness, repressed or even forgotten. There is in fact a considerable hiatus – or “incubation period” as Freud puts it in Beyond the Pleasure Principle - between living the experience and bearing witness to it or acting it out. In the Nobel Lecture, Kertész (2002) gives an

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explanation for this temporal gap: “Sigmund Freud would trace those moments back to a repressed traumatic experience. And he may well be right,” adds the writer. Modern researchers also point out the belatedness of the experience of trauma, and the need to transform it into narrative memory, which allows the story to be verbalized and communicated, as Pierre Janet had already suggested. According to the themes addressed in his writings, Kertész cannot free himself from the weight of the past or from the memory of what he considers to be “the greatest trauma for the people of Europe since the Crucifixion: Auschwitz”: If I think about a novel, I again think about Auschwitz. Whatever I think about, I always think about Auschwitz. Even if I am seemingly speaking about something completely different, I am speaking about Auschwitz. (Galley Boat Log 1973: 103)

This compulsive repetition, this insistent return to Auschwitz is, as we know from psychology,1 the acting out of the so-called traumatic memory, which the author reiterates throughout his work. The first attempt at acting out and working through his traumatic memories and fictionalizing the traumatic scenes was Fatelessness, which the he began in 1961 and only completed 14 years later. The novel Fatelessness tells step by step the story of a young boy arrested in Budapest and deported to a concentration camp during World War II. This first-person narrative describes in a peculiar and perplexing way the path of that boy, whose desire to live lead him to adapt, in helpless naiveté, to an environment dominated by murder and death. Probably under the numbing effect of trauma, which according to Cathy Caruth can begin during the event, the boy is not capable of conscious understanding of what is taking place, as if he cannot fully assimilate the violent experience. This incapacity allows him to overcome the situation as an emotionless witness or an alienated victim, and a model prisoner. It is only through his imagination that he is allowed any kind of freedom and can overcome his pain for some moments: a flicker of life nevertheless still burned within me as they say, or to put it another way, my body was here, I had precise recognizance of everything about it, it was just that myself somehow no longer inhabited it. (184)

11

On repetition and reemergence of trauma see, for example, McNally (2005).

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The literal, even factual, language and his “traumatic style”, as Louise Vasvari puts it, allied to the objectivity of the narrator, can be read as an attempt to create maximal distance and to empower a critical reading. Indeed, there is neither condemnation nor victimization and apparently the victim of the atrocities gets away unharmed. The readers do not need to resist any kind of sentimentality or moral feeling. They are left alone with their emotions because neither identification nor empathy is demanded of them. The affectless mode of narration and the helplessness of the protagonist, but also his appalling aloofness, give rise to the reader’s indignation and trigger his/her lucidity and critical conscience. This was the author’s purpose. As he stated in an interview: “it was his aim to traumatize the reader into being forced to fill the interpretative gap lacking in the narrator” (Vasvari 262). The suffering of trauma in Kertesz’s characters, however, is not only experienced through the encounter with death, as in Fatelessness, but through the ongoing process of having survived it. As former and recent research has highlighted, for those who undergo trauma, it is not only the moment of the event, but the passing out of it that is traumatic; survival itself can be a crisis (Caruth 9). Kertész’s characters struggle for survival, but a dark shadow always affects their self-conception, their perception of reality, and their adaptation to it. The post-traumatic context in which they live brings about a distressing experience of the present and the inability to cope with the future. Unlike their creator, they cannot find ways to overcome their sense of failure, imprisonment and their “emotional sclerosis” (Kaddish 9), to use an apt expression by Kertész. The narrator of Kaddish for an Unborn Child (1990), who refuses to beget a child after Auschwitz, is haunted by Paul Celan’s Death Fugue – “to dig a grave in the air” – that he uses throughout the narrative as a leitmotif: more darkly now stroke your strings then as smoke you will rise into air then a grave you will have in the clouds, there one lies unconfined. His intrusive recollections disturb his everyday life, his self-perception and of course his socialization. (MacNally 105)

This Kaddish, the Jewish prayer for the dead, is a compulsive monologue, in which the protagonist, tortured by grief, even though lucid, recalls his childhood, his unsuccessful career, his failed marriage and his marginality. As the psychoanalyst Teréz Virág (54) argues, uncertainty in regard to the external world was a common feeling among children who survived the Holocaust. The loss of basic trust has become a determining factor which

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stops the survival of future generations. The memories of the past, the fear of death, are concealed in the anticipated fear which projects the repetition of the past into de future. Kaddish for an Unborn Child is a first-person narrative, part memory work, a compulsive exploration of the past, and in part a philosophical essay, where the author meditates upon his condition as an Auschwitz survivor, “the survival that I never survived” (112): During those years I also became aware of the true nature of my work, which in essence is nothing other than to dig, dig further and to the end, the grave that others started to dig for me in the clouds, the winds, the nothingness. (119)

The protagonist of Fatelessness, Gyorgy, also has the Kaddish in memory, not as his prayer, but as the other prisoners’ prayer in the concentration camp, whenever death overhung the camp. In other cases, as in Fatelessness, the characters have a fragile memory: after his liberation, Gyorgy is afraid of forgetting his happiness in the camps and of not being able to bear witness, should he be asked (262). Somehow, Pathseeker, the title of a novel by Kertesz published in 1977, stands for the character’s anxiety and the disengagement that encompasses all their lives. The unnamed protagonist is revisiting the site of an unspecified atrocity committed upon him, in order to bear witness to everything he has seen, but in the end he is unable to accomplish his mission. The sites he was revisiting had been transformed into a museum and a factory and his own “knowledge was futile, his truth indivisible”, he concludes. Besides this the bus schedule was inconvenient and his wife was waiting for him so they could both go on a sea voyage that would start the next day (97). The labyrinthine syntax and ambiguity stress the alienation lived by the character. The title Pathseeker can be understood as a synecdoche, in which the part represents the whole, and finally as an allegory of his character’s condition, always living a skeptical and conflicting present. The novel Fatelessness is the only one to take place at a concentration camp. The rest of Kertész’s oeuvre gives an account of the impossibility of overcoming the traces of the past, which continually follow his characters and contaminated all of his life: “For four years I have been working on the novel – or perhaps rather on myself”. And three years later he wrote in his notebook, Galley Boat-Log: “one starts to write like someone trying to convalesce from a severe ailment, to master his mental illness – at least as long as he keeps on writing” (98). Writing is, for Kertész, primarily a first step, an individual need or inner compulsion. Imre Kertesz, translator of

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Sigmund Freud’s work to Hungarian, would have known and felt that writing enables a cathartic experience. A Holocaust survivor and psychiatry professor, Dori Laub argues that there is, in each survivor, an imperative need to tell and thus to come to know one’s story, unimpeded by ghosts from the past against which one has to protect oneself. One has to know one’s buried truth in order to be able to live one’s life. (Laub 63)

But writing is not only a personal matter for Kertész. The stimulus to write comes from the desire to accomplish an ethical imperative, as well as sociopolitical agency, in a way. The compulsion to bear witness grows ever stronger within me, all the same, as if I were the last one still alive and able to speak, and I were directing my words, so to say, at those who will survive the flood, acid rain or the Ice Age (…) (Galley Boat-Log 1974).

The persistent denial of autobiographical traces and the identification as fiction give Imre Kertész the ability to inscribe his novel in the collective memory as universal experience, which means his literary work is wishfully not a personal testimony, but an allegory of the human condition in any totalitarian system. That is one of the reasons why Kertész insisted on identifying his work as fiction and not autobiography. As the writer argues: “The main difference is that fiction creates a world, while autobiography recalls something that has occurred” (Dossier K/The File on K. 13).2 This almost fictional compulsion can be explained by the writer’s need to distance himself from his own past. Like his character in Fatelessness, Kertész also uses imagination to overcome the experience of having survived and being able to speak of the Holocaust. This perspective explains Kertész’s acclamation of the film La vita è bella (1998) by Roberto Benigni. Fiction allows Kertész to build a kind of “mannequin self” (Leys 113) who can assume the burden of memory, and to escape from the traumatic experience that has such bearing on his life. Writing a novel instead of an autobiography allows Kertesz to perceive and listen to the voice and to the speech rendered by another’s wound as a kind of brechtian Verfremdungseffekt/“alienation effect”. This strategy permits an 2 “Der wesentliche Unterschied besteht trotzdem darin, dass die Fiktion eine Welt erschafft, während man sich in der Autobiographie an etwas, das gewesen ist erinnert.”

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emotionless distance and the depersonalization of the experience. Writing is a constructive and creative work rather than a recollection of the past, here only used as raw material. Following Plato or Lyotard, writing can be a mechanism of forgetting. In a recent interview, Kertész stated: “After having written the novel I’ve almost stopped thinking about my experience in the concentration camp: it became my character’s experience. I’m free and empty” (Galley Boat-Log). Imre Kertész has recently published (2006) an essential text to understanding his aesthetical strategies and his Weltanschauung. It is entitled The File on K.3 and illustrates the role that fiction plays in Kertész’s life and work. It is, as the author states, an autobiography in two voices and consists of an interview conducted with himself. This strategy underlines first of all the perception of memory work as a dialogical process and the importance of the act of speaking and telling in the construction or reconstruction of selfhood. The author allows himself to correct or to change his memory, because as he himself recognizes, the memory is changeable and the writer a changeling or a self-deceiver: he relates what is lived and changes himself thereby (Berliner Tagesspiegel 10.10.2006). This means the autobiography enacts his memory, but during this process he also reshapes his identity – shaping himself in the process of shaping his story. Art, as we know from Freud and recent research has ratified, offers a way of working through or translating traumatic impact (Kaplan 21). In the case of Imre Kertész it is fiction, and the use of imagination, that provides a way both of acting out and working through the wounds and scars of the past and provides a cure, even if provisional. Furthermore Kertész’s acts of citizenship, his engaged critique in the public space, can be read, if we follow LaCapra (31), not only as a form of coming to terms with his past but also as a way to intervene in the public space. As the author states, when he is thinking about Auschwitz he is reflecting not on the past but on the future. On the contrary, his characters insist on refusing the prospective future, and are unable to reach closure and reengage in life. The insistent open-end in Kertész’s novels illustrates this impossibility or incapacity. Indeed, it is characteristic of Kertész’s work that his narrators’ past tense recollections always conclude in the present tense, as though to write about the Holocaust in the past tense is impossible. We might read this impossibility as demonstrating the ongoing trauma of the Holocaust survivor. However, in his Nobel lecture, Kertész clarifies that he means more than this when he says: “Auschwitz …is still not over” (The Nobel 3

Dossier K. in German.

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Lecture). Believing that “nothing that has happened since Auschwitz… could reverse or refute Auschwitz”, he explains: In my writings the Holocaust could never be present in the past tense. It did become evident to me that the form of the story would not be one of ‘recounting’ but of a continuous, intense presence.

Works Cited Bennett, Jill 2005. Empathic Vision. Affect, Trauma, and Contemporary Art, Stanford California: Stanford University Press. Caruth, Cathy, Ed. 1995. Trauma. Explorations in Memory. Baltimore and London: The John Hopkins University Press. Laub, Dori 1995. “Truth and Testimony: The Process and The Struggle”. Trauma. Explorations in Memory. Ed Cathy Caruth. Baltimore and London: The John Hopkins UP, 61-75. Huyssen, Andreas 2003. Present Pasts. Urban Palimpsests and the Politics of Memory. Stanford, California: Stanford University Press. Kaplan, Ann 2005. Trauma Culture. The Politics of Terror and Loss in Media and Literature. New Brunswick/New Jersey/London: Rutgers University Press. Kertész, Imre 2010. “Nobel Lecture – Literature 2002”. Nobelprize.org. 31 August. Accessed [online] at: http://nobelprize.org/nobel_prizes/literature/laureates/2002/kerteszlecture-e.html. —. 2008. The Pathseeker. Trans. Tim Wilkinson. Brooklin, New York: Melville House. —. 2006. Dossier K. Eine Ermittlung. Trans. Kristin Schwamm. Reinbeck by Hamburg: Rowohlt Taschenbuch Verlag. —. 2005. “Galley Boat-Log (Gályanapló): Excerpts”. Trans. Tim Wilkinson. Imre Kertész and Holocaust Literature. Eds. Louise O. Vasvári and Steven Tötösy Zepetnek. West Lafayette Indiana: Purdue University Press, 97- 110. —. 2004, Kaddish for an Unborn Child. Trans. Tim Wilkinson. New York: Random House. LaCapra, Dominick 2001. Writing History, Writing Trauma, Baltimore and London, The John Hopkins UP. Leys, Ruth 1996. “Traumatic Cures. Shell Shock, Janet, and the Question of Memory”. Tense Past. Cultural Essays in Trauma and Memory. Ed. Paul Antze and Michael Lambek. New York/London: Routledge, 103145.

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McNally, Richard J. 2005. Remembering Trauma. Cambridge/ Massachusetts/London: The Belknap Press of Harvard University Press. Vasvári, Luise O. and Steven Tötösy de Zepetnek, Eds. 2005. Imre Kertész and the holocaust Literature, West Lafayette: Purdue UP. Virág, Teréz 2000. Children of Social Trauma. Hungarian Psychoanalytic Case Studies. London/Philadelphia: Jessica Kingsley Publishers.

MARY SHELLEY’S FRANKENSTEIN: WRITING A WAY OUT OF TRAUMA? CECILIA BEECHER MARTINS

Introduction In this essay, I will explore the possibility that creative writing, especially if it follows a free associative pattern, might permit individuals to “write their way out of trauma”. I will refer to Mary Shelley’s writing of the Gothic novel Frankenstein (1818) as an instance of this, supporting my arguments by referring to observations made by Shelley’s biographers on how the writing of Frankenstein may have permitted her to come to terms with complex issues arising from her personal history and circumstances at the time of writing the novel. I am following this line of inquiry because my practical research has demonstrated that, under certain circumstances, watching films telling simple stories with positive and uplifting outcomes can reduce viewers’ anxiety levels. In some cases, when viewers reflected on the scenes they connected with and/or did free associative film analysis based on these connections, improvements registered during the viewing experience were extended beyond this. As well as obtaining sustained reductions in anxiety, often volunteers were able to develop new coping strategies based on the awareness and acceptance of self acquired through this technique (Martins 2012). In this essay, I will extend the conjecture and ask if writing can help authors to develop appropriate coping strategies because of the greater self awareness and acceptance acquired when writing includes free associative elements. Asking if free associative writing can provide increased awareness and acceptance of self is central to this essay because acceptance of self is often a difficult issue. This is particularly true for those suffering from psychotherapies. However, psychoanalyst Heinz Lichtenstein, demonstrated in his 1961 essay “Identity and Sexuality: A Study of Their Interrelationship in Man” that free associative analysis can lead to awareness and acceptance of self when this is considered a function of a

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unique identity theme.1 Lichtenstein proposed that individuals can aspire to happiness as long as they understand how they interact “naturally” with the outside world and take this innate stance into consideration when making important lifestyle choices, as he considers this “natural” interaction a function of a unique identity theme. When psychoanalytical literary scholar Norman Holland observed patterns in volunteers’ free associative literary analysis, he used Lichtenstein’s unique identity theme to construct identity profiles for these volunteers.2 He thus concluded that 1 In his clinical work, Lichtenstein observed that, through free association, patients could gain insight into why they interact with others as they do. Lichtenstein was able to identify patterns in these interactions and he ascribed these to a construct he classified as a unique identity theme, which is singular for each individual. He claimed that this construct is established in the first 30 months of childhood (before the infant understands him/herself as a being independent of his/her primary caregiver) when the child learns how to obtain reactions from the outside world. Lichtenstein demonstrated his theory by presenting the case study of his patient Anna S., which, he holds, illustrates that, by accepting this construct as a product of biology and early care and taking it into consideration when making important lifestyle decisions, individuals could aspire to happiness (Lichtenstein 1961). 2 In the Delphi Seminars Holland and his co-researcher Murray Schwartz observed very fixed patterns in students’ free associative literary criticism texts. They saw that, independent of the type of text studied, the same “reaction” patterns could be seen in each student’s interpretations. Though the patterns were repeated by the same student, they were never replicated from student to student. Holland and Schwartz felt Lichtenstein’s unique identity theme theory could offer a framework to explain the individuality on the one hand and uniqueness on the other of the students’ interpretations (Holland and Schwartz 2008). In 5 Readers Reading (1975), Holland expands on his interpretation of Lichtenstein’s unique identity theme theory within the context of artistic production and interpretation: “ […] for every individual there is a central identity “theme” on which he/she lives out variations, much as a musician can infinitely vary a single musical motif to create a theme and variations. The perception of the “whole person”, says Lichtenstein, summing up his own conception of this kind of interpretation of a personality, “means the process of abstracting an invariant from the multitude of [bodily and behavioral transformations during the whole life of the individual]. This invariant, when perceived in our encounter with another individual, we describe as the individual’s ‘personality’ – or “myth” or “humour” or “character” or “ego identity” or “lifestyle” or “identity theme.” […] Lichtenstein, suggested a specific phase at which the identity theme takes form: during the growth of self-object differentiation, as the child begins to recognize that his mother is separate and therefore that he is a separate being. Although born with a great range of possible adaptations, “the specific unconscious need of the mother … actualizes out of these infinite potentialities one way of being in the child, namely being the child for this particular mother, responding to her unique and individual needs.” This way of

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unique identity theme patterns can also be seen in literary analysis and suggested that the same was true of literary production, especially if it follows a free associative line (Holland 1975: 58-65). I appreciate that it is not possible to provide definitive affirmations within the scope of this essay. Therefore, I simply wish to raise the question: if Frankenstein contains free associative elements, could this have permitted Mary Shelley (hereafter referred to as MS) to write her way out of trauma? This idea is pertinent for this essay, because the case studies psychoanalyst Norman Doidge presents in The Brain that Changes Itself (2007) demonstrates that verbalizing the roots of trauma, through free association, even when no solution is offered, can be the first step towards developing healthier living patterns and begin healing processes. To verify whether MS’s initial writing process contained free associative elements, I will compare the conception and writing process employed to produce Frankenstein with Norman Holland’s instruction on writing free associative literary criticism. I consider these ideas to be relevant today because, in contemporary society, despite improved diagnosis and psychotherapeutic practices, the level of anxiety-related disorders is increasing exponentially. Recent studies indicate that if the twentieth century was dubbed the age of anxiety, the twenty-first should be considered the age of anxiety disorders. According to the U. S. National Institute for Mental Health’s (hereafter referred to as NIMH) online publication Anxiety Disorders, 18.1% of the U.S. population today is affected by some form of anxiety disorder. The NIMH publication “Any Anxiety Disorder Among Children” suggests that 25.1% of American teens are susceptible to anxiety disorders and 5.9% are believed to suffer from severe anxiety disorders. Knowing that the resolution to this kind of problem is rarely simple or all-encompassing, perhaps it is worth looking in unconventional places, like literary production, to see if useful knowledge can be gleaned, and added to the equation.

Why Writing a Way out of Trauma? If the central question of this essay is did writing Frankenstein help MS write her way out of trauma, one is left to ask why the author might have needed to do this. There are several answers to this question. MS was fully aware of the fact that her birth had been the cause of her own mother’s being represents a “primary identity”, “a zero point which must precede all other mental developments”. Then, the child develops in a kind of rhythmic oscillation. He brings the identity he has achieved to each new experience, which in turn enlarges the identity he brings to it” (Holland 1975: 53-4).

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death. According to her biographer, Emily Sunstein, the circumstances of her birth meant that MS not only grew up without a mother’s love; she also, in her darkest moments, considered herself a mother killer (Sunstein 1991: 131). Notwithstanding her mother’s absence, another biographer, Miranda Seymour, writes of the relative stability of MS’s early childhood, because of the affection she felt for her father and Louise Jones, an affectionate nanny who took care of MS during the first three years of her life. However, this situation changed, when Jones was abruptly dismissed and William Godwin remarried. MS must have felt alone and abandoned at this time, because her relationship with her stepmother Mary Jane Clairmont was always strained. This happened for a number of reasons. Firstly, Mary Jane favored her own children over her step daughter and she is also reported to have felt that MS was a rival for William Godwin’s affections. Also, despite the affection between father and daughter, when MS was only 14 years old, Godwin sent her to Dundee to live with the Baxter family (whom she did not know well). It is recorded that MS felt her stepmother had orchestrated this event. Still, she must have questioned her father’s love for her, especially as her stay with the Baxters extended over a full two years, punctuated only by brief visits to London (Seymour 2000). On her return to London and reinstatement in the Godwin household, aged 16, MS soon struck up a meaningful friendship with Percy Shelley (hereafter referred to as PS). As one of Godwin’s disciples, PS was a regular visitor in the household. While PS regarded the philosopher as an intellectual mentor, financially, Godwin was much in need of the young peer’s patronage. When the relationship between MS and PS deepened, and MS informed her father of the affair she had entered into with the poet, already married despite his youth, Godwin reacted violently. Sunstein wrote “Godwin was in a cold, implacable rage […] ‘Mary has committed a crime’ he declared against hallowed social arrangements, morality, her family and Harriet Shelley” (Sunstein 1991: 89). PS and MS were forced to flee to the continent because of the scandal their affair had caused in polite society. They were also financially strained, as PS’s family did not approve of his abandonment of his wife Harriet. Whether Godwin’s reaction was powered by a primitive sense of selfpreservation that overpowered his logical and intellectual powers warning him that his daughter’s behavior could threaten his livelihood or something else, we will never know. However, it must have been very difficult for MS to understand her father’s reaction, especially as he had married two unwed mothers, and was a self-professed liberal. Despite his absences Godwin had been the one constant adult presence in her life to

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that point. Nevertheless, Godwin only spoke to his daughter two years later, after she married PS following Harriet Shelley’s suicide. More bizarrely, while estranged from his daughter, Godwin continued to communicate with PS requesting financial support (Mellor 2001: 234-5). While living with PS, MS had also had her own share of difficulties with motherhood. Their first child, Clara, had died in 1815, after just 13 days. She had borne a son the following year, and the following summer of 1817, when she conceived Frankenstein, she was again expecting a child.

The Conception and Initial Writing of Frankenstein Readers and scholars have marveled at how a 19-year-old girl could have produced such a phantasmagoric wonder. Much has been written about the backdrop of its conception. The summer the Shelleys and Jane Clairmont (later called Claire, and MS’s half-sister) spent on Lake Geneva is one of the legends of modern literary history, especially as the party met regularly with their neighbors Lord Byron and his talented young physician John Polidori. The Shelleys, accompanied by their infant son and MS’s stepsister, arrived first at the lake. The party must have been in a good mood because MS was described as “exhilarated as rarely before in her eighteen years by Geneva’s ‘divine’ summery air and light and picturesque scenery, and by a sense of liberation and efflorescence” (Sunstein 1991: 117). The location and the mood may have been influenced by Jane Clairemont, who hoped to renew her romantic relationship with Lord Byron, who, at the time, was her acquaintance and not the Shelleys’. There was a little initial awkwardness because Byron and Polidori were not expecting the party. However, the initial mood was overcome quickly and the poets found kindred spirits in each other; Byron again smiled on Jane Clairmont and enjoyed debate with MS. MS openly acknowledged how privileged she felt to take part in the discussions. The group settled into a routine that fit around Lord Byron’s rhythms. PS and MS worked in the mornings,3 and Byron was writing the third canto of Childe Harold. He shared his writings progressively with the party who discussed and bathed in the harmony of his poetry. When the weather turned turned foul and sailing was not possible, the party took to reading and telling ghost stories for light diversion. Lord 3

They worked briefly on a French translation of William Godwin’s Enquiry Concerning Political Justice and its Influence on Modern Morals and Manners, probably to assist the Godwins’ financial situation, because Fanny Imlay had written to them to remind them not to neglect the philosopher’s patronage (Sunstein 1991: 117-8).

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Byron challenged them all to write a tale of the macabre, to match or better the ones they were reading. MS was greatly excited when Byron suggested they might publish their ghost stories together. Byron and PS began quite well, but soon became impatient with the simplicity of prose. Nevertheless, when they had given up on their efforts, and even the novice Polidori had begun, MS still found herself unable to begin her text (Shelley 1994: 5-6). Sunstein wrote that MS became quite despondent at her inability to begin her tale (Sunstein 1991: 120-124). However, MS’s delay was caused by her desire to produce something worthy of her companions: “I busied myself to think of a story […] One which would speak to the mysterious fears of our nature and awaken thrilling horror” (Shelley 1994: 7). MS aspired to write a story that “would speak horror to the mysterious fears of our nature and awaken thrilling horror” (8). She was not willing to settle for anything less: “If I did not accomplish these things my story would not be worthy of its name” (8). Whether this desire was born out of awe of her companions or a fear of sharing Polidori’s fate, one can sense chagrin in MS’s transmission of the good-natured fun with which his efforts were received: “Poor Polidori’s” skull-headed lady had to be consigned to the Capulet tomb, as the party considered it was the only appropriate place for her (7).4 It does not appear that MS wished to suffer the same fate. She was aware that she would have to reach inside herself in order to write something really out of the ordinary, but she had not been able to find the initial spark that could lead her into this tale. So, every day when her companions asked her if she had begun, she would answer in the negative, explaining: Everything must have a beginning […]. Invention it must be humbly admitted does not consist of creating out of the void, but out of chaos, the materials, must in the first place, be afforded: it can give form to dark, shapeless substances, but cannot bring into being the substance itself.” (8)

MS was used to creating stories from single prompts. Constructing waking dreams was one of her favorite pursuits until the chores of family and motherhood took precedent on her time. From childhood, she had been 4

Curiously, that summer sowed the seeds for different genres of fiction in the English language. Polidori would later write the first vampire short story published in the English language, “The Vampyre” (1819). This was inspired by the fragment of story begun and quickly abandoned by Byron. Both Polidori’s story and Byron’s “Fragment of a Novel” cast Augustus Darvell as their principle character. "The Vampyre" was first published on 1st April 1819 by Henry Colburn in the New Monthly Magazine, with the false attribution “A Tale by Lord Byron” (Frayling 1992).

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used to compiling stories in her mind. Growing from singular prompts, they would network with other notions in her mind. She would let her thoughts run freely through her mind, so that they could “pick up” new directions and compile original and unique stories: It is not surprising that, as the daughter of two persons of distinguished literary celebrity, I should very early in life have thought of writing. As a child I scribbled: and my favourite pastime during the hours given to me for recreation was to ‘write stories’. Still, I had a dearer pleasure than this, which was the formation of castles in the air – the indulging in waking dreams – the following up trains of thought, which had for their subject the formation of a succession of imaginary incidents. My dreams were at once more fantastic and agreeable than my writings. In the latter I was a close imitator–rather doing what others had done than putting down the suggestions of my own mind. What I wrote was intended for at least one other eye – my childhood’s companion and friend; but my dreams were all my own; I accounted for them to nobody; they were my refuge when annoyed – my dearest pleasure when free. (5)

The process MS describes is closely related to free associative analysis, especially the modification to conditioned association described by Eric Fromm in his essay “Remarks on the Problem of Free Association” (1955). Fromm encourages the therapist to get the patient to let his/her thoughts flow out from specific prompts. Rather than asking patients an open question such as “how they feel”, Fromm suggests asking “how do you feel, at this moment?” because the latter encourages specific responses, whereas the former tends to allow the patient to go around in circles and not express real sentiments connected to concrete situations. Fromm suggests that, while conditioned association is more challenging, it is also more productive. When MS actually started to write her horror story, she did so to a very specific prompt, and when we look at it from a psychological perspective, this prompt led her on a “merry chase” through her thoughts, even if it had little to do with the internal subjects she explored – abandonment and rejection. One night the group’s conversation turned to contemporary scientific theory and investigation, subjects that greatly interested Byron and PS. This conversation was her prompt; later MS wrote: “Night waned upon this talk [of galvanization and Dr. Darwin’s experiments on animation of vermicelli] and even the witching hour had even gone by before we retired to rest” (Shelley 1994: 8). Oblivion did not come to MS when she lay her head on the pillow. Rather her mind worked on a waking dream, perhaps in a similar fashion to her childhood practice. Her mind moved from image to image and conjured up the central core of a fantastic story:

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When I placed my head on my pillow, I did not sleep, nor could I be said to think. My imagination, unbidden, possessed and guided me, gifting the successive images that arose in my mind with a vividness far beyond the usual reverie. I saw – with shut eyes, but acute mental vision – I saw the pale student of unhallowed arts kneeling beside the thing that he had put together. I saw the hideous phantasm of a man stretched out, and then, on the working of some powerful engine, show signs of life, and stir with an uneasy, half-vital motion. (8-9)

This night vision gave MS the beginning she had been seeking. She realized she need only transcribe the scenes that had “haunted my midnight pillow”, because she was convinced that “what terrified me will terrify others” (9). The day after her “nightmare”, the weather had turned fine and the men went off to sail, but MS stayed at home to commit her ideas to paper. She began her writing with the words “It was on a dreary night of November,” (idem); the same sentence that introduces Chapter Five of the novel, where Victor Frankenstein reflects on his creation and the consequences of his act (55). On returning to their temporary home, PS was very impressed with the few pages MS had written and he encouraged her to develop her story more fully. She did just that over the following three weeks. Emily Sunstein proposed that MS’s nightmare unleashed the full power of MS’s imagination into her creative capacity: The nightmare imploded on the barrier that had always dammed her [MS´s] imagination from her writing. During the next three weeks, she evolved her mature creative mode, deploying her imagination among actualities that in turn catalyzed it and developed the core plot of Frankenstein. (Sunstein 1991: 122)

The writing of Frankenstein can be divided into two separate periods. The primary phase, associated with the conception, stimulated by the waking dream, yielded the plot and the core text. The dream provided MS with the three elements that would be central to her story: “the pale student”; “the hideous phantasm of a man” (who would become her monster) and “the working of some powerful engine” (Shelley 1994: 10). Letting her thoughts flow from these three building blocks, the work of fiction she produced not only called on her conscious mind and thoughts, but also fed into the inner turmoil of her psyche and, I consider, helped her to make sense of many issues that perturbed her at this time. The central story was written very quickly, in less than a month. This was followed by a secondary phase lasting more than a year, which was more intellectual and sophisticated. The primary stage had little outside

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influence, but MS acknowledged that she would never have written Frankenstein in its final form without PS’s advice and encouragement. In the secondary phase, MS also recognized the Promethean nature of the story and its parallels with Milton’s Paradise Lost (Sunstein 1991: 19124). PS offered not only encouragement but also counsel. On the 21st August MS wrote that she and PS talked about her “little story” and he encouraged her to write a full-length novel (123). Miranda Seymour referred to Frankenstein as Mary and Percy’s literary child. She commented that it marked the stage where MS moved out from under her father’s intellectual influence to that of her husband (Seymour 2000: 190). However, William Godwin’s thinking and writing can be found in Frankenstein too. Seymour claims that MS forcefully and imaginatively reclothed and reshaped William Godwin’s ideas in Frankenstein: “Treat a person ill, and he will become wicked […] divide him a social being, from society, and you impose upon him the irresistible obligations – malevolence and selfishness” (189).

