The Language of Illness and Death on Social Media : An Affective Approach [1 ed.] 9781787694798, 9781787694828

Citation preview

THE LANGUAGE OF ILLNESS AND DEATH ON SOCIAL MEDIA

Sharing Death Online Series Editors Dorthe Refslund Christensen Aarhus University, Denmark Kjetil Sandvik University of Copenhagen, Denmark Humans face and deal with death and loss through media and technologies at hand. In contemporary culture, online media is perhaps the most important arena for the (re-) interpretations, (re-)mediations, and performances of traditions, practices, and beliefs related to death and dying. While some of these traditions are indeed new and digitally born, others are revitalizations of older death-related practices. Sharing Death Online is a new book series with the ambition to embrace the fact that death is both a basic human condition that humans share socially and an event in human life that calls people to be intimate and to share their human experiences, both in relation to death and to other basic life conditions such as family, love, loneliness, health, and friends. Death is crisis, endpoint, turning point, and however, at the same time, a source of experimentation, creativity, and transgression. The series welcomes both analytical case studies and theoretical, analytical contributions from, and across, a great variety of disciplines including (media) sociology, (media) aesthetics, cultural studies, digital design, psychology, (visual) anthropology, design, the history of religion, philosophy, linguistics, art history, and more.

THE LANGUAGE OF ILLNESS AND DEATH ON SOCIAL MEDIA An Affective Approach BY

CARSTEN STAGE

Aarhus University, Denmark

TINA THODE HOUGAARD Aarhus University, Denmark

United Kingdom North America Japan India Malaysia China

Emerald Publishing Limited Howard House, Wagon Lane, Bingley BD16 1WA, UK First edition 2018 Copyright r 2018 Emerald Publishing Limited Reprints and permissions service Contact: [email protected] No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters’ suitability and application and disclaims any warranties, express or implied, to their use. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN: 978-1-78769-482-8 (Print) ISBN: 978-1-78769-479-8 (Online) ISBN: 978-1-78769-481-1 (Epub)

ISOQAR certified Management System, awarded to Emerald for adherence to Environmental standard ISO 14001:2004. Certificate Number 1985 ISO 14001

ACKNOWLEDGMENTS First and foremost, we would like to thank the bereaved families whose stories are shared in this book and who during extremely difficult periods in their life allowed us to research their social media practices. Without this kind of trust and generosity, this book would not have been possible. We would also like to thank all of those who have offered us valuable feedback on the thoughts and ideas presented in this book. We are grateful to our colleagues at Aarhus University working on affect (or adjacent fields), Britta Timm Knudsen, Camilla Møhring Reestorff, Bodil Marie Stavning Thomsen, Christoffer Kølvraa, and Mads Krogh, for many fruitful conversations and collaborations over the years. We are also grateful to the editors of this series, Dorthe Refslund Christensen and Kjetil Sandvik, for giving us the opportunity to publish our work in this highly relevant context, and to the participants of the DORS conference in 2017 for their comments on an earlier paper that in many ways led to this book. Last but not least, we would like to thank our respective families for patiently allowing us to become absorbed in the writing process resulting in this book. The book mainly consists of new work, but small, theoretical, and analytical sections have been amended from passages in the journal article “Interjections, phonetics, and the

v

vi

Acknowledgments

body” (Hougaard, 2018), and the book Networked Cancer (Stage, 2017). Carsten Stage London, June 2018 Tina Thode Hougaard Aarhus, June 2018

CONTENTS About the Authors

ix

1. Introduction

1

2. Theoretical Framework

9

3. Forms of Affective Language

43

4. Rhythms of Affective Language

71

5. Conclusion

101

References

105

Index

127

vii

This page intentionally left blank

ABOUT THE AUTHORS Carsten Stage is Associate Professor in the School of Communication and Culture, Aarhus University, Denmark. His book publications include Networked Cancer: Affect, Narrative and Measurement (Palgrave/Springer, 2017), Global Media, Biopolitics, and Affect: Politicising Bodily Vulnerability (Routledge, 2015, coauthor), and Affective Methodologies: Developing Cultural Research Strategies for the Study of Affect (Palgrave, 2015, coeditor). He is coeditor of Conjunctions: Transdisciplinary Journal of Cultural Participation and co-director of the research programme Cultural Transformations at Aarhus University. His research focuses on illness narratives, affect, social media, and participation. Tina Thode Hougaard is Associate Professor in the School of Communication and Culture, Aarhus University, Denmark. Her articles include “Emojier, interjektioner og affekt sorg og medfølelse på Facebook” in Møde om Udforskningen af Dansk Sprog, Vol. 16 (2017, Aarhus Universitet) and “Emojis in the Digital Writings of Young Danes” in Jugendsprachen/ Aktuelle Perspektiven Internationaler Forschung/Current Perspectives of International Research. (Berlin: De Gruyter, 2018, coauthor). She is coeditor of Scandinavian Studies in Language and Møde om Udforskningen af Dansk Sprog. Her research focuses on interaction and use of language in social media.

ix

This page intentionally left blank

CHAPTER 1 INTRODUCTION

Social media is now an ordinary, integrated, and natural part of everyday life for many people all over the world. The internet and social media have, in the words of John Durham Peters, become “elemental” (Peters, 2015), which means that we should approach this technology “as a means of existence, in some ways close to water, air, earth, fire, and ether in its basic shaping of environments” (Peters, 2015, p. 49). Yet, because it is so “ordinary” and “elemental,” social media is also becoming increasingly engrained in the extraordinary dimensions of existence and a fundamental part of the changing nature of life, in which unexpected events can suddenly transport us from the ordinary to the extraordinary. This implies that, on social media, we can observe individuals occasionally turned into “existers” when faced with biographical disruptions linked to events such as illness and death (Lagerkvist, 2016). Social media is thus being increasingly used to deal with life’s crises yet it can also play a role in creating the very same crises. According to Amanda

1

2

The Language of Illness and Death on Social Media

Lagerkvist, social media is “existential media” in a double sense: it can contribute to forming existential crises (e.g., through processes of cyber bullying or digital assaults and conflicts) and help to manage and deal with existential crises (e.g., through various forms of digital communication, such as support groups and online forums) at the same time. In this book, we take a particular interest in existential and affective publics that arise on Facebook groups that deal with the diagnoses, treatment, and terminal consequences of cancer among children. More specifically, we focus on the language created and used to shape these publics in relation to personal stories of illness, dying, and mourning. “Language” in this book does not refer to the abstract grammar of or system behind digital media (Manovich, 2001) but rather to the actual utterances, signs, and expressions that people use during interaction on social media. Our key objective is thus to develop an analytical framework to understand the role of what we will call “affective language” for example, emojis and interjections and other forms of expressive interactive writing in these publics and to understand how this language can be used to explore shared affective processes of digital affect cultures (Döveling, Harju, & Sommer, 2018) on social media groups that concern events that both profoundly disturb but also necessarily become part of everyday life practices for the involved families and followers. In doing this, our analyses draw on both established and recent research on social and existential media, affect, and language with relevance for social media communication about illness and death. During crises, users of social media (with varying degrees of intention) produce various forms of linguistic signs and expressions, images, and semiotic actions and thus “entextualise” processes of illness and death in new ways (Giaxoglou,

Introduction

3

2015a); however, it is becoming somewhat unfashionable to study this type of material due to media and cultural studies’ attempt to avoid framing media as mere channels for content and textual circulation. Through the work of seminal figures such as Innis, McLuhan, Kittler, Carey, and Meyrowitz, we have been taught that media do not simply transport meaning or semiotic content but also fundamentally change and condition social spaces, relations, and hierarchies of knowledge, which implies that we should “take media less as texts to be analysed […] than as the historical constituents of civilization or even of being itself” (Peters, 2015, p. 18). For this reason, language and written texts have become somewhat outdated objects of study due to textual research’s earlier tendency to neglect the cultural changes brought about by the affordances of media. And we agree: it is far too simplistic to understand social media platforms as textual highways. They are complex social, relational, affective, and economic platforms, which condition, mold and impinge their logic on cultural practices and being in a variety of ways (Hepp, 2012; Hjarvard, 2008). However, importantly, they are also habitats for language use verbal and visual actions. The exchange of writings and images is still a significant part of social media and a key reason for engaging with them as a user perhaps not only for the semiotic content or meaning of these exchanges (and certainly not only for the joy of reading enclosed products of writing) but also for the exchange of something more affective, relational, or social in character. A key interest of this book is how research can avoid treating media as mere carriers of meaning for example, by stressing and understanding their elemental and existential importance yet actually be able to investigate the language that “takes place” on social media. With this goal in mind,

4

The Language of Illness and Death on Social Media

we wish to adopt an explorative approach to social media language that begins with the following questions: • How can language be approached in ways that foreground the bodily relationality and affectivity of communication and social media? • What can the use of language teach us about the existential, relational, social, and affective processes taking place in cancer-related publics and commemorative sites on social media? In asking these questions, this book deals with social media as an important affective platform for communication about processes of illness, death, and mourning. Importantly, the attempt to understand the language and interaction of illness and mourning on social media less as semiotic meaning and more as contributing to forms of being together, confirming relations, and connecting bodies finds good backing in a range of both recent and classical theories of language that do not place meaning at the center (e.g., theories that deal with the phatic communion, indexicality, and interjections). In this sense, the book can also be seen as an attempt to connect these rather established understandings of language to a specific field of research on social media, which concentrates specifically on how illness and death are communicated on these platforms. Besides this, the book also indirectly adds to the increasing interest in developing methodologies and analytical strategies for understanding the role of bodily affects in relation to social media communication (Coleman & Ringrose, 2013; Knudsen & Stage, 2015b; Vannini, 2015). In the remaining part of this introduction, we will outline the book’s methodological and ethical framework. The next three chapters represent the theoretical context and two complementing analytical approaches. Chapter 2 provides an

Introduction

5

overview of the existing, key theoretical concepts, which we later draw on in our analysis. The third chapter focuses on particular types of affective language in the book’s two case studies (described later), and the fourth chapter offers an analysis of the accumulation and rhythm of this language and what these rhythms of accumulation might teach us about the differences and similarities between the two affective and existential publics being investigated.

1.1. METHOD AND ETHICS This book focuses on two Danish cases, which are both public and parent-controlled Facebook groups dealing with children cancer: Commemorative site for Lærke Rønde Timm and Fighting for Magnus (MIV). These cases seem to be part of a growing tendency of not only public children’s cancer profiles and groups (The Bradley Lowery Foundation and Caring for Kian are other key examples) but also of a larger group of entrepreneurial cancer blogs and profiles (see Stage, 2017). Of course, we could have selected to study many other types of social media profiles and groups on illness and death (for example, personal or collective blogs or profiles on Facebook, Instagram, Twitter, or other platforms; closed support groups; or intentional or un-intentional RIP pages), but we decided on the two cases mentioned as they are paradigmatic of many similar illness and mourning groups yet also display internal variation (Flyvbjerg, 2010). The groups are similar in having created intense, affective publics, and in having transformed from first focusing on cancer treatment, then on the processes of dying, and finally on creating a forum for commemoration and grief work related to a particular child (Lærke Rønde Timm and Magnus Eid Andersen (nicknamed MIV)).1 In this sense,

6

The Language of Illness and Death on Social Media

these cases can help us understand larger ongoing cultural transformations in the development of new affective publics of sharing illness and grief on social media and not least shed light on how language is used in these publics and to some extent challenge our understanding of language merely as a system for semiotic meaning-making. However, the cases are also dissimilar in terms of their scale of dissemination, which, through an analysis of affective language use, might allow us to tease out some important differences in how affective publics develop in relation to illness and dying on social media. Our aim with the book is not to schematize a universal theory covering all verbal and multimodal actions in the two cases, but instead to deepen our understanding of the “affective practice” (Wetherell, 2012) of writing for example, interjections, hesitation dots, and emojis on social media. In doing so, we wish to propose a way of investigating more or less spontaneous transmissions of reactions and affects by first focusing on the most-used expressions and prominent posts and second on when and how these expressions are (or are not) used over the larger lifespan of the groups and what this can tell us about their affective logics. The empirical basis of the book is primarily collected digital material (material from social media) and secondly material creating knowledge about living a digital life (interviews about social media). More specifically, we use (1) social media and multimodal texts from Facebook related to the two cases and (2) supplementary interviews with the bereaved parents (the two mothers). In processing the material, the book will use a mixed-methods design that combines (1) linguistic, narrative, and rhythm analytical approaches (various forms of theory-based analysis) and (2) digital software (Digital Footprints). These methods are combined in order to be able to explore both the specific affective and linguistic

Introduction

7

qualities of the cases, including the type of responses they motivate, and to process the often extensive amount of online material. All digital material has been collected and is being stored (and deleted) according to the “General Data Protection Regulation,” and all use of direct citations deriving from the Facebook groups and the interviews have been approved by the people articulating them. As part of this method, we have combined manual reading and close reading with digital counting. In Lærke’s case, we read all the blog posts and comments (249 posts and 2675 comments), but, in MIV’s case, due to its size (5,224 blog posts and 44,777 comments as counted by the methodological software Digital Footprints), we read all the posts but only comments on selected dates of importance to the overall development of the case. The statistical access to both cases offered by Digital Footprints enabled us to create an overview of the overall patterns of language use in the data, for example, lists of the 100 top words (both total and on selected dates) and lists of posts that generated the most comments and likes, though this of course does not approach the realm of “big data” or “data linguistics.” We rather used these digital counting tools to identify relevant focus points for conducting theoretical readings based on concepts such as affect, indexicality, modality, and rhythm concerning conventionalized language as well as phenomena on the periphery of the linguistics, such as interjections, emojis, hesitation dots, capital writing, and sign redundancy. Unlike other studies on mourning, we thereby insisted on exploring language use in its natural settings opposed to lab settings (Brubaker & Hayes, 2011). We also conducted a brief online interview with the mothers of Lærke and Magnus about their experience of sharing processes of existential struggle and grief in the Facebook group.

8

The Language of Illness and Death on Social Media

The two cases selected as main material for the book raise a range of important ethical questions, which we will continually bear in mind as we present the material. According to the 2002 and 2012 ethical recommendations of the Association of Internet Researchers (AoIR), what is ethically acceptable is highly dependent on the content, platform, and context of the study and “ambiguity, uncertainty, and disagreement are inevitable” (Ess & AoIR ethics working committee, 2002, p. 4; Markham & Buchanan, 2012, p. 4). An important ethical guideline, however, is to “do no harm” (Ess et al., 2002, p. 8), meaning that the research should result in no physical or psychological negative effects. We take this as our point of departure when dealing with the ethical challenges of the material. Following this, the collection of empirical material is based on informed consent by the parents, who were able to withdraw from the project at any time if they wished. All the regular users who commented on the Facebook pages have been anonymized; however, when quotations have been used that can be traced back to a specific person, this use has been approved by the person in question. Furthermore, we offered the parents the chance to read and comment on the book manuscript before it was submitted for publication. In doing so, we hoped to ensure that the parents were not hurt by our writing and, just as important, that the parents actually felt empowered and understood by our analysis and text.

NOTE 1. Throughout this book, the two children will be referred to as Lærke and MIV.