Writing a Way out of Trauma Many theories have been presented as to why MS chose to turn the creature into a monster. Seymour considered that MS’s impulse might have grown out of her desire to understand mothers’ relationships to her; her own mother, whom she “killed”, or her stepmother who rejected her: “Did Mary see herself as the monstrous child who had killed her mother or does the creature represent her tormented relationship with Mary Jane Clairmont, the step mother who made her feel an exile in her own house?” (Seymour 2000: xii) It is hard to imagine that such a concrete idea was explored in MS’s writings, especially if she followed the “waking dream” construct, explored later in this essay, because this has such close parallels with free associative writing. In this process, thoughts flit freely from one notion to another, and in this passage, might unravel “secrets of the heart” hidden in the unconscious. However, while I disagree with Seymour’s aforementioned proposal, I do agree with her suggestion that feelings of confused love and rejection may have contributed to the setting of Frankenstein (78). I also embrace Anne Mellor’s suggestion in the essay “Reflections on Writing Mary Shelley’s Life” (2001), in which she questions whether Frankenstein did not grow out of MS’s unconscious effort to understand the different types of abandonment that occurred to her: this childhood experience of abandonment, both by mother and by father, was autobiographically encoded in the life of Victor Frankenstein’s

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creature. […] this narrative is Mary Shelley’s psycho-autobiography, a retelling of her own childhood experience of paternal abandonment, of her personal conviction that she had been forever shut off from a loving family (Mellor 2001: 234-5)

I believe that this is particularly true when one considers that abandonment and confusion were not only confined to MS’s childhood and early adolescence, but were a common element throughout her life. Interestingly, Sunstein noted that writing the book provided MS with an “outlet for a lurking black pessimism, astonishing in a girl so young, so enthusiastic for all her apparent stoicism, and so emboldened to overreach by faith in her star” (Sunstein, 1991: 132). MS would describe the summer she developed the central plot of the book as “when I first stepped out from childhood into life” (117). Despite the trials of her life, rejected by her father and society, the premature deaths of infant children, siblings and a brilliant, beloved if somewhat roguish husband, MS managed to lead a highly productive and balanced, if controversial, life. Though she suffered from bouts of depression, she supported herself and her family with her writing and was a devoted mother. There are many records of her happiness in later life (350, 378). Therefore, perhaps writing Frankenstein did indeed help her leave her earlier traumas behind. One is left to question how MS’s writing process compares to free associative writing. In the primary developmental phase of the book, MS uses the term “train of feeling” to describe how the story flowed out from the initial prompt of the night conversation and led her to produce and connect three images: “the pale student”; “the hideous phantasm of a man” and “the working of some powerful engine”. The story flowed out from her mind’s unconscious connection of these three elements. The concept of writing “a train of feeling” is very similar to the free associative writing of literary texts taught by Norman Holland and Murray Schwartz in the Delphi Seminars at the Centre for the Psychological Study of the Arts at the State University of New York, Buffalo.5 In Delphi Seminars, all participants write free associatively following the “train of feeling” inspired in them by a particular poem or piece of prose. They are instructed: In writing your response, talk about the work as a whole or parts of it (characters, phrases, ideas) that particularly interest you.

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The original work was carried out in the 1960s and 70s. A later publication, Know Thyself (2008), draws together the three explanatory essays.

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Whatever you write about, try to avoid the intellectual, analytical response of the ordinary English class. Try instead for three things: feelings, associations, persons. Feelings should form the foundation of your written response. Describe them as best you can… as precisely and as fully. Analogies will help you and lead you toward associations, that is, ideas, memories, or thoughts that come to mind as you let the literary work ‘float’ in your consciousness. (Holland and Schwartz 2008: 5)

Participants do not analyze their thoughts, they merely write about what a particular text brings to their minds. Just as MS did not choose the scientific conversation, the participants did not choose the texts they associated with; these acted merely as a stimulus for the exercise. Participants wrote highly individual texts that depended strongly on their personal living experience. The texts often led writers to verbalize and thus recognize features in their characters that they had not seen before, and/or to recognize how certain events had affected their outlook on life. Holland and Schwartz discovered that, when writing this way, each participant reacted differently to the same literary work. The stimulation point was also often different (29-51). For instance, when writing free associatively on the final scene of King Lear, one of the volunteers, Barbara, whose father had deserted her family when she was four, wrote that she craved the ability to love a father like Cordelia does, but recognized that this was not possible for her because of her own father’s actions. “[My family] was banished by our father when I was four […]. No, I am not a Cordelia; I have not the power of forgiveness nor do I have that original bond of love that allowed her to keep faith with her father” (34). The free associative analysis permitted Barbara to understand why she reacted as she did, and brought tolerance of herself and her “natural” and up until then unperceived tendencies. This in itself could permit her to change, or at least not transfer tendencies acquired from her father’s actions to other males. Participants on this program were influenced very positively by the free associative writing: “We had risked ourselves and come through winners” (7). When summarizing the positive effects of this type of writing, Holland and Schwartz considered that free associative writing “could account for both communally shared perceptions and our individual styles of perception” (27). Thus the experience of free associative writing can be seen as permitting individuals to understand firstly their way of being in the world; secondly, how they have been influenced by the people in their lives and finally, how they have been swayed by the social setting within which they were raised.

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I think one could also ask whether the same sort of understanding dawned on MS as she constructed the plot of Frankenstein. Like the students and teachers who participated in the Delphi Seminars, she was stimulated to begin her writing by contact with an object outside herself: PS and Byron’s lively and informed discussion on scientific research. This debate “floated in her consciousness” as she tried to go to sleep. I propose that her mind (both conscious and unconscious) made associations that produced three elements: “the pale student”; “the hideous phantasm of a man” and “the working of some powerful engine”. The working of the powerful machine was probably the most direct connection to the debate on how science could bring life to inanimate matter. However, this life did not take the form of a hopping frog or a shivering mass, but a pale, unworldly student and his hideous creation. As the story flows through MS’s mind, both Victor and his creation are benign and well-intended at the beginning. But then things change and both become monstrous. Many questions have been asked about this transformation. Who do Victor and the monster represent? Is Victor a representation of William Godwin? Therefore, one is left to ask whether MS cast herself as the creature. Is the transformation into the monster an unconscious extrapolation of what MS sees herself becoming; when rejected is she transformed into a hideous destroyer of mothers, families, even the social order? Or are Godwin’s theories a reflection of the creature; initially kind and good if socially unaligned, apparently fresh, new and inspiring, but capable of destroying those they are meant to protect when put into practical application? We will never know the answers to these questions; we just know that the story flowed quickly along the lines presented as MS let it develop freely, as a “waking dream”. Curiously, the monster’s first victim is Victor’s angelic younger brother William. This name is significant because three important people in MS’s life bore that name: her father, her half-brother (a favorite of both her stepmother and her father) and her infant son, who would die the year after the publication of her masterpiece. But perhaps the most significant outcome of the relationship between Victor Frankenstein and his creature/monster is that neither grow into a true hero nor a pure villain. Both characters share blame for the situation that is the product of their intervention. However, despite his intelligence, Victor, beguiled by pride, refuses to recognize his own guilt, thus condemning their world to destruction and dictating the terms of their mutual annihilation. Perhaps writing this story showed MS that to avoid this destruction in her own life, she needed to forget pride and forgive past errors and move on to higher ground. Seymour proposes that love and the consequences of refusing this are the central issue dealt with in

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Frankenstein. She writes, “only when her creature is denied affection does he become a monster and take on the species which gave him life (560). So perhaps unconsciously the novel is working out the plot of her own life, showing her what could happen to her world if she refused to forgive and love. I propose that writing Frankenstein may have allowed MS to write her way out of trauma, because it allowed her to revisit painful issues from her past and reveal them in the neutral theatre of a fictitious and fantastic story. Writing can reveal hidden issues, as happened in Barbara’s story, presented above. Norman Holland extended his free associative analysis to film criticism. In Meeting Movies (2006), he demonstrated that by “meeting the movies, that met him” he was able to “meet himself” (12). He not only understood himself better; he also eliminated certain psychological barriers that had built up in his unconscious due to his living experience. Reading his analysis of Casablanca (1942), which he watched initially as a teenager in New York, too young to be part of World War II, the reader sees Holland come to terms with his ambiguous relationship to World War II and notions of manliness (Holland 2006: 17-35). Notions of manliness are also explored in his analysis of Shakespeare in Love (1998), which he watched as an established academic and scholar (Holland 2006: 136-155). As one reads these personal associations, one sees how issues that had not been resolved during his actual living experience were understood and dealt with through the lens of each film. Free associative writing appears to be able to reach across barriers, built by life’s experiences, that we are not consciously aware of. Reviewing Holland’s work, I was led to suppose that free associative writing does not have to present solutions; the verbalization of the roots of the problem appears to allow for recognition and the development of new patterns when necessary. This pattern is also observed in a case study presented by psychoanalyst Norman Doidge. The subject of this study is Mr. L., a middle-aged man at the time of his treatment. Mr. L.’s mother died when he was an infant in the 1950s, an event which devastated Mr. L.’s family. However, at the time, it was considered best never to talk about Mr. L’s mother to him, as the adults thought that this would be too difficult and painful for the child. Thus, Mr. L. never grieved for her or his loss. He lived a conventional life and grew into a normal adult. He got married and had children of his own. However, despite loving his successive partners and his children, he was not able to form proper emotional connections with either, cheating on the former and breaking commitments with the latter. Mr L. entered therapy in an attempt to understand why he could not remain faithful to the people he loved. Free

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association returned him to the pain and confusion of his mother’s death. When Mr. L. verbalized his loss and grieved for his parent, despite the pain this caused him, he was able to able to begin to trust others and to establish mature adult relationships based on trust. The verbalization of his loss and grief was the beginning of Mr. L.’s healing process, as it permitted him to eliminate the psychological blockage from his unconscious (Doidge 2007: 229-237). I was left wondering if MS’s writing might have permitted a similar process. I recognize that it is easy to question how MS could have written in a style that would only be publicly recognized a century after her publication. However, MS was not alone. Diane Johnson alludes to the free associative nature of Edgar Allan Poe’s work in her essay “Dreams of Edgar Allan Poe”. She asks if it was not easier for Poe to write free associatively before Freud’s definition of the term, because, in this way, Poe did not need to fear that his work would be analyzed from this perspective. Hunter questions if Poe would have written so freely had he known that his work would be exposed to psychoanalytical criticism: Long before Sigmund Freud mapped the “swamps” of the human psyche, Edgar Allan Poe roamed there, his tales and fables are as oddly troubling as dreams. […] [Poe] gave us access to his own tormented unconscious with an openness possible only in pre-Freudian writers.” (Hunter 2009)

Like Poe’s work, MS’s Frankenstein was published in 1818, long before Freud’s publication of The Interpretation of Dreams, so she was not concerned with possible psychoanalytical readings of her work. In The Interpretation of Dreams (1997), Freud proposes that at least some literary texts can be interpreted as if they were dreams and therefore projections of their authors’ psyches (70-71). Based on the arguments presented, I think that it is possible to propose that writing Frankenstein offered MS a way to exorcise her demons, whether these were feelings of abandonment and confusion generated by an unforgiving and hypocritical parent’s reactions to her, or inspired by the treatment of a jealous stepmother or her own construction of herself as a mother-killing child, and child-killing mother. I believe that it is possible to suggest that creating Frankenstein permitted MS to explore the boundaries of her imagination, and write her way out of trauma.

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Works Cited Doidge, Norman 2007. The Brain That Changes Itself. London & New York: Penguin Books. Frayling, Christopher 1992. Vampyres: Lord Byron to Count Dracula. London: Faber & Faber. Freud, Sigmund 1997 [1900]. The Interpretation of Dreams. Trans. Abraham Brill. UK: Wordsworth Classics. Fromm, Erich 1955. “Remarks on the Problem of Free Association”, Psychiatric Research Reports 2. American Psychiatrics Association. Holland, Norman & Schwartz, Murray 2008. Know Thyself: Delphi Seminars. Florida: The PsyArt Foundation. —. 2006. Meeting Movies. Madison and Teaneck: Fairleigh Dickinson University Press, —. 1975. 5 Readers Reading. New Haven: Yale University Press. —. 1968. The Dynamics of Literary Response. New York: Columbia University Press. Hunter, Dianne 2009. “Dreams of Edgar Allan Poe”. Accessed [online] at www.america.gov/st/arts-english/2009/January/20090116161929 (24 February 2009). Lichtenstein, Heinz 1961. “Identity and Sexuality”: A Study of Their Interrelationship in Man”, Journal of American Psychoanalytic Association [9]: 179-260. Martins, Cecilia B. 2012. “Simple Stories: Alternative paradigms offered by cinema (and literature)”. Ph.D diss., Lisbon University. Seymour, Miranda 2000. Mary Shelley. London: John Murray Publishers. Shelley, Mary 1994 [1818]. Frankenstein or The Modern Prometheus. Berkshire: Penguin Popular Classics. Sunstein, Emily 1991. Mary Shelley: Romance and Reality. Baltimore: Johns Hopkins University Press.

PART IV ON PAIN AND SUFFERING

VARIATIONS IN SUFFERING ACCORDING TO DIFFERENT CONTEXTUAL PRESSURES LAMBROS COULOUBARITSIS Translated from French by Alison Kamm

The origins of suffering and its consequences Suffering is inextricably linked to life. If we had no perception of physical pain, we would be unable to react in the face of danger (we would let ourselves be burnt by fire without even realizing it), and if we had no experience of suffering, we would live in total indifference to the problems of others. I make a distinction (for reasons of convention) between physical pain, which can be controlled via techniques and pharmacology, and psychological suffering, which is more diffuse, and persists in time beyond occasional occurrences of pain. Suffering presents a more existential character, which stretches beyond the bounds of physical pain and control thereof. If we accept the premise that the opposite of pain is pleasure, we can go on to say that the opposite of suffering is joy, enchantment, delectation, euphoria, jubilation, celebration, etc. This distinction – as treated in my book La proximité et la question de la souffrance humaine (Proximity and the question of human suffering) (Couloubaritsis 2005) – is nevertheless only partial: we must add to it the question of moral suffering – more specifically linked to promise, selfesteem, resentment, guilt, and generally speaking to cultural traditions, religious convictions and human aspirations. The ambivalent connection between life and suffering can also explain the fact that suffering is perceived sometimes as an evil, or even a radical evil, and sometimes as a positive factor, when we suffer through effort and emulation (as in education, sports, leisure activities), pleasure and joy accompanying the suffering. But this can turn into a perverse relationship, as in the case of torture or harassment, where the unhealthy pleasure of hurting somebody else can become the dominant factor. Analysis of the two traditions that form the basis of our culture, the Judeo-Christian and the Hellenic traditions, shows that certain biblical

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myths deem suffering a consequence of evil, whereas certain Hellenic myths (which disappeared as of the 6th century of the current era), on the contrary, consider evil a consequence of suffering. In Genesis, it is because Eve and Adam disobeyed God that suffering forced its way into life. Christ’s ordeal on the cross was interpreted as a response to this evil and the suffering it brought about, through the redemption of this original sin. In contrast, in the Hesiodic myth of Gaia and Uranos, Gaia provided her son Chronos with a weapon with which to mutilate the father, because of the suffering his sexual insistence caused her, and because he was hiding some of her children from her. This set off a chain of violent events, which resulted in Zeus, along with his brothers and sisters, taking power over the entire Greco-Roman world. Concretely speaking, in the Judeo-Christian tradition that is still dominant, suffering is seen as a consequence of an original evil, which tradition transformed into an evil necessary to the establishment of a moral construct, namely the concept of salvation after death. This view places morality at its very root; it links suffering to a moral act and postulates its elimination through an equally moral act. Seen as innate, moral suffering thereby determines physical pain and psychological suffering. This perspective has an active influence upon our vision of things, such as, for instance, when we accept the fact that the powers that be engage in warfare in the name of the good they claim to detain, against an evil they denounce, without ever worrying about the suffering they cause. In my book on proximity and the question of human suffering, I defended the opposite thesis, closer to the Hellenic tradition, namely that suffering is the origin, while evil, more often than not, is the consequence. Observation of the course of things has led me to consider that physical pain and psychological suffering originate in the multiple pressures nature (cosmic, earthly and environmental laws), social life (family, education, profession, associative and political activity), cultural life (ideology, religion etc.) and politics exert upon man. A corporal action (physical violence, illness etc.) or an exterior event (accident, natural or technological catastrophe, war etc.) can produce physical pain accompanied or followed by a feeling of suffering, but words can also cause psychological injury and long term suffering. In the wake of such situations, I have upheld the idea that suffering should become the unit with which we measure our actions, to help us establish a new form of humanism. Thus, to go back to two extreme cases cited in the preceding examples: if, for instance, before starting a war, we were to envision the suffering it will necessarily cause, we would choose more pacific alleys to solve the problem; similarly, if before hurting someone with untimely words, we were to consider the pain

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we might cause them, we would be more cautious with our words (Couloubaritsis 2004, 2006a, b, c). To generalize this point, we might say that, as a reaction to the multiple pressures of nature and life that every human being so often experiences as oppression, but that can also turn into de-pression when things become too hard to manage, the person will try to express herself. The various means of ex-pression she finds are a response to the pressures that make her suffer. Thence the joy felt when expressing herself. That is to say how important it is to establish the conditions for reconstruction or, as we now say, with Boris Cyrulnik, resilience-conditions that can also be called the supports of resilience (Olié 2009; Couloubaritsis 2005). In this perspective, the very opposite of the mythico-religious dimension, the moral dimension of life, although it can affect the psyche at all levels, is manifest mainly at the highest level, beyond all physiological and psychological structures. That is to say that moral suffering does not always coincide with physical pain and psychological suffering, even if the latter can include it, as appears in an analysis such as, for instance, the Freudian superego. As we know, the superego has to do with the social taboos we interiorize from birth on, which act within the psyche without the subject being aware of it. Hence, it obeys a sort of unconscious ethical code resulting from the child’s dependency upon its parental, family and social environment, which produces both beliefs and suffering. However, beneath the level of the superego’s activity, Freud sketched the presence of a sort of constituent fund of the subject’s life, which I have taken the liberty of interpreting through the prism of the difference between cognitive memory and affective memory, which marks our life from the day we are born (Couloubaritsis 2005). Cognitive memory takes shape through our continuous intercourse with the world in its entirety, and more specifically, thanks to learning processes geared toward completion and full realization of what has been learned, even if efforts (and therefore a certain degree of suffering) are sometimes required and failure can occur. It forms the deepest part of our memory and a sort of fund through which we recognize all things that are inscribed in it, so to speak, on the neuronal level (Kandel 2007). Flexible and subject to permanent transformation (technically speaking, through neuro-plasticity) (Ansermet and Magistretti 2004; Couloubaritsis 2005: 206), it constitutes our own, individual world, which I call our proximal world. This is what determines our relationship with ourselves, others and the world such as we see it – the rest, the wider world, in ourselves, in others and within reality, stands at a distance, in a complex distal world which, although we

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constantly invest it, remains for ever almost entirely inaccessible. As for affective memory – not to be confused with emotional memory as described by neuroscientists, following their topology of the brain – this is subject to constant impulses and desires, is formed through our primordial relationships with our kin (caring others), with objects and with images, and is constructed through the processes of non-fulfilment and unlimited lacunae, that make up the unconscious mind. As such, it is invested with available, unused energy – which actually is used constantly by things that escape our grasp (to the detriment of other things necessary to life), manifesting diverted symptoms (attributed to neuroses and psychoses), which are a source of multiple forms of suffering. However, these psychological forms of suffering are not only of a sexual nature, in the wider sense of the term (as we assume with Freud), but are at work in our inter-human and other relationships, which often remain unrealized. They expand daily in an uncontrollable profusion, multiplying desires and frustrations. The peak of this profusion is to be found in the context of new technologies, and particularly the Internet, where virtual images run the gamut from the countless things one can learn about to sexual perversions and violent games. This irruption, which in the past was limited to the mytho-poetic world, is now spreading everywhere, into homes, via mytho-technics. It configures a virtual world that disturbs the psyche of the young and less young, if only because these innumerable images often remain at the stage of an ephemeral realization of unrequited desires. These images feed the psyche with a sort of imaginary “drug”, comparable to those physiological drugs that produce imaginary matter. If we associate the superego, whose founding structures are sometimes slow in catching up with this evolution, to this phenomenon, we can assume that this situation will, in the near future, become a major preoccupation for psychotherapy. Psychologists actually lack suitable methods to deal with this way of life, despite the over two hundred psychotherapeutic methods catalogued to this day (Cottraux 2004: 208). All the more so because the problems of psychological and of moral suffering are so intertwined. And with the diversity of people and cultures we all encounter in our daily lives, as well as the profusion of relationships with the objects and images teeming before us, the structure of the superego is constantly flooded and drowned in new phenomena, causing not only very extensive psychological suffering, but also, and especially, moral suffering. On the basis of these facts, it is clear that a finer analysis of suffering requires taking a look at at least two complementary sets of problems. The

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first one concerns the structure of suffering, whereas the second deals with the passage from physical suffering to moral suffering.

The structures and the development of suffering The structure of suffering implies three successive situations: (a) Singularity: the suffering is experienced in an irreducible and personal manner, in the form of immediate proximity. Insofar as it is singular and internalized, we have no grasp upon it, because only the suffering person feels his pain. It is in relation to this experience that we must establish a difference (for reasons of convention) between physical pain, which might, to a certain extent, be measurable, and psychological and moral suffering, which escape any form of reduction or grip. However, the suffering person does not live only with this immediate proximity, but tries to express his pain, reaching out to others seeking an answer, without which the weight of his suffering might stifle him. Thence a new structure that underlies this calling out to others and the expectation of adequate responses. (b) Diffusion toward others (partner, family, friends, hospital or professional milieu): this changes the perception of suffering. Each person, according to their type of relationship with the suffering subject, feels a form of pain, different from his or hers. Often, fearing suffering, the receiver encourages defiance, undermining relations between the suffering person and his environment. When a child says he is unwell and does not want to go to school, the parents’ reaction is often one of distrust, sometimes failing to evaluate the physical and psychological consequences of such a reaction. The sick child, when sincere, may then also feel a moral suffering due to this lack of trust. Here, relational closeness, implying kindness, trust and the furthering of self-esteem, is essential. These attitudes contain determining factors, necessary to ensure a response to suffering and a favorable terrain for achieving resilience. In this realm, physical pain caused by our contact with the environment, and psychological pain produced in the context of our affective relationships with others, are invested by moral considerations, not unrelated to the way in which we verbalize or judge suffering. Therefore, a third structure is needed, one in which the transfiguration of suffering can take place through speech and images.

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(c) The transfiguration of suffering through discourse, narration and images is at the heart of exchanges within a couple or a family, with close ones and friends, in the words of doctors and politicians, considerations of teachers, matters staged by the media, literary narration, myths, movies and television. To these discursive, narrative and visual modalities, we have to add the “profusional” mode of the Internet. Suffering can be used sometimes as a factor of miserabilism, by exploiting the suffering of others, and sometimes as an attempt to minimize, disfigure, trivialize, or even to hide (the suffering). Although the moral dimension is not absent from any one of these three structures of suffering (I can, for example, slap someone or express my anger verbally if I have been unjustly accused of something), it is mainly on the level of what is said, told, explained, and presented through images showing the suffering experienced by fellow men, whether close to us or at the other end of the planet, that moral suffering comes into consideration. When and how the passage from psychological suffering to moral suffering occurs is not simple to determine: sometimes the opposite happens. But in any case, moral suffering largely dominates the extremely vast subject of the transfiguration of suffering, especially when mutilation is involved, because those concerned necessarily feel an injustice. Everything leads us to believe that moral suffering is the source of the major problems of humanity. When human beings, who weave their social lives within variable cultural contexts according to location and civilization, are confronted with the dominant values in that particular context, any transgression that affects them and makes them suffer will lead to moral suffering. To illustrate this point, I have chosen a few particular cases, drawn from different contexts, among all those possible wherever pressure is exerted, provoking suffering that can be deemed moral. We are looking at the influence of culture, and especially education, family life and various forms of violence, from delinquency to war. I base my analysis upon the fact that, when we consider suffering in a concrete manner, moral suffering becomes clearly manifest. So much so that if we want to humanize relations between human beings, we have to accept the principle that suffering must become the measure of each person’s decisions and actions.

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Human cultures Ever since the archaic period, all societies have established a form of community, with a system of power and division of labor, founded on myths and rites that reveal an invisible realm peopled with gods (or God), demons, heroes (or saints), the souls of the dead, etc. This type of complex community, which the secularization of our societies and their democratization have not, so far, radically unsettled, was (and still is) constituted by internal associations (authorities, groups of warriors, seers, and other corporations) that require submission to rules, refusal to submit often leading to sanctions and even exclusion. Whether in the process of integration, with its rites of initiation and passage, or of sanction through decisions made by established authorities, community life, in the past, sometimes caused atrocious physical suffering and intense psychological suffering. Throughout the archaic world, the absence of an area of liberty made societies even more restrictive, creating a superego based on prohibition and an ideological horizon based on “identitary” proximity, which sustains the coherence of the group and its submission to the dominant ideology. In this context, any transgression is viewed as moral suffering. However, these sufferings are ambivalent, because although transgressing customs, rules and taboos is perceived by the transgressor as well as the judging group as moral suffering, the myths and rites are aimed at controlling this suffering by organizing, through celebrations and various other forms of expression, responses that are dominated by laughter and joy. Thus these societies invented mechanisms that provide a response to suffering through excesses of the very opposite. This ambivalence sheds light upon the complex intertwining of physical, psychological and moral suffering that varies according to the types of pressure exerted in different sociocultural contexts. Today, initiation, or education, is limited to actions affecting mainly the psyche. Contemporary democratic societies have reduced the practices they inherited to their simplest form, even if certain archaic rites, such as homework and exams, subsist in the field of education. I will return later to the case of homework (in my analysis of the family). As for exams, they make it possible to go on to the next level, but produce suffering along the way, not only because of the effort required to succeed, but especially because of the guilt felt in the event of failure. Although the physical violence of archaic initiation rites seems to have disappeared, such suffering does have severe psychological repercussions, which sometimes entail physical consequences (such as anxiety). These demands are also

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connected to ideological considerations that produce moral suffering. What I mean is that in the face of an ideology that promotes performance and the need for control, suffering is often hidden or underestimated. Not to speak of the crafty behavior it can promote, when pupils or students try to avoid suffering by cheating, the main problem concerns the principle of equality in the grading system, a principle betrayed from the very start because equal opportunity is actually so scarce. This is a source of failure and of psychological and moral suffering. Yet in our educational systems, the suffering endured by learners is rarely considered as an indicator of how lack of equal opportunity makes the teaching system dysfunctional. We prefer to put the blame of failure on the learner, to ease our conscience and avoid our own moral suffering, without realizing that the young person who was unable to face the difficulties encountered in his studies will suffer his entire life through. He or she will only be able to neutralize this suffering if she is successful elsewhere in life. But not everyone has that luck. How many succeed in developing resilience?

Family life The principle of male-female equality that rules our changing society has brought women the leisure, or the obligation, to work. Through work, they discover their freedom and autonomy, and find a dignity that was long denied to them, even if along the way they sometimes also discover the perversions linked to work (tiredness, conflict, harassment). The choice between marriage and companionship outside of a legal or religious consecration has modified the moral references attached to living together as a couple, including those concerning faithfulness. Indeed, with the pressures of work and tending to daily needs, life in a household often ends up reduced to managing the home and caring for the children, precluding real closeness between the partners, thereby endangering the love between them. Not only does the couple (more often than not the woman) have to perform the household chores after a long day’s work; she also has to deal with financial problems and follow the children’s progress at school. The burden of homework, a remnant of an old-fashioned educational system that fails to take into account the fact that the child has already been subjected to several hours on end of varied study, leaves the child insufficient time for healthy leisure periods. It makes it necessary for the parents to spend time on it too, putting an extra load on their psyche due to deferred desires. While making the child, in whom they have instilled the ideology of performance and success, feel guilty, the parents feel guilty

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themselves every time they do not perform their tasks satisfactorily. This moral suffering is shared by all members of the household and dominates daily life, adding to the psychological suffering, exacerbated by emotional deficiencies within the relationships (Vouche 2004). In the face of such precariousness, men and women actually spend more quality time on a daily basis outside their home, with colleagues and friends, than together as a couple, causing their relationships to be overwhelmed by other factors. Closeness in space and time, as well as the nature of relationships themselves, sometimes puts fidelity to the test and creates conflict within the couple, making new forms of proximity necessary to keep the suffering in check. Infidelity radicalizes the already present guilt feelings, further increasing the moral suffering. In the past, at least in theory, marital loyalty meant fidelity (Couloubaritsis 2009). Any infidelity destroyed mutual trust and was sanctioned. Often divorces were like a battlefield where the two sides confronted each other, magnifying their suffering. To what point confessing infidelity (telling the truth) is legitimate, considering the pain inflicted upon the betrayed partner, remains a difficult problem to deal with. The suffering caused by hurtful words has never been the subject of any study, because in our culture it is a common belief that physical violence hurts a person’s integrity much more, and causes greater damage. Yet the violence of words hides a fearsome weapon that can inflict severe psychological and moral suffering. Would lying therefore not sometimes be preferable to telling the truth, if we consider the suffering caused as the measure of our action? In the context of religions that condemn lying and consider it a sin, such a proposition can sound dissonant, and even hateful. But the question of whether promises of spending one’s entire life with a partner can last for ever remains. Moreover, if we were to make suffering the unit of measure, might we not find other, more pacific means to control strife, and when it cannot be overcome, to build new forms of loyalty? Present day social reality gives us a first possible answer, with the forming of reconstituted families, a radical change in our way of life. In such structures, conflictual mistrust is often neutralized and gives way to a new form of trust. Building new loyalty structures, outside of fidelity, is now a frequent way of preserving peace, especially when the couple has common children or interests. We establish a form of loyalty so as to preserve good relations, even if deep wounds subsist. In short, considering the suffering experienced in the absence of a close relationship (love), fidelity no longer seems an absolute prerequisite. The moral suffering due to unfaithfulness is becoming less marked, to the benefit of new forms of closeness that privilege respect of the other person and her choices. This means that “the

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appropriate time to meet someone” is no longer considered a onece in a lifetime chance; it is now seen as an opportunity that might arise again in better circumstances, resilience being possible and even necessary. This situation also provides an answer to the problem of asymmetrical love, as analysed by Plato in Phaedrus. When only one of the people involved in a relationship loves the other, that person can in time become the other partner’s object of desire, by giving everything and demanding almost nothing. To what point the exploiter feels any qualms, or a form of guilt followed by a form of moral suffering, is a problem that is difficult to analyze. It is easier to imagine that the victim may suffer, out of love, either physical violence (this does occur), or at least, because of the accumulation of unrequited feelings, pressures causing various psychological symptoms. But at the end of the day, it is the moral suffering felt through disillusion and guilt that affects the victim, at least until distance can be gained and a new relationship established, producing a form of resilience.

Aggressors and victims Whether we are talking about an act of aggression directed at an innocent person, or, at the other end of the spectrum, war, in which innumerable people (often innocent) undergo suffering, the relationship between aggressor and victim is a complex one. I shall begin with war and terrorism, then speak of the suffering of children hidden during the Second World War, and end with the pain suffered by victims of an act of aggression and prison inmates. In warfare, the various types of suffering depend upon the different forms war can take on. Thus, for example, the legitimacy, or lack thereof, of a war can cause moral suffering that can lead to civil disobedience, which also implies moral suffering, but of another order. In wars whose purpose is to defend the integrity of a territory, as in wars of religion or revolutionary struggles, the moral suffering has more to do with how the enemy is perceived, based on the idea of an injustice one considers oneself the victim of. The irruption of moral suffering and its crystallization often occurs in stages. The first stage is one of psychological preparation, in which resent is exploited and a better future through the triumph of an imposed ideology (Zionism, Communism, Islamization) promoted. Then, sympathizers are turned into activists, and at the final stage, the “good guys” (identitary closeness) are distinguished from the “bad guys” to be punished. That is how people are conditioned to accept physical pain and psychological suffering in the name of moral suffering.