CHAPTER 2 THEORETICAL FRAMEWORK

2.1. ILLNESS, DEATH, AND EXISTENTIAL MEDIA The two Facebook groups being investigated here are both examples of how social media is being used increasingly during serious illness and commemoration and of how groups can transform from the former to the latter. Both Lærke and MIV suffered from cancer, which is among the most “commonly searched health topics on the Internet” (Nguyen & Ingledew, 2013, p. 662), and cancer patients in a Western context are increasingly using the internet to find information about diagnosis, prognosis, and treatment related to specific types of cancer and side-effects (Ådland & Lykke, 2015; Castleton et al., 2011; Maloney et al., 2015). From a language and media perspective, the groups could have centered on any kind of serious and life-threatening illness, but the fact that the children had a cancer diagnosis is also important for the level of engagement and sympathy they stimulated. This is due to the fact that cancer is culturally situated in a way that differentiates it from many other diseases. First, cancer is a serious illness that people now fear more than any other disease (Alzheimer Europe, 2011; 9

10

The Language of Illness and Death on Social Media

MetLife Foundation, 2011) and, second, many people have had a personal experience with cancer (either first hand or through relatives or friends). Third, it is a widespread cultural expectation that children do not get cancer and, therefore, reading stories about children cancer has a particularly strong potential to create (viral) empathy among larger audiences. In other words, audiences are culturally conditioned to quickly understand and relate affectively to the two social media groups due to the particular disease in question. This cultural logic combined with the rise of social media has had the consequence that ordinary citizens with cancer, who are not part of celebrity culture, can suddenly become the objects of forms of large-scale public interest and grief that involve people outside of their established social relations and communities. The two groups also underline the fact that cancer like many other illness practices is undergoing a process of direct mediatization (Hjarvard, 2008), as previously unmediated practices (talking to family, friends, and doctors face-toface) now take on a mediated form by moving onto support groups, blogs, or social network site (SNS) profiles. However, research has also shown an important (educational, ethnic, and income-based) digital divide in this use of internet resources during cancer (Høybye et al., 2010; Littlechild & Barr, 2013; Ziebland et al., 2004) a point which is linked to more general patterns of social media use across different demographic segments. A vast amount of health communication knowledge concerning cancer patients’ engagement with different (closed) support groups and (public) social media has been generated over the last 20 years. Research interests seem to follow the historical introduction and cultural salience of particular platforms. In the late 1990s to the mid-2000s, the main research focus was on peer support groups, email lists, websites, and

Theoretical Framework

11

message boards (Hardey, 2002; Høybye, Johansen, & Tjørnhøj-Thomsen, 2005; Sharf, 1997). After this, research on cancer blogging increased (Heilferty, 2009; Keim-Malpass et al., 2013; Ressler, Bradshaw, Gualtieri, & Chui, 2012), and, over the last 5 10 years, there has been a flourishing interest in the strategic health potentials of social network sites1 like Facebook (Bender, Jimenez-Marroquin, & Jadad, 2011; Erfani, Abedin, & Daneshgar, 2012) and Twitter (Sugawara et al., 2012; Tsuya, Sugawara, Tanaka, & Narimatsu, 2014) and content communities like YouTube (Foley, Mahony, Lehane, Cil, & Corrigan, 2015). Perhaps surprisingly, compared with other platforms, Instagram and Snapchat (the latter’s status as a social media platform is of course contested (Klastrup, 2016)) remain relatively under-researched (Vraga et al., 2018; Warner, Ellington, Kirchhoff, & Cloyes, 2017). This could be due to their focus on sharing harder-to-handle visual and, in the case of Snapchat, ephemeral (Larsen & Kofoed, 2016) material. The aforementioned research often focuses on specific groups of cancer patients, but across it there is an interest in measuring the percentage of platform users within the group, the various types of content searched for or shared on the internet/social media sites, user motivations for engaging with social media, and social media’s potentially therapeutic, peersupporting, and de-isolating capacities. For example, the content on cancer blogs has been shown to be predominantly experiential and opinion-based rather than focused on medical knowledge (Chiu & Hsieh, 2012; Kim & Gillham, 2015). These blogs also allow patients to develop new peer relations and regain a sense of control (Ressler et al., 2012). A study of patients more actively reading and writing illness cancer blogs (Chiu & Hsieh, 2012) identified that patients engage in this activity for multiple and converging reasons; for example, to create a sense of biographical continuity and emotional relief,

12

The Language of Illness and Death on Social Media

to cope with the risk of dying relatively soon, to diminish social isolation, and to find “lived knowledge” instead of abstract medical knowledge. The studies of cancer communication on social networking sites for example, Facebook (Bender et al., 2011; Erfani et al., 2012; Stage, 2017) and Twitter (Sugawara et al., 2012; Tsuya et al., 2014) support these findings and also emphasize that emotional and peer support as well as funding cancer causes (especially on Facebook) are salient features of this type of cancer communication. Maria Andersson et al. have shown that relatives can use blogging during and after the illness of a family member for various reasons (Andersson, Gustafsson, Hansson, & Karlsson, 2013). Their study of 12 Swedish bloggers (who all had an ill relative) showed that relatives experienced blogging as a way to stay in contact with the outside world, to raise issues for public debate (e.g., medical practices), and to establish new social bonds with peers. A less positive consequence of writing a blog was the sense of vulnerability that resulted from unwanted media attention or a sudden increase in the number of strangers reading the blog. After the death of the family member, the bloggers felt that the blog helped them with their grief and emotional release and that it also helped them create a monument or an archive of memories for the deceased person. In the illness narrative tradition, cancer has been the “master illness” (Sontag, 1991), and research on both book-based narratives and narrative work in clinical settings has often stressed how narratives support agency-building by creating a sense of structure, progression, and cohesion in the midst of “biographically disrupting” illness (Bury, 1982; Charon, 2006; Frank, 1995; Jurecic, 2012). In the fewer studies of cancer narratives in digital media, this focus has been continued, as it has been argued that cancer narratives and

Theoretical Framework

13

storytelling in digital media further the trend for individuals to reclaim an individualized and not purely medical voice (Coll-Planas & Visa, 2016; Nesby & Salamonsen, 2016; Orgad, 2005); this research also emphasizes the changed temporality of sharing stories of illness on social media, since this type of storytelling does not look back on a demarcated process but narrates the process as an ad hoc attempt to grasp events and changes as they occur: The stories that narrators tell about their experiences of illness are not told retrospectively from the point of recovery, but as updates that appear discontinuously as the narrator documents their experiences while diagnosis and treatment unfolds. Sometimes the sequence of blog posts stops altogether without warning, perhaps for the distressing reason that the narrator is too ill to continue to write, or has even died. (Page, 2012, p. 10) Other studies disconnected from the communication of illness have examined narrative work on social media as networked, shared, and as small stories (Georgakopoulou, 2014; Page, 2012, 2018). Some of this research has also focused on how comments often engage in processes of “positive story recipiency” (Georgakopoulou, 2016). One way of engaging in these processes is through “ritual appreciation,” which, according to Alexandra Georgakopoulou, refers to “numerous highly similar positive appreciations of an initial post” that serve as the “counterpart of lots of people clapping and cheering at the same time” (Georgakopoulou, 2016, p. 310). Furthermore, several studies have focused on processes of faking illness narratives online and the often collective processes of revealing them (Enli, 2015) as well as the

14

The Language of Illness and Death on Social Media

role of new forms of affective communities (such as crowds) in relation to social media illness (Stage, 2013). Related research on the body and other illnesses rather than cancer has furthermore stressed the importance of body visuals and selfies as an increasingly important (narrative) tool of selfexploration (Frosh, 2015; Tembeck, 2016; Tiidenberg & Cruz, 2015), positioning (Chariatte, 2017), and communitybuilding (Cochrane, 2017). As well as examining the particular textual, narrative, and visual forms used to share cancer experiences, this book will also explore the “platformed sociality” (Dijck, 2013) and publics created through the circulation of these forms. Rather than exploring the more tightly knit communities created in closed peer support groups, it will instead concentrate on the more loosely organized publics created in relation to public or semi-public Facebook groups about a single person’s illness story. Here values or deliberation are not necessarily what unite publics (Habermas, 1962/1989), they can instead be united by shared attention (Warner, 2002), affects (Papacharissi, 2015; Stage, 2013), and collaborative projects (Wenger, 1998) as well as feelings of collective indignation and political exclusion (Squires, 2002), “personalised action frames” such as memes or image sharing (Bennett & Segerberg, 2012), or the production of content about an issue or event assembled through the use of hashtags (Bruns & Burgess, 2011). Hashtags can be used to construct publics of “ambient affiliation” (Zappavigna, 2011), since hashtags offer the participants the opportunity to identify with a certain cause or a certain circle of people but only for as long as the topic in question is socially vital; in this sense, they create an ephemeral or ambient social affiliation: “[T]he affiliation is ambient in the sense that the users may not have interacted directly and likely do not know each other, and may not interact again” (Zappavigna, 2011, p. 801).