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Present day wars, conducted at a distance (using massive bombing), are paradoxically more cruel than the wars of the past, because they spread invisible terror, injuring the psychological makeup (especially of children), leaving indelible traces and a feeling of injustice, because the enemy is invisible. In such contexts, physical and psychological suffering are insidiously submerged by moral suffering. Quite the opposite is true in the case of blind attacks, in which an isolated fighter sacrifices himself: here the moral suffering is more explicit. Indeed, in the face of an all-powerful enemy, the young fighter commits suicide because he is aware of his incapacity to fight his enemy with equal arms. This frustration increases his sense of the injustice he believes is inflicted upon his community, and with his action, he attempts to re-establish a form of justice. Often his religion, or the ideology he defends promises him immediate and eternal salvation – this helps him make the decision, in order to free himself from his suffering and to try to contribute, through his action, toward liberating the members of his community from their moral suffering. But in so doing, he forgets that his moral suffering sometimes leads to killing innocent people, whose loved ones then experience their own moral suffering, setting off an infernal cycle. These examples show the extent of moral suffering, often hidden, in the name of universal principles or specific national interests. The extent of the problem becomes clear especially when we singularize the suffering, taking into account not general considerations, but the individual suffering of the fighter, of his close ones and the community to which he belongs. A concrete example, taken from the experience of (Jewish) children who were in hiding during the Second World War, might help to better circumscribe the complexity of the problem. In a moving book, the psychologist Marcel Frydman tells of his own wartime experience, hidden in the village of Cul-des-Sarts, in the Belgian Hainaut region. Moral suffering is ever-present in his account (Frydman 2002: 70-71), because of the awful destiny he of which he partook simply because he was Jewish. I would like to quote the part of his story where he tells of his reunion, at the end of the war, with his mother, whom he met again but could not stay with, because she did not have the means to pay for his upkeep and schooling. Standing in the kitchen with a pot in his hands, he sees his mother come in. “What a shock! Overcome by emotion, I dropped the pot on the floor. It was the first time I saw my mother in more than two years! Two terrible years, made of suffering, pain and frustration. At that moment, I had the impression – necessarily illusory – that all this suffering would instantly become a thing of the past. Of course I didn’t know that we had no magic

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wand, nor any other means with which to erase, on the spot, the traumatic experience the hidden children had been through. Furthermore, at the beginning of 1945, the war was not yet over. I hadn’t yet realized the extent of the irreparable tragedy it had brought about, especially how extensive it was. We had not yet received any news concerning the deported. I didn’t know that I would never see my father again, nor my uncle, nor my aunt, nor so many others, exterminated in the Nazi camps…” One can also imagine the disappointment the child would have felt, having to go on living in isolation, until other ways are found for him to go back to a normal life, and to succeed in achieving a form of resilience. As he says himself: “in any case, those first three months of the year 1945 were spent waiting”.

In my aforementioned book, I strongly emphasized the suffering waiting causes. Waiting at a doctor’s office or hospital, in a station or an airport, in line at the post office, in an office in search of an important document or a job, at school or university before an exam, at a café for a date, or when insomnia has us waiting for dawn, etc., always produces a form of suffering. We can add, after the above, waiting to see one’s mother again. Usually, the suffering linked to waiting takes on a moral dimension, as, for example, in the case of a doctor who lets in a friend of his before me when I am in physical pain and am impatiently awaiting his diagnosis, or when I am expecting a letter concerning a job, unable to forget the injustice stringpulling brings to the job market. I could speak at length of such events, in which the suffering is contaminated by moral suffering. A last example, that of a prison inmate, accused of perpetrating an act of violence against an innocent victim, will suffice to attract our attention, and help us better discern the complexity of suffering, and the impact of moral suffering. The fact that someone can be the victim of an aggression they did not provoke is certainly revolting. But we also cannot deny the fact that, even if the aggressor bears a responsibility linked to his freedom of action, he may be under the influence of determining social factors due to conditions independent of his will, which enchain him and motivate his actions. As soon as human beings are caught in this infernal dialectic, they may find themselves in the midst of a nightmare at any moment, enduring numerous forms of suffering, and will fatally put themselves in a situation of isolation, imposed or voluntary. This is true as much for the victim as for the prisoner, the fugitive or the escapee. Certainly, the victim of an aggression, whether she be innocent or have any measure of responsibility in this event, may incur triple suffering (physical pain, and psychological as well as moral suffering). Moral suffering lasts on even beyond the physical pain and a certain grasp upon the psychological problems, not only because a trial can reawaken

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memories and call up indignation, but because incomprehension, injustice and guilt become imbedded in daily life, sometimes for an entire lifetime. No transformation of the suffering by the victim herself, and even less so by her family, the judiciary and medical system, or the media, can ever express the singular character of this suffering. The singularity of suffering specific to delinquency can even subvert the responsibility of the author of an aggression. What role the family and society play in the psychological making of a particular human being will always remain an open question. His attitude most probably derives from a social precariousness that makes him perceive his actions as moral suffering – which does not alleviate his responsibility. His guilt itself raises these questions, because it is connected to moral suffering. Understanding this situation lends us a more comprehensive, if not more indulgent, view of prisoners. As the philosopher Jacques Derrida would have said, the only thing that can really be forgiven is that which is unforgivable, because to forgive what is forgivable requires no effort. I would add that perhaps the most difficult thing to forgive is being accused of a wrongdoing one never committed, as in the case of judicial error. I would like to illustrate this point with a text written by a prisoner using the pseudonym of Annette, reproduced in a journal published by the Belgian Secular Service of Aid to Persons Subject to Trial and to Victims (Jonctions, no. 4): “If I were an innocent inmate (there are such cases), I would tear at the bars of my cell. I would bang myself against them like a lion in a cage. I would try to hang myself from them. I would violently rebel against all those responsible for the situation I would be put through. I would scream for the entire earth to hear. I would no longer trust human justice”. The violence of these words reflects an obvious and legitimate moral suffering that takes on a more incisive quality further on, when she invokes the possibility of resilience in very lucid terms, betraying the fact that moral suffering can never be eliminated. She herself admits that she would end up calming down and reflecting, that she would take the time to acquire some distance and to diminish her close ones’ pain, while finding a new angle on her story, and new hope that her innocence be recognized. “Despite everything, she says, I would be perfectly aware of the fact that some of the people who know me would always question that innocence. That it would have negative effects on my professional, social and family life. That this suffering would stay with me for the rest of my life, and that it would be very hard for me to forgive.

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The text is eloquent, and confirms the necessity to make human suffering the measure of decisions and actions. What follows is just as powerful, because it postulates the antithesis. “If I were guilty, I would recognize my errors, and I would not blame my family, my parents, society as a whole, my unhappy childhood and what not, to justify my wrongdoings. I would beg forgiveness from my victim, her entire family, all those she loves. I would try, by every possible means, to repair the evil I committed”. She immediately adds that she would take advantage of her stay in prison to straighten out, and to study so as to facilitate her reinsertion when she gets out of jail; that she would also try to help her co-detainees, would think about her family and suffer from the pain she caused them. Better yet, she would want to regain a sense of honour and dignity. And finally, she would accept to live in isolation, and if possible, to serve her sentence in a monastery.

These words clearly illustrate moral suffering and the hope for resilience, including in solitude and confinement, most probably an aspiration to connect with a transcendent power that might ensure ultimate forgiveness. But there is a third part to her presentation, describing life in prison and referring to forms of suffering beyond the mere fact of being locked away. The author asserts that she would also try to escape the promiscuity, the violence and other well-known phenomena linked to imprisonment. This reveals the complexity of the status of victims and aggressors, experienced as isolation by both sides: for the first, in daily life, where they are looked upon with harshness and burdened with painful memories, and for the others, in prison, where downfall and disgrace imprint themselves on the psyche, raising one of the most touchy problems democracies are faced with. Because if life in prison may seem more spectacular, in fact it reflects the lumping together of a variety of particular situations: moral suffering dominates life on a global level, through illness, poverty, prostitution, various forms of exclusion, exploitation or harassment at work, violence in homes, urban violence, wars etc. In all these situations, where solitude is a usual occurrence, physical and psychological suffering exist side by side, always infused with diffuse but intense moral suffering. Therefore, an analysis of suffering in all realms of life where it rises beyond an acceptable threshold shows that in all forms of human suffering, moral suffering plays a central role, and constitutes the basis for the necessary and sufficient conditions in which to develop a form of resilience. In this presentation, I hope to have given sufficient elements to point out that it is time to seriously take into account this dimension of

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human suffering, which constitutes the most important but also the least well-known plague ever since the origins of man. To conclude, I might say that we must become aware of the fact that suffering is not necessarily the consequence of an evil, but that it is in itself a radical evil, and that we must make it the measure of our actions, if we are to succeed in promoting human dignity. We also need to implement preventative policies bent on creating fruitful proximities, by modifying our relations with others, so as to alleviate their sufferings and ours, but also to promote means of expression that may lead to joy and well-being.

Works Cited Ansermet, François, and Pierre Magistretti 2004. A chacun son cerveau. Plasticité neuronale et inconscient. Paris: Odile Jacob. Couloubaritsis Lambros 2009. “Loyauté et fidélité”, Loyautés et familles, yapaka.be, Ministère de la Communauté française, Bruxelles, 2009: 519; L’œuvre du phénomène (Mélanges de philosophie offerts à Marc Richir). Eds. Pierre Kerszberg et al. Brussels: Ousia, 2009: 31-50. —. 2006a. “L’ambiguïté de la bienfaisance”, L’art de comprendre, 15, 2nd Series, 143-162. —. 2006b. “La philosophie face à la marchandisation du monde”, Le philosophe et le manager. Ed. Rodolphe de Boegrave. Brussels: De Boeck, 171-188. —. 2006c. “Le sens de la vie humaine à l’époque du développement technico-économique”, The phenomenon of life. Ed. H. Grammaticopoulou. Athens: National Research Foundation, 87-99. —. 2005. La proximité et la question de la souffrance humaine. Brussels: Ousia. op.cit., 222-273. —. 2004. “ Proximité et antagonisme”, L'Art de la Paix. Eds. Pierre Calame et al. Bruxelles-Berne-Berlin: P.I.E.-Peter Lang, 203-233. Cottraux, Jean 2004. Les visiteurs du soi. A quoi servent les psys ? Paris: Odile Jacob. Frydman, Marcel 2002. Le traumatisme de l’enfant caché. Répercussions psychologiques à court et à long terme (The trauma of the hidden child. Short and long term psychological repercussions). Paris: L’Harmattan. Kandel, Eric 2007. A la recherche de la mémoire. Une nouvelle théorie de l’esprit. Paris: Odile Jacob. Olié, Jean-Pierre 2009. Guérir la souffrance psychique. Paris: Odile Jacob. Vouche, Jean-Pierre 2009. De l’emprise à la résilience. Paris: Fabert.

AFFECTING THE BODY AND TRANSFORMING DESIRE: THE TREATMENT OF SUFFERING AS THE END OF MEDICINE1 HILLEL D. BRAUDE

The Hippocratic Oath formulates the ethical principle of medical beneficence and its negative formulation, non-maleficence. It relates medical ethics to the traditional end of medicine, that is, to heal, or to make whole. First and foremost, the duty of the physician is to heal, and if this is not possible, at least not to harm. This ethical principle helped to establish the necessary trust between physician and patient in the pre-modern era when most of medicine was nothing more than a set of placebos (Shapiro 1960). Beginning in the seventeenth century, western biomedicine finally succeeded in developing a modern critical science through its foundations in scientific induction and anatomopathologic correlation (King 1970, 1976, 1978). However, one consequence of modern medicine’s success in diagnosing and treating acute illness has been the shift away from healing to curing as the end of medicine. Another consequence has been to demonstrate the limits of medical science, particularly in relation to chronic illness. In particular, the development of powerful pain medications has been associated with the phenomenon of chronic pain resistant to any and every analgesic (Morris 1991). The limits of cures have drawn attention again to the role of the physician as healer, to the question of suffering and the subjective meaning of the illness experience. The traditional role of medicine is now often said to include the treatment of suffering. Indeed, some argue that the alleviation of suffering 1

Braude, Hillel D. “Affecting the Body and Transforming Desire: The Treatment of Suffering as the End of Medicine.” Philosophy, Psychiatry & Psychology 19:4 (2012), 265-278. © 2013 The Johns Hopkins University Press. Reprinted with permission of Johns Hopkins University Press.

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is medicine’s main end and provides ethical justification for physician assisted suicide and euthanasia.2 Particularly in palliative medicine, the imperative to cure is replaced by the imperative to relieve suffering. Dame Cecily Saunders, the founder of the modern hospice movement, observed that the moment at which modern medicine states that ‘nothing more is to be done’ is the point at which an emergent medicine of terminal care begins (quoted in Clark 1999: 733). Central to this is a multifaceted understanding of pain that is also concerned with its meaning. Dame Saunders’ concept of ‘total pain’ refers to the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles (Clark 1999; Saunders 1966). Advocating the treatment of suffering has now become normative in the fields of oncology and palliative care. For example, at a recent meeting of the American Society of Clinical Oncology, the convenor of a panel on ethics, Alan Astrow, noted that “The professional requirement for the physician is to be fully present to suffering humanity in all its variety” (2009: 185). It seems unobjectionable to say that doctors should be involved in alleviating patient suffering. Yet, should suffering be part of a medical gaze? Is suffering a medical entity like pain that it requires medical diagnosis and treatment? As a primarily subjective or existential phenomenon, can suffering become an object of medical scrutiny? Does not the extension of the role of the doctor to alleviate suffering overextend medicine into an anatomy of power that helps construct subjective identity?3 Is not suffering more properly the terrain of the priest, the psychotherapist, or the philosopher, rather than the scientifically trained physician skilled in objective physical examination and treatment? However, if suffering is an extension of pain and pain is clearly within the ontological realm of medicine, then why should doctors not treat suffering? Or, if the role of medicine is again to make whole, then is not the imperative to treat suffering the primordial ethical imperative in medicine? In this paper, I analyze the question of suffering as a clinical entity through a critical re-examination of physician and medical humanist Eric Cassell’s classic study, The Nature of Suffering. Cassell’s theory of suffering was first outlined in an influential article appearing in 1982 and further developed in a book-length study bearing the same title. Cassell is notable for having drawn attention to suffering as a clinical entity and for beginning to develop a clinical lexicon of suffering. However, the ethical 2

See for example Quill, Lo, and Brock (2008) and Miller and Fletcher (1993). This argument has been most strongly developed by medical historian Michel Foucault (1973).

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issues around suffering are still very much open for clinical and philosophical assessment. Since the publication of The Nature of Suffering (1991), a handful of philosophical papers have elucidated the issue of suffering in the clinical encounter.4 Suffering does, however, receive primary attention in the developing field of narrative medicine (Charon 2001). Narrativity speaks to suffering as an existential issue and relates particularly to the phenomenon of the transcendence of suffering. It has been argued from the narrative perspective that focusing on nociceptors by physicians has led physicians to separate their professional responses to patient suffering from their personal beliefs about and experiences of suffering. However, I argue that we should also be wary of a precipitous move away from the material to the transcendent. Research on the neurobiological mechanisms of pain and what has now come to be called “maldynia”, that is, “the illness of pain as suffering” (Giordano 2008: 6), may contribute toward a greater understanding of suffering, including its transcendence. Important recent theoretical insights into the neurobiology of pain present the opportunity to review Cassell’s theory of suffering and to rethink the relationship between pain and suffering in the clinical context. Because suffering necessarily involves issues of subjectivity, it is impossible to reflect on suffering as a purely neurobiological phenomenon. Similarly, it is not possible to have a purely empirical and therefore absolutely atheoretical approach to pain. In this paper, I draw on both the neurobiology of pain and philosophical ideas about suffering to critique Eric Cassell’s theory of suffering. Literature on the neurobiology of placebos and pain provides a useful tool with which to navigate through the philosophical problems with the direct treatment of suffering as a medical phenomenon. Philosophical reflection is also necessary. As other commentators have noted, patient suffering as a firstperson experience requires phenomenological and hermeneutic strategies to be made intelligible to others (Leder 1990; Svenaeus 2000). Although endorsing this phenomenological/hermeneutic approach, I am hesitant to claim that suffering can or should be fully understood by the pain physician. More work needs to be done both in terms of the neurobiology of pain and philosophical reflection on the nature of suffering before assuming that physicians can treat suffering as a medical object. This analysis of the pain-suffering relationship provides one such attempt by drawing on different reflections on suffering and subjectivity in medicine by two phenomenological philosophers, Karl Jaspers and Emmanuel Levinas. Jaspers provides an immanent ontological critique of the 4

See, for example, Van Hooft (1998), Sulmasy (1999), and Edwards (2003).

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medicalization of subjectivity, and Levinas provides a critique of suffering as transcendent to cognitive conceptualization. This analysis reopens the question of whether suffering is indeed the primary end of medicine. Interrogatively rephrasing the statement of the physician Eryximachus in his medical discourse on love in Plato’s Symposium: “Is it indeed the mark of a good practitioner to know how to affect the body and how to transform its desires?”5

Eric Cassell: The Nature of Suffering In the Nature of Suffering and other related writings,6 Cassell argues that suffering occurs primarily in relation to persons as opposed to bodies. This distinction relies on the well-known differentiation between disease and illness. Whereas disease as a descriptive term that refers to a set of biological criteria, illness is the subjective and therefore normative experience of a disease condition (Cassell 1991: 20). Cassell defines suffering as the “state of severe distress associated with events that threaten the intactness of the person” (1991: 33). It arises “when an impending destruction of the person is perceived,” and “continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner” (ibid). There are a number of important elements associated with this clinical theory of suffering. These include the relationship of pain and suffering, temporality and language.

The Relationship of Pain and Suffering Cassell makes a clear distinction between suffering and pain. He considers pain to be a bodily symptom, similar to other physical symptoms of illness, such as shortness of breath. Suffering, on the other hand, is characterized by carrying subjective meaning. Pain is probably the most significant bodily symptom, but a symptom nonetheless. To this effect, Cassell claims that the pain stimulus elicits a sensory response that becomes part of a person’s experience and thereby becomes available for the assignation of meaning. While pain challenges a person’s selfintegrity, it is contained within the framework of symptoms so long as a person continues to function “as a social entity” and “maintains central purpose” (Cassell 2001: 385). However, suffering arises as soon as the integrity or intactness of the person threatens to predominate. As Cassell 5 6

Plato’s Symposium, 186D. See, for example, Cassell (2001).

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notes, “with the onset of suffering, the locus of injury has become internal to the person” (386). Beyond pain, suffering needs to be addressed as a medical entity in and of itself. Proof of the distinction between pain and suffering is provided by the fact that pain may remain intractable unless suffering itself becomes the treatment focus (Cassell 1991: 36; 2001: 388). Cassell has been criticized for repeating the error of dualism by differentiating between pain and suffering (Van Hooft 1998). However, this criticism is not completely accurate. Although Cassell does indeed distinguish between pain and suffering, he also develops the notion that suffering may be an extension of the experience of pain – especially because pain, like suffering, possesses a subjective element. Thus, Cassell differentiates between the activation of nociceptors, providing the necessary biological basis for the perception of pain, and pain itself, which arises from ascribing meaning to this perception. Pain, like suffering, is both biological and subjective. Suffering occurs, not just from subjective experience, which is also associated with pain, but when the person’s sense of self threatens to be overwhelmed by the perception and cognitive reflection of pain. Cassell’s theory of pain obviously draws much from the influential ‘Gate Controlled Theory of Pain’ posited by Patrick Wall and Ron Melzack (Fields 2004; Melzack and Wall 1965). In broad outline, this theory claims that the periaqueductal gray area in the brain exerts control over spinal pain pathways, and that higher cortical function plays an important role in the perception of pain. Although the original details of the Gate Controlled Theory have either been discredited or enhanced, the influence of higher cortical control on ascending sensory pathways remains an important field of investigation in pain research (Fields 2008). Brain regions including the limbic system (the cingulate and prefrontal cortex, the medial temporal lobe and amygdala, and the hypothalamus) have neural connections to other brainstem structures that descend along the spinothalamic tracts and control input received from primary afferents responding to noxious stimuli (Fields and Price 1997). Following on from the Gate Controlled Theory, the International Association for the Study of Pain (1979: 249) defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”. Moreover, pain is always subjective because each individual learns the meaning of pain through personal experiences in the early stages of development. As a subjectively mediated neurobiological phenomenon, pain may be mediated either through interference with the neural pathways of pain, for example through taking an analgesic like paracetamol, or else through changes in awareness and

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expectancy that influence the perception of pain or change the meaning of a painful experience. This second level of pain mediation is associated with the doctorpatient relationship. Hence, Cassell observes that a patient’s pain often disappears after a doctor’s reassurance owing to the bodily effects that expectations and conditioning have (1991: 70-1). Those familiar with the psychological literature on conditioning and expectancy will know that these are the two predominant explanations for the placebo effect (Stewart-Williams and Podd 2004). In other words, expectancy theory claims that placebo effects are mediated by explicit expectancies that are consciously accessible (Kirsch 1991), whereas the conditioning theory claims that placebos are conditioned responses (Ader 1997). Thus, it seems that the impact of the doctor-patient relationship on managing patient expectancies of pain and suffering is analogous to the mechanism underlying clinical placebos. Although the science of the placebo is primarily concerned with implications for clinical research, the placebo effect refers to the essential healing role of the physician. The ethical role of the physician as beneficent healer crystallizes at the level of the placebo. Or as Cassell states, The physician is the treatment:7 The relationship between physician and patient is a phenomenon as much a part of sickness and medicine as the diseases that make people sick. It makes a sick person into a patient and it makes a medical person into a doctor and a clinician […]. One of the skills in the art of great clinicians lies in coming as close as ethically possible to intimacy–for the access to the patient that it provides–while maintaining independence of action. [Italics mine.] Therein lies the capacity for maximum therapeutic power in the patient’s behalf. (1991: 79)

The deeper the physician delves into the subjective recesses of patient (un)consciousness, the greater the capacity for therapeutic power. Similarly, the more patient intimacy is exposed, the greater the personal vulnerability and concomitant ethical responsibility not to harm. Suffering might seem to be the deep end of a subjective experience of pain. Yet, the subjective dimension of pain means that the simplistic dichotomy between pain and suffering does not hold.

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Psychoanalyst Michael Balint (1972) makes a similar point in his The Doctor, His Patient, and the Illness.

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Temporality The second key dimension of suffering in relation to pain is temporality. As Cassell notes, “the entire process must be seen as occurring in little droplets of complex experience strung along a thread of time that may occupy minutes or years” (1991: 106). Whereas pain refers primarily to the present moment – “This feeling of pain will never end” – suffering refers mainly to the future tense – “If the pain continues like this, I will be overwhelmed”; “If the pain comes from cancer, I will die”; “If the pain cannot be controlled, I will not be able to take it” (36). The self maintains itself in the face of pain that imposes itself in the present as a threat to future personhood. Other than observing the importance of time for a theory of suffering, Cassell does not offer any significant theoretical reflections on the structure and significance of temporality. An insightful phenomenological analysis of time in relation to illness is, however, provided by another philosopher of medicine, S. Kay Toombs, who herself suffers from multiple sclerosis. Comparing Toombs’s and Cassell’s conceptions of temporality and illness is useful for illustrating Cassell’s theory of suffering. Drawing on concepts in Jean Paul Sartre’s Being and Nothingness, Toombs distinguishes four different constituting levels of pain and illness moving along a trajectory from pure subjectivity, that is: (i) pre-reflective sensory experiencing; (ii) suffered illness; (iii) disease, and (iv) the disease state (Toombs 1990; Sartre 1956). ‘Pre-reflective sensory experience’ is the most fundamental level of illness constitution. At this level consciousness “exists the body”, because, in its incipient state, a feeling of pain is not yet experienced as an object (Toombs 1990: 230). Upon reflection, this pain becomes a psychic object and is then recognized as belonging to a particular site, for example, pain in the stomach. This level of ‘suffered illness’ transcends the pure quality of lived pain, but is not yet a cognitive relation. Illness is not yet conceived as a cause of the pain. Quoting Sartre, at this level “each concrete pain is like a note in a melody: it is at once the whole melody and a ‘moment’ in the melody” (Sartre 1956: 231, 442). At a further level of reflection, illness becomes constituted as ‘disease’. At this level, the subjective experience of illness begins to take on the shape and forms of third-person experience. Illness is now recognized as an objective medical condition, such as a stomach ulcer. Yet the information is derived from one’s personal life experience. Finally, the level of the ‘disease state’ refers to the physician’s conceptualization of disease, corresponding with a pathophysiological diagnosis. For example, a suspected stomach ulcer will be confirmed and staged after a medical gastroscopy.

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Toombs relates these four levels of illness constitution to different levels of temporality delineated according to founder of modern phenomenology Edmund Husserl’s phenomenological analysis of time. Husserl distinguished between lived time and inner time, expressed in terms of protention and retention, and mechanical time, measured by chronometrical instruments. Pain at the level of pre-reflective sensory experience becomes constituted as a temporal object through the synthesizing activity of innertime consciousness, and is, therefore, experienced as an enduring present (Toombs 1990: 231). Suffered illness experienced in its immediacy is also constituted in inner time. Yet, in being expressed through language, it is already beginning to be open to recall through retentional consciousness and future anticipation in protention (233). At the level of ‘disease’, illness experience is now transcendent to subjectivity. Illness is recalled as a past experience and described in terms of outer time, yet still refers to a personal event. Finally, a ‘disease state’ is constituted wholly in terms of an objective time scale, and does not have any inherent connection with an individual’s experience (236). Comparing Cassell’s theory of clinical suffering with Toombs’s phenomenological analysis of illness experience, it can be seen that Cassell’s conception of suffering possesses elements of Toombs’s intermediate two levels of constituting illness, that is, ‘suffered illness’ and ‘disease’. Pain, which Cassell clearly distinguishes from suffering, relates to the foundational level of ‘pre-reflective sensory experience’. Suffering corresponds with ‘suffered illness’ in referring to a patient’s subjective experience of pain as a vague threat, yet it also incorporates a cognitive relationship that does not yet pertain to this level. For this reason, Cassell’s theory of suffering is closest to what Toombs calls ‘disease’. Both Cassell’s theory of suffering and Toombs’s ‘disease’ refer primarily to the future anticipation of self-annihilation. This third constituting level of illness draws on both inner and outer dimensions of time. As such, suffering is both “subjective” and “objective”. This binary nature of suffering in Cassell is also clear from the role of language in giving meaning to suffering.

Language Whereas pain notoriously struggles to find explicit language, suffering as developing in the sphere of symbolic meaning is characterized by language. Indeed, for Cassell, one kind of suffering exists when a person’s

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pain is not adequately recognized as a clinical entity, and the person becomes increasingly alienated from self and society (Cassell 1991: 36-7). As emphasized in this analysis, Cassell’s theory of suffering adheres primarily to the two intermediate states of illness constitution, namely, ‘suffered illness’ and ‘disease’ or subjective illness experience. Language operates in terms of personal meaning in both states. Possessing elements of third person experience, ‘disease’ is easier to translate into language than ‘suffered illness’, in which case suffering has not yet reached the level of explicit language. Not yet possessing a cognitive relation, suffering at this level of illness constitution is primarily affective.8 However, although this experience of suffering resists language, it does not evade nonverbal expression completely; indeed, it is the level of ‘suffered illness’ that provides the most clues about patients’ subjective experience of suffering. In another text describing the language of clinical interaction, Talking With Patients, Cassell provides an analysis of nonverbal and not necessarily conscious aspects of language in clinical interaction that are consonant with the noncognitive affective dimension of ‘suffered illness’. Here Cassell describes the most important kind of nonverbal communication as ‘paralanguage’, or the music of language, that is, those “nonword phenomena, such as pause, pitch, speech rate, and intonation, that tell us so much of what someone wants to say” (Cassell 1985: 10). Although paralanguage generally refers to all nonverbal symbolic communication, including gestures and facial expressions, its meaning in the clinical context is limited to the non-word features of spoken language, namely: (1) pitch; (2) stress; (3) intonation; (4) pause; (5) speech rate; (6) volume; (7) accent, and (8) voice quality (Cassell 1985: 13). Cassell cites numerous examples from his own clinical experience where changes in paralanguage are vital clues for understanding the subjective experience of his patients struggling to come to terms with the meaning of their disease. Through close listening to patients and observation of personal affect, an astute empathetic clinician may be able to understand the nature of patient suffering and respond appropriately (Braude 2011; Henry 2006). Despite suffering referring to the subjective experience of illness, the fact that it is characterized by discursiveness means that it can be objectively studied as a scientific fact and, more importantly, that a methodology can be taught, and that suffering can be treated. Thus, for Cassell, the meaning of patients’ words is as objective a fact to be determined as the taking of a temperature by a thermometer (Cassell 1991: 183). “While the patient’s 8

The precise relationship between effect and cognition is actively contested in neuropsychology. For example, see Leventhal and Scherer (1987), Lazarus (1982), and Zajonc (2000).

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feeling of feverishness is irreducibly subjective, the patient’s report of the symptom is objective; it is something that is part of shared reality and can be examined” (184).

The Transcendence of Suffering In summary, Cassell conceives suffering to arise from the threat to the self of a symptom, primarily pain. It is characterized temporally through the potential annihilation of the future self. Suffering participates in language and can be objectively measured as a report. However, suffering is paradoxical in the sense that that which threatens meaning is characterized by being meaningful. It is this possibility of meaning that establishes the possibility of transcendence, whereby one is restored to wholeness even in the face of the inability for cure, or even death. Here the alienation of pain no longer has any effect, because the level of reflection now moves to a “transpersonal source of meaning” (Cassell 1991: 45). This understanding of suffering is closest to religious categories, and indeed palliative literature increasingly speaks in terms of suffering and spirituality, if not in terms of institutionalized religions. A source of inspiration for the palliative care movement is psychoanalyst Victor Frankl, whose theory of meaning and suffering was developed through his personal lived history as a concentration camp inmate at Auschwitz and Dachau. In his “Man’s Search for Meaning”, written in a burst of creativity after his liberation, Frankl wrote that “Man is not destroyed by suffering, he is destroyed by suffering without meaning” (Frankl 1984). The end of medicine of healing, or making whole, is synonymous with the transcendence of suffering. Healing can occur even when there is no longer hope of a cure.9

Is There an Ethical Imperative to Treat Suffering? This review of Cassell’s theory of suffering provides a strong argument for the treatment of suffering to be considered as the primary, if not primordial, end of medicine. Yet, this conflation of an ethical and medical imperative through a theory of medical subjectivity deserves to be questioned further. This is achieved by turning to two very different philosophical perspectives on suffering in medicine, namely those of Karl Jaspers and Emmanuel Levinas.

9

Cassell (1991, 237–50) describes this kind of transcendence of suffering in the Epilogue chapter of The Nature of Suffering.

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Cassell’s emphasis on suffering attempts to return to a medicine of healing, without sacrificing its scientific basis. The reductionism of the objective disease state is transcended through interaction with the larger whole of subjective illness experience. Although not espousing a fullblown psychosomatic theory of medicine, Cassell’s theory of subjective suffering merits comparison with Viktor von Weizsäcker’s model of psychosomatic medicine, which similarly attempts to introduce subjectivity into the heart of clinical reasoning, and more particularly, its critique by existentialist philosopher Karl Jaspers.10 Thus, as quoted by Jaspers in an essay on the doctor–patient relationship, von Weizsäcker claimed that “the meaning of disease is to lead the afflicted to the meaning of his life”. Similarly, “every organic process such as inflammation, hypertension, loss of weight, edema, must be understood as a symbol, not as a function”. The task of the psychosomatic physician is to help decipher “organic language” into “words which the soul can understand” (Jaspers 1963: 169-70). This hermeneutic function is associated with von Weizsäcker’s notion of the Gestaltkreis, namely, the ongoing circular interplay of perception and movement that occurs at different levels of psychosomatic integration. The physician’s management of the Gestaltkreis enables the patient to become a harmonious self through the healthy interchange between self and world, self and other (Gadamer 1996; Hilt 2009). Even though Cassell espouses the methodology of Western “allopathic” medicine, his incorporation of subjective experience into the medical domain shares similarities with von Weizsäcker’s theory of psychosomatic medicine, and is therefore open to the same critique. Commenting negatively on von Weizsäcker, Karl Jaspers astutely observed that medical science does not in any way turn diseases into subjective entities (1963: 175). Rather, the backdrop of entirety against which particular things and relationships are dealt with serves as a “warning sign” from absolutizing any object. The notorious variability of individuals in medicine prevents the objectification of subjectivity. To objectivize an individual “as a whole is the very way to miss him” (176). It is true that the whole of man does not become an object. But it is false, if something defies objectivation, to try and make it the object of a new science, anyway. It is true that the subject–or, better, the personality of both physician and patient–is essential to the humane medical action that should be philosophically illuminated. But it is false–or impossible, rather– 10 Von Weizsäcker is a controversial figure, not because of his theory of psychosomatic medicine, but because of his alleged ties with Nazi medicine. See, for example, Harrington (1996).

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to make of this reality an object of research and a scientifically knowable factor of scientifically based medical action. (179)

Although the alleviation of suffering justifiably lies at the heart of the clinical encounter, Von Weizsäcker, and by analogy Cassell, errs by attempting to replace objective medicine with subjective categories. In interpreting the whole through the part, the physician threatens to impose a medical structure on a larger entity. Jaspers provides a purely ontological critique of suffering in medicine. Another critique of suffering, transcendent to medical ontology, is provided by Emmanuel Levinas. In an essay entitled “Useless Suffering”, Levinas argues that suffering is cognitively unassumable, and therefore “useless”. However, suffering that is intrinsically meaningless, through its expressed call for its alleviation does establish the possibility of intersubjectivity. Thus, medical technology arises from the original call to relieve suffering, where the “the primordial, irreducible, and ethical, anthropological category of the medical comes to impose itself” (Levinas 1988: 158). However, this ethical imperative to respond to the suffering of another with the techné of medicine does not mean that the physician should presume to understand suffering. As another Levinas scholar, Adi Ophir, claims, “The sufferer’s suffering is always merely an excitation that can be represented, identified with, interpreted and understood, imagined more or less tangibly, but never presenced “in itself,” that is, as it is for an other” (2005: §6.031). The physician primarily responds to suffering through trying to address its causes, and not its reasons (§6.052). Similarly, one is hard pressed to give strong arguments as to why suffering is intrinsically evil, a presupposition upon which the prima facie imperative to relieve suffering rests (Mayerfeld 1999). It is precisely because suffering is “useless” that we have an obligation to alleviate it, and that we attempt to imbue suffering with meaning. The subject’s emergence into language is not a tragedy, but “a gift of the other”, of community (Schweitzer 2000: 233). However, the move, through language, from a pre-reflective experience of pain to suffering does not obviate the essential evasion of conscious reflection at the heart of the suffering experience. This is not reducible to a medical discourse, however well intended. Although Levinas talks about suffering in terms of the transcendence of subjectivity through an intersubjective call to alleviate it, like Jaspers, his notion of suffering does not allow it to be ultimately contained within a medical grasp. Returning to Cassell, it can be seen then that his moral intuition that suffering, like pain, does need to be responded to is correct. However, he errs in treating clinical suffering as an objective entity that can be

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measured, and treated analogous to an objective symptom of disease. This objectification occurs even while shifting from the empirical treatment of pain to a medical hermeneutics of suffering. Yet, Cassell’s error is not absolute. Recall that Cassell’s definition of suffering fitted into the two intermediate constitutive categories of illness described by S. Kay Toombs, ‘suffering illness’ and the subjective experience of ‘disease’. Although Cassell claims that subjectivity can be measured, by this he really only refers to the report of suffering, which is always part of abstract communication, and not the experience of suffering itself, the “thing-initself”, whose sensorial content exceeds measurement. It is true that ‘suffered illness’ is temporally closer than ‘disease’ to the truly subjective realm of pre-reflective sensory experiencing, yet it is already moving away from ‘pre-reflective sensory experience’ toward the realm of external time and verbal communication. The truly subjective element within suffering can never become part of explicit cognition or language, and is always preverbal. Arguably, this embodied affective base of suffering can never and should never ultimately become an object, medical or otherwise.

The Neurobiology of Pain and Placebos If Cassell’s theory of suffering pertains to the objective spectrum of the subjective constitution of illness, then pain, a symptom of tissue damage arising from a more primordial stratum of subjective experience, associated purely with inner time, should be less an object of medical objectification than suffering. Pain, at least according to Cassell’s definition of the latter, presents a greater philosophical problem than suffering. This is because pain is not the object of perceptual experience, but is rather the experience itself (Muryat 2001; Price and Aydede 2006: 246). Pain adheres to the constituting level of illness of ‘preverbal sensory experience’. If it is a philosophical problem to treat suffering, then it should a fortiori be an even bigger problem to treat pain! Yet, to say that physicians should not be treating pain is incontestably absurd. Doctors alleviate suffering by responding to medical symptoms, such as pain and shortness of breath, with physical interventions that act directly on perceptual experience. Doctors also intervene directly on cognitive and affective cerebral pathways for pain through administering medical placebos. Since Levine and associates’ work in 1978 demonstrating that placebo analgesia could be blocked by the opioid antagonist naloxone, the response of placebos to pain has been demonstrated to be particularly robust. The last few decades of research on the neurobiology of pain and placebos, upon which Cassell’s theory of suffering relies, provides an important means of

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navigating the apparent paradox whereby the treatment of pain seems to be more philosophically problematic than the treatment of suffering. As mentioned, the two predominant explanatory theories of placebos are in terms of conditioning and expectancy. Benedetti and co-workers have (2003) demonstrated that conscious physiological pain is malleable in response to the management of expectancy. On the other hand, conditioning may be effective regarding unconscious physiological processes. Placebos have been conceived as a cerebral internalization of the psychosocial context around patient–doctor interaction that contributes to the healing process (Adler and Van Buren 1973; Panksepp 2006). Besides pain, the use of placebos in clinical medicine is seen to be effective in the treatment of Parkinson’s disease (Benedetti et al. 2004) and psycho-neuroimmunology (Pacheco-Lopez et al. 2006). Analyzing the doctor–patient relationship in terms of placebos objectifies the healing encounter in purely medical terms. This process is similar to the objectification of suffering as a medical phenomenon. Indeed, through intervening on the cognitive and affective components of pain, placebos can be understood to be the medical corollary of suffering. Placebos provide the antidote to suffering! If the neural pathways for suffering and placebos are the same, then empirical data on the neurobiology of pain and placebos should be equally helpful in offering important material for philosophical reflection about suffering as a clinical entity. Conditioning and expectancy do not, however, exhaust the causal explanations for placebo responses. Indeed, there is no single theory of the use of placebos that can completely explain their positive and negative effects (Kaptchuk et al. 2009). Oron Frenkel (2008) has opened up a productive phenomenological path to explain placebo responses by arguing, following Merleau-Ponty, for the existence of bodily intentionality that does not require any conceptual or linguistic content. According to this phenomenology of the body, the bodily experience behind placebo responses occurs before conscious thought, but is also part of conscious thought. Research on pain and placebos is beginning to shift away from emphasis on cognitive expectancy to somatic attention (Geers et al. 2006; Kerr et al. 2007) and affect (Price 2000), paralleling a shift in cognitive psychology more generally. Neuroimaging studies of placebo responses have demonstrated arousal of the anterior cingulate region of the brain (Mayberg et al. 2002), an area associated with feelings of pain, emotional distress (Foltz and White 1962; Hurt and Ballantine 1974) and empathy (Singer et al. 2004). Pain researcher Donald Price (2000) argues that the anterior cingulate cortex may coordinate somatosensory features of pain with prefrontal cerebral mechanisms involved in attaching

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significance and long-term implications to pain. The anterior cingulate cortex is crucial in the construction of ‘secondary pain effect’, the feelings of unpleasantness and emotions associated with the experience of pain. Put very simplistically, ‘primary pain’ and ‘secondary pain effect’ correspond, respectively, to the activation of nociceptive pathways originating from the spinal cord and the activation of somatosensory cortices involved in perceptual and cognitive aspects of brain processing. Suffering according to this neurobiological pathway would be a specific type of ‘secondary pain effect’. Indeed, extending a similar line of reasoning, Paul Moskovitz (2006; 2010) localizes suffering to neural connections between the anterior cingulate gyrus, the ventromedial prefrontal cortex, and limbic system. Breaking down pain and suffering into these neurobiological pathways confirms that doctors can act at both these pathways to help relieve pain. This insight is central to the recent formulation of maldynia by those who attempt to comprehend pain as a dysfunction of the nervous system and treat the suffering patient as a whole person (Giordano 2008). The pain component itself possesses subjective elements and is closer to the perceptual core of self than is suffering. Recognizing the importance of the secondary pain effect means that affective interventions do become part of the physician’s mandate. Indeed, they always have been, but are only now being exposed to scientific investigation. Nociceptive pathways can be acted upon via the use of analgesics. Secondary pain effects may be managed through the active ingredient of placebos, perhaps nothing more than an empathetic doctor–patient relationship. Clinical empathy, as Jodi Halpern (2003) argues, is an important affective mode of understanding that physicians may use to become emotionally attuned to their patients. Similarly, James Giordano argues that the “pain practitioner” “must not only possess the knowledge and skill necessary to scientifically know about pain, but must also possess the sensitivity, empathy and determination to know how pain affects each patient” (2008: 280). However, although there is no reason why the ethical imperative to relieve pain should not extend to both kinds of pain pathways, it is an error for doctors to assume that they really understand the subjective experience of pain or suffering “as it is in itself”. Mapping the neural correlates of pain, from pre-reflective sensory experience of pain to secondary effect, still does not mean that the first-person experience of pain and suffering can be adequately represented. A physician cannot insert him or herself into this modern Gestaltkreis in the same way that we are beginning to be able to reinscribe a genetic code through gene transfer therapy. In the same way that expectancy and conditioning do not completely explain placebos, so too can suffering not be adequately explained through neurobiology and

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neuropsychology. The affective foundations of both suffering and the doctor–patient relationship refer to a pre-reflective dimension of experience that is a founding for activity, rather than being able to be manipulated through medical action. Yet, medicine is increasingly able to exert control over the neurobiological pathways of pain and suffering. In this way, medicine exerts control over suffering without being able to assume it. Phenomenological investigations into the affective foundations of suffering require what Husserl has described as a ‘transcendental aesthetic’. This refers to phenomenological investigations into the structure of sensibility through self-temporalization and lived bodily kinesthesis (Husserl 2001). There are a range of issues raised by the pain–suffering relationship in clinical medicine that can be examined phenomenologically. For example, in this analysis I have emphasized the importance of temporality. Pain occurs in the present moment. Suffering arises in the transition from internal to external time synthesis. As Cassell claims, suffering occurs when a person’s sense of future time is threatened. Recall of past experience through retention, too, is fractured by the presence of pain. Yet, pain also fractures present experience. One experiencing pain is not at home in oneself, but has the need to escape the present. The therapeutic act involves the treatment of a temporality trapped in an unbearable presence (Ophir 2005: §6.000). The physician helps to restore the flux of time, the healthy interplay between internal and external time synthesis. Yet, in treating suffering as a medical object, the physician reifies the fractured moment. This is epitomized by functional magnetic resonance imaging, which is a series of static images connected in series to present the appearance of temporal flow. Again, neurobiology can help demarcate the limits of scientific objectivity, but cannot explain first-person, subjective experience. The other great phenomenological theme which has a bearing on the question of medical treatment of suffering is that of empathy. Phenomenological investigations of empathy seek to determine the intentional structure of the experience of what it is to understand the feelings, desires, and beliefs of another (Zahavi 2001). There is, however, no single unified phenomenological approach to empathy, but several. The main issue distinguishing between them is whether intersubjective relations are characterized by empathy, whereby an individual attempts to ‘grasp’ the subjective experiences of another (Zahavi 2001). For the present analysis, this can be rephrased in terms of whether empathy is the main kind of phenomenological technique appropriate for physicians faced with human suffering and, in particular, whether empathy is appropriate for the pain physician dealing with maldynia. The topic of empathy is too

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large to be dealt with here. However, in this concluding section it is worth mentioning the two approaches to empathy by the phenomenologists that have been explicitly mentioned here, Levinas and Jaspers. For Levinas, in consonance with his views on suffering, empathy is not considered adequate for the infinite ethical obligation to the other that arises in the face-to-face relationship. Empathy as a form of phenomenological intentionality cannot comprehend that which evades comprehension through infinite ethical obligation in the presence of alterity. The obligation of medical beneficence to respond to the human cry of suffering is not fulfilled through phenomenological reflection, but through ethical response (Levinas 1969). For Jaspers, the relationship between his critique of the medical assumption of suffering and empathy is more complicated, because he ascribes a positive role to empathy in the development of ‘subjective psychology’. Jaspers advocates the use of empathy in order to perceive subjective symptoms by “transferring oneself […] into the other individual’s psyche” (Jaspers 1968: 1313). The aim of subjective psychology is “the final realization of the concepts and ideas which form the inner representation of psychic processes” (1314). One might think that Jaspers’s development of empathy in his influential theory of psychopathology counters his argument against the incorporation of patient subjectivity into the medical method. It is not that Jaspers differentiated between psychiatry and general medicine in his attitude toward subjectivity. Indeed, the possibility to participate in other peoples’ inner worlds is a characteristic of all intersubjective relations, including but not limited to clinical interaction. Rather, Jaspers’s reflections on empathy incorporated an understanding about the limits of understanding other minds, and most definitely in terms of controlling them through medical interventions. The problem then is not that of attempting to understand first-person experience – this is a requirement for a sensitive, attuned physician – but of assuming that one can intuit another person’s experience as ‘self-given’. At best, one can have access to another person’s subjective experience through immersing oneself in the gestures, behavior, and expressive movements of another person, one of the three empathic methods that Jaspers describes, and through active imagination, attempt to intuit the definite characteristics of the other person (Jaspers 1968; Wiggins and Schwartz 1997). This is a far cry from claiming that one can really understand another mind or grasp another person’s subjective experience as self-given through empathy. Although having quite different perspectives on suffering and empathy, Jaspers would probably agree with Levinas’s statement that “the absence of the other is exactly his presence as other” (Levinas 1979: 89). In other words, for

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Jaspers, empathy does not detract from, but in fact affirms, the ultimately unknowable nature of first-person subjective experience. This is especially the case for severe pathological phenomena, which are characterized by their “complete inaccessibility to any empathic understanding”. This could equally refer to the first-person experience of pain that resists formation into language.

Conclusion Claiming suffering as a medical category errs in two ways: first, as Jaspers has observed, by mistaking the part for the totality. Jaspers’s critique applies even in cases where suffering is transcended, for example, through ritual or myth, suffering arising from a particular threat to the self dissolves in a larger totalizing landscape. It errs in the second case by conceiving the doctor–patient relationship in terms of what can be grasped, in not recognizing that the relationship with the other cannot be anticipated. Suffering as the herald of death confirms the unassumability of suffering. As Levinas writes, “This approach of death indicates that we are in relation with something that is absolutely other, something bearing alterity not as a provisional determination, but as something whose very existence is made out of alterity” (1987: 74). It is a mistake for medicine to assume that it should incorporate suffering into its realm as a subjective experience that may be self-given and also an object of treatment. Medicine perennially deals with what is variable and contingent. However, the dream persists that one day medicine will become a pure science and eliminate contingency. Both the body and its desires will become malleable objects for medical control. The lesson from suffering is that medicine justifiably has its limits. The end of modern medicine should ideally combine curing and healing; yet understanding this to mean the treatment of ‘suffering’ as a thing-in-itself is to extend medicine beyond its natural and ethical calling.

Acknowledgments The author thanks Smadar Bustan for the invitation to participate in the Interdisciplinary and International working group on Pain and Suffering, University of Luxembourg. The group’s first multidisciplinary workshop in 2009 provided the opportunity to present an original version of this paper.

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Singer, Tania et al. 2004. “Empathy for pain involves the affective but not sensory components of pain”, Science 303: 1157-1162. Stewart-Williams Steve, and John Podd 2004. “The placebo effect: Dissolving the expectancy versus conditioning debate”, Psychological Bulletin 130 [2]: 324-240. Sulmasy, Daniel P. 1999. “Is medicine a spiritual practice?” Academic Medicine 74: 1002-1005. Svenaeus, Fredrik 2000. The hermeneutics of medicine and the phenomenology of health. Dordrecht: Kluwer. Temkin, Owsei, and C. Lilian Temkin, Eds. 1967. Ancient medicine: Selected papers of Ludwig Edelstein. Baltimore, MD: The Johns Hopkins University Press. Toombs, S. Kay 1990. “The temporality of illness: Four levels of experience”, Theoretical Medicine 11: 227-241. Van Hooft, Stan 1998. “Suffering and the goals of medicine”, Medicine, Health Care and Philosophy 1: 125-131. Wiggins, Osborne P. and Michael Alan Schwartz 1997. “Edmund Husserl’s influence on Karl Jaspers’s phenomenology”, Philosophy, Psychiatry & Psychology 4: 15-36. Zahavi, Dan 2001. “Beyond empathy”, Journal of Consciousness Studies 8: 151-167. Zajonc, Robert B. 2000. “Feeling and thinking: Closing the debate over the independence of affect”, Feeling and thinking: The role of affect in social cognition. Ed. Joseph P. Forgas. New York: Cambridge University Press, 31-58.

THE NARRATIVE OF THE MAN WHO SUFFERS MARIA LUÍSA COUTO SOARES

“La douleur qui se lamente s’enchâsse dans une forme, sort comme une chose ou meurt pour devenir chose–puis au-delà s’échappe avec la félicité du violon.” —Rilke

Physician and History – Narrative or Fiction? The metaphorical discourse of first-hand descriptions of pain and suffering have gone hand in hand, throughout human history, with the cultural, and social evolution, and, obviously, with medical sciences. Suffering, pain, and illness belong to history as well as to medicine, from the days of the Greek tragedies to now. However, writing up the history of pain and illness does not mean that they are no more than an idea, an abstraction of a complex empirical reality – as submitted by Jacques le Goff in the presentation of Illnesses have a History (Goff 1985). In the final essay of this book, “Man and Illness”, Jean-Charles Sournia concludes that illnesses only have the history that mankind awards to them. This history is only a story, a fiction. Since illness does not exist by itself, it is but an abstract entity to which man gives a name. Following the indispositions felt by the individual, physicians create an intellectual notion that covers the symptoms described by the “patient”. Medical science’s scientific efforts notwithstanding, their rationality is always mingled with irrational beliefs, naiveté and charlatanism. Therefore it is not easy to draw the line between medical and magical practices. This sceptical and obscure diagnosis only augments the problem of the incommensurability/disproportionality and the impossibility of integrating into a whole the phenomelogical discourse of the patient, who describes, to the best of his ability, his painful experiences and his sufferings, and the discourse of the physician who listens to him, interprets him and describes in scientific and quantitative terms the “illness”. In other words, one could consider that all the experiences of the man who is unwell (in very general terms), and the various clinical practices throughout history are nothing but social, cultural, etc. expressions of a time and civilization.

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Incommensurability is amplified here: beyond that which threatens the dialogue and understanding between the patient and the physician (synchronical), there is a diachronical abyss that separates and isolates the different cultures and civilizations, with their specific coordinates. As such we find ourselves at a crossroads, a labyrinth, where any attempt at understanding seems to be frustrated by temporal barriers and above all by barriers between the self and the other (in the synchronical case), between different “forms of life”, or if we resort to Wittgenstein’s expression, between different “narratives”. (See the comments on Frazer’s Le Rameau d’or: a nineteenth century man of science “sees” and interprets magical practices as irrational, prescientific actions; these practices are totally foreign to him, he cannot understand them, because he is unable to integrate them in the coordinates of his form of life. But that does not allow him to exclude them a priori.) Frazer’s “scientific explanations” are nothing but hypotheses. It was for this reason that Wittgenstein reasoned in terms of possibility. I do not understand these practices, they are totally foreign to me, yes; but they could not be strange to me and I could understand them (Cometti 122). I could bridge this “abyss”, which in actual fact is not that abyssal because, despite the differences and the distances between ourselves and others (other cultures, forms of life, etc.), there is a common base of resemblances (as Wittgenstein would say) which brings us together, and therefore they can become understandable for us.1 What enables this rapprochement? It is the fact that, notwithstanding the distances and differences, they belong to a common history: “the natural history of mankind”, in Wittgenstein’s expression. And human reason is historical, and historical reason, a comprehensive narrative of human events, has necessarily a narrative character.

Narrative and History (History and Story) The notion of narrative is currently one of the richest and simultaneously most problematic tools to resolve interdisciplinary problems and dissonances between different traditions and enable an understanding of

1 “These ‘strange’ practices, described by the ethnologist as distant and esoteric phenomena, are perfectly understandable in the sense that we could ourselves carry out thought experiments, foresee them and fill in the empty spaces by our experiences, our imagination. All of this is possible if we learn to put ourselves in the other person’s place” (Bouveresse 1982: 12, my translation).

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the differences.2 Differences between world visions, cultural perspectives, reasoning traditions; and, above all, differences that constitute obstacles to our understanding of our own lives and those of other humans beings. Here I will take narrative in its two meanings: on the one hand, narrative as an operator of the identity of the self, that is, the unity of a narrative that links my entire life from birth to death, and on the other hand, a narrative that has a beginning, a middle and an end.3 A person’s life – all its events, experiences, etc. – is apparently a dispersion, made up of fragmented moments, moments with their own time and their own space. Space and time are factors of in-identity. I am well aware of the difficulties raised by the problem of personal identity across time. I do not propose to develop this problem here; I would only like to point out that all attempts to ground the identity of the self in self-consciousness, memory, etc. lead to insurmountable impasses (see Taylor 1986, chapters 8, 9 and 10). How can the idea of narrative overcome these difficulties? The context of a personal narrative brings together the real, the imaginary, the possible, the past, the present, the future, etc. It is not a simple chronological description or list of what happens, of everything that is the case, according to Wittgenstein’s expression in his Tractatus. It is a question of understanding the whole, where each individual part, each moment in time, cannot be understood unless it is seen as a part of this whole. Human life can only be understood as a whole: that is one of the key ideas that the notion of narrative brings to the understanding of life – our life and other people’s lives. My life must be understood as a teleologically ordained unit, as a whole where I must learn to discover Nature and Good: within this meaning my life has the continuity and the unity of a research whose purpose is the discovery of this truth about my life as a whole. According to this conception, my life has the unity of a story with a beginning, a middle and an end. (MacIntyre 197)

2

“Interdisciplinarity has been the name of the game for quite some time. One of the rich, but also problematic, tools for bridging gaps between disciplines is the concept of “narrative”. This essay will deal with different notions of “narrative”, broader and narrower interpretations of the term, and will then suggest my own view” (Rimmon-Kenan 2006). 3 “[…] a concept of a self whose unity resides in the unity of a narrative which links birth to life to death as narrative beginning to middle to end” (MacIntyre 1984: 205).

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Each particular life as a whole exists in its various parts – actions, projects, events, fears, sufferings – which are the acted-out narrative of this life. But the understanding of these parts – of suffering, pain, illness, a particular experience – depends on how we conceive and characterize all of life. They are not isolated episodes, loose fragments, but lived moments in which the entire life of the individual is tacitly present.

Narrative and Clinical Practice Why do we go to the doctor? Immediate answer: because we feel ill, we do not feel well, we feel something is wrong, we are exhausted. What are the aspirations of the patient who patiently waits his turn? The doctor, he believes, will listen to him, understand the causes of his sufferings, care about him, alleviate his pain, give him a new hope, perhaps even cure him. An excessively simplistic response, one might add. Let us return to the notion of “narrative” as a tool and a method in medical practice and let us try to draw some consequences as regards the patient/doctor encounter. Consciously or not, the man who suffers expects one thing: to be understood, radically understood. I will only refer three implicit aspects of what I have already said on the contribution of the idea of narrative to the understanding of human life.

The personal world of the individual and his expressions Jaspers, in his seminal 1913 book General Psychopathology, wrote illuminating pages on understanding the world as a pre-condition for grasping the meaning of what an individual tells us (General 274). This understanding does not rely solely on an interpretation of what is said. One has to see beyond what is said: we have to question what the other means in simply saying what he says. It is not a question yet of hermeneutics, but of understanding everything that is implicit behind the words, the complaints, the self-descriptions that the other gives of his lived experience. All the objective meanings are surrounded by more or less hidden aspects, which may be apprehended as involuntary expressions of the psyche, revelations of something that, whilst not being stated explicitly, is implicit or tacit like an aura: the particular tone with which the other

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speaks, the melody, the style, the atmosphere, are like the physiognomy of language.4 In order to penetrate into the world of the other, it is not enough to listen to (to hear) his words like the noise of a more or less exact, objective description. This description may resemble an incoherent discourse, a mixture of fantasy, imagination, obsessions and fears. But the words hide and reveal his personal world, that is to say, his particular way of being in the world. While it may even be the discourse of a hypochondriac who suffers from imaginary illnesses, it is clearly his world that he is conveying. Lichtenberg was a very particular kind of hypocondriac, always attentive to the slightest movement of his body. He immersed himself in the examination of all his illnesses almost with pleasure, because his torments stimulated his reflections. In one of his aphorisms he listed thirteen illnesses besides that diagnosed by the doctors: abdominal spasms. He believed he suffered from marasmus senilis (at age 46), hydropisy, a malignant fever, icteritia, etc. He very reasonably admitted that all those who would read his text would think that the only well-founded fear was the twelfth of his exhaustive enumeration. Obviously, all his doctors considered that he only suffered from the real diagnosed illness. But do we not often suffer more from our fears of what might happen than from reality itself? And these fears, these products of imagination are there, clearly present on the vital horizon of our world. The patient’s self descriptions are first input for the doctor, not only in psychopathology (Jaspers), but also in the entire clinical practice. If one does not listen to the patient, one runs the risk of passing too quickly to an interpretation and translation into scientific terms which disdains or does not take into account the personal world of the individual. Quantitative transcriptions (X-Rays, CT Scans, etc.) cannot account for the pain and often, as described by Miguel Torga, can even increase it by a depersonalization of the patient’s body: X-rays and more X-rays. The agitated and suffering image of my poor innards, ruthlessly exposed to broad daylight. Discussions and interpretations on the subject of their smallest fold. And no-one can understand the pain, the despair and the shame that take hold of me. (Torga 1982)

4

The importance of physiognomy: Goethe was interested in Lavater’s studies: “The study of physiognomy deducts the internal from the external, but what is the external of Man? (see Jaspers 1997: I, 275).

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It is an emblematic testimony, because it is a physician (Miguel Torga) who, at that moment, underwent the experience of the patient. A man who had been a clinical practitioner, and therefore knew well the doctor’s viewpoint, underwent the painful experience of, as a patient, seeing his suffering misunderstood, translated or reduced to X-Rays, CT scans, etc. His world, his situs had henceforth changed: he had switched from the role of the doctor to the role of the patient. His world had changed. It was a totally new experience, despite his proximity to the sufferings of others throughout his professional life. At that moment he understood that quantitative transcriptions are not genuine expressions of his world. The expression “being in the world” takes on a specific meaning as regards the person; the person is an intimacy, not fenced-in, but a possession of oneself in relation to one’s origin. Being in the world does not mean that the world circumscribes him, but that it is immediately open to him, welcomes him, since it is not only his habitat, but his original humus; it is not his place, his entourage, but what is intimately close to him. The man is in the world immediately, without any mediation. It is not the known world; the known world presupposes a distance, an objectification. Between the man and the world there is an immediate mutual openness, without continuity. Thus, to understand an individual is to understand his being in the world, in other words, to understand that this person is not only an individual, an isolated object, disengaged from everything else, but that this person is a world, an openness, an immediate character that is not spatial but temporal. However, it is not a question of a process; the openness is immediate, we are already in the inseparable world of the in, i.e. the world does not appear – it is already given, open.

The life of a man as a whole M. Torga’s example that I quoted may make us think about a change in his world. In actual fact, in this case we speak about the world as a known, represented, lived-in world. These experiences are temporal, they change throughout life. And yet this temporal character does not compromise the unity of life. Man exists as a whole at each and every instant. His body moves like an object in space, his appearance changes, he grows old. He becomes a piece of matter, a random object which presents itself before us. But if we see a man in this specific body, we deny the man in himself (Jaspers 756), for we lose sight of his infinite unity. We make it objective; in other words, we isolate a part, a stratus of his reality, leaving his entire self and his whole life in the shade. A man’s life, this infinite unity, is not

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accessible through knowledge. Even when becoming known, his unity and his whole remain hidden behind the various unities that make it up. That is why any scientific research on human beings cannot give us a global picture of the individual, but only a plurality of images. It is a mistake to bring down all our knowledge of man to a single level, as though he were in front of us like an object, a whole knowable by its causes and its effects. This methodological problem of humanistic sciences is unavoidable, however (ibid). But medicine is an art, a technê, in which medical science is but an instrument, which does not ensure a sound clinical practice, in the same way that simply knowing the laws of harmony and the rules of playing the piano does not make one into a good pianist. I cannot dwell here on these problems of the epistemological status and the methodology of the medical and clinical sciences. Let us go back to the idea of human life as a whole. Naturally, one has to elaborate on the notion of whole (holon), but an exhaustive presentation of this notion is beyond the scope of our work here. To sum up, I would say that life is a whole (holon) in the sense that it is a unit integrating several parts, some of which are only potentially present.5 This idea allows the reconciliation of two aspects of humanity: that man is an unfinished, fragmentary, finite nature, and that simultaneously he is a boundless openness, a sign of his permanent incompleteness. Human beings remain always incomplete because of their continuous plasticity, an incompleteness pregnant with future. Quoting Aristoteles, the psyche is or can become all things. Coming back to MacIntyre (1990: 197-199), if we think about life as a teleologically ordained unity, as a whole where we must learn to discover Nature and Good, our life will have the continuity and unity of a search. This unity is the unity of a narrative that has a beginning, a middle and an end.

The understanding of life – of all that cannot be said Because life is a continuous quest for meaning, and its totality cannot be understood throughout the time of our experiences, the question is: how can we understand an individual who tells us of his suffering, his pain, his lived and always partial experiences? What he says is but the tip of an enormous iceberg submerged in deep waters. We listen to what he says, the physician listens to him, and maybe he does not discover anything 5

On the meaning of “all”: Aristotle, Metaphysics, 1023b 25-35.

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new. All of this has been said time and time again already. He hears but he does not listen, he does not see this unique man, alone, in front of him, seeking to make him understand his problems, his entire life. The immediate reason for this medical appointment is probably not his symptoms, but the desire to be listened to and understood. The patient’s self-descriptions are undoubtedly the first input for understanding the other. This personal discourse is the immediate expression of the patient’s self-consciousness. He alone can do it. But his own words are too poor to convey his thoughts. What is said hides many lived experiences, an entire past that is still present, an entire future that he anticipates. It is a search whose end is unknown to us. Neither the patient nor the physician know the end of the “narrative”. What can be done? I would take up Polanyi’s emphatic advice in all its apparent simplicity, like the (re)commencement of forthcoming research: “Look at the end. Remember your purpose. Look at the unknown. Look at the conclusion” (Polanyi 127). This means that medical practice will always be an unfinished business, always open-ended, for it seeks a goal – the end of life – that is unknown to us, but always present on the temporal horizon of our lives.

Works Cited General Psychopathology 1997, The Johns Hopkins University Press, Baltimore and London, vol I. Goff, Jacques le 1985, Les Maladies ont une histoire, Paris, Editions du Seuil. Cometti, Jean-Pierre 1996, Philosopher avec Wittgenstein, Paris, PUF. Jaspers, ob. cit., II vol. MacIntyre, Alasdair 1990, Three Rival Versions of Moral Enquiry. Encyclopaedia, Genealogy and Tradition, University of Notre Dame Press, Notre Dame, Indiana. —. 1984, After Virtue, (2nd ed) University of Notre Dame Press, Notre Dame, Indiana. Matti Hyvärinen, Arun Korhonen & Juri Mykkären (eds) 2006, The Travelling Concept of Narrative. http://www.helsinki.fi/collegium/eseries/volumes/volume_1/001_03_rimmon_kenan.pdf Taylor, Charles 1986, Sources of the self. The making of the Modern Identity, Harvard University Press, Cambridge Mass. Torga, 1982, En franchise intérieure. Wittgenstein, Ludwig 1982, Remarques sur le Rameau d’or, Lausanne, L’Age d’homme.