Theoretical Framework

15

It is important to note that digital cancer publics are often multivalent in the sense that they can produce affective, collective, political, and economic value simultaneously (Gerlitz, 2016). This means that the larger cultural implications of sharing serious illness in these publics can be approached in different ways: Should social media platforms (in relation to sharing cancer experiences) be primarily understood as empowering platforms for storytelling or public mobilization (Hansson & Wihlborg, 2015; Ytre-Arne, 2016)? Or should they also be understood as mundane “patient participation” platforms (Mol, 2008) that potentially lead to a problematic privatization/individualization of healthcare issues and visual promotion of the publically intimate, “vital,” and participatory patient as an ideal (Pitts, 2004; Stacey, 1997)? Or should they simply be understood as platforms that extract economic value from existential experiences through the algorithmic “culture machines” of social media (Finn, 2017; McCosker, 2013)? Due to the living and ad hoc narrative logic of social media, the illness narratives which are closely intertwined with the current biological states of the narrator transform into something else as the body either regains its health or dies. When the ill person dies, the profiles/platforms are typically turned into spaces of commemoration (Stage, 2017). Another strand of research relevant for this book is therefore scholarship on internet and new digital practices of death, dying, and grief (Arnold, Gibbs, Kohn, Meese, & Nansen, 2018; Papacharissi, 2018). As explained by Walter, Hourizi, Moncur, and Pitsillides, the internet challenges existing ways of mourning by enabling the creation of intentional memorializing on grief-specific sites (e.g., cyber cemeteries), intentional memorializing on non-grief-specific sites (e.g., RIP groups on Facebook), as well as a range of unintentional memorials on non-grief-specific sites (Walter et al., 2011,

16

The Language of Illness and Death on Social Media

pp. 282 283). Examples of the latter could be social networking site accounts (e.g., Facebook or Instagram profiles), webpages, email accounts, and blogs, which often persist as a kind of uncontrollable digital heritage when a person dies (Brubaker, Hayes, & Dourish, 2013; Stokes, 2015) or as spaces of textual interaction enabling experiences of both distance and proximity between mourners and the dead person (Giaxoglou, 2015b). This challenges the norm that deceased people should be sequestrated from public space or entrenched in very specific spaces that can either be visited or avoided (e.g., a cemetery, a war monument): “Though a dead person’s material possessions are willed to specific recipients, or are sold in the impersonal market (thus detaching the object from memory of the deceased), a person’s digital works can hang around in cyberspace indefinitely” (Walter et al., 2011, p. 283). Or, to put it more directly: “Online, the dead continue as social actors” (Walter et al., 2011, p. 292), which could explain why “(o)n sites such as MySpace or Facebook, set up pre-mortem by the deceased, there may be an uncanny sense of their presence” (Walter et al., 2011, p. 292). Other research has focused on how social media platforms enable new types of relationship and thereby highlight “the social nature of death” (Brubaker et al., 2013), on how norms around proper mourning behavior are negotiated (Walter, 2015; Wagner, 2018), and on how relatives and followers engage with and handle digital heritage (e.g. Brubaker & Hayes, 2011) for example, through what Jocelyn Degroot calls transcorporeal communication (TcC), which refers to online communication “directed to the deceased as if the deceased could read the messages” (DeGroot, 2012, p. 198). Last but not least, research on bereaved parents has shown how various forms of media and materiality are deployed to maintain and nurture a social and loving relationship with the deceased child (Christensen &

Theoretical Framework

17

Sandvik, 2014; Sandvik & Christensen, 2013; Segerstad & Kasperowski, 2014). This book draws on the abovementioned research while situating itself as a language-orientated contribution to the budding academic field of “existential media studies” (Lagerkvist, 2016), which takes a particular interest in how social media platforms both produce and are tools or “mediated lifelines” (Lagerkvist & Andersson, 2017) used to manage existential vulnerabilities linked to events such as illness, death, commemoration, or digital assaults (Andersson, 2017). The book will contribute to this academic research field with a particular focus on (affective) language and the publics that build around relatives’ communication about a child with cancer. An existential media approach, as described by Lagerkvist, is based on an acknowledgment of the ubiquitous role of digital media in current culture, which entails that individuals are “thrown into” the digital (Lagerkvist, 2016): it is everywhere, it cannot be avoided and it is thus an important element of modern human existence. This becomes particularly clear during moments of existential rupture or what Lagerkvist following Jaspers calls “limit situations” when people increasingly turn to media: (D) digital media are existential media, also and particularly when people share and explore existential issues in connection with loss and trauma online; on digital memorials, in rituals of lighting digital candles, in blogging about terminal illness, and on suicide sites. As these examples reveal, our communication culture offers both new existential predicaments, and at once new spaces for the exploration of existential themes and the profundity of life. Questions concerning digital technologies are

18

The Language of Illness and Death on Social Media

thus questions about human existence. (Lagerkvist, 2016, p. 2) Cancer-related profiles, blogs, or groups are obvious examples of such digital media practices that revolve around human experiences of disruption, loss, or profound biographical disturbance and that simultaneously express and manage crises by giving them a mediated form. Lagerkvist draws on the work of John Durham Peters, who has argued that we should look at (digital) media as elemental media in the sense that they “lie at the taken-forgranted base of our habits and habitat” (Peters, 2015, p. 1). They sustain and enable being. For this reason, media are often forgotten as media and instead become “ontology” and “how things are”: “Media are our infrastructures of being, the habitats and materials through which we act and are. This gives them ecological, ethical, and existential import” (Peters, 2015, p. 15). Peters uses a range of different concepts to describe this feature of media. Media are besides elemental infrastructural, logistical, environmental, and existential, and they “stand under” in the sense that they support from below and offer something to stand or lean on. Peters furthermore argues that understanding media as carriers of human information is relatively new and problematic because (social) media is clearly not only about allowing one brain to transmit cognitive input to another. People also feel media and, conversely, media can create and alter feelings. They allow for humans to engage in bodily and sensuous relations of presence but they also actively shape affective processes through their (algorithmic) affordances. Or, as Peters remarks: “Social media invite us to think freshly about the communicative affordances of presence and the many mediations of the body” (Peters, 2015, p. 6) and about how digital media serve more as “logistical devices of tracking and

Theoretical Framework

19

orientation” than as providers of “unifying stories to the society at large. Digital media revive ancient navigational functions: they point us in time and space, index our data, and keep us on the grid” (Peters, 2015, p. 7). Based on these claims, Peters foregrounds media’s importance for being instead of meaning. To exemplify this point, he unfolds the story of existentially challenged family members talking regularly on the phone not to actually say anything but to maintain their relationship, to be present, to hear each other’s voices, and to push aside the fear of losing each other. Here the phone becomes a “lifeline” more than a semiotic transferring device: “The import of the call was existential, not informational” (Peters, 2015, p. 14). However, we would like to argue that language is still involved. Something is still said on the phone; perhaps this language should not be understood through its most likely weak content but rather through the way it enacts relations, presence, and affects and engages in distributing attention and care. In some sense, Peters activates the anthropologist Bronislaw Malinowski’s understanding of this kind of language use as “phatic communion,” which surpasses referential or semiotic use: “The whole situation consists in what happens linguistically. Each utterance is an act serving the direct aim of binding hearer to speaker by a tie of some social sentiment or other [...] language appears to us in this function not as an instrument of reflection but as a mode of action” (Malinowski, 1923, p. 479). Understood this way, language is a shared tool that anchors the participant in the same social context a point stressed more directly by certain types of language use in which the deictics of pronouns and adverbs take us away from the abstract space of communicating thoughts to pointing to actual places and bodies. Following Roman Jakobson, who further developed the idea of the phatic communion, all language use can be said to

20

The Language of Illness and Death on Social Media

have a function, even if some of our verbal output only serves to establish and prolong the interaction and to confirm that the contact remains, that is, the phatic function of language (Jakobson, 1960). Among other researchers, Stine Lomborg has identified that social media to some extent is nothing more than phatic communions facilitating different forms and grades of togetherness, thereby making it possible for the participants to enjoy constant yet remote mutual attention (Lomborg, 2013). An interesting question for us in this book following Peters and Malinowski is how social media language use, in particular, forms part of these elemental-existential media that stand under existence in relation to illness and mourning groups on Facebook. Should this language be understood as somewhat detached from its role as a semiotic channel and more as a crucial component of what gives media importance for existence and being? Peters seems to encourage this line of thought: My aim is not to turn back to a precritical notion of media as natural. There are compelling reasons to restrict the concept of “medium” to the semiotic dimension. I take the modern human-semiotic turn as an enrichment of the concept, but it is time to graft those branches back into the natural roots in hopes of a new synthesis. (Peters, 2015, p. 48) One potential way of developing such as a synthesis between “semiotic” and “elemental” media would be to think about social media language through the lens of affect theory, since this line of scholarship allows us to focus on how bodies, language, and elemental media entangle affectively in the “here and now” of existential crises.