PART V THE LIMITS OF THE VERBAL

BEING-IN-STORIES: ON THE SYMBOLIC EFFICACY OF SELF-NARRATIVES* PAULO JESUS

Reasons and causes as life strategies Reasons and causes typify two language games or grammars tending to incommensurability. These grammars institute a qualitative discrimination between the self-efficacy of being someone and the symmetric, selfless, efficacy of being something. Reasons can behave as causes, although it is fully absurd to interpret reasons as causes and vice-versa. Yet, in order for reasons to possess causal efficacy, one must assume: first, a monist ontology warranting the communication of dynamic efficiency between two chains of phenomena, that is to say, the chain of intentional representations and that of body movements so that a deep ontological homogeneity may coexist with a surface heterogeneity; second, a self-alert phenomenology which recognizes the peculiar “I feel” that must be able to accompany “my acting” and “my making happen”, while acknowledging, however, the validity of an invincible metaphysical uncertainty. Selfhood emerges here as an unstable but unifying process of meaning construction. In line with Wittgenstein’s seminars, the classic work by G. E. M. Anscombe (1957) illustrates vehemently the incommensurability thesis which implies the irreducibility and heterogeneity between reasons and causes. This thesis rejects the possibility of the identity of reasons and causes, considering it as alogical. For reason and cause would be incompossible logical functions, semiotic processes with non-coordinatable normative principles. Reasons and causes would be parallel “language games” without tangency points, without mutual translation, given their lack of analogical grammars. They would be absolutely heteroclite tools without any common criterion of truth, each of them having its peculiar cognitive efficacy. From this standpoint, the fundamental option for the *

Research funded by a post-doctoral grant (FCT/MCTES) with the scientific support of CFUL (Lisbon) and CREA (Paris, 2009/10).

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grammar of “reason” or the grammar of “cause” is not grounded directly in ontology, but rather in cognitive and symbolic practices. The same phenomenon may be described either in terms of “underlying reasons” (becoming thereby an “action”) or in terms of “efficient cause” (becoming then an “event”), because each one of these descriptions belongs to sui generis modes of interpreting a phenomenon (either as dependent or independent with regard to a self-conscious agent) and of relating it with specific types of practices (desire or conative practice which aims to produce something successful in the world, and belief or cognitive practice that seeks representational accuracy). Such practices involve different evaluative canons (one being performative and the other properly descriptive) as well as “symmetric directions of fit” (one subordinates the world-to-the-word and the other the word-to-the-world) (Anscombe 56; Searle 3). The production of selfhood or subjectivity appears as the key effect of a relative instability in the meaning of enacted signs. The cogency of Wittgenstein-Anscombe’s proposal imposes itself by sacrificing entirely the ontology of action – or rather by abstracting from it with an attitude of ontological agnosticism (Wittgenstein 1953: 195). In fact, from this angle, the concept of meaning is absolutely neutral or indifferent towards ontology and, hence, follows tacitly the crucial inference that ontology, in and by itself, is amorphous and non-constraining. Every phenomenon may be “action” or “event”, provided the necessary and sufficient obedience to the principle of semiotic non-contradiction, that is to say: “A phenomenon may be simultaneously or successively action and/or event if it is integrated in each one of both language games by different semiotic players in the same moment, or by the same player in different moments.” By definition, a language game is efficacious only if the players follow and enact a Gestalt of rules that suspends all other possible rules, and thus creates a space of inalienable symbolic sovereignty with ontophenomenological effects. In this sense, the so-called pre-linguistic purity or indomitability of the “mode or process of being” is reduced to silence: indefinite, unintelligible and inefficient or inert silence. To evoke a striking Wittgensteinian example, one might say that according to this semiotic constructivism nothing a priori in a toothache determines its possible meaning, because there is no universal ontology for a toothache, but only contingent grammars that rule the construal of a toothache as a particular object and quality of possible experience. One should assert, in the last analysis, that practical semiotics decides all meaning, including the meaning of senses, the meaning of sensoriality and all tonalities of qualia, like pain and pleasure. To suffer from pain in general and from a toothache in particular means to play a game that makes me play it. Something is

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“painful” only within a determined symbolic game that consists in the “institution of a painful meaning as sense” or a “meaningful system of nociperception”. Grammar evolves through embodied co-constructed learning and along epigenetic paths that define the developmental compossibilities of meaning and its embodiment. Likewise, the self emerges as a grammatical competence, mainly selfnarrative, defining a field of intelligible action, which can be termed “moral personality”. A rigorous linguistic turn would present itself as a non-ontological constructivism, a semiosis that neglects the possibility of onto- or bio- or eco-semiotic nerves capable of being determinant endogenous forces on the epigenesis and continuous restructuring of grammars. A strict symbolic autonomy would have an autophagic tendency and would claim for an exception regime of self-determination and over-determination, assuming its primacy over the realms of phenomenology and ontology. The living grammar is, however, a performing art and produces by itself all possible onto-phenomenological constellations. Semiogenesis and ontogenesis must merge perfectly so that embodied signs may produce what they signify. Thus, efficacious semiosis unfolds itself as a unifying experience of auto-poiesis and auto-energeia (or self-creation and self-actualization).

The grammar of reasons and causes: pathologies and therapies The hermeneutic oscillation between reasons and causes denotes a metaphysical confusion which insinuates itself continuously into the relationships between subjects and verbs. It is legitimate to ask with Wittgenstein whether such confusion generates true philosophical questions or mere grammatical pathologies whose therapy would consist of reestablishing functional affective bonds tying nouns/pronouns to verbs. All conceptual confusions, made manifest in the reciprocal ambiguity between reason and cause, would reside in practical confusions, which are “grammatical” or “logical” performances leading to nonsense, confusions between games or between tools or between expressive symbols. The differential practice of the language games here at issue – “to give reason of an action” and “identify the cause of an effect” – is described by Wittgenstein as follows: [g]iving a reason for something one did or said means showing a way which leads to this action. In some cases it means telling the way which one has gone oneself; in others it means describing a way which leads there

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and is in accordance with certain accepted rules. […] At this point, however, another confusion sets in, that between reason and cause. One is led into this confusion by the ambiguous use of the word “why”. Thus when the chain of reasons has come to an end and still the question “why?” is asked, one is inclined to give a cause instead of a reason. […] The double use of the word “why”, asking for the cause and asking for the motive, together with the idea that we can know, and not only conjecture, our motives, gives rise to the confusion that a motive is a cause of which we are immediately aware, a cause “seen from the inside”, or a cause experienced.–Giving a reason is like giving a calculation by which you have arrived at a certain result. (Wittgenstein 1958: 14-15)

The learning of a grammar warrants the regulation and preservation of meaning. The core of any grammatical learning is not, however, strictly linguistic, but rather behavioral and practical. Even if a particular language has no words to say “I”, “reason/intention” and “cause/force”, it is likely to offer, in its many life forms, a repertory of production and comprehension codes that rule the functioning of bodily or symbolic expressions capable of accompanying and meaning a unique logic of agency. Obviously, it is possible that the interpreter of a non-linguistic expression makes a false inference relying on an over-interpretation which results in a “projection of intentionality” on a course of phenomena, whose chaining and sequencing was merely causal. The understanding of any expression requires the understanding of a life form. That is why the jocose formula – “if a lion could talk we could not understand him” – carries a deeper truth than first expected (Wittgenstein 1953: 190). As is self-evident, such incomprehensibility proceeds not from the irrelevant impossibility of access to the lion’s mental activity but from the fact that meaning resides in the logical texture of a life form that we, humans, cannot share entirely with lions. Therefore, a lion remains incomprehensible because of the logical idiosyncrasy of his life form. Understanding a life form is always a matter of degree, for it depends on the extent to which my life form shares the practical-logical processes of the other’s life form. In a fundamental sense, the life worlds of different life forms must overlap in part, or else the simple recognition of a life form as other’s differential mode of self-organization would be impossible. In my “grasping a native’s point of view” (Malinowski 25), understanding a neurotic person (Jaspers 250), or guessing an animal behavior, there is always a part of shared and a part of non-shared processes of being and meaning, grounded in a partly common and partly unique life world; that which justifies the quest for eco- and biosemiotics. Whitehead’s emphasis on creativity and concrescence, Husserl’s concept of Lebenswelt, Merleau-

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Ponty’s metaphor of a germinal “chiasm” in sensibility, and Jonas’s idea of freedom or selfhood as intrinsic to every life form, all point to the birth of meaning in pre-subjective wilderness, as it were. By the same token, they all maintain that for any living being the reality of grammar meets the morphodynamics of life and encapsulates the “desire” for meaning and the “desire” for a selving self. Nature and logos, as well as life and grammar, must be regarded as continually fusing and co-evolving processes – otherwise they vanish. In this sense, once embedded in an actual selfbecoming process, reasons and causes give semiotic shape to life, and constitute life strategies in which meaning and being converge into creative transitions or “actual occasions” (Stenner 94-96; Whitehead 211, passim). Grammatical constellations can be life strategies if they are instilled with autopoietic energy and therefore produce themselves by producing what they signify. The touchstone of the actuality of a “grammatical” life strategy lies, however, in the self-transformational and self-transgressive force that converts “grammatology” into “experience”, a field of emotional intensities, nexuses and vectors, that is, a futurecentered organism in development.

Life, expression and understanding: The semiotic cycle The surface syntactic privilege of the subject in most language games makes us hallucinate the omnipresence of “reasons” and postulate the primacy of the personal pronoun over the verb, as if the pronoun were the first force from which all language would follow and become a selfpropelled stochastic process. Though pervasive it may be, such symbolic primacy of the subject should not impede an alternative view on the order of dependence, namely an order centered on the prominent value of “action”. This alternative order would entail the syntactic declassification of the subject and consider it a simple “active verb complement” (Descombes 7-22; Tesnière 45-66). Thus, all syntactic relations might be reorganized by the category of action. Indeed, verbs are not ruled by subjects; verbs convoke subjects and these respond to them as complements. The conception of language from the perspective of a center of agentic gravity proposes a more radical transformation, the transformation of general interpretive semiotics into narrative semiotics. As narrative competence and performance, my subjectivity or agency is a simple semiotic potentiality, whose actualization depends on the development of a vital relationship with a concrete life form. The efficacious semiotics is biosemiotics, accomplishing the preservation of a pattern of meaning which unifies a process and makes it recognizable as a

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life phenomenon for a living being. The narrative grammar produces the agentic vitality of the narrative subject, whose essence lies in an autopoietic semiotic practice. It follows that the subject who expresses herself does not communicate any form of self-knowledge; she only actualizes a grammatical know-how. The essence of a narrative lies in its implying a discursive flow, because the emergence of meaning and “intelligence” requires the acting-out of productive imagination and discourse against formless matter, the acting-out of vital textures with their space-time and rhythm of compossible connections: “[a]fter he had said this, he left her as he did the day before”.–Do I understand this sentence? Do I understand it just as I should if I heard it in the course of a narrative? If it were set down in isolation I should say, I don’t know what it’s about. But all the same I should know how this sentence might perhaps be used; I could myself invent a context for it (A multitude of familiar paths lead off from these words in every direction). (Wittgenstein 1953: 121)

One must observe in the logical dissymmetry between “reason” and “cause” that a “reason” does not suppose an infinite chain of reasons which would be accomplished by a continuous narration or by a narrative in progressive expansion ad infinitum. In fact, reasons allow one to grasp and generate the discrete, the discontinuous and even the hiatus, for their intelligibility does not rely absolutely on a regulative ideal of allencompassing unity or totality. There is no logical need for a perfectly unified texture of reasons so that every new reason may enjoy vital efficacy. A “reason” tends to appear in ephemeral and local actualizations. Yet, it can reveal a relatively lasting or global effect of self-cohesion under certain stabilizing discursive circumstances. Produced by that selfcohesion, the epistemic (non-conjectural) certainty is always formed against a background of non-reason, an ultimate horizon of certainty which is not generated but spontaneously given as common soil for further belief and understanding (the Husserlian Boden or Urglaube). This soil provides background practical certainties (Wittgenstein 1969: 36-65) that reside in the dynamic architecture of life forms and constitute the pragmatic condition for narrative meaning. The force of a reason derives from its quality of narrative operator and from its linkage with an actual life form: “What has to be accepted, the given, is – so one could say – forms of life” (Wittgenstein 1953: 190).

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Selfhood as hermeneutic application Reason and cause furnish two generative matrices for practical self- and hetero-interpretation. On learning the possible uses of both semiotic tools, every interpreter becomes cognitively motivated to apply them to her “life”. In this hermeneutic application, one can either confound, distinguish or articulate their difference and, by so doing, obtain various configurations of selfhood and agency. One telling example of confusion, a symptom of psychopathology or of poetic spontaneity, can be found in the expression assigned to a dementially altered Nietzsche: “I apologize for the poor weather!” This denotes a life form grounded in a peculiar ego-pananimism. This confusion contains the fundamental psychophysical belief that my self is a force of nature (or is embedded in the flowing of natural forces) which can “make rain and snow”, and comprises a pseudo-agentic intentionality in the sense that its structure is essentially pathetic, that is to say, actions are interpreted as affections resulting from multi-determined webs and loops of events. At the same time, it must be emphasized that such confusion can assume many forms and has the merit of attacking solipsism and proposing an ecological ground for any reason that must always proceed from previous actions and affections linked with certain habits of meaning assignment: “I wish to hear Brahms because it rains”; “I wish to hear Mozart because the sun shines”. As for the distinction between reason and cause, its disciplinary practice consists in establishing two parallel equations: on the one hand, “personality-as-agency”, equated with the grammar of free reasons and, on the other hand, “nature-as-objectivity”, equated with the grammar of efficient causes (deterministic and probabilistic alike). This distinction assumes an irreducible dualism, validated by cleft categories but invalidated by phenomenological analysis. Let us concentrate, consequently, on the most fruitful, complex and communal hypothesis which posits the articulation of explanation (Erklären) and understanding (Verstehen), be it vertical or parallel, horizontal or sequentially-alternated. This cognitive style of “articulation” reflects a motivating belief that fortifies the adherence to self-efficacy, according to which the increase of cognitive self-possession favors a proportional increase of self-control and self-transformation abilities. It would make possible the enjoyment of more power and, thereby, the attainment of more intentional sovereignty and causal hedonism. Thanks to the semiotic work of “articulation”, which conjoins semantic dualism with syntactic monism, my self-interpretation oscillates strategically between the grammar of reasons and the grammar

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of causes, seeking for an optimal intelligibility within the system of Iphenomena, that “I, s/he or it which makes me do and makes happen in me”. Some connections in this system belong to a series of facts causally explainable, while other connections are interwoven in narratively understandable biographies. One may conceive of some vital elements that are more intelligible through explanation or through understanding (elements that demonstrate a kind of preferential inclination to one or another interpretive grammar), whereas other elements seem to benefit from the same level of intelligibility in both grammars. From a metainterpretive angle, one recognizes that every subject develops her selftheory – having recourse to the double regime of explanation and understanding – in order to describe the paradigmatic transitions in her epistemology of self-interpretation. How can I understand or explain the fact that I consider this vital passage incomprehensible? Why do I regard this event X as being without reason but flowing inexorably from a knowable cause? Or instead: Why do I believe that now in face of Y to interpret myself through self-explanation makes not enough sense? Why do I find compelling the recall of those emotions synchronous with episode Z as an epistemic warrant of the feeling of self-understanding? These questions are always implicitly or explicitly at stake in the process of symbolic self-interpretation. In the permanent strategic shift between “explanation” and “understanding”, accomplished by my self, if competent in both methods, it is expectable that such reinforcement of selfhood translates into semiotic transgression and invention which produce a new kind of valuable “biosemiotic diversity”. Equally, selfhood lives by symbols that must be identifiable and recognizable. So, the coefficient of transgression goes hand in hand with the symmetric coefficient of semiotic preservation and conservation which enhances “biosemiotic diversity” with “biosemiotic compatibility” (patent in the “symbiotic” relationships between users or inhabitants of the same symbolic ecosystem). The “articulation” allows for a strategic appropriation of the powers of each game, which can destabilize the pre-established games in order to test their elasticity or to perform and rehearse any novelty opening up new styles of playing or even new games. The practice of multiple games expands the player who embodies, in the last analysis, the concept of incomputable force (or indomitable agentic patterns of possibilities). Nevertheless, strategic and metacognitive expertise does not elucidate entirely the articulation between different games. There is also an unintended pathetic and practical dimension at play that must be highlighted. The “player” moves typically from “reasons” to “causes” under various affective dispositions which

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express themselves semiotically, for instance in the ambivalence of reasons, in the frustration of the coherence expectancy between reasons and actions or in the lack of reasons (Wittgenstein 1958: 88). At any rate, whenever a reason shows a high degree of inertia, it is vanquished by the dynamics of the cognitive habit of perceiving the ascending genealogy or archeology of causes. The uncovering of causes appears as a last semiotic resort that might signify an experience of learned self-loss. Another possibility not to be neglected is the following: the “player” believes in the ontological and epistemological value of causality as the most powerful binder, the cement of the universe. So, she only retains from reasons their predictive power regarding action, and hallucinates a quasi-mimetic relationship between reason and cause as the very essence of a reason, despite the singularity and the non-necessity of the causal force of reasons. The player strategies move from reasons to causes whenever the predictive power of “reasons alone” diminishes, as is noticeable in the case of reasons reconstructed through narrative retrospection or through moral reassessment of action (Freeman 47-92). The linkage of causes and reasons – and the shift between them – responds to a rational passion for unity and continuity as conditions of intelligibility. Semiotic invention is the key operation that converts simple intelligibility into self-relevant “truth”, whose prime mode of constructive expression consists in selfstorying. However, in contrast with the empirical and proof-oriented character of causal knowledge, the function of narrative self-interpretation is axiological, ethical and aesthetic, pursuing and prosecuting the “good form”, the pregnant Gestalt, which achieves a desirable symbolic selfrefiguration. A life story is a symbol which produces what it means. Though ephemeral, its psychological truth is absolute and constitutes the strongest mode of efficiency and efficacy of practical reason. The truth of my life story lies in its free vectorial form as a dynamic blazing of paths, a meta-stable embodied inscription, which is always situated on an inescapable onto-ethical horizon, and presents itself as a proactive quest and self-projective orientation. Being one and multiple, I cannot unify who I am, I cannot identify myself as agent, unless I know how to structure the process of my life as a narrative development toward a higher good, that is, as a “moral space” (Taylor 12-30). The desirable “good narrative form” constitutes a cultural prefiguration, a meta-narrative semantic schema which provides the canon of all narrative (emotionally constructive) configuration and the criterion of a refiguring self-assessment of lived life (Ricoeur 1983: 105-162). With the autobiographies that give shape to a cultural meta-narrative of “agentic

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self”, like Augustine’s, Rousseau’s or Goethe’s, with the lives of great self-heuristic and self-zetetic characters, like Ulysses or Abraham, Don Quijote or Joseph K., that add substance and paradox to the unstable construal of selfhood, and with all daily micro-narratives that punctuate social co-ordinations, every self-interpreter composes a morphological spectrum of good, desirable, narrative forms. These biosemiotic formations expose the unity of life and grammar, by nurturing every nascent self with a cultural library of mytho-biographical figures which typify the narrative possibilities of a meaningful life; a “good life” being thus a life worth telling. Doubtlessly, there is no “agent” without autobiographical awareness, but an autobiography comprises inherently a “self-ideology” or “mythobiography” in the optimal narrative sequence. And hence follows an organic body of form and matter, cognition and memory, poiesis and mimesis. The six elements of tragedy, expounded in Aristotle’s Poetics and redescribed by Burke (21-89) and Ricoeur (1983: 65-134), show a stabilizing systemic permanence, while new semiotic configurations, explored by life and art, are massively perceived as destructuring, abnormal and teratological. The “incredulity towards meta-narratives” (Lyotard xxiv-v) has a deep self-interpretive impact on the (de)valuation of certain biographical configurations. Take, for example, the narrator of Anna Karenina by L. Tolstoi, who confesses his dogmatic belief in a certain platonism regarding the crystallized eidos of a “good narrative/life” when he asserts that: “All happy families are alike; every unhappy family is unhappy in its own way”. In line with this platonic reasoning, every self should find her only mode of composing a perfect texture, a self-Gestalt, or else lose herself irreversibly in myriad modes of tearing the self-text. The figures of fracture and crisis become, evidently, the most significant operators of narrative opening and closure. On perceiving a fracture or a crisis, the narrative intelligence suffers a traumatic shock and becomes paralyzed. Intelligence becomes a pathos, hostage of self-skepticism and self-irony; it is the kairological pathos which invites one to the acting out of narrative self-rewriting in face of the possibility of nonsense. A contrario, “Croire que je peux, c’est déjà être capable” (Ricoeur 2001: 90).

Homo sapiens fabulans: Onto-phenomenology of action The intelligibility of life is not a given, but a constructive labor, a vital task, that seems to be rooted in a “drive” (Trieb, conatus), naturally explainable (Damasio 1999 33-48; Gazzaniga 35-68), towards narrative self-understanding which is reactivated by any catastrophe or abrupt

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qualitative change, able to disfigure one’s narrative self-image, and threatens to destroy the writing studio itself. If at any point the world is no longer inhabitable as an “intelligible fable”, then homo sapiens fabulans fragments and abandons the poetic endeavor (MacIntyre 120-145). Semiosis without poiesis brings about a monologue of repeated, voiceless, disembodied signs. Only poiesis, as a self-performing art, can transform semiotics into biosemiotics. Pure semiosis is confined to the naked corpses of signs, and the passage from semiotics to effective semantics is only launched by the living uneasiness of a self-experiencing and self-experimenting I, whose bodily intensities and imaginative connections merge together, making drafts out of drafts, and composing a temporal landscape. Absolute nonsense, tangible in disconnected atoms of now-images and in lifeless signifiers, destroys the possibility of selfhood, for it jeopardizes all possibility of an onto-phenomenological solidarity within the moving triad: event/action, actor/character and author/writer. With the interruption of a unifying drafting labor, the “multiphrenic self” (Gergen 228-255) is no longer a poetic polyphony and regresses to the barbarian age of selfless inarticulacy and mute process, of agraphy and alexia. The experience of the blind mechanics of tragedy and randomness, assigned to an exogenous, increasingly unpredictable causality, may feed the (para-suicidal) belief in a meta-narrative of nonsense and self-dispossession. Moreover, it can dissolve narrative competence, thus being selfhood confined to an amorphous, speechless, discontinuous thisness, to the passivity and silence of a blank neutrum, to the brute ontology of events. This brute neutrum evokes Merleau-Ponty’s (1964) meta-phenomenological concept of wild being and wild meaning, redefined in a narrative vein by L. Tengelyi (2930) to signify the continuous emergence of a dispossessed meaning which structures and destructures the always fragile narrative unification of a life. Such dispossession means not only that action and narration begin always in medias res, and therefore without truly original spontaneity, but also that the course of action is permeated with events that constrain agents to answer them. Meaning construction would be virtually infinite for infinite “minds” and “texts”, but it is actually finite, because every actual, conditioned selving process possesses limited poietic energy and limited capacity of transcendence in order to (re)constitute her objectified signs and her lived instants. In other words, something cannot mean everything (see Eco 14-35). Once engaged in a narrative performance, the telling I – and here telling does not exceed the tale – must decide what is (in)comprehensible and/or (un)explainable and cannot dodge this task of self-epistemological decision making and meaning construction (Velleman 205). Continuously

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on the brink of gross performative contradictions, the telling-and-the-tale-I must also decide whether she believes or not in the power of agency and how to live the consequences of that (un)belief. Feeling, imagination and belief generate hybrid truth-makers in the phenomenological production of selfhood. The phenomenology of self-efficacy conjoins those qualia and maintains the conviction of being cause or effect, active or passive principle, although this phenomenology is patently fallible, there being two possible major flaws: (1) to feel that my intentional reason is the force or efficient cause of a certain somatic, motor or physical effect, when such is not the case, due to the ignorance of the true exogenous cause that has simultaneously provoked effects on me and on the contiguous space; (2) not to feel the causal objective force of my reason/action, when it is the case, due to the lack of a conscious representation of the causal link (Wegner 221-264). The illusion of control and selfless automatisms constitute two usual fallacies, but the fundamental fallacy consists in believing in the ultimate proof-value of phenomenological data, for these data have the onto-epistemological status of ambiguous signs that require close interpretation. The evidence of their presence and intensity dissimulates their congenital ambiguity. In surface semantics they have the value of an irrefutable truth-maker deixis (index veri et sui). Yet, for deep semantics, at the level of cognition which infers and assigns relational functions, those qualia demand great interpretative discipline. As a matter of fact, those contingent elements of sensation cannot aspire to the high status of pure transcendental elements, of which one could a priori affirm that this I feel accompanies necessarily the performance of a selfdetermined causal power that initiates a new series of events in the world. Instead, they are impure elements that can accompany or not accompany the self’s action. Furthermore, they may result from learning processes and form an undifferentiated complex of sensations, emotions, imaginations, and beliefs. The most primitive layer of this “I feel”, necessary but insufficient to infer my “I do (and make happen)”, resides in the awareness or feeling of bodily effort. In this regard, there is a multi-secular inspirational strand of thought which values the positivity of somatic self-affection, whose key concepts include namely: Spinoza’s “effort of being or persevering in one’s being (conatus essendi vel in suo esse perseverandi)” (65-134); Maine de Biran’s “feeling of effort (sens de l’effort)” (134-186) and Merleau-Ponty’s “synthesis of bodily awareness (synthèse du corps propre)” (1945: 245-278). These concepts work out a constitutive unity between self/hetero-efficacy and self/hetero-determination which demonstrates the nonsense of believing in any causa sui taken as absolute spontaneity.

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Reason-as-cause can only be felt in a very unstable way as a “somatic marker” (Damasio 1994: 134-179), an “authenticating feeling” of authorship (Wegner 326-327). In summary, the passage from “I feel” to “I do” and “I make happen” is possible but uncertain. Other passages are involved in this labyrinth of discontinuity, which encompasses the grammar, the phenomenology and the ontology of action. In the grammar, there is no licit passage from an understanding to an explaining self-interpretation. Both semiotic games are as such disjunctive: reason cannot signify cause. In the phenomenological field, that passage exists; it appears to be there but – like all epiphanies – contains a hallucinatory structure. In the absence of metaphysical certainty, the agent enjoys a moral certainty of various degrees. The quality of this moral certainty depends, firstly, on the subjectively or intersubjectively constraining force of my psychosomatic evidence, and, secondly, on the subjective and intersubjective quality of my narrative co-production. The phenomenological ambiguity comes from the subtle chiasms between action and affection, between selfhood-otherness-thinghood, and between meaning and its epigenetic ecology. Finitude imposes to my selving relationships some particular configurations of determination and codetermination that are hardly discernible or computable. There is neither absolute activity nor absolute responsibility, but simply relative activity and responsibility, for one cannot identify absolutely self-determining centers of agency. Whenever “something” resists as incomprehensible in my experience, a detour through explanation may, then, be the best way towards an enhanced self-understanding. However, in this case, if I master the distinction between the understandable and the explainable, then I am also responsible for the manner in which my responsibility is semiotically structured. A second-order responsibility can emerge here: I become responsible for conceiving myself as capable or incapable of being responsible. At last, in ontology the passage must be possible. This paradoxical alliance between the apodictic and the problematic – “must be possible” – calls for a prudential stance, according to which the logical possibility of multiple disjoined and concurrent worlds (e.g., Leibniz’s world of representations and world of motions) cannot be declared as nonsense ex cathedra. The hypothesis of a perfect ontological cohesion offers the highest degree of intelligibility. “Manyness in oneness” is a metaphysical landscape that appeals strongly to the desire of knowing as its final panorama. In fact, despite their semiotic irreducibility, reasons and causes may be valued as extrinsic denominations, and differential cognitive perspectives, to approach the same real efficacious forces, whose

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discrimination would lie solely in the contingent varieties of descriptive and interpretive constructions. Reasons and causes may signify differently, and yet merge entirely in one and the same ontological poiesis. Thus, Davidson’s “anomalous monism” (2001: 178-256, 2005: 146-192) can be reconciled with the principle of deep dynamic continuity and affinity which is the bedrock of all intelligibility within the whole community of being and becoming. To conclude, semiosis is the structural motion of signs, with their virtual infinity of possible patterns of motion and connection, such as the pattern of causes and the pattern of reasons. Poiesis activates semiosis for actual living purposes, therefore transforms its geometry into a dynamic event, and its anatomy into a physiological process. When a subject becomes a competent player of diverse semiotic games, she becomes, by the same token, a competent self, that is to say, an autopoietic agent, who continuously instills energy into the fabric of language and, thus, recreates herself by recreating the texture of experience.

Works Cited Anscombe, Gertrude Elizabeth Margaret 1957. Intention. Oxford: Blackwell. Biran, Pierre Maine de 2005 [1807]. De l’aperception immediate: Le mémoire de Berlin. Paris: LGF. Burke, Kenneth 1945. A Grammar of Motives. Berkeley: University of California Press. Damasio, António 1999. The Feeling of What Happens: Body, Emotion and the Making of Consciousness. London: Heinemann. —. 1994. Descartes’ Error: Emotion, Reason and the Human Brain. New York: Putnam Publishing. Davidson, Donald 2005. Truth, Language, and History. Oxford: Oxford University Press. —. 2001. Essays on Actions and Events. Oxford: Clarendon Press. Descombes, Vincent 2004. Le complément de sujet: Le fait d’agir de soimême. Paris: Gallimard. Eco, Umberto 1994. The Limits of Interpretation. Bloomington: Indiana University Press. Freeman, Mark 2009. Hindsight: The Promise and Peril of Looking Backward. Oxford: Oxford University Press. Gazzaniga, Michael 2006. The Ethical Brain: The Science of our Moral Dilemmas. New York: Harper. Gergen, Kenneth 1991. The Saturated Self. New York: Basic Books.

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Husserl, Edmund 1970. The Crisis of European Sciences and Transcendental Philosophy. Evanston, IL: Northwestern University Press. Jaspers, Karl 1973 [1913]. Allgemeine Psychopathologie. Berlin: Springer. Jonas, Hans 1966. The Phenomenon of Life: Toward a Philosophical Biology. Evanston, IL: Northwerstern University Press. Lyotard, Jean-Fraçois 1979. La condition postmoderne: Rapport sur le savoir. Paris: Minuit. MacIntyre, Alasdair 1981. After Virtue: A Study in Moral Theory. Notre Dame, IN: Notre Dame University Press. Malinowski, Bronisáaw 1984 [1922]. Argonauts of the Western Pacific. Long Grove, IL: Waveland. Merleau-Ponty, Maurice 1964, Le visible et l’invisible. Paris: Gallimard. —. 1945. Phénoménologie de la perception. Paris: Gallimard. Ricœur, Paul 2001. Le juste 2. Paris: Esprit. —. 1983. Temps et récit 1: L’intrigue et le récit historique. Paris: Seuil. Searle, John R. 1985. Expression and Meaning: Studies in the Theory of Speech Acts. Cambridge: Cambridge University Press. Spinoza, Benedict de 1985 [1677]. “Ethics”, The Collected Writings of Spinoza. Ed. Edwin Curley. Vol. 1. Princeton: Princeton University Press. Stenner, Paul 2008. “A. N. Whitehead and Subjectivity”, Subjectivity 22: 90-109. Taylor, Charles 1989. Sources of the Self: The Making of Modern Identity. Cambridge: Harvard University Press. Tengelyi, Laszlo 2005. L’histoire d’une vie et sa région sauvage. Grenoble: Million. Tesnière, Lucien 1959. Éléments de syntaxe structurale. Paris: Klincksieck, 1959. Velleman, J. David 2009. How We Get Along. Cambridge: Cambridge University Press. Wegner, Daniel 2002. The Illusion of Conscious Will. Cambridge, MA: MIT Press. Whitehead, Alfred North 1978 [1929]. Process and Reality: An Essay in Cosmology. Rev. ed. New York: The Free Press. Wittgenstein, Ludwig 1969. On Certainty. Oxford: Blackwell. —. 1958. The Blue and Brown Books. Oxford: Blackwell. —. 1953. Philosophical Investigations. Oxford: Blackwell.

ON THE LIMITS OF KNOWING SUFFERING AND PAIN SMADAR BUSTAN

In The Myth of the Eternal Return (1949), Mircea Eliade traces the need of ancient cultures and societies to understand their suffering in order to be able to cope with misfortunes, crises, and the disruption that they cause: The primitive cannot conceive of an unprovoked suffering; it arises from a personal fault (if he is convinced that it is a religious fault) or from his neighbor’s malevolence (in cases where the sorcerer discovers that magical action is involved); but there is always a fault at the bottom of it, or at the very least a cause, recognized in the will of the forgotten Supreme God, to whom man is finally forced to address himself. In each case, the suffering becomes intelligible and hence tolerable. Against this suffering, the primitive struggles with all the magico-religious means available to him– but he tolerates it morally because it is not absurd. […] Suffering is perturbing only insofar as its cause remains undiscovered. As soon as the sorcerer or the priest discovers what is causing children or animals to die, drought to continue, rain to increase, game to disappear, the suffering begins to become tolerable; it has a meaning and a cause, hence it can be fitted into a system and explained. (Eliade 1954)

The same holds true for the modern person who has grown out of the ancient reliance on universal and divine causalities and could very well accept the lack of a clear reason for a given situation but still strives to fully comprehend what is violating his well-being. Eliade’s drawing back on history invites us to apply a similar consideration to our time by introducing the criterion of intelligibility into psychological, philosophical and epistemic discussions on suffering. For some, this may seem selfevident: we all need to understand what is happening to us when we feel bad in order to make the experience endurable. In addition, when one imposes a coherent and concrete interpretation onto an event, it acquires meaning and is hence valorized. But this is also the root of the difficulty. From a phenomenological point of view, when looking into the lived experience of the pained, it is not certain that striving to fathom things is a

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possible, or in this respect optimal, procedure. If making sense of suffering through knowledge becomes a necessary condition for bearing the experience, we may not only miss the point of what pain and suffering are all about, but may also disregard the very problem of tolerability when conditioned by the need of a rationale we unfortunately cannot always achieve. Because of the overpowering experience of pain and suffering, especially at the acute stages, the sense of their reality resists interpretation and hence comprehension. To explain why, this paper aims to show that pain and suffering are more than we can understand and describe by words or concepts as their consideration also requires factoring in what I shall call the pre-reflective. In their extreme form (the more instructive for our study), inability to accord to sorrow or contain the pain can either make us mute or particularly expressive. These opposite forms of deliverance attest to the diverse reactions and coping mechanisms we develop in response to internal horrors and deep distress. Yet, failing to account for this heavy portion of reality when undergoing the actual experience does not imply that words are too barren and poor to convey the sense of suffering, nor that one’s communication skills break down impotently as soon as the torment begins. In many cases, the intellectual as well as emotional process of deciphering distress requires remaining context-sensitive, aware that in a given situation the unspoken may yield verbal responses or verbalized thoughts. Hidden traumatic experiences may one day break free and the unrecognizable can surface. In this respect, the issue here is neither the capacity nor the incapacity of the subject to provide authentic personal narrations on the way to find relief. Moreover, when going beyond the subjective experience in trying to map the factors that lead to clear expressivity in pain versus those which favor obscurity and silence, we realize the possibilities are endless: from the psychology of individual characters and the diverse combinations of mental states to the unpredictable reactions of different people to the same misfortune or illness. As an upshot, it is the business of the phenomenological practice to focus on how the phenomenon is experienced rather than on who is bound to be charged with so much torment that the words to remain scarce (and that the language in which suffering is acknowledged is absent), in a way that shows why the possibility of not knowing our suffering is first and foremost inherent to the phenomenon itself, rather than depending on the qualities of its subject. My purpose in using this descriptive method consists of acknowledging that even though Husserlian phenomenology valorizes the ability of the

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human mind to form ideas through continuous reference to experience (the phenomenal realm), it can equally apply to a reality that occurs as prereflective. For a phenomenologist, it is unsatisfactory to recognize that pain and suffering set limits to our understanding. Classical Husserlian phenomenology is a theory with clear rules, premises and requirements that are imposed on any investigation employing its method, seeing no limits to humans’ ability to decipher our experiences. But in thinking about suffering, we must break away from the traditional way by paying attention to the lived experience that, both explicitly and tacitly, opposes conceptualization. The methodological similarity to the traditional way that I use consists in describing the inner experience of the pained in order to disclose a more nuanced key to the limitations set forward by the situation. This split does not put an end to the reflexive analysis of suffering altogether; nor does it deny knowledge the ability to access suffering or claim that pain falls out of the realm of language – it does not, in other words, entirely subscribe to the views of pain’s inexpressibility that are familiar to us from Elaine Scarry’s work (1987; 1994). Instead, the emphasis I put on the inscrutable mode of suffering and pain steer us towards a revived, new, phenomenological way of linking the body and the mind. This is the mode of suffering of which one is not aware, not in regard to the suffering of another, but to the suffering of oneself. For we are soon to realize that moments of intense anguish, the concrete unbearable realities of distress, painful events saturating our minds, can interfere with the dominating intellectual process and remain concealed during the period of their occurrence. Their inaccessibility is not a sign of the failure of thought and language, since nonverbal expressions of pain (in infants for example) can be quite telling. Body language, such as facial gestures, expresses the individual’s reaction to painful events so that attention to the subjective behavior understood through speechless acts allows us to peek into the tormented self. In both cases of the verbal and the non verbal, the problem of remaining in ignorance of the pain of another is not primarily a consequence of the other’s inability to express and hence convey the experience of suffering - it is mainly the outcome of an affliction so big that it disables the self, making it difficult to even know your own pain. This is explained by the fact that the resistance of pain and suffering to intellection and clear articulation exhumes a larger pre-linguistic, pre-representational level of human experience. In attempting to unravel the world of those in pain, the most crucial aspect is to no longer limit ourselves to what is clearly heard or stated, focusing instead on the unvoiced. Cases of unvoiced suffering are not symptoms of human disorders, but rather exemplary manifestations that

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may be seen as paradigms of the pre-reflective experience. Silent pain and unarticulated suffering are associated with the inability to translate certain sensory or emotional experiences into speculative and communicable contents that testify to our awareness and clearly represent the situation. Yet, the problem with these model cases is that they are not sufficiently recognized, and when recognized, they are treated as puzzling conditions in the area of pain research, as mere exceptions that scientific progress should ultimately be able to resolve. Consequently, the possibility of regarding these silent cases as fundamental structures in the general layout of suffering is strikingly absent from current empirical and theoretical perspectives on the topic. Such an attitude is misleading, as it does not take into consideration that a person unaware of their own torment may be engaged in a totally different mode of being, which also characterizes, less overwhelmingly, the more familiar kinds of suffering. Discussing three factors that sustain this assertion, I will show how the endured and felt can be deployed precisely thanks to these puzzling limitations, and how such essential attributes push in the direction of a greater dimension that cannot but leave them obscure.

Between Knowledge and Knowing The elementary question “Are there any limits to knowing suffering and pain?” is prompted by the realization that the active sense of experiencing pain is not always compatible with self-awareness. This may appear to be surprising, since our assessment of being in pain (physical or emotional) is the most basic condition for confirming this state, a discernment which is taken to be undeniable even when no objective measurement can be found to support the first hand, subjective report by the individual. The falseness or believability of reports of pain can obviously be envisaged in the absence of clear bodily symptoms or strong psychological evidence, although in the vagueness of certain conditions, mysterious to the subject as well as to the listener, it is the haunting sense of uneasiness and distress that serves as basis for confirming the presence of pain. Whether the evasive suppositions drawn from first-order phenomenal experience and introspective observations can become assessed knowledge is another matter, and one which exhorts us to recognize the difference between (self) knowing and knowledge, between sincere claims that provide reliable self ascriptions that are assumed to be true and verified observations that are credited with providing truthful information. The perplexity in these circumstances comes from the possibility of a thought or a statement being

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true even in the absence of veridical evidence, such as, for example, a trivial situation when a child’s complaint of a stomach ache leads the parents to wonder whether the child really refers to a sensation of pain or is just marshalling an excuse to skip school. Such is also the medical quandary associated with a patient’s insistence on feeling profound and intense pain throughout the body, leading medical personnel to ask whether this is an indication of fibromyalgia or an “all in the head” ailment of a dissatisfied middle-class white woman, as health professionals used to think until brain-scan technology was able to provide objective proof of the disease in the early 2000s. The problem of the adequacy of self-reports inspires the current efforts to link the first person (subjective) and third person (scientific) approaches to pain in consciousness studies. It plays an even greater role in the phenomenological debate on introspection and its truth-value for pain reports. Unlike Husserl, contemporary philosophers attempt to deal with the matter by arguing that introspection is already used in clinical and experimental settings, becoming part of the conceptual scheme of the scientific practice. This subjective mode is therefore no longer to be held to falsify reality and is to be considered above any suspicion (Price and Aydede versus Gallagher and Overgaard, In Pain, 2006). Yet it still allows doubts about whether the self-knowledge of one person can be acknowledged by the other or is to be seen as unreliable unless supported by external indicators. Further investigation may eventually discard the sufferer’s report, but because of the danger in failing to recognize the pain involved, or underestimating the subjective quality of a feeling that could be life threatening, its intelligibility cannot be a prime condition for its consideration. The conceptual translation of the lived experience helps to hinder understanding and, crediting Eliade’s historical view, to grant meaning to the bodily or mental distress. But, reversing the problem, no doctor or caretaker can deny the declaration of a person proclaiming to be suffering on the basis of a minimalist account of knowledge. And even though the other’s acknowledgment does not come into view here from the moral standpoint, ethical obligations and professional duties must continue to guide the interpretation of the narrated and confessed reality of the sufferer. For us, and however intellectually opaque these situations may be, the smallest possibility of a person suffering real agony demands that we banish the sense of the unknown and treat the statement about pain as potential knowledge. As a second step, if no clear signs are there to indicate the locus of pain or to unravel the experience of the completely impenetrable sufferer, the basis for the idea of having to act on the opaque is self-awareness. We

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know ourselves best, which shows why something may be right when it feels right to us and why awareness of our own condition or experience is a platform for connecting with an emerging illness or a non-exhibited emotional distress. When visible and verifiable proof does not exist, it is the accessible ground of one’s own experience, arising from the immediacy of auto-affection, from being affected in our innermost self (Jean-Luc Marion 2002: 231) that allows for the slow accumulation of records to form an understanding. Hence, in silent and voiceless pain, knowing when there is no showing is enabled by reflective self-awareness, regardless of any criteria of adequacy and intelligibility. This is not to reject the notion of truth or the possibility that such a vague recollection may be delusional, hallucinatory or deranged. But in respecting this inner form of articulation, the undeniable sense of being hurt should position the doubtful content that comes to mind as secondary and the alarming signal of distress as primary. For it is precisely that same inner sense that means the disbelieved person never tires of telling about her excruciating pain, recounting how “it took over 37 doctors over a two-and-a-half-year period before [she] even heard the word ‘fibromyalgia’, and started to think maybe there wasn't anything wrong with [her], and that [she] was just imagining these symptoms” (Lara 2008).

Unaware Suffering Our ability to notice our pain depends on the urgent sense of being violated within. Yet what radicalizes our phenomenological inquiry is finding that awareness is not necessarily a constitutive factor of suffering: a person may well be experiencing real, ceaseless torment without being able to recognize and hence communicate his pain. This brings us to the heart of our subject, since this is no longer a question of interpreting the condition of another based on limited knowledge but one of admitting to the emergence of an affliction that is not perceived or processed and therefore acknowledged by the individual’s own mind. Several recurrent psychophysical conditions may be given as examples, but the most remarkable one is attributed to secondary alexithymia (the term derived from the Greek for “no words for feelings”), often registered in persons with cancer, diabetes or Parkinson’s disease, and even more often among victims of rape, political violence, or other types of trauma. Whereas primary alexithymia is a matter of personality traits or psychotic profiles, secondary alexithymia is a response to an emotional trauma that may occur to any person undergoing acute suffering. It is characterized by a temporary or prolonged inability to identify, understand, or describe one’s

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own feelings. The term alexithymia was first coined by the Harvard psychiatrist Peter Sifneos (1972; 1996) in order to explain why people who feel strongly do not have words to name their emotions. Due to the lack of reports of such circumstances, the obvious question to be asked is: how do we know whether a person is experiencing real agony if they cannot communicate that they are suffering? And more specifically, how can we know whether a person is undergoing acute suffering, as in an alexithymic state secondary to trauma or disease, when failure to tell and recognize feelings is, by definition, part of the disorder? In fact, the disorder is characterized by a plethora of features, sometimes including a distress signal in the shape of mysterious bodily self-damage without any understanding or admitting to the reasons or to the nature of these acts. Being in great emotional pain, alexithymics can be found mutilating themselves while declaring that they are fine when interviewed by a doctor; they can put a big smile on a wounded face, or appear unconcerned when claiming to “have no idea” why they engage in recurrent self-destructive behavior (jumping from a high floor, incurring severe burns, or cutting themselves). These otherwise articulate and outgoing personalities are not able to explain or even concede any depressive, anxious, sad, or despairing feelings as motivating their selfharming impulses. In other cases, alexithymics are not only persistently incapable of expressing their emotions but also incapable of detecting them in others, let alone conveying empathy. Hence this cognitiveaffective dysfunction can be developed in the course of a disease, and since it is “possibly related to a protective denial of the significance and seriousness of the illness, it either disappears when the somatic illness ameliorates or may become chronic in those whose disease remains incapacitating” (Nemiah 1976). With such a condition possibly affecting anyone, the emphasis here is on not feeling yourself. The difficulty comes from having a feeling totally disconnected from any emotional cognition, and from its inwardly experienced phenomenality not being mentally linked to the phenomenon itself (pain). We think of this phenomenal pronouncement of suffering as a short circuit whereby an internal turmoil remains unnoticed even though gestures or acts betray it. The inability to understand and hence to describe the trauma is not the outcome of an inadequate assessment of pain or suffering. It is not a matter of a defiant report or of a dissimulation. What we face here is a subject in a swirl of feelings that may have trapped him. His appreciation of the lived experience in regard to himself is damaged because he seems not to have a coherent representative thought about his

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own state. The experience is not marked by lack of evidence, whereby a primal sense of distress gives rise to consciousness without reaching a certain degree of definiteness and coherence which transforms the first hand experience into a substantive content of thought (the knowledge criteria). In the Schalling-Sifneos revised personality scale (that allows us to assess the disorder), it is specified that alexithymia “is not the impossibility of feeling one’s emotions, but rather the impossibility of associating them with corresponding mental representations and thus verbalizing them” (Smith, M. 1992). It is not only lack of words, but first and foremost, lack of a clear mental view of what one feels: perceptible experience cannot be translated into reflective components that are then ascribed meaning. Certainly, when self-awareness and communication are impaired, delineating the subject’s condition becomes very difficult, so that only obvious objective signs of sickness or cognitive distortion (for example, limited emotional content in imagination processes or a functional style of thinking) allow one to unravel the closed world within which the sufferer is caught. But then, can we really see through someone who cannot see through himself? In mitigating the paradoxical character of this pre-reflective but salient condition, it is believed that, despite the vagueness surrounding the subject’s experience, the prognosis about his suffering should not be discredited even though the report comes from resourceful external agents rather than from the pained subject himself. A general understanding of the person’s agony is not rendered impossible by his lack of clear expressivity. A doctor may indirectly judge that his patient is in deep pain without the evidence of a cognitive or linguistic content, since facial gestures or unconscious somatic complaints (bracing, trembling, restlessness, wincing) may channel sufficient semiological load. The harmed self gives itself away to attentive observers in many unintended ways, revealed by the stream of manifestations speaking through us, and sometimes despite us, in an invading manner that confirms the implicit emergence of suffering. At the same time, the opaque nature of the unvoiced experience of distress raises the question of limited understanding due to lack of selfawareness in pain. Insofar as scientific research has mainly focused on the management (or lack of management) of this private experience in an attempt to define its preconditions, more needs to be said about the total phenomenological complex of this opacity. Hurtful emotions that I do not (or cannot) recognize as mine exist within me, bursting out in an obscure manner that interrupts intellection, subverting habitual interpretative patterns, verifiable knowledge, or even subjective insight. In the

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phenomenological bracketing this paper is proposing when reducing these human phenomena to their bare minimums, there seem to be no absolute indubitable conditions left to attest for suffering: one can suffer without being aware and one can suffer without knowing. Nonetheless, an examination of the widespread states associated with these veiled conditions exhibits two possible patterns. The first one admits that we may not always know of what a person’s internal experience of suffering consists, thus having to take his manifesting semiotics (gestures, sounds, disrupted speech etc.) as evidence of his perturbed state. In the second pattern, the person’s unvoiced and unconceived but felt torment remains perplexing, both to himself and to his surrounding, creating an obstacle for the development of an adequate understanding about his condition. To tackle this lack of cognition and evasiveness, I propose a phenomenological explanation for the silent torments, challenging the existing scientific explanations in terms of psychophysical and neurological deficiencies. Indeed, brain studies have shown that some cases of alexithymia are neurological, caused by disrupted neural structures, genetic abnormalities, or brain damage (Jessimer et al. 1997; Williams et al. 2009). Other cases are psychologically based, resulting from post-traumatic stress disorder, a terminal illness (McDougall 1989) and even cultural or educational upbringing (Fukunishi et al. 1997; Taylor et al. 2003). At the same time, the condition can befall any person going through an indigestible experience, and its features must therefore be regarded as constitutive features of the phenomenal experience of pain and suffering in general. From the perspective of the holistic experience, which includes the limiting boundaries enclosing our thought and speech, we must realize that these are not simply inabilities curtailing the reflexive elaboration of life processes, but rather essential traits of the phenomena. Secondary alexithymia is indeed an extreme case, but it is by no means exceptional, since suffering may be physically and cognitively incapacitating as it results in the person’s (1) enhanced passivity; (2) reduction in ability to respond, and (3) saturation of the mind, causing deficiency of content. Even more crucial, these three major attributes, which together explain the uniqueness of such an unintelligible state, are nothing but the fundamental components inherent to the nature of suffering itself.

Why Pain and Suffering Can Be Completely Non-Sentient Passivity, which is inherent to our receptive way of being, is deepened by pain. The etymology of the term is revealing: linguistic records from as

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early as 1388 show that suffering is identified with passivity (Jacob 1871). Hundreds of years before the meaning “not active” was first recorded, passivus stood for “capable of feeling or suffering” (pass is associated with pati, “to suffer”). As language evolved, the primary denotation became secondary, yet the word retained the connection between pain and being subjected to an experience. In modern thought, what differentiates suffering and passivity is their intensity. We are constantly affected by the external world, and when we are no longer capable of resisting the multiple invading stimuli, we become receivers who feel relentlessly violated. When this happens, the passive automatized receptivity turns into hyper-receptivity, converting us, the mentally and physically active subjects, into vulnerable beings inhibited by the power of pain. This shift occurs when the usual passive-active balance in our interaction with the environment breaks down so that in the tug of war between the two fundamental forces (undergoing and overcoming), the individual finds himself subjugated by pure endurance. Receptivity turns then into total passivity, involving a degree of unrestrained, unassimilated distress that is not to be taken as the simple outcome of typically inflicted impressions. Unlike ordinary occurrences of daily experience that nourish us regularly (stimuli, sensation, thought matter, etc.), elements of pain affect us with such intensity that we can no longer act upon them in return. In the writings of contemporary French philosophers (Emmanuel Levinas, JeanLuc Marion, Paul Ricoeur, and Maurice Blanchot), comprising a corpus that I read as “The Ethics of Suffering”, the notion of suffering is identified with radical passivity precisely for these reasons (Bustan 2009). In Levinas’s words, which have since become canonical, the vulnerability and exposure of the self in suffering comes under the banner of “a passivity more passive than all passivity” (1991). What causes this radical state in suffering is not only the total physical and mental exposure. To be precise, the degree of infliction does not prevent the individual from being generally active, but it precludes him from being reactive in response to what he must bear. We are constantly touched by a world that is affecting us, but then, when no longer capable of taking on the multiple lived stimuli invading us without release, we become receivers who feel relentlessly violated. In such a change, the passive automized aspect of receptivity appears as hyper-receptivity, converting the mentally and physically reactive subjects that we are into vulnerable beings inhibited by the power of pain. Exhausted and exhumed, we are no longer capable of filtering life’s events in a selective-protective manner, and only when we finally manage to overcome this critical point and regain balance can the healing process begin.

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Admittedly, a person’s immersion in a state of suffering may depend on the individual’s constitution (prior history; biophysical, psychological, social and environmental influences). In this respect, it is his overall psycho-physical unity that makes a person’s sensibility more or less inclined to being defeated by trauma or sickness. At the same time, the acute distress goes beyond the boundaries of a person’s specific character and disposition. It is a meeting point between the situational and the individual in the process of an increasing vulnerability that is often difficult to predict (despite the fact that prior information about the condition could announce a person’s likelihood to be affected), and precisely because the severe state appears insomuch as it happens. It is therefore not simply a question of subjective limits, nor exclusively a matter of forced resignation owing to the strength of the individual. Carrying the explanation of the hurt all the way into extreme passivity shows how being passively riveted in one’s own hell is first and foremost a feature of the phenomenal character of the experience itself, here and now, not one’s own character traits. Moving from the situational to the personal in suffering, the pivotal point of the phenomenological account of the French corpus attributes this condition not only to the ceaseless blows (one sharp pain after another, a bundle of bad news) that a person cannot filter, but also to the identification with one’s present self: “It is in, by, and from myself that I suffer”, because it is through my own feeling body and wounded soul that pain reveals itself to me (Marion 2001: 92). As a result of “the impossibility of detaching oneself from suffering […] there is in suffering an absence of any refuge,” attributing all its acuity to “this impossibility of recoil” (Levinas 1987). The difficulty is double: the imposed flow of perceived stimuli and bodily sensation that are capable of awakening distress leave the subject defenseless, without any possibility of refusal or withdrawal, assigning him to a place that he “can neither deny nor shake nor flee.” Being the “milieu of manifestation” of pain, the I cannot but succumb to the felt body (Marion 2001: 94). Hence by definition, and without regarding the contingent qualities of the experience itself, to suffer means to find oneself in a radically passive mode. In this respect, suffering can be entirely non-sentient when passivity becomes so acute that we find ourselves not only physically transformed (diminished, tired, forceless, confused) but also mentally perturbed due to a deficiency of intuition. The situation of amplified distress may clearly be unpleasant to contemplate and in this respect, the desire to deliberately suppress thoughts in order to avoid confronting oneself while being subjected to the felt agony could explain the lack of self-knowledge. Except that in an extreme condition

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like alexthymia, the mental numbness described is totally involuntary. Its passive mode attests more to an unintended decline in the subject’s processing abilities than to a “strategic” conscious or unconscious coping mechanism. Insofar as we enlarge the spectrum of possible investigation to include the gray zones of lived torments, where the command of cognition is no longer assured and conceptual accounts of these experiences become uncertain, we benefit from the possibility of seeing beyond the boundaries of the reflective system (where everything is given from the dominating perspective of the mind). When pain has penetrated so deep, it may undermine all applicable cognition susceptible to selectively recording the harmful source in order to block its conduction. It has been said that one of the reasons for unknowable pain comes from its ultimate passive mode. This attribute is intertwined with a second characteristic referring to the attenuation in the subject’s forces, entailing a diminution in his power to act (physically as well as cognitively), which causes indeterminateness, vagueness, or unawareness regarding the sensed distress. In the surplus of overwhelming torment, the phenomenal mental content of suffering finds no active agent to guide it through the various representations of the experience, hence suspending an understanding of the phenomenal situation as a possible way to the reduction of pain. This does not mean that the most intensely felt is by definition completely nonintelligible. Rather, the hurt and diminished self, who cannot detach himself from the affliction, may not be able to employ the active procedure necessary for information processing, which would allow him to intellectually operate upon the reality he is subjected to. Powerless, the subject’s minimized ability to react by using mental envisioning for navigating the situation causes the shutting down of systems so as to maintain a level of functioning, low but enduring. The priority in attending to the lived experience rather than to forming a clear thought is a submission to the immediacy of the imposed pain: I find myself obliged to “deliver myself to it without condition or delay or distance” (Marion 2001: 93). Paul Ricoeur stresses the importance of narratives for gaining a better approach to pain, but like his contemporary, phenomenologist Jean-Luc Marion, he too points to the difficulty of avoiding the natural sovereignty of instancy (the immediacy of the hurtful shock taking one over), which clearly impacts our ability to create a discourse due to the rupture in the duration necessary for storytelling, challenging our capacity to open up to knowledge and language in the midst of the enduring act (Ricoeur 1994). The third feature responsible for the enigma in knowing our suffering is saturation. This phenomenological observation of radicalized states, which revives and disputes the traditional stance of Husserl, enlarges our

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field of investigation by including cases that testify to the lack of consciousness about one’s own state due to a paralyzing overburden. One of the guiding ideas of Marion’s theological phenomenology is that certain phenomena operate upon us in an invading and overpowering manner, obliging us to accept our intellectual deficiency, not because of the finitude of the mind but subsequent to the phenomenal encounter. Such encounters can start with the most ordinary (with a dazzling painting or icon) and end with the astonishing revelation of God. They also include the animation of the body submerged in the feeling of agony, grief or suffering (Marion 2001, 2002). Saturation happens in the face of the extreme form of a lived phenomenon whose field extends well beyond reflective experience, in which awareness might no longer play a role because the distress has suspended all appropriate reasoning and its inherent faculties. A person may thus find himself blinded by the irrepressible bursting of the sensations of pain. In these circumstances, the overload of what one can bear (saturation) “as one receives a blow, a shock, or an emotion” reveals a receiver who is entirely exposed to what he cannot capture (Marion 2002: 173). The uncontainable excess of such circumstances cannot be rationalized or explained: too much agony does not allow the subject to inscribe the intensely felt in a corresponding thinking process. “The suffering of bearing an impact too powerful to convert into the unfurling” visibility, in reality and in one’s mind, discards any translation of the experience into a visual or content–like matter that cognition could use in a representation format to construct even the slightest degree of knowledge (Marion 2002: 305). In this respect, saturation disqualifies any concept, or understanding, of what the mind is no longer able to depict or extrapolate. Obviously, this does not imply that in saturation a person cannot notice his own distress, but rather that the overpowering effect stops him from reaching its fullest sense. The deficiency caused by the excessive flux of what is given to the intuition prevents us from actively deploying what we passively receive, binding suffering to a zone of silence. Having now set forth the combination of the three components – passivity, reduced reactivity and saturation – that constitute knowledgelimiting suffering, we can say that their observed intensification draws a portrait of this human condition in its outmost bareness and thus truthfulness but without any cognitive conditioning. By acknowledging that these components constitute the pre-reflective mode as part of our experience of the hurt, defined in this paper in terms of the vividly felt but unaware state (distinct from the pre-reflective bodily self-conscious when, for example, implicitly hearing a sound) (see Evan Thompson 2007), we

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learn to consider a different, yet more holistic manner of linking the body and the mind. We no longer look at the deficiency of knowing as lacunae, nor fear the indeterminate by labeling it as a mystery that must be solved. Instead, we consider it real suffering that speaks to us from behind closed doors, sometimes without any corresponding clear concepts, revealing the pre-reflective dimension of life that is asking to be integrated into our scientifically viable research. Furthermore, the frustration of the health professionals trying to clarify what is at stake for both the sufferer and his caretakers can be overcome when accepting that silence and lack of apprehension are rooted in these human phenomena. Our deconstruction of the structure of suffering must prepare us to break from the vicious circle of unraveling it at all costs, putting both the practitioner and the patient under a fair amount of unnecessary stress instead of incorporating into their care the idea that the unknown and unvoiced play an important role in the explanatory model of torment.

Works Cited Aydede, Murat, Ed. 2006. In Pain: New Essays on Its Nature and the Methodology of its studies. Cambridge, Massachusetts: MIT Press, 243-275, 277-291. Bustan, Smadar 2009. “L’ambiguïté d’une éthique de la souffrance dans la pénsée française contemporaine”, Maurice Blanchot et la Philosophie: suivi de trois articles de Maurice Blanchot. Eds. Eric Hoppenot and Alain Milon. Paris: Presses Universitaires de Paris Ouest, 179-198. Fukunishi, Isao et al. 1997. “Is alexithymia a culture-bound construct? Validity and reliability of the Japanese versions of the 20-item Toronto Alexithymia Scale and modified Beth Israel Hospital Psychosomatic Questionnaire”, Psychol Rep 80: 787-799. Jacob, André 1871. Encyclopédie Philosophique Universelle, Les notions philosophiques, dictionnaire 2: “Passio, passivitas (passion, passivité)”. Jessimer, Mathew and Markham Ryan 1997. “Alexithymia: a right hemisphere dysfunction specific to recognition of certain facial expressions?” Brain and cognition 34 [2]: 246-258. Lara, Jovana Feb. 1st 2008, “New Hope for Fibromyalgia sufferers”, interview of Lynne Matallana founder of the National Fibromyalgia Association (US). Los Angeles: KABC-TV/DT. Levinas, Emmanuel 1994. Une éthique de la souffrance. Paris: Autrement, 127-137. —. 1991. Otherwise than being or Beyond Essence. Trans. Alphonso Lingis, Netherlands: Kluwer Academic Publishers, 14, 50.

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—. 1987. Time and the Other. Trans. Richard A. Cohen, USA: Duquesne University Press, 69, 93. Marion, Jean-Luc 2002. Being Given. Trans. Jeffrey L. Kosky, Stanford: Standford University Press. —. 2001. In Excess. Trans. Robyn Horner and Vincent Berraud, New York: Fordham University Press. McDougall, Joyce 1989. Theaters of the Body: A Psychoanalytic Approach to Psychosomatic Illness. New York: Norton, 93-94, 103. Mircea, Eliade. 1954. The Myth of the Eternal Return. Trans. Williard R. Trask, Princeton: Princeton University Press, 97-98. Nemiah, John C. et al. 1976. “Alexithymia: A view of the psychosomatic process”, in O. W. Hill (Ed.), Modern Trends in Psychosomatic Medicine. London: Butterworths, 434. Ricoeur, Paul 1994. La souffrance n'est pas la douleur. Paris: Autrement, 58-69. —. 1994. Resisting Representation. New York: Oxford University Press. Sifneos Peter 1996, “Alexithymia: past and present”, Am J Psychiatry 153 (7 suppl): 137-142. —. 1992. Oneself as Another. Chicago: University of Chicago Press. Scarry, Elaine 1987. The Body in Pain. New York: Oxford University Press. —. 1972. Short-Term Psychotherapy and Emotional Crisis. Cambridge, Mass.: Harvard University Press. Smith, Michael et al. 1992. “French translation of Schalling-Sifneos Personality Scale Revised and Beth Israel Questionnaire, 2 evaluation tools of alexithymia”, Encephale Mar-Apr; 18 [2]:171-174. Thompson, Evan 2007. Mind in Life. London: The Belknap Press, Cambridge: Harvard University Press, 264-265. Taylor, Graeme J. et al. 2003. “The 20-Item Toronto Alexithymia Scale. IV. Reliability and factorial validity in different languages and cultures”, J Psychosom Res 2003, 55: 277-283. —. and R. Michael Bagby 2000. “An overview of the alexithymia construct”, The Handbook of Emotional Intelligence. Ed. Reuven BarOn and James D. A. Parker. San Francisco: Jossey-Bass Inc., Ch. 3, 41-67. —. et al. 1997. Disorders of Affect Regulation: Alexithymia in medical and psychiatric illness. Cambridge: Cambridge University Press. Williams, Claire et al. 2009. “Alexithymia and emotional empathy following traumatic brain injury”, J Clin Exp Neuropsychol 32 [3]:111.