Theoretical Framework

21

2.2. AFFECTIVE LANGUAGE Affect essentially means “intensity” and can be understood as a force that bodies can both sense and invoke in relation to other bodies (Brennan, 2004; Clough, 2008; Massumi, 2002). Much of the early interest in affect focused on affect as bringing the forgotten body “back in” after decades of poststructuralist, constructivist, and language-centric analyses, and this in turn placed the affective importance and role of “small-d discourse” (language in use) and “large-D Discourse” (cultural systems of knowledge) at the center of research on and against affect (Ahmed, 2004; Knudsen & Stage, 2015a; Wetherell, 2012). In this book, we understand language as abstract representations of physical and cognitive processes. A language consists of compositions of sounds, morphemes, words, phrases, and sentences that combine to form communicative actions with social consequences. In our pragmatic analyses, we focus on both linguistic and (selected) multimodal elements as produced under the influence of the relation between the sender and the receiver in a specific situation the meaning of the linguistic elements is defined by the use of language, which is situated and embodied. The linguistic elements (the verbal and para-verbal communication) are dynamic they are at the same time regulated by conventionalized syntactic and semantic rules and articulate the intentions (sometimes unintentional needs and desires), the affectivity, and the relationality of the communicators (Grice, 1975 (1967); Searle, 1974; Togeby, 1993; Wittgenstein, 1953). Language on social media sites like Facebook, Instagram, Twitter, YouTube, and blogs (Kaplan & Haenlein, 2010) is often of an affective quality not least because an increasing number of media users are able to express (and archive) themselves spontaneously, while being physically affected by

22

The Language of Illness and Death on Social Media

videos, comments, and images already on the platform or events and experiences not yet presented. In this sense, social media sites are also “affective archives” where spontaneous reactions are saved. According to Zizi Papacharissi, social media enable the creation of dynamic affective publics defined as “networked public formations that are mobilized and connected and disconnected through expressions of sentiment” (Papacharissi, 2015, p. 125). These publics allow users to “affectively tune into an evolving event or issue” and thus create “particular forms or textures of affective attunement” (Papacharissi, 2015, p. 118). By defining social media as platforms for enabling textures of affective attunement, Papacharissi stresses not only how users are attuned by social media but also how social media allows for the production of textures with an affective quality, which can attune new bodies. Textures (or language) of affect on social media thus do not simply refer back to or represent the affects of users. They are not only signs of affective intensity already felt by users but also language with an affective potential. This duality underlines the ongoing oscillation between affective representation and presentation as a key characteristic of affective language use on social media platforms. As argued by Susanna Paasonen, social media sites are furthermore environments for ambiguous affect production and modulation (Paasonen, 2016). They are affectively multivalent. In other words, due to the digitized interface between users and between users and machine, social media language can simultaneously archive or dump bodily energies (e.g., through in-the-heat-of-the-moment responses) (Brennan, 2004; Kuntsman, 2012), produce bodily energies (e.g., the anticipation created by pressing “post” or “like”) (Brennan, 2004), change bodily energies (e.g., when sadness is turned into happiness due to supportive responses) (Stage, 2017), transmit bodily energies in more or less viral ways (e.g., when

Theoretical Framework

23

comfort spreads throughout an online network) (Munster, 2013; Sampson, 2012), and play a part in reproducing or negotiating larger affective economies (e.g., when racist discourse promoting fear and anger is reproduced in a Facebook group or socially transformative movements are affectively mobilized through hashtags, such as #metoo) (Ahmed, 2004). And, according to Papacharissi, social media sites often do many affective things simultaneously, since they motivate continuous “affective feedback loops” in the sense that affective responses spur new responses (e.g., through their accumulation or rhythm), which then re-affects the starting point in new ways (Papacharissi, 2015). An example would be when language (e.g., accumulated in a sudden rhythmic peak of comments) reveals a shared affective collective or crowd (Stage, 2013), which then attracts more of the same responses among users or affects the narrator as an affective-rhythmic event (Stage, 2014). With this in mind, research into “affective language” on social media needs to focus on how language is involved in archiving, producing, changing, transmitting, and reproducing affective intensities by being articulated, accumulated, and involved in feedback loops on social media. It might sound like a contradiction in terms to investigate affective publics through signs or language, since recent interest in affect in cultural and media studies has often reproduced dichotomies such as discourse/intensity, mind/matter, and cognition/body and placed language on the left of the forward slash and affect on the right. We take a different approach by arguing that language does not simply transport cognitive meaning; signs are also used and produced by specific and affectively involved bodies, which are more or less present/visible in this language (Knudsen & Stage, 2015a). We believe that this approach could help facilitate a more nuanced

24

The Language of Illness and Death on Social Media

understanding of language and develop easier-to-handle methodologies within the field of affect studies (Wetherell, 2012). The difficulties of developing affective methodologies are connected to how affect has been defined by key figures in the field, such as Massumi, Thrift, and Brennan. An influential idea in the work of these scholars is that the body registers the world affectively before it processes it cognitively (Brennan, 2004; Massumi, 2002; Thrift, 2008) that the body is affectively ahead of the mind, and that the mind’s processing of affect transforms it into something else: semantically categorized emotion. Stressing the importance of distinguishing between affect and emotion, affects are positioned as a relational force of becoming beyond cognition, speech, and even form. An example of this line of thinking is the work of Patricia Clough (2009): “Ontologically speaking, affect is an implicit form. Affect subsists in matter as incorporeal potential. As soon as it begins to in-form, it dissolves back into complexity across all scales of matter […]” (Clough, 2009, p. 48). This understanding of affect clearly has radical methodological consequences due to the inability to stabilize or “locate” the phenomenon being studied: “(A)ny method of attending to affect will profoundly unsettle any conception of method as being in the control of human agency or human consciousness inhering in the human subject” (Clough, 2009, p. 49). Control and human agency rely on cognitive decisions and procedures and thus, according to Clough, seem to work on a different level than affect. It is precisely this methodological conundrum that haunts the field of affect: it cannot be grasped, located, or stabilized and therefore always slips through the fingers of the researcher. Researchers have, however, responded in various ways to this understanding of affect as a relational and virtual force of intensity. One of these ways has been to focus on how affect, in its radical virtuality and becoming, still leaves traces

Theoretical Framework

25

of its force in/on cultural forms from which it differs ontologically; in other words, to focus on how the physical connection between dynamic affect and the production of empirically accessible forms can leave a mark on the latter (Knudsen & Stage, 2012). Perhaps certain forms of language or types of interaction are simply more affected by affect than others, such as interjections and sign redundancy (for example, “arggghhh”) or syntax break downs, such as the sudden stop in writing leaving it to the reader to fill in the gap (known as rhetorical “aposiopesis”). Or perhaps a creative way of engaging with stabilized cultural forms (e.g., conducting an auto-ethnographic study of the act of reading illness blogs) can still tell us something about the affects involved in these productive processes. Already in Parables for the Virtual (2002), Massumi actually seems to theorize certain forms of language as somehow more connected to affective processes than others. In this book, Massumi first describes language as a structure that tames relational and virtual affect by turning it into subjective and cognitive emotion in other words, he enacts a binary opposition between language and affect. Massumi writes: “An emotion is a subjective content, the sociolinguistic fixing of the quality of an experience which is from that point onward defined as personal” (Massumi, 2002, p. 27). However, elsewhere, he also argues that language can actually “resonate” with affect if it is forced out of its conventionalized forms when articulated by an affected body. This, according to Massumi, occurs when language turns into “temporal and narrative noise” and is “in excess of any narrative or functional lines” (Massumi, 2002, p. 25). In our view, examples would include sign production characterized by redundancy (e.g. “åhhhhhh”) or forceful exclamations (“PUHA”), which depart from sharing abstract accounts of events in any straightforward manner (Knudsen & Stage,