SCREAMS, SHOUTS AND SILENCES: THE NOISE OF THE WOR(L)D AND THE IMPOSSIBILITY OF NARRATIVE MARIJKE BOUCHERIE

La parole éthologique, au contraire, est incarnée. Elle est faite de sonorités, de mélodies, rythmées par des silences, dans un co-texte de mimiques faciales exprimant des émotions verbales, de gestes soulignant ou ‘contredisant’ le discours, et de postures donnant la parole à l’espace. (Cyrulnik 112)

When hearing of a conference called “Narrative and Medicine: Illness and Dialogue”, I thought it useful to consider and bear witness to clinical contexts in which, for different kinds of reasons, language is absent and therefore dialogue or storytelling cannot exist. I was inspired, as so often is the case, by my own experience of living with my son, who was diagnosed with autism at the age of three. The complexity of the diagnosis called “autism” remains an open question and is nowadays approached by broader concepts like the “Autism Spectrum” or “Asperger’s Syndrome” which, at the time – thirty five years ago – did not exist. I sympathize, however, with the indignation of the psychoanalyst and ethologist Boris Cyrulnik when he speaks of the aesthetic and cultural idealization of children with autism: “les enfants autistes…vedettes culturelles” (Cyrulnik 1983: 290). I would also agree with him that madness is a radical challenge to the way we perceive ourselves and others and that it may be a “normal” condition (294). This suggestion is strongly conveyed in the title of a book by the Flemish psychotherapist Paul Verhaeghe: On Being Normal and Other Disorders (2008).1 Not surprisingly, the study puts into perspective the American classification of psychiatric diseases, the Diagnostic and Statistical Manual of Mental Disorders, “usually known as the ‘DSM’, first published in 1952, and most recently reedited as the 1

Diagnostic and Statistical Manual of Mental Disorders (1952), re-edited in 2000 as DSM-IV-TR (Verhaeghe 2008: 25).

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DSM-IV-TR (2000)” (Verhaeghe 2008: 25). Verhaeghe calls the DSMDiagnosis “The Anonymous New Master” (24) and is clear in suggesting that the American version of the original International Classification of Diseases (ICD) “was subsequently exported through the rest of the world through the usual (i.e., pharmacological) promotional channels to the rest of the world” (25). Between the scientific description of a disease and the lived experience of the person suffering from it, a complex and painful reality must be lived through, a challenge not easy to respond to, especially when the disease becomes “fashionable” and invites projections of romantic notions of silence and completeness. That is the reason why, when my son was fifteen, I wrote a text for a Portuguese newspaper about the short-lived relief which the diagnosis provides and the subsequent perplexities that life thereafter presents and keeps presenting.2 I called the text: “The strange surprising adventure of living with an autistic child” because, at that time, I was lecturing about Daniel Defoe’s novel Robinson Crusoe (1719):3 the analogies between the efforts for survival of Defoe’s hero and the way I was experiencing life with my son were striking. I now understand that the real analogy is between the eighteenth century hero on a deserted island and my son’s attempt to understand the “common” sense interpretation of the world he was born into. What I discovered in the new life my son had opened up for me was a new way of listening, a new way of speaking, a new narrative as it were, and this is what I want to talk about. It is an impossible narrative, because it cannot be, nor does it have any pretension of being, the story that one would wish to hear: the story of a narrator whose main characteristic is his inability to narrate, i.e. to represent himself and others in words and connect those in meaningful structures. The inevitable question that arises therefore is how to speak “in the place” of the speechless without doing him or her violence; how to translate into verbal language the nonlinguistic ways of communicating of someone else; how to imagine someone whose disability consists in not being able to imagine, someone who cannot “think the mind of another” (Frith 258). 2

Marijke Boucherie, “As estranhas e maravilhosas aventuras de quem vive com uma criança autista”, Europeu. 22-11-1988: 18. English translation by Mick Greer. 3 The original title of Robinson Crusoe is: The life and strange surprising adventures of Robinson Crusoe of York, Mariner: Who lived Eight and Twenty Years, all alone in an un-inhabited Island on the Coast of AMERICA, near the Mouth of the great River of OROONOQUE; having been cast on Shore by Shipwreck, wherein all the Men perished but himself. WITH An Account how he was at last strangely deliver’d by PIRATES. Written by Himself.

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These are ethical questions that are common to all speech situations, but radically so in circumstances that involve asymmetric relationships of competence, power or authority. The ethical imperative to learn to listen to and interpret those who are unable to enter the realm of representation inevitably confronts one with the necessity to first learn to listen to oneself. And this implies not to lose contact with the stirrings of one’s body and to remain truthful to them. In other words, it is necessary to remain vigilant of the frailty of linguistic representations and to take into account the ways the body punctures the stories we tell about ourselves. That is the reason why in the context of a conference entitled “Narrative and Medicine” I feel the need to draw the attention to the speech situation in which narratives occur and to the physical interactions of the participants rather than to the narratives themselves: I would like to emphasize the ways “the body talks”. The first thing to consider is that language itself comes out of the body. J. B. Pontalis reminds us of the non-linguistic anchorage point of language when he writes: “words come from a space that is not language... it isn’t language that makes language” (51). This means that the moment we speak and enter the shared “illusion” (21) of language, we remove our body to a distance, and when in full health and security, may even forget that it exists. Yet, language so easily breaks down under a failing body, be it through illness, emotional upheavals or the spasmodic manifestations of the body. The ethologist Bracinha Vieira, for instance, is especially attentive to the fact that the convulsions of the body – laughter, sobs, orgasm – and other bodily manifestations like yawning and sleep make little of the symbolic endeavor we are all engaged in when speaking (Vieira 90). Looked at from another point of view, the strength of the body’s convulsive and lethargic movement shows how enormous the effort is of dwelling in the symbolic realm, of being human. To speak as a differentiated being requires constant vigilance. The interface between body and language remains mysterious. Neuroscientists speak of it in terms of connections between language and the brain, if only to conclude “that the recording of concepts by the brain remains mysterious (Damasio and Damasio 15). For a psychoanalytical theorist, like Lacan, the interface is a necessary gap between the “real”, the imaginary, and symbolic elaborations, so that entering into language always already presupposes entering “a structurally determined lack in the Symbolic order and hence in the Other” by a subject necessarily estranged from itself (Verhaegh 2009: 49). “Language is separation”, J.B. Pontalis writes in an eloquent passage in which he comments – aptly in the present

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context – on Lacan’s dramatic use of silence in his teachings, which increased as he grew old. Could silence really be what would at the same time threaten and denounce the abuse of language? The paradox is that we commit this abuse of language to remedy its falterings, its internal void, its violent or sweet melancholy. We want to grant it an indisputable authority, we foolishly expect to have the certainty of a thing, the presence of a body. And that is the moment when, out of too exclusive a love, we misunderstand it the most. For it often comes to mind that we are forever separated from language, because language is separation and tells only of separation. And if, while abandoning ourselves to its powers, which remain so close to those of magic, we accede to an unheard-of truth, are carried away and ravished by the beauty of language, that is because it is the distant, insistent echo of all our losses (164-165).4

To speak means to sever an imaginary union, to take one’s distance from one’s own body and to fill the void with a sign that represents what is no longer there. Yet elements belonging to the pre-symbolic body remain encrusted on the material support of linguistic signs and imbue semantic meaning with bodily traces such as sounds, intonation, rhythm… Julia Kristeva calls the dimension of language that connects “empty signifiers to psychosomatic functionings” the “semiotic” and takes it into account as a necessary accompaniment of “symbolic” (Kristeva 1983: 33). In “Stabat Mater”, for instance, a text on motherly love, Kristeva illustrates the distinction by producing two discourses with similar meaning but graphically divided into two columns running alongside each other on the same page without touching: on the left stands the “female” text, printed in bold, the text driven by the energy of imaginary fusion; on the right, the female text is translated (theorized) into the dominant mode of western logos-centred discourse. In the conclusion of the “motherly” part, Kristeva warns against the dangers that lurk in a love that tends to annihilate difference, but at the same time she reminds the reader of its peculiar strength: Mais c’est là aussi que trouve refuge l’être parlant lorsque craque sa carapace symbolique et apparaît cette crête où sa parole fait transparaître sa biologie: je pense au temps de la maladie, de la passion sexuelleintellectuelle-physique, de la mort… (Kristeva 1983: 327)

It is no coincidence that Kristeva – a Bulgarian who emigrated to France, the French language and her own scientific idiolect – was one of the first 4

Emphasis in italics in the text; emphasis in bold mine.

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to integrate the presence of the body into her theoretical writings. She knows what it takes to leave the body behind when speaking a foreign tongue: she values what gets lost in translation (Hoffman 1991). One is here reminded of Thomas Mann’s character in Der Zauberberg, Hans Castorp, who declares his love for Madame Chauchat in French and not in German, because the foreign tongue provides him with the necessary protection: “Parler Français, c’est parler sans parler, en quelque manière” (Mann 719).5 When approaching the topic of “Narrative and Medicine”, and bearing in mind the “maternal” dimension of language and the way it may interfere with the symbolic realm of representation, I immediately thought of contexts in which words may say what the body belies: narratives punctured by silences or stuttering, or, on the contrary, narratives that are too fluent and articulate and hide the speaker rather than disclose him. More than the narrative itself, thus, I emphasize the way body language may underline or sabotage what the words want to and cannot convey. If attention to body language is something that is always already present, nowadays, it can take extreme forms, in both everyday life and therapeutic settings. In a recent analysis of “actual neurosis”, the Flemish psychoanalyst Paul Verhaeghe draws attention to the increasing difficulty felt by some patients to “translate their problems into words”, a problem that has received the scientific denomination of alexithymia, “meaning [...] a cognitive incapacity to verbalize affects and emotions” (Verhaeghe 2009: 204). As a consequence, to establish a working therapeutic relationship is the first requirement of the healing process and becomes both the means and the goal of the treatment (204). So long as the relationship is not established, “the patient barely listens to the content and meaning of what the other says, he or she listens much more to the form, style and pitch of our interventions than to the content of what we have to say, and this in 5

In an afterword to the English translation of The Magic Mountain, Thomas Mann writes: “Oddly enough, it is not difficult for me, but rather the reverse that I have to discuss The Magic Mountain in English. I am reminded of my hero, the young engineer Hans Castorp. At the end of the first volume, he makes an extraordinary declaration of love to Madam Chauchat, the Kirghiz-eyed heroine, veiling its strangeness in the garment of the foreign tongue. It eases his embarrassment and helps him to say things he could never have dared say in his own language. “Parler français”, he says, “c’est parler sans parler, en quelque manière.” In short it helps him over his inhibitions – and an author who feels embarrassed at having to talk about his own work is in the same way relieved at being able to talk about them in a foreign language” (719).

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combination with a constant attention to all non-verbal behaviour” (Verhaeghe 2009: 206-207). I made a long detour in order to make you and myself understand what happens when a parent6 comes into contact with a child that is not able to come into the relationship, who can interpret neither content nor “form”, neither “style” nor “pitch” nor even a facial expression and a gesture. (Therefore, an “expert by experience” who has shared the life of such a child might respond to Anne Enright7 that, yes, an emotion is already a story and so is perception: that when they are not made meaningful - be it pre-verbally or through symbols – in a relationship that “makes” sense, they coincide with the upheavals of the body or become disorganized noise that drowns the child.) For the child and the parent this “not being there to one another” is a disaster. The parent becomes mute. One imagines that sheer panic takes over the child’s body. The child does not scream: “it” screams the child; “it” bangs the child’s head against the wall, “it” engulfs the child in silences, or in convulsive laughter or in repetitive nonsense syllables. For neither the child is there nor the parent. “It” is and “it” is all-dominating and refuses all approaches. Holding arms provokes shrieks of panic, a look upsets, a mere step can bring disaster. The thing to do, so the parent senses, is to get to know the child, to learn what or who he or she is. The first requirement, a very difficult one and one that needs time and hard work, is to accept that one does not know one’s own child and that it is necessary to make its acquaintance, to be introduced to it. This means admitting that one’s child is not as other children. For the parent, this is a stern requirement. Salvation seems to come through the word “autism”: it is a beautiful word, exotic, scientific, and it covers the fear with the mantle of medical language and a proliferation of press releases and motion pictures. It makes the child like other children, but better: different but special. 6

I use the word parent to designate all the persons involved in the task of getting in touch with the person who seems to refuse all contact: mother, father, brothers and sisters, extended family, neighbours and friends, doctors, teachers, etc. 7 I refer to the quote of Anne Enright that is printed on the poster of the Conference “Narrative and Medicine”: “Stories, no matter how fake, produce a real biological response in us, and we are used to this; but the questions my nursing body raises are more testing to me. Do we need stories in order to produce emotion, or is an emotion already a story. What is the connection, in other words, between narrative and my alveolar cell?” I borrowed the term “expert by experience” from theories of social intervention; see www.themissinglinkeurope.eu and “Global Initiative in Psychiatry” (GIP) www.gip-global.org. The term “holding environment” belongs to the British child analyst Donald Winnicott.

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Besides, what other language is there? Should one say that the child is disabled or mentally ill or mad? If one were to use those words, what story would they tell? Old ghosts would arise that fill the parent with shame and swallow the child and make it disappear. As a parent, one needs time to abandon the words that are offered as explanations and to dare to follow the urge to acquaint the foreign creature, who, so the parent imagines or desires to imagine, would like to make itself known if only it could. But how shall one listen to a child that cannot bear to be touched and withdraws from language? There seems to be only one way: to follow the child to where it exists, to go to the no-place where the child seems to dwell, to learn to inhabit a new geography. The dislocation of the parent to where the child is, to the place of radical not-knowing, I now call the total shift. 200 ago, an English poet, John Keats, spoke of a similar place as “negative capability”: “Negative Capability, that is when man is capable of being in uncertainties, Mysteries, doubts without any irritable reaching after fact and reason”8 (Keats 43). More recently, the psychoanalyst Wilfred Bion, inspired by Keats’s concept, coined the sign “O” to designate that which escapes all attempts to be known: “the sign O, the unknown and unknowable” (Bion 27). The parent, however, is neither poet nor analyst, and joins the child in an archaic realm without possessing a point of reference. With the total shift, one abandons words. One is where the child is. All interpretations are suspended, all values, all emotions. The parent observes the child but does not know what to look for. He sees nothing, expects nothing, desires nothing. He registers what he deems to be mere facts: “the child wants me to keep a distance; the child wants me to wear blue; the child does not want me to make eye contact.” Screams are the compass, the measuring rod, the map. Screams set the limits, indicate the distance, point to what is wanted. Listening means getting acquainted with what is not there. Listening and seeing and sensing are fused in an extreme act of attention that involves the whole being and never guarantees an answer.9 8

John Keats, letter of 21, 27 (?) December 1817 to George and Tom Keats. Emphasis and upper case in the text. 9 “Acts of attention” is the term used by Elizabeth Sandie to describe the poetry of the British author U. A. Fanthorpe (1929-2010). U. A. Fanthorpe was a receptionist in a Neurological Hospital in Bristol where the observation of patients and doctors inspired her to write poetry: “only poetry could deal with this matter”, she wrote. See. M. Boucherie, “Art and Virtue. ‘The Doctor’: a Poem by U. A. Fanthorpe, a Painting by Sir Luke Fildes”. Homenagem a Maria Helena Paiva Correia. Org. Alcinda de Sousa e.a. DEA-FLUL, 2009: 631-649.

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While the parent is occupied following the trail of screams, a change occurs in the child, almost immediately. The child senses that the parent has shifted, that the parent has stopped imposing his interpretation, his will, his desire. The child quietens down. It becomes calmer. The child now tolerates the parent. The hard work of making contact can begin. Contact begins with sounds, tone, rhythm and pitch. Not words. Screams become cries, cries become songs, songs have rhythm and melody, melody carries words. The parent sings and the child relaxes. The parent sings in his mother tongue, which is not the mother tongue of the child. The child does not mind, it does not mind words. They are sound objects made to repeat and to throw back to the parent, and thus make eyecontact possible, a diminishing of distance, almost an approach. Who knows, perhaps the foreign sounds do not frighten the child because they are foreign. But they create a dimension of contact, an interchange of quick looks that become gradually more confident and allow for the first timorous touches.10 Eventually, words begin to grow on this chaotic and rich soil, but they seem to remain foreign objects without resonance and without meaning. The parent now engages in mapping the world in words. Emotions are still kept separate and remain restricted to the sound-games. As to words, the parent tries to bend articulate sound into meaning, as if he were “the missing link”11 between child, word and thing, the conceptualizing link. Bearing in mind Antonio and Hanna Damasio’s description of the three groups of neuronal structures that interact in the treatment of language, it would seem that the parent takes upon him what the child’s brain refuses to accomplish: to upgrade the first representation of the non-linguistic interactions between body and environment into higher categories and symbolic representations and to link these to articulated sound (8). The connection established by the expressive sound-soil is what binds the attention and makes the exploration possible. An amazing world opens up for both the parent and the child. The parent learns that people can be loveable because of their name, that a holiday destiny may be determined by the sonority of the place and that the work of memory requires real dislocation in space: “in search for lost time”, one travels in space rather than to write or read books. The parent, who used to take for granted the most basic concepts incarnated in words (say, the concept “table”) and to resent the “restrictive” frame of common sense, now understands that the sheer fact that people are able to use words to denote things and to establish contact with each other is more than a miracle. To be able to say: 10 11

What the paragraph describes corresponds to an ongoing process of many years. See footnote 9: www.themissinglinkeurope.eu.

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“this is a pencil” or “can you lend me a pencil?” or “I prefer a pen to a pencil” becomes the object of endless wonder, not only wonder at the workings of language but especially wonder and respect for all human beings and their amazing capacity to remain in life and in language. The child explores language by casting each word into a story. It writes (the child learned to read and write words – to join phonemes into units of blameless orthography – very early and all by itself) “texts”, each one dedicated to a new word, a new situation, a new person. For instance, there is the word “high” which has different degrees and may change into “low” as in “the second floor” which is “high” when considered from the first floor but “low” when seen from the third. Situations, descriptions and explanations are painstakingly recorded and translated into huge accumulations of new words. To his delight, the parent discovers that the very literal descriptions of the child can yield new metaphors to the eyes of the beholder. Such joy stimulates the child, who keeps telling the stories of words. And indeed, it seems that the sonorous and graphic explorations in words yield, little by little, the beginnings of a mental space. For instance, the parent knows that the signifier and the signified do not coincide. But now he sees that having mental space means the capacity to speak AS IF they did, to have interiorized the distinction to such a degree that one no longer has to make an effort to put them together when speaking. AS IF implies the capacity to simulate, to distance oneself from both the sonorous support of language and from meaning, to be where the word is not, to say the word “I” and enter the world of others. In a passionate attempt to enlarge the child’s inner space, the parent brings the child into physical contact with all kinds of people, many different situations and every object, forcing names on persons and things, singing them, shouting them: “table, chair, boy, father, Johanna, immediately”. The child, delighted with the voice modulations, shouts back, repeating the words, deliberately changing the pronunciation, provoking the parent’s correction. Thus in playing “a game of pronunciations”, parent and child engage in “dialogue”: the one proposes a sound, the other corrects it, proposing another. This is what people do when they talk. The parent and the child talk: on different words in different languages, on the combination of phonemes in the Portuguese language as opposed to phonemic combinations in Dutch, French or German, on the endless variety of proper names. Living in the land of language is easy; crossing the border to the foreign countries of living people, changing places and moveable objects, is hard and cannot be “told”. It must be “done”.

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In the meantime, the language games continue. Indulging in nonsense syllables, parent and child make “sense” happen.12 One by one, each word falls into place and is interiorized. One almost hears the “click” when it happens. The slow and gradual process of the acquisition of thought through sound is almost physically noticeable, the more so because the child now names aspects of himself, says his own name, contextualizes his own “odd” behavior. For instance, he marks the periods of his longed for withdrawals by saying goodbye to whatever situation he is in with the announcement: “Now, I’m off to think about my life”. “Thinking about life”, which in practice means standing still in a dark room with the eyes closed, becomes a necessary activity that is meaningful for both the child and the parent. The parent can only guess what is going “through the mind” of the child, but he knows that the non-activity he is engaged in is deeply meaningful and no longer feels threatened by a son who is “different”. As the feast of words keeps growing, the child grows up into a man. He has a name. He is a person. And he talks. He uses words with great economy and accuracy. Language remains monolithic in human contact but becomes quite sophisticated when it flees free from emotions and can explore new concepts. However, a rich emotional communication remains in place based on intonation, sound and color. The nourishing ground of the language is all there, conveying a world full of meaning and capacity for joy and pain. The parent’s profession is to study words and stories. But it is the child who makes the parent aware of how amazing language is and how speech is linked to the communicative power of the body. The child introduces the parent and his friends to languages they did not know existed and helps them to look at the world and at each other in new and unexpected ways. The parent and his friends have become the apprentices of new ways of listening and speaking and now “see what it means” when sound and color and touch create new kinds of thinking, new ways of communicating. The child has taught and teaches that the possibilities of being human are manifold and that to listen to one another and to call forward a person reluctant to come into language is within the range of everyone, be they doctors, poets, philosophers or patients.13 12

The communicative value of nonsense syllables in therapeutic settings has been commented upon by A. Pietropinto, (Petzold 387-411). See also Boucherie 2009. 13 The last paragraph is inspired by Wittgenstein (“I see what you mean”), Iris Murdoch, Nuns and Soldiers, Primo Levi, If this is a Man and Manuel Silvério Marques who believes that one must dare to “invent” the person who can no longer talk for himself and tell his or her own story.

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Works Cited Bion, Wilfred R. 1970. Attention and Interpretation. London: Maresfield Library. Boucherie, Marijke 2009, “Art and Virtue. ‘The Doctor’: a Poem by U. A. Fanthorpe, a Painting by Sir Luke Fildes”, Homenagem a Maria Helena Paiva Correia. Ed. Alcinda de Sousa e.a. DEA-FLUL, 631649. —. 2009. “Nonsense and Other Senses”, Nonsense and Other Senses. Ed. Elizabetta Tarantino. Cambridge Scholar’s Press, 259-274. —. 1988. “As estranhas e maravilhosas aventuras de quem vive com uma criança autista.”, Europeu, 22 Novembro, 18. Cyrulnik, Boris 1995. La naissance du sens. Paris: Hachette Littératures. —. 1983. Mémoire de singe et paroles d’homme. Paris: Hachette Littératures. Damasio, Antonio & Hanna Damásio 1997. “Le cerveau et le langage”, Les langues du monde. Dossier Hors-Série, Octobre, 8-15. Defoe, Daniel 1985 [1719]. The Life and Strange Surprising Adventures of Robinson Crusoe. Ed. with an Introduction by J. Donald Crowley. Oxford: The World’s Classics. Frith, Uta 1996. L’énigme de l’autisme. Trans. Ana Gerschenfeld. Paris: Éditions Odile Jacob. Hoffman, Eva 1990. Lost in Translation: a Life in a New Language. Penguin Books. Keats, John 1990. Letters of John Keats. Ed. Robert Gittings. Oxford: OUP. Kristeva, Julia 1983. “Evolution in Poetic language”, The Portable Kristeva. Ed. Kelly Oliver. New York: Columbia University Press, 2392. Kristeva, Julia 1983. Histoires d’amour. Paris: Éditions Denoël. Mann, Thomas, 1992 [1927]. “The Making of the Magic Mountain“, Afterword to The Magic Mountain, Trans. H. T. Lowe-Porter. New York: Vintage Books, 719-729. Pietropinto, Anthony 1995. “Zugang zum Unbewussten durch NonsensePoesie. Ein Ansatz für literarische Werkstätten“, Petzold, Hilarion, Ilse Orth (Hrsg.), Poesie und Therapie. Über die Heilkraft der Sprache. Poesietherapie, Bibliotherapie, Literarische Werkstätten. Paderborn: Junfermann-Verlag, 387-411. Pontalis, J.-B 1993. Love of Beginnings. Trans. James Green and MarieChristine Réguis. Foreword by Adam Phillips. London: Free Association Books.

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Verhaeghe, Paul 2009. New Studies of Old Villains. A Radical Reconsideration of the Oedipus Complex. Foreword by Juliet Mitchell. New York: Other Press. —. 2009. Het einde van de psychotherapie. Amsterdam: De bezige bij. —. 2008 [2004]. On Being Normal and Other Disorders. A Manual for Clinical Psychodiagnostics. Trans. Sigi Jottkandt. London: Karnac. Vieira, António Bracinha 1983. Etologia e Ciências Humanas. Lisboa: Imprensa Nacional-Casa da Moeda. www.gip-global.org (“Global Initiative on Psychiatry”) www.themissinglinkeurope.eu (“Experts by Experience”)

CONTRIBUTORS

FERNANDA MOTA ALVES is Associate Professor of German and Comparative Sudies at the University of Lisbon, and the coordinator of the project “Aesthetics of Memory and Emotion” at the Centre for Comparative Studies. Her main research interests lie in Memory and Emotion Studies, representations of the modern and contemporary city and 19th century and contemporary German Literature. JOÃO LOBO ANTUNES has a degree in Medicine from the University of Lisbon (1968). He has worked in the USA, at the Department of Neurosurgery of the New York Presbyterian Hospital, and taught at Columbia University. He is currently Professor of Neurosurgery in the Faculty of Medicine at the University of Lisbon and Director of the Department of Neurosurgery of the Hospital de Santa Maria in Lisbon, and President of the Portuguese Academy of Medicine. Among his many articles and publications are four volumes of essays: Um Modo de Ser [A Way of Being] (1996); Numa Cidade Feliz [In a Happy City] (1999); Memória de Nova Iorque e outros ensaios [A Memoir of New York and other essays] (2002), and Sobre a Mão e outros ensaios [On the Hand and other essays] (2005). MARIA ISABEL BARBUDO is Associate Professor with Habilitation in the English Department of the Faculty of Letters, University of Lisbon, and has been a researcher of CEAUL/ULICES since its foundation. She has taught undergraduate courses on English Literature from the 16th to the 20th century, and also on English Cinema. In postgraduate courses she has focused mainly on British Drama and Cinema. Besides some prefaces and several articles and essays published in specialized journals, she has published a book on British Comedy of Manners (A Comédia de Costumes Britânica. Um Estudo sobre o Entrecruzar da Ética e da Comédia, Lisbon: Centro de Estudos Anglísticos da Universidade de Lisboa, Cadernos de Anglística, 2010). As a CEAUL/ULICES researcher, she has also devoted herself to the translation of British plays into Portuguese, namely The School for Scandal by Richard Sheridan (A Escola da Má-Língua, Lisbon: Centro de Estudos Anglísticos da Universidade de Lisboa, Textos Chimaera, 2012) and A Passage to India by Santha Rama Rau (Uma

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Passagem para a Índia, Lisbon: Centro de Estudos Anglísticos da Universidade de Lisboa, Textos Chimaera, 2012). MARIJKE BOUCHERIE is Assistant Professor at the University of Lisbon and researcher at ULICES – University of Lisbon Centre for English Studies. Her research topics include the Literature of Nonsense and the communicative potentialities inherent in language form, and Canadian Literature. Some of her main publications are: “Nonsense and Other Senses”, in Elizabetta Tarantino (Ed.), 2009, Nonsense and other Senses. Regulated Absurdity in Literature (Cambridge Scholars Publishing), Ch. XIII, 259-274; “‘Peter Ibbetson’ or the Limbo of Memory”, Revista AngloSaxónica II [18], 2003, 213-230, and “Dissemination: Dickens, David, Mr. Dick and Derrida”, Revista Anglo-Saxónica II [16/17] (Lisboa: Edições Colibri, 2002), 382-408. HILLEL D. BRAUDE is a philosopher of medicine and a medical ethicist. He completed a PhD in History and Philosophy of Medicine, the Biological Sciences and Bioethics, and a Postdoctoral Fellowship in Neuroethics at McGill University’s Biomedical Ethics Unit, and another Postdoctoral Fellowship in Religion and Medicine with McGill University’s Religious Studies Faculty. His current research focuses on affect, intentionality and automatic elements of cognition in relation to clinical reasoning, research ethics, and moral philosophy. Among several journal articles and book chapters, he has published: “Human All Too Human Reasoning: Comparing Clinical and Phenomenological Intuition,” The Journal of Medicine and Philosophy (2013, doi: 10.1093/jmp/jhs057); “Between and Beyond: Medicine and Narrative in Dick Zaner’s Phenomenology,” Clinical Ethics and the Necessity for Stories: Essays in Honor of Richard M. Zaner, Eds. Osborne P. Wiggins and Annette Allen (2010, Springer Press: 119-138), and a book entitled Intuition in Medicine: A Philosophical Defense of Clinical Reasoning (The University of Chicago Press, 2012). SMADAR BUSTAN is a philosopher who joined the Psychophysiology and Neurophysiology Laboratory at the University of Luxembourg to conduct experimental studies on pain and suffering. She is also the Founder and Coordinator of the Interdisciplinary and International Program on Suffering and Pain. In 2005, she received a PhD in philosophy from both the Sorbonne Paris IV and the University of Tel-Aviv (summa cum laude). She is working on a theory on pain and suffering that is now being tested experimentally in the framework of the PASCOM collaborative project between the University of Luxembourg and the

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Contributors

Central Institute of Mental Health in Mannheim, Germany. Since 2011, she has been an associate member of the Philosophy and Sociology Department (SND, Sciences, Norms and Decisions) at Sorbonne University. She is the author of De l'intellectualisme à l'éthique: Emmanuel Lévinas et la phénoménologie d'Edmund Husserl (Université Paris-Sorbonne, 2005). TERESA CASAL is Assistant Professor at the University of Lisbon and researcher at ULICES – University of Lisbon Centre for English Studies where she coordinates a research group dedicated to Irish Studies and the New Literatures in English. Her areas of research are contemporary Irish literature and medical humanities, with a focus on the interplay between fiction and non-fiction, and on the uses of narrative as a form of knowledge. Her recent publications include “Inhabiting Wounded Bodies”, in Pain: Management, Expression, Interpretation, Eds. Andrzej Daczak and Nicola Lazenby (2011), and “‘When you look through the eyes of another’: Mary and Lydia Cassatt in Art, Life, and Fiction”, in Relational Designs in Literature and the Arts: Page and Stage, Canvas and Screen, Ed. Rui Carvalho Homem (2013). She is co-editing, with Peter Bray, Beyond Diagnosis: Relating the Person to the Patient – The Patient to the Person (forthcoming in 2014). RITA CHARON is Professor of Clinical Medicine and Director of the Program of Narrative Medicine at the Columbia University College of Physicians and Surgeons. A general internist with a primary care practice in Presbyterian Hospital, Dr. Charon took a PhD in English when she realized how central storytelling and listening to stories are to the work of doctors and patients. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She is editor-in-chief of the journal Literature and Medicine and Principal Investigator on research projects that study patient-physician communication and the outcomes of narrative training for medical students and health professionals. Her work in narrative medicine has been recognized by the Association of American Medical Colleges, the American College of Physicians, the Society for Health and Human Values, and the Society of General Internal Medicine. She is the recipient of a Rockefeller Foundation Bellagio Residence and a John Simon Guggenheim Fellowship; the author of Narrative Medicine: Honoring the Stories of Illness (Oxford University Press, 2008) and co-editor of Psychoanalysis and Narrative Medicine and Stories Matter: The Role of Narrative in Medical Ethics (State University of New York Press, 2008).