26

The Language of Illness and Death on Social Media

2012). Thus, language’s ability to express or trace affective intensities is linked to its deviation from habitual forms of well-functioning and socially codified communication, since, on Massumi’s line of thinking, affective language is characterized by precisely the quality of being unconventional and less coded. Massumi’s description of the two forms of language implicitly invites the researcher to engage in creative tracing as a methodological strategy: where can we find and how can we analyze the affective dimension of language expressing this “resonation”? The idea of affective resonation in some ways resembles Charles Peirce’s famous notion of the indexical sign. Peirce distinguishes among (1) the sign as symbol (based on conventions among language users about how to link a certain sign, cognitive content, and matter), (2) the sign as icon (based on a logic of resemblance), and (3) the sign as index (based on physical (or causal) proximity, such as the handprint in cement being physically connected to the hand) (Peirce, 1885). Massumi’s notion of “resonation” approaches the Peircian understanding of the indexical sign as a sign psychically touched by a force to which it refers materially. Massumi simply seems to argue that certain forms of language can have an indexical relationship to affect and be touched by it to such an extent that the paradoxical nonlinearity of affect disrupts the conventions and structures prevalent in symbolic sign production. Language forms can be touched by the affectedness of the body that produces this language, and affect can thus leave a (distorted) mark on language a line of thinking also present in Julia Kristeva’s work (Knudsen & Andersen, 2018). Signs are thus not only produced by “minds” but also by potentially affected bodies that leave an imprint on them. Or rather, signs do not always refer to matter in the world by the use of convention or

Theoretical Framework

27

resemblance, as they can also trace physical and affective processes taking place in relation to the production of the sign. Another way researchers have responded to the difficulty of developing affective methodologies has been to contest the definition of affect as an “implicit form” and redefine it in a way that makes it approachable through the investigation of cultural forms such as language (Ahmed, 2004; Blackman, 2012; Leys, 2011; Wetherell, 2012). This has been done by re-complicating the theoretical idea of affect as working on a different level than cognition or language and by insisting on blurring dichotomies between mind/matter, cognition/body, and discourse/affect. By following this line of thought, affect research becomes in some sense “normalized” because matter that usually qualifies as “empirical material” (such as texts and speech) is no longer per definition disconnected from affect but is instead part of the ongoing cultural production of affective processes. This latter point has been developed by affect scholars in social psychology and science studies. One of the most influential of these scholars is Margaret Wetherell, who has focused on complicating dichotomies between affect and emotion, affect and cognition, and affect and discourse/meaning as well as the notion of affect as preor transindividual. In doing so, she creates a space for affect researchers to focus on investigating affect in “messy material” and as intertwined with discourse and language in complex ways. Wetherell simply disagrees with the theorization of affect as a force before/beyond cognition and argues that such a definition is based on highly contested neurobiological experiments (see also Leys, 2011) and what she perceives as a simplistic understanding of language and discourse as cognitive tamings of affective excess (Wetherell, 2012). According to Wetherell, the definition of affect proposed by scholars such as Massumi and Clough creates an array of unnecessary methodological problems, because, on this

28

The Language of Illness and Death on Social Media

definition, affects are understood as living a mysterious life in an inaccessible sphere. Wetherell does not believe that affects should be understood in this way. In her view, affects are always created and sensed within cultural environments and through processes that involve some element of meaningmaking, which should not be omitted from the research process. What people say or write about their sensations is a form of meaning-making, which is on the same ontological level as affect itself or at least operates in a messy gray zone between sensation and cognition implying that affect should not be investigated as something separate from cognition: “It is a mistake to try to remove pre-conscious visceral perception from its usual and habitual world/brain/body/ mind contexts, and to artificially freeze and isolate affect as a separate element from the dynamically integrated sequences in which these things normally operate” (Wetherell, 2012, p. 67). The discrepancy between Massumi’s and Wetherell’s approaches to “affective language” is whether only particular forms of disrupted language are relevant for affective research or whether more everyday and narratively well-structured forms of language use, such describing felt intensities or using language with an affective purpose (e.g. to comfort), might also be included. This is also important for our investigation, since the former focuses on non-conventional expressions that clearly trace a spontaneous bodily response (e.g., various outcries) (cf. Massumi), while the latter is also able to include more conventional or normalized forms of communication about affects (e.g., utterances like “my condolences”) (cf. Wetherell). For Wetherell, for example, the constant reproduction of anti-immigrant narratives and discourses would be just as worthy material for an affective analysis as particular forms of heated or “resonating” language (cf. Massumi’s position). And since the relationship between

Theoretical Framework

29

affect, body, discourse/language, and the brain is rather messy, attempting to untangle this relationship is less significant than trying to understand the social situations in which affects (in their messiness) play an important role. Wetherell describes this as an “affective practice” approach, which is characterized by a line of thinking in which: “specifying the exact relationship between affect and discourse is less interesting than investigating the range and entire patterning of affective assemblages operating in important scenes in everyday life along with their social consequences and entailments” (Wetherell, 2012, p. 52). Wetherell’s focus on “affective practice” is thus not restricted to addressing particular forms of heated or disrupted language but is a concept that rather openly invites researchers to consider the multiple ways that language and meaning are engaged in processing and producing affects. And by stressing “scenes in everyday life”, this approach directs research toward empirical rather than purely theoretical observations. In terms of our basic understanding of the affect-languagerelationship, in this book, we adhere more closely to Wetherell than to Massumi, but, nevertheless, we are highly inspired by Massumi’s notion of affectively resonating language. We do not understand affective language as completely disconnected from content and meaning, but we still focus on how language has other affective potentials than talking about affect directly; for example, expressing affects indexically in the form of language.2

2.3. RELATIONAL LANGUAGE, INTERJECTIONS, AND EMOJIS Having outlined our understanding of social media as existential/elemental and discussed how affect theory can offer a

30

The Language of Illness and Death on Social Media

fruitful approach to investigating social media language, in this section, we will examine the more specific language elements that are important when aiming to understand the affective publics of illness, death, and grieving. Linguistic and communicative analysis of written online interaction is an emerging research area whose methods are based on a collection of approaches ranching from computer-mediated discourse (CMD) and social semiotics to conversation analysis (CA), digital conversation analysis (microanalysis of online data), and other pragmatically oriented theories. The conversation analysis perspective includes a strong focus on sequence and progression, that is, on the structural progress of the conversation: “Sequences are the vehicle for getting some activity accomplished, and that response to the first pair part which embodies or favors furthering accomplishment of the activity is the favored or, as we shall term it, the preferred - second pair part” (Schegloff, 2007, p. 59). On this line of thinking, interacting on social media is less about making a stand-alone and everlasting statement and more about being in a process of togetherness and proximity through interaction. Conversation analysis focuses on negotiation and is process-orientated and thus informs our understanding of language use and interaction. As we will show in our analyses, the participants make an effort to be understood properly and to understand and demonstrate an appropriate understanding of the other participants. And they do so via the only means available to show they are contributing to the interaction: by writing, liking, or posting a picture or a video. But why are all these minor or major acts of interaction taking place? This question has been answered by different theoretical positions that all in one way or another focus on interaction, the body, and the emotional and physical elements of communication. When it comes to understanding the linguistic part of this, besides pragmatics,