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LAMBROS COULOUBARITSIS is Professor Emeritus at the Free University of Brussels and has published the important Histoire de la philosophie ancienne et médiévale, Figures illustres (Grasset, 1998). He is the author of numerous other books, including L'avènement de la science physique (Ousia, 1980), Mythe et Philosophie chez Parménide (Ousia, 1986) and Aux origines de la philosophie européenne, De la pensée archaïque au néoplatonisme (De Boeck, 1992, 3rd ed. 2000). He also translated, with an introduction and commentary, the second book of Physique d'Aristote, Sur la Nature (Vrin, 1992), and has published about 100 studies, most of which deal with old thinking. He is also the editor of the Revue de philosophie ancienne. MARIA LUÍSA COUTO SOARES is Associate Professor at the New University of Lisbon and a researcher in different areas: Philosophy of Knowledge, Philosophy of Language, Philosophy of Mind, Philosophy of Science, Contemporary Philosophy, tacit knowledge and its philosophical and epistemological implications, Literature and Philosophy (main authors: Hermann Hesse, Joseph Conrad, Italo Calvino), and the notions of organism: living being, automaton, body machine. Her recent publications include: Teoria Analógica da Identidade (INCM, 2000); Conceito e Sentido em Frege (Campo das Letras, 2001); O que é o Conhecimento? Introdução à Epistemologia (Campo das Letras, 2004); Expressões do Corpo (Fundação Eng. António de Almeida, 2004); Do outro lado do espelho. Linguagem, Pensamento, Acção (Fundação Eng. A. de Almeida, 2005) and A Dimensão Intencional (Instituto de Filosofia do Porto, 2010). ANTÓNIO MARTINS DA SILVA is a Doctor at the Santo António Hospital and a Full Professor of Human Physiology at the University of Oporto (Portugal). He is a researcher at ICBAS – Instituto de Ciências Biomédicas Abel Salazar, a member of the Executive Committee for the European Federation of Clinical Neurophysiology, and the coordinator of the Neurophysiology Service at the Santo António Hospital/Centro Hospitalar do Porto. He focuses his research activity in various fields of Neurophysiology, namely in brain function in health and in disease, in epilepsy and sleep, and in quality of life in chronic neurological disorders. Some of his recent publications include: (co-author) “Posttraumatic epilepsy”, in H. Stefan and W.H. Theodore, Eds. Epilepsy, Part II – Handbook of Clinical Neurology, Chapter 35, Vol. 108 (3rd series), 2012: 585-99, Elsevier; (co-author) “Is lower urinary tract dysfunction an early marker of Portuguese type familial amyloidotic polyneuropathy in women? – Preliminary results”, Arch. Esp. Urol. 2014; 67 (6): 557-564;

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Contributors

and (co-author) “Psychosocial factors as predictors of quality of life in chronic Portuguese patients”, Health Qual Life Outcomes, 2014 Jan 9; 12 (1): 3. He is also an Associate Editor of Seizure – European Journal of Epilepsy (Elsevier BV Publishers), and a regular reviewer for the Journal of Neurology, Neurosurgery and Psychiatry; Seizure, Revista de Neurologia; and Acta Médica Portuguesa. ANA RAQUEL FERNANDES is Lecturer in English at the Universidade Europeia | Laureate International Universities, Portugal. She is the author of What about the Rogue? Survival and Metamorphosis in Contemporary British Literature and Culture, Peter Lang, 2011 (Honourable Mention ESSE Book Award 2012) and O Pícaro e o Rogue. Sobrevivência e Metamorfose de Daniel Defoe a Julian Barnes, Colibri, 2006. She is a postdoctoral researcher at the University of Lisbon Centre for English Studies, currently working on the short story in contemporary British and Portuguese women’s writing. Her research project is being carried out in conjunction with the Cátedra Gil Vicente, University of Birmingham, UK, where she holds the position of Honorary Research Fellow. She has published a range of journal articles and book chapters on aspects of British and Portuguese contemporary fiction. Recently she co-edited special issue 10.3 of the journal Comparative Critical Studies (Edinburgh University Press). ISABEL FERNANDES is Professor of English at the University of Lisbon, Director of ULICES – University of Lisbon Centre for English Studies, and Scientific Coordinator of the FCT-funded project Narrative & Medicine: (Con)texts and Practices across Disciplines. Her fields of interest include Modernism and Postmodernism, Narratology and Literary Theory, and Interart Studies. She has published on several British authors, for instance: Emily Brontë; Jane Austen; D.H. Lawrence; Joseph Conrad, and A.S. Byatt. She has published three books: Olhar o Texto: para uma introdução ao estudo da literatura na universidade (2004); Critical Dialogues: Slow Readings of English Literary Texts (2011), and Literatura: a (in)disciplina na intersecção dos saberes e das artes (2011). ARTHUR W. FRANK is Professor Emeritus at the Department of Sociology at the University of Calgary. His first book was a memoir of his own experience with illness: At the Will of the Body (1991). He then wrote a study on how people narrate their own illnesses, The Wounded Storyteller (1995), complemented by a volume on the ethics of clinical relationships entitled The Renewal of Generosity (2004). His most recent

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work is Letting Stories Breathe: A Socio-Narratology (University of Chicago Press, 2010). In 2014 he will give invited lectures in Sweden, Norway, England, Spain and Portugal, and will also be Resident Fellow in Canadian Studies at UCLA. His interests include Narrative Bioethics, Clinical Education, and Healthcare Practice, especially end-of-life care. DIEGO GRACIA is Full Professor of History of Medicine at the Complutense University of Madrid, where he coordinates a master’s degree in Bioethics. He received a diploma in Clinical Psychology from the Pontifical University of Salamanca, and is also a specialist in Psychiatry. He is the Director of the Xavier Zubiri Foudation. He is Chairman of the Board of Trustees and Director of the Bioethics Institute of the Fundación de Ciencias de la Salud [Health Sciences Foundation]. His most important publications include: Etica y vida: Estudios de bioética (4 Vols., 1998); Medice, cura te ipsum: Sobre la salud física y mental de los profesionales sanitarios (2004), and Como arqueros al blanco: Estudios de bioética (2004). GERD HAMMER (PhD, Philipps-Universität Marburg/Germany, 1989) is a Professor at the Department for German Studies (Faculty of Letters, Univ. of Lisbon). He is also a member of CEC (Centre for Comparative Studies) as part of the project “Aesthetics of Memory and Emotions”. His research interests lie mainly in the area of Contemporary German Literature, ICT, Comparative Studies, and Media History. Currently he is also co-editor of REAL (Revista de Estudos Alemães, Journal for German Studies in Portugal). Two of his last publications are: “Do Androids Dream of Electric Sheep? Machines and Emotion”, in Estética das Emoções, Eds. Fernanda Gil Costa and Igor Furão (Ribeirão: Húmus, 283291, 2011), and “Memory, Oblivion, and the Internet”, in Filologia, Memória e Esquecimento, Eds. Fernanda Mota Alves, Sofia Tavares, Ricardo G. Soeiro and Daniela di Pasquale (Lisbon: Húmus, 399-413, 2010). PAULO JESUS is Assistant Professor at the Portucalense University Infante Dom Henrique. He has a degree in Psychology and a PhD in Philosophy and Social Sciences. He was granted postdoctoral internships at CREA (Paris) and at Columbia and New York Universities. His main publications include: Ética e Ciência (In Ética: Teoria e Prática, Beckert, 2011); Le Moi entre barbarie et messianisme: critique et jouissance du non-sens comme tâches éthiques (In Leben und Barbarei. Michel Henrys phänomenologische Kritik der gegenwärtiger Kultur, 2012) and La

292

Contributors

psycho-logique de l’Hypothèse-Dieu ou la nécessité d’une possibilite (In Kant: Théologie et religion, Theis, 2012). MANUEL SILVÉRIO MARQUES is a hematologist. He took a PhD in Medicine (Philosophy of Medicine), and has taught at the Medical School of the University of Lisbon in the fields of Medical Art, History of Ideas and History of Medicine. He has also worked at the Portuguese Oncology Institute. He is currently a researcher at the Centre for Philosophy of the University of Lisbon. He has been a member of the Cabinet of Philosophy of Knowledge (directed by Fernando Gil). He has participated in various national and international projects on Philosophy and History of Medicine and History of Science, and is currently leading a project (funded by the Calouste Gulbenkian Foundation) that aims to publish the medical works of Dr. José Pinto de Azeredo (Rio, 1764–Lisbon, 1810). M.S. Marques was the creator, along with Jorge Melo and Joseph M. Pereira de Almeida, of the first IPO Ethics Committee for Health, and he is a member of several committees of Ethics, including the National Council of Ethics for the Life Sciences. CECILIA BEECHER MARTINS is a Lecturer at the University of Lisbon, Assistant Professor at Instituto Superior Novas Profissões in Lisbon, and Researcher at ULICES – University of Lisbon Centre for English Studies. Her research topics include: Psychoanalytical Literary and Film Criticism, Narrative Medicine, Travel Writing and English Language Teaching. Some of her main publications are: “Meeting Movies applied to Elizabethtown”, in Ed., Frederico Pereira (2009); 26th Int. Conf. on Literature and Psychology, Lisbon: ISPA, 49-57; “Shared Identity Constructs and the Cognitive Triad Represented in Poe’s ‘Alone’”, in Ed., Barbara Cantalupo (2010); Edgar Allan Poe Review, Pennsylvania State University, Vol. 11, No. 1: 131-141, and “Looking at Film Through the Lens of Science”, in A Jangada de Ulisses (2011), Lisbon: CEAUL, 6978. LUÍSA AFONSO SOARES is Professor of Literary and Cultural Studies at the University of Lisbon and researcher at the Centre for Comparative Studies (CEC), where she works on the project “Aesthetics of Memory and Emotions”. Her teaching and research interests include 18th and 20th Century Literature and Culture, Interart Studies, Memory Studies, and Identity and Gender Studies. She has published several articles on these areas, such us: “Vicky Baum and Gina Kaus: Female Creativity on the Margins”, in Practicing Modernity. Female Creativity in the Weimar

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Republic, Ed. Ch. Schönfeld (2006); “Die unerträgliche Last der Erinnerungen: über Ruth Klüger und Imre Kertész”, in Rahmenwechsel Kulturwissenschaft, Ed. P. Hanenberg/I.C.Gil/ F.V.Guarda/F.Clara (2010) and “Das Archiv als Gedächtnis oder die Aporien der Erinnerungsarbeit. Zu Rayk Wielands Ich schlage vor, dass wir uns küssen”, in REAL. Revista de Estudos Germanísticos, Nr. 4. 2013. RICHARD M. ZANER received his BSc from the University of Houston in 1957. He went on to complete an MA degree in 1959 and a PhD degree in 1961 at the New School for Social Research in New York, receiving the inaugural Alfred Schutz Memorial Award for Dissertation. At the New School he studied with Aron Gurwitsch, Dorion Cairns, Werner Marx and Hans Jonas, all of whom continued to strongly influence his subsequent writings and teachings. He has taught at the Lamar State College, the Trinity University, the University of Texas, the Southern Methodist University and the State University of New York at Stony Brook. In 1981 he became the first Anne Geddes Stahlman Professor of Medical Ethics in the School of Medicine at the Vanderbilt University in Nashville. There he established the Centre for Clinical and Research Ethics in 1984. He is presently Anne Geddes Stahlman Emeritus Professor.

INDEX

"autopathographies", 71 "Cultural Materialism", 25 "culture wars", 26 "explanation and understanding", 250 "literariness", 24 "patient-centred", 90 "reason and cause", 244, 246, 247, 250, 252 Abrams, M. H., 22 "Age of Criticism", 22, 23 "Age of Reading", 22, 25 Agee, James, 140, 141 Let Us Now Praise Famous Men, 140 Alterity, 33, 227, 228 - and singularity of the text, 27 clinical -, 52 Epikeia (singularity, alterity), 62 Anamnesis, 112 Aneurysm, 132, 133, 135, 137, 139 Anscombe, G. E. M., 244, 245 Anxiety, 171, 174, 179, 181, 202 Arendt, Hannah, 45, 48, 52, 57, 60 Aristotle, 12, 13, 253 Poetics, 253 Arnold, Mathew, 67 Arnold, Mathew:, 67 Assisted suicide, 212 Astrow, Alan, 212 Attridge, Derek, 2, 27, 28 The Singularity of Literature, 27 Auden, W. H., 75 Autism, 274, 279 Autobiography, 175, 253 Nabokov, Speak, memory, 160 psycho-autobiography, 188 Bach, Johann Sebastian, 75

Bakhtin, Mikhail, 28 Balint, Michael, 114 The Doctor, his Patient and the Illness 1957, 114 Barenboim, Daniel, 80, 81, 91 Barthes, Roland, 24, 160 scriptor, 25 The Death of the Author, 25 The Pleasure of the Text, 25 Bellow, Saul, 70, 74 Ravelstein, 70, 74 Belsey, Catherine, 1, 27 Bichat’s axiom, 51 Big Pharma, 41, 52 Biomedicine, 43, 54, 63 western -, 211 Bion, Wilfred, 51, 280 Bio-semiotics, 248, 254 Bio-Semiotics, 247 Biran, Pierre Maine de, 255 Boccacio, 69 Decameron, 69 Body, 11, 15, 28, 50, 53, 60, 61, 63, 84, 91, 92, 93, 97, 100, 117, 122, 123, 126, 128, 154, 158, 211, 214, 228, 244, 253, 261, 269, 271, 272, 276, 277, 278, 279, 281, 283 - parts, 41 - Studies, 30 prosthetic -, 44 the baroque concept of the -, 42, 44 the human -, 85, 87, 92, 146 Booth, Wayne, 26 The Company We Keep, 26 Bor, Robert, 92 Coping with the Psychological Effects of Cancer, 92

Creative Dialogues Brahms, Johannes, 250 Brain disease, 112, 115, 116 Brockman, John, 68 Broussai’s axiom, 51 Burke, Kenneth, 253 Camus, Albert, 75 La peste, 75 Cancer, 69, 102, 122, 144, 145, 146, 148, 149, 217, 264 Canguilhem, Georges, 43 Cartesian Model, 86, 92, 93 Cassell, Eric, 96, 212, 214, 216, 217, 218, 219, 220, 221, 222, 223, 226 The Nature of Suffering, 212 Chang, Hasok, 44 Charon, Rita, 2, 4, 5, 28, 29, 41, 53, 55, 56, 59, 60, 71, 93, 96, 114, 118, 119, 140, 148, 213 "close listening", 28 “narrative medicine”, 71 Narrative Medicine Honoring the Stories of Illness, 93 Narrative Medicine (2006), 41 Chronic illness, 211 Chronic pain, 122, 211 Clinical encounter, 28, 29, 30, 104, 140, 213, 222 Clinical Encounter, 22 Clinical Neurosciences, 112 Close reading, 23, 26, 27, 99, 102 Conrad, Joseph, 21, 33, 34, 36 "Amy Foster", 33 Heart of Darkness, 21 Typhoon and Other Stories, 33 Consciousness, 36, 115, 141, 156, 189, 190, 217, 266 - studies, 263 (un)-, 216 abstract -, 160 lack of -, 271 postwar -, 157 retentional -, 218 self-, 236, 241 storyteller's -, 125

295

stream of -, 36 Constantinus Africanus, 116 Cultural Studies, 1, 25, 26, 69 Cyrulnik, Boris, 198, 274 Damasio, António, 253, 256, 276, 281 Davidson, Donald, 257 Davis, Lennard J. and Morris, David B., 29 “biocultures”, 29 Davis, Lennard J. and Morris, David B.:, 29 Death, 15, 21, 22, 31, 32, 37, 61, 84, 85, 89, 90, 93, 102, 107, 116, 125, 131, 144, 145, 146, 147, 148, 149, 153, 155, 158, 160, 162, 164, 170, 172, 173, 174, 182, 188, 192, 197, 220, 228, 236 Deconstruction, 27 Derrida, Jacques, 2, 27, 42, 58, 208 Descombes, Vincent, 248 Diagnosis, 29, 46, 61, 82, 86, 89, 92, 93, 112, 115, 125, 181, 207, 212, 217, 234, 274, 275 Discourse, 5, 42, 50, 61, 74, 106, 122, 153, 157, 201, 234, 238, 241, 249, 270, 277 academic -, 170 disarticulated -, 154 ethical -, 71 medical -, 214, 222 phenomenological -, 234 scientific -, 53 Doctor-Patient Relationship, 2, 81, 88, 89, 90, 91, 92, 96, 216 Doidge, Norman, 181, 191 The Brain that Changes Itself (2007), 181 Dostoyevsky, Fyodor, 116, 118 The Brothers Karamazov, 116, 118 The Idiot, 116, 118 Eco, Umberto, 24, 25, 254 The Open Work, 25 Eco-Semiotics, 247 Eliot, T. S., 23, 24

296 Empathy, 54, 173, 224, 226, 227, 228, 265 clinical -, 225 Epilepsy, 115, 116, 117 Eriksen, Carina, 92 Ethical Criticism, 2, 26 Ethics, 2, 12, 14, 15, 17, 52, 67, 135, 137 Bioethics, 11, 30, 72, 75 Ethical Criticism, 28 medical -, 2, 14, 211 narrative -, 62 Euthanasia, 212 Evidence-based Medicine, 29 Evidence-based Medicine (EBM), 29, 42, 58, 74 Fiction, 75, 161, 162, 170, 175, 176, 186, 234 contemporary -, 5, 144 Contemporary -, 156 fiction-writing, 102 Reality and -, 147 short fiction, 144 Foucalt, Michel, 43, 51, 153 Foucault, Michel, 151 Frank, Arthur W., 92 The Renewal of Generosity Illness, Medicine and How to Live, 92 The Wounded Storyteller Body, Illness, Ethics, 92 Free association, 179, 181, 185 Free associative analysis, 189, 191 Free associative writing, 187, 188, 189, 191 Freeman, Mark, 85, 252 Freidson, sociologist, 68 Freud, Sigmund, 48, 148, 149, 151, 152, 156, 162, 171, 175, 176, 192, 198, 199 Beyond the Pleasure Principle, 156, 171 The Interpretation of Dreams, 192 Fromm, Eric, 185 Fromm, Eric:, 185 Fuks, Abraham, 91

Index "The Military Metaphor in Modern Medicine", 91 Gama, Vasco da, 72 Gazzaniga, Michael, 253 Genetics, 70 Genomics, 51, 70 Gergen, Kenneth, 254 Gil, Fernando, 40, 41, 45, 47, 59, 61, 62, 75 Goethe, Johann Wolfgang von, 238, 253 Gowers, William, 117 Epilepsy and other Chronic Convulsive Diseases, 117 Greenblatt, Stephen, 25 Greenhalg, Trisha, 113, 118 Grief, 114, 125, 131, 169, 173, 192, 271 Groopman, Jerome, 82 "low-tech thinking", 82 Gumbrecht, Hans Ulrich, 165 Production of Presence (2004), 165 Haller, Albrecht van, 42 Hallucination, 47, 48, 49, 50, 52, 63, 154 Handicap, 100, 167 Harold, 183 Healing, 91, 108, 161, 162, 169, 170, 181, 192, 211, 216, 220, 221, 224, 228, 268, 278 "Healing dramas", 127 Healing dramas, 127, 128 Henry, James, 72 Henry, James:, 72 Henry, Michel, 41 Hippocrates, 47, 86, 113, 116 "The Art and about The Science of Medicine", 113 Holistic approaches to health care, 92 Holland, Norman, 180, 181, 188, 189, 191 Holocaust, 156, 157, 162, 170, 171, 173, 175, 176 Holocaust Aesthetics, 170 Holocaust Culture, 170

Creative Dialogues Hospitality, 2, 27, 28, 42, 52 Hubbard, Sue, 36 "Mona Lisa", 36 Rothko's Red, 36 Humanistic Culture, 69 Humanities, 1, 4, 69, 73, 74, 75, 128, 157, 165 Medical -, 30 Hurwitz, Brian, 2, 3, 113, 118 Husserl, Edmund, 41, 218, 226, 247, 263, 270 Boden, 249 Krisis, 41 Lebenswelt, 247 Urglaube, 249 Huxley, T. H., 67 Huxley, T. H.:, 67 Hysteria, 150, 151, 152 female -, 150, 156 Illness, 3, 58, 61, 71, 88, 90, 96, 97, 100, 112, 114, 115, 119, 120, 121, 122, 123, 124, 125, 126, 128, 143, 144, 146, 209, 211, 214, 217, 218, 219, 221, 223, 234, 237, 260, 264, 265, 276 - narratives, 120 critical -, 120, 122 imaginary -, 238 mental -, 154, 174 terminal -, 90, 267 the experience of -, 118 Images, 47, 48, 49, 51, 70, 71, 102, 112, 150, 186, 188, 199, 200, 226, 240, 254 virtual -, 199 Ingarden, Roman, 25 "spots of indeterminacy", 25 Internet, 74, 199, 201 Iser, Wolfgang, 25 Jackson, Marni, 92 Pain, 92 Jaspers, Karl, 213, 220, 221, 222, 227, 228, 237, 238, 239, 247 General Psychopathology, 237 Jonas, Hans, 248 Judt, Tony, 71

297

Kagan, Jerome, 67, 73 "The Three Cultures", 67 Kant, Immanuel, 16, 54, 60 Third Critique, 54, 60 Kaplan, Ann, 156, 176 Kelly, Kevin, 68 Pop culture, 68 Kertész, Imre, 171, 173, 174, 175, 176 Klitzman, Robert, 88, 89, 90 When Doctors Become Patients, 88 Kristeva, Julia, 277 Language, 23, 24, 28, 91, 95, 107, 118, 139, 145, 146, 153, 218, 222, 223, 228, 274, 276, 278, 282, 283 - skills, 146 aesthetic -, 24 figural -, 148 medical -, 279 oral -, 99 organic language, 221 Paralanguage, 219 the physiognomy of -, 238 verbal -, 275 Language games, 244, 245, 246, 248, 283 Latour, Bruno, 51, 55 Launer, John, 90, 93 How Not to be a Doctor, 90 How Not to be a Doctor and Other Essays, 93 Narrative-Based Primary Care A Practical Guide, 93 Lawrence, D. H., 31 Lady Chatterleys Lover, 31 "Odour of Chrysanthemums", 31 Sons and Lovers, 31 The Prussian Officer and Other Stories, 31 The Rainbow, 31 Women in Love, 31 Leavis, F. R., 67 Leibniz, Gottfried Wilhelm, 256 Leonardo da Vinci, 39

298 Levinas, Emmanuel, 2, 213, 220, 222, 227, 228, 268, 269 Lichtenstein, Heinz, 179 Lichtenstein, Heinz:, 179 Literary Language, 24, 157 Reading, 2, 4, 22, 27, 28 Text, 23, 24, 26, 27, 30, 55, 96, 118, 148, 188, 192 Literary Criticism, 22, 27, 114, 180, 181 Literary Theory, 22, 25 Little Red Riding Hood, 36 Lord Byron, 183, 185, 190 Childe Harold, 183 Loss, 22, 37, 106, 122, 123, 131, 158, 161, 168, 191, 192, 277 - of meaning, 63 Lyotard, Jean-François, 176, 253 MacIntyre, Alasdair, 236, 240, 254 Madness, 150, 151, 152, 153, 274 female -, 150 Magalhães, Fernando, 72 Malinowski, Bronisáaw, 247 Mann, Heinrich, 165 Mann, Thomas, 278 Medical Culture, 68 Medicine psychosomatic -, 221 Memory, 157, 170, 174, 175, 236, 253, 281 - studies, 157 affective -, 198, 199 cognitive -, 198 collective -, 175 narrative -, 172 Merleau-Ponty, Maurice, 97, 224, 248, 254, 255 Metaphors, 29, 71, 73, 91, 92, 118, 144, 145, 146, 282 - of illness, 146 environmental -, 92 military -, 91 Milton, John, 187 Paradise Lost, 187 Moby Dick, 75

Index Molecular Biology, 70 Moniz, Egas, 112 Montaigne, 74 Mourning, 162, 169 Mozart, Wolfgang Amadeus, 75, 250 Narrative, 112, 113, 114, 115, 117, 118 clinical -, 140 Narrative competence, 71, 114, 118, 248, 254 Narrative Medicine, 1, 4, 5, 29, 56, 59, 63, 95, 148 - program at Columbia, 3 concept of -, 30 the field of -, 213 Neurobiology, 213, 223, 224, 225, 226 Neurological disorder, 112 Neuropsychology, 219, 226 New Criticism, 23 New Historicism, 25 Newman, David H., 86, 92, 93 Hippocrates' Shadow, 86, 93 Nietzsche, Friedrich, 250 Nonviolent communication (NVC), 87 Nouvelle Critique, 24 Nussbaum, Martha, 26, 75 Love’s Knowledge, 26 Obama, Barack, 80 Oncology, 212 Pediatric Narrative Oncology, 105 Osler, Sir William, 73 Chauvinism in medicine, 73 P4 medicine, 42 Pain, 212, 213, 215, 217, 218, 220, 223, 224, 225, 226, 234, 237, 240, 259, 260, 261, 262, 263 - and pleasure, 245 - stimulus, 214 neurobiological mechanisms of -, 213 the experience of -, 216, 222 Palimpsest, 25 Palliative Medicine, 212

Creative Dialogues Palliative care, 212 Palliative Care, 220 Parkinsons disease, 224 Parkinson's disease, 264 Pathologies, 246 brain -, 112 Peritonitis, 83, 85 Personalized medicine, 42, 70 Pharmacogenomics, 70 Phenomenology, 2, 59, 97, 218, 244, 246, 255, 256, 260 - of the body, 224 Classical Husserlian phenomenology, 261 Onto-phenomenology, 253 theological phenomenology, 271 Plato, 12, 176, 205, 214 Phaedrus, 51, 205 Platonism, 253 Symposium, 214 Plumb, J. H., 69 Crises in the Humanities, 69 Poe, Edgar Allan, 192 Poetics, 23, 27, 156 Polidori, John, 183, 184 Political Culture, 68 Post-colonial Studies, 26 Post-structuralism, 25 Preven, David, 113 Profoundness, 165 Raphael, 116 Transfiguration, 116 Reader-response Criticism, 25 Reception Aesthetics, 25 Reception Theory, 25 Relman, Arnold, 68 business culture, 68 Renaissance, 153 Reventlow, Franziska zu, 165 Reye's Syndrome, 164 Richard Ford, 164, 166, 167, 169 Independence Day (1995), 164 The Lay of the Land (2006), 164 The Sportswriter (1986), 164 Ricoeur, Paul, 2, 53, 252, 253, 268, 270

299

Rosenberg, Marshall B., 87 Nonviolent-Communication A Language of Life, 87 Rosenblatt, Roger, 130 Rousseau, Jean-Jacques, 13, 253 Russell, Bertrand, 73 Russian Formalism, 23, 24, 28 Said, Edward W., 80 Saint Augustine, 253 Sartre, Jean-Paul, 217 Saussure, Ferdinand de, 24, 145 Schoenberg, Arnold, 75 Schwartz, Murray, 188, 189 Sebald, W. G., 158, 161, 162 Self-aggressive Behaviour, 37 Sepsis, 83, 85 Servan-Schreiber, David, 93 Anti-Cancer: A New Way of Life, 93 Shakespeare, William, 5, 25, 150, 151, 152 Shelley, Mary, 179 Frankenstein, 179 Shelley, Percy Bysshe, 182, 185 Shone, Neville, 93 Cancer A Family Affair, 93 Coping Successfully with Pain, 93 Snow, C. P., 41, 67 Snow, Charles, 67 “The Two Cultures”, 67 Spinoza, Benedict de, 255 Stapelkamp, Ceilidh, 92 Steiner, George, 72, 73 Storytelling, 21, 22, 125, 126, 128, 270, 274 Structuralism, 24 Suffering, 3, 5, 21, 22, 31, 34, 36, 61, 70, 72, 73, 75, 89, 99, 100, 114, 145, 159, 196, 197, 198, 199, 201, 202, 203, 204, 205, 206, 207, 209, 210, 211, 212, 213, 214, 215, 216, 217, 218, 219, 220, 222, 223, 225, 226, 227, 228, 234, 237, 238, 239,

300 240, 259, 260, 261, 262, 263, 264, 265, 267, 269, 270, 271, 275 Superficiality, 165 Surgery, 57, 69, 70, 81, 83, 86, 120, 127, 131, 133, 134, 135, 137, 138 Neurosurgery, 131 Surgical treatment, 115 Sydenham, Thomas, 91 Szymborska-Wáodek, Wisáawa, 75 Szymborska-Wáodek, Wisáawa:, 75 Taylor, Charles, 252 Temkin, Owsei, 116 The Falling Sickness (1971), 116 Temporality, 53, 99, 217, 218, 226 - and language, 214 Tengelyi, Laszlo, 254 Terminal care, 212 Tesnière, Lucien, 248 Therapies, 246 alternative -, 92 Chemotherapy, 72, 120, 123 Psychotherapies, 181 Psychotherapy, 179, 199 Therapy, 86, 93, 157, 161, 165, 191, 225, 246 - training schools, 108 collective -, 163 remedial -, 90 Todorov, Tzvetan, 24 Tolstoi, Leo, 75, 253 Anna Karenina, 253 The Death of Ivan Ilyich, 75 Torga, Miguel, 238, 239 Trauma, 5, 36, 157, 160, 161, 170, 171, 172, 173, 188, 265, 269 - and narration, 161 - and war, 157 - discourse, 157 - fiction, 157, 158, 162 - in literature, 5 - scholars, 100 - situation, 161 - studies, 100, 157, 170 - symptoms, 160, 161 - theory, 156, 157 "traumatic style", 173

Index Auschwitz, 172 concept of -, 156, 164 definition of -, 170 emotional -, 159, 264 historical -, 162 Holocaust, 176 illness and -, 143 poetics of -, 156 Post-traumatic Stress Disorder (PTSD), 156, 267 psychological -, 124 roots of -, 181 structural trauma and historical trauma, 171 traumatic events, 165, 170 traumatic experiences, 148, 158, 164, 169, 171, 172, 207, 260 traumatic knowledge, 158 traumatic loss, 162 traumatic memories, 162, 172 traumatic memory, 170 traumatic scenes, 171, 172 traumatic shock, 253 traumatic symptoms, 171 writing and -, 179 Trilling, Lionell, 67 Trotter, Wilfred, 71 Uncertainty, 2, 57, 63, 74, 119, 173, 244 Velleman, J. David, 254 Wegner, Daniel, 255, 256 West-Eastern Divan Orchestra, 81 Western technomedicine, 41, 52 Whitehead, Alfred North, 247 William, James, 72 Witness-Literature, 170 Wittgenstein, Ludwig, 50, 166, 244, 245, 246, 247, 249, 252 Philosophical Investigations, 166 Tractatus Logico-Philosophicus, 166 Wolf, Peter, 116 Women's Studies, 26 Words, 24, 27, 29, 56, 70, 71, 72, 85, 90, 97, 99, 102, 139, 145, 146, 160, 165, 197, 219, 221,

Creative Dialogues 247, 260, 266, 276, 278, 280, 281, 283 hurtful -, 204 put into -, 81, 101, 140, 162, 171 the violence of -, 204, 208 the world of -, 2 to represent in -, 275 Wordsworth, William, 75 World War I, 156, 157

301

World War II, 23, 157, 158, 161, 171, 172, 191, 205, 206 Zaner, Richard M., 93 Conversations on the Edge Narratives of Ethics and Illness, 93 Ethics and the Clinical Encounter, 93