Theoretical Framework

31

we turn to conversation analysis of online data (David Giles, Stommel, & Paulus, 2017; Fox Tree, 2015; Garcia & Jacobs, 1999; Gibson, 2007; Giles, Stommel, Paulus, Lester, & Reed, 2015; Hougaard, 2017; Meredith, 2017; Meredith & Potter, 2013; Meredith & Stokoe, 2014; Paulus, Warren, & Lester, 2016) and computer-mediated discourse (Herring, 2010; Oeldorf-Hirsch & Sundar, 2015). At the center of all these theories is a basic understanding of interaction as verbal and nonverbal acts that coordinate and negotiate relational work; a “fundamental assumption of conversation analysis is that social action and interaction are methodically produced by and for one another” (Heritage & Robinson, 2011). People engage in the process of interaction as a way of “doing being together” and “doing being ordinary” (Sacks, 1985) and therefore, in almost every action they take, there are “preferences for agreement and contiguity in sequences in conversation” (Sacks, 1987, p. 58). According to Watzlawick’s first axiom, it is impossible not to communicate when interacting; all behavior should be understood as an act of communication (Watzlawick, Bavelas, & Jackson, 1988). As a consequence, a pause longer than one second in conversations will be experienced as awkward and unpleasant and thus preferably avoided (Jefferson, 2004) (often by activating our large arsenal of discourse particles), since pauses are seen as an attempt to not communicate, which is interpersonally problematic: why won’t you talk to me? In written social media interaction, pauses and an awareness that time is passing play a slightly different role. As the interaction is not carried out simultaneously (like in conversations), the fine-tuned systematics of turn-taking known from conversations is less important (Herring, 1999; Meredith & Stokoe, 2014). Posts are (if not deleted or reordered algorithmically) shown in the same order as they are sent, and this sequentiality cannot be changed concurrently through

32

The Language of Illness and Death on Social Media

negotiation. Even though the interaction can sometimes be fast and collaborative, it never becomes instantaneous like spoken conversation. However, this does not mean that temporality is not vital for the interaction. For example, when people chat via Messenger or other similar communicational services, the jumping hesitation dots that signify that the other person is typing is obviously interpreted as a marker of instant activity. Such markers are called “typing awareness indicators” and are presence signs that demand a person’s attention and trigger his/her engagement in the conversation. Watzlawick’s second axiom is that “All communication has a content and a relationship aspect such that the latter classifies the former and is therefore a metacommunication” (Watzlawick et al., 1988, p. 54). The relationship aspect is clearly very important in social media, and, even though some of the posts in the two cases we examine contain important information about health and treatment, this content aspect often seems secondary compared with the relationship aspect. Via different kinds of data transference (such as lighting candles, donating money, or writing hopeful wishes), contact is established and sustained and functions as a way of showing one’s engagement in the situation. Even the smallest signs, such as liking a post, display a certain kind of commitment (West & Trester, 2013). This line of thinking is congenial with Peters’ and Malinowski’s idea of media and language as vehicles for being (together) and not always for exchanging meaning and propositional content. In conversation analysis terminology, these small signs are known as “minimal responses” (signs such as “yeah”, “uhhuh,” and “no”). With these signs, the listener signals interest in the other speaker and supports his or her deliverance of a part in their alternating turn-taking in the interaction (Sacks, Schegloff, & Jefferson, 1974). These small signals often work as a way of engaging in the conversation without claiming

Theoretical Framework

33

the right to take over the turn, that is, without wishing to interrupt and be the one talking (Schegloff, 2007) but still wishing to engage in the conversation and in sustaining the relationship between those taking part in the interaction. In conversation analysis, it has been shown that, in conversations, participants expect the interlocutor to produce minimal signs of understanding if he or she is describing a problem or relaying news (Laursen, 2003). However, since these signs of understanding are not available in written online interaction, their functionality is in a way transferred to the use of emojis, digital reactions, and expressive spelling. We believe that the urge to produce a minimal response could explain the growing role of likes and other reactions on social media. Pressing the like button may be the smallest sign of commitment (West & Trester, 2013), but, according to the theories of minimal response, this kind of response is important in maintaining the interaction. The like feature (as well as other Facebook reactions or Twitter and Instagram hearts) acts as a small, non-turn-taking sign that producers understand and acknowledge what the other interactants are communicating/doing through a form (an emoji-like icon) and verbal explanation (like, love, haha, wow, sad, mad) that while simple has an important impact. It has always been difficult to communicate to stone-faced audiences. Sometimes a simple nod (or like) is all we need. From its emergence in the early 1980s, computer-mediated communication (CMC) research has been preoccupied with the representation of socioemotional cues (Sproull & Kiesler, 1986). At first, this discussion covered the wide topic of behavioral consequences of cyberspace for human beings covering the hopeful, worrying, and even dystopian aspects of CMC. Today, this discussion is almost exclusively concerned with emojis and emoticons. The investigation of emojis is a growing branch of CMC research. Herring and

34

The Language of Illness and Death on Social Media

Dainas treat emojis as one of six types of “graphicon” (Herring & Dainas, 2017). In their presentation of these graphicons, they draw attention to the emoji as the most frequent and multifunctional sign that has apparently “hit a sweet spot,” since they are “neither too large nor too detailed” (Herring & Dainas, 2017, p. 8). Besides their primary function of displaying reactions or “tone modification” including clarifying intent and hedging the illocutionary force of the utterance (Herring & Dainas, 2017), which Herring outlines in an earlier work (Dresner & Herring, 2010) Herring and Dainas claim that emojis “function as conversational turns in and of themselves, conveying propositional content” (Herring & Dainas, 2017, p. 6), and they thereby underline the linguistic importance of emojis as research objects, especially since emojis seem to be replacing emoticons by fulfilling the same paralinguistic functions (Pavalanathan & Eisenstein, 2016) of completing unfinished expressive tasks (Provine, Spencer, & Mandell, 2007). Scholars have often pointed to the inherent semantic diversity (Miller et al., 2016; Stark & Crawford, 2015) and ambiguity of emojis (Rodrigues, Lopes, Prada, Thompson, & Garrido, 2017). Semantic diversity produces a potential for misunderstanding, for example, Miller et al. found that only 4.5% of a sample of the 25 most popular emojis, that is, anthropomorphic emojis (representing faces and people), displayed low variance in the way their sentiment was interpreted (cf. Miller et al., 2015, p. 260). However, to some extent, semantic diversity is “not necessarily undesirable” (Herring & Dainas, 2017, p. 9). Stark and Crawford even argue that a “message created with an emoji prompts a hermeneutic impulse” (Stark & Crawford, 2015), since the complexity of the meaning resembles the rebus that “has a checkered history of both delight and repulsion” (Stark & Crawford, 2015, p. 4). The immediate context of the concrete

Theoretical Framework

35

emoji is naturally of utmost importance (Danesi, 2017). For example, Rodrigues uncovered a difference concerning the use of emojis in a romantic context: emojis on positive replies were seen as redundant, but emojis on negative replies were seen as signaling a greater interest and thus the replies were perceived as more positive (Rodrigues et al., 2017). In the same way, emoticons were also used to help soften requests or rejections (Skovholt, Grønning, & Kankaanranta, 2014). Thompson et al. even found that sarcastic messages ending with emoticon elicited physiological responses, such as higher arousal or reduced frowning (Thompson, Mackenzie, Leuthold, & Filik, 2016), which supports the idea that visual and paralinguistic components in communication are vital and that the “production of writing is not a disembodied activity of pure cognitive processes but is instead a physical activity” (Lebduska, 2014). In relation to affect and emotion, the emoji is often seen as crystallizing the force of a feeling in an icon. Along with other types of emoticons, emojis communicate affective information “not enough to alter the valence of the message itself, but enough to alter the intensity of the affect” (Riordan, 2017, p. 552). The more nonverbal cues in a message, the stronger the affect also with non-face emojis (Riordan, 2017, p. 355). This might appear to contradict Rodrigues’ point that, in some messages, emojis can be perceived redundant, but whether or not this is the case will most likely depend on the context, for example, whether the messages were written in romantic or sorrowful circumstances. When interviewed about their feelings toward (the emojis used in) the messages that conveyed support in the Facebook groups, MIV’s and Lærke’s mothers describe them in terms of love and alleviation and not in terms of redundancy.

36

The Language of Illness and Death on Social Media

Based on interview data, Kelly and Watts found that emojis have the function of maintaining conversational connection, that is, that they act as a type of phatic communication that shows connection and prevents the user from feeling ignored because of a lack of response (Kelly & Watts, 2015), and of creating a shared and secret uniqueness among interlocutors, that is, that they create meaning that is only understood within a certain relation (cf. Kelly & Watts, 2015, p. 5). Furthermore, certain emojis for example, the heart emoji can be seen as “a low-cost phatic” way (Kelly & Watts, 2015, p. 4) to emphasize and demonstrate love and affection between the participants in a conversation (Klastrup, 2018). This book also deals with a different kind of affective language, namely interjections (such as “ohhh” or “pheww”), which, in line with Goffman’s concept of “response cries” (Goffman, 1981), we understand as more or less impulsive reactions to something that happens during the articulation of the interjection. Interjections are mostly used impulsively but can also perform a more intentional and voluntary act often distinguished through the concepts of “primary” and “secondary” interjections. And, as Ulrike Stange points out (Stange, 2016), it is fruitful to distinguish between interjections used emotionally and interjections used emotively. The emotional use is seen as a spontaneous, unintentional leakage or bursting, the primary interjection, and is therefore very different from the emotive (secondary) use, which is strategic, persuasive, interactional, and other-directed. The affected body as a trigger (Scherer, 1994) has a remarkable influence on the choice of specific interjection for two reasons. First, because the affected body activates the need to communicate, and second, because bodily tension makes certain sounds more obvious and likely than others, since they are intertwined with our exhalation and

Theoretical Framework

37

non-exhalation, with holding our breath or letting go. Goffman’s description of interjections as “a natural overflowing, a flooding up of previously contained feelings, a bursting of normal restraints, a case of being caught off guard” (Goffman, 1981, p. 99) contains important explanations of the primary interjections and emphasizes their uncontrolled and impulsive nature (as in a mental drive or instinctual urge). This point is supported by the Wittgensteinian distinction between an expression (in his words, a “cry”) and a description: But here is the problem: a cry, which cannot be called a description, which is more primitive than any description, for all that serves as a description of the inner life. A cry is not a description. But there are transitions. And the words “I am afraid” may approximate more, or less, to being a cry. They may come quite close to this and also be far removed from it. (Wittgenstein, 1953) Yet, in this quotation, Wittgenstein also highlights the difficulty of creating a clear line between purely expressive and purely descriptive language. A cry does communicate something from which people can extract meaning, but in a more open, affectively intense, and diffuse way than conventionalized communication typically offers. When exploring the field of interjections, we must briefly touch upon the process of coordinating meaning as the primary condition for every verbal interaction. Use of language characters is always contextually embedded in the present situation; situated use of language does not, however, imply a negotiation and coordination of the meaning of every word and sentence. Our understanding of language is built upon interactionally established patterns of meanings and

38

The Language of Illness and Death on Social Media

routinized and socialized understandings; this implies that our use of language is to some extent conventionalized. Individuals may not know exactly why they are using this particular sound or set of sounds, but this does not imply that they are simply emitting sounds arbitrarily and haphazardly. They invariably wish to make themselves understood, to communicate, that is, to establish a common understanding of the situation, and the listener/reader will work on the premise that, as humans, we are unable to not-communicate and will thereby seek to interpret the sounds as something meaningful. This stabilization of meaning, however, must not be confused with having a common, stable code that functions irrespective of the circumstances of the situation, the relation between the interactants, and the interactants’ emotional, affective position. Accordingly, we agree that interjections as well as other language elements involve processes of interpersonal conventionalization and cultural socialization (Ameka, 1992; Goddard, 2014), but we are keen to underline the bodily element in our choice of interjections (which, until now, has been largely neglected), and, in doing so, we aim to encourage a Peircian reading that focuses on the indexicality of the language. Our approach to the data also reflects the idea that language signs do not only transport meaning: the fact that language is conventionalized and socialized does not imply that it always has a strong content component. Language is thus never completely disconnected from content and sociality, but it is also not always only about content. Particular forms of language simply have the main function of signaling presence and confirming social and affective relations. To some extent, we draw upon a scattered tradition of what might fall under the umbrella of “phono-semantics” (Jakobson, Waugh, & Taylor, 1979); but we wish to examine the phonetics of particular interjections as a result of the

Theoretical Framework

39

interaction between the body, the nervous system, and the mouth and breath. Phono-semantics appears to focus on understanding word symbolism or sound meaning in contrast to the Saussurian view that the relationship between signifier and signified is arbitrary. However, while phono-semantics concentrates on the interrelatedness of form and content, for example, the name of the cuckoo originating from the sound it makes, our analysis of affective interjections focuses more on the interrelatedness of form (sound) and body. The sound of the bird is used as a signifier, establishing a connection between the chirp of the bird and the signifying unit, but, as we will argue in the next chapter, the process of meaningmaking of, for example, the sound of the primary interjections “oh” and “phew” involves both a connection between interjection sound and conventional meaning and between interjection sound and the body making the sound. The aural element plays a different role in interjections than in onomatopoeias, which are often seen as closely related to interjections (Brink, 1998; Hansen & Heltoft, 2011). Onomatopoeias are imitative wordings delivering a reported sound. Interjections, on the other hand, contain a situated pointing and referring element; they are indexical (Wilkins, 1992). While onomatopoeias are reverberations that reshape the sound and thereby the experience and impression of what has happened, interjections articulate what is happening emotionally right now. Put simply, interjections show rather than say (Wharton, 2003). Both word classes onomatopoeias and interjections belong to the expressive area of language use and intensify and vitalize communication. However, grammatically and communicatively, an important difference is that interjections (unlike onomatopoeias) constitute a propositional utterance in themselves. This is most likely related to the fact that interjections are “exclamations” (Ameka, 1992, p. 103): they express

40

The Language of Illness and Death on Social Media

complex emotions and do not just imitate the sound made by or associated with, for example, an act or an animal. It has always been difficult to classify interjections and operationalize them as a word class (Ameka, 1992; Wilkins, 1992). In a way, interjections are on the edge of language (when language is seen as having a precise and conventionalized meaning), because they are occasionally undecipherable. Inspired by Goddard (2014) and Wharton (2003), and in accordance with the aforementioned diversities of Massumi and Wetherell, we could therefore operate with a tripartite division or a continuum of expressions ranging from indistinct and slurred humming or other kinds of non-standardized noise-making to the definite and largely consistent and conventionalized articulation of well-known and normatively accepted interjectional sounds. We also encounter challenges when we consider the spelling of interjections, since conventional spelling is not always adequate when it comes to representing pronunciation. Take for example the interjection that could be spelled “hmpf.” This interjection is most likely considered an expression of doubt or contempt, but what is the difference between “hmpf” and “hm” and “pf”? Why does the spelling contain no vowels, and how is this interjection eventually articulated (with or without a silent p?)? What are the differences between the 12 Danish versions of the interjection “puha”/“pyha” (“whew”/”phew”) in our material: “puh,” “puu,” “puha,” “pu ha,” “phuha,” “puhha,” “puhhhhh haaaa,” “pyh,” “pyyy,” “pyhaa,” “phyyha,” “pyyyyyyyh”? Do all these versions do the same job? This raises the question of how and to what extent interjections are conventionalized and whether there are any differences between the conventionalization of the written and spoken versions of an interjection.

Theoretical Framework

41

In their introduction to Goffman, Jacobsen, and Kristiansen explain how he understands the definition of situation as having “a fundamental interactional goal (that) is to sustain a collectively shared definition of the situation enabling participants to decode normative expectations and to adjust behavior accordingly” (Jacobsen & Kristiansen, 2015). In written online interaction, meaning is also created through reciprocal negotiation. In order to capture the close collaboration and negotiation between the interactants when they produce posts or respond to each other’s posts, we must try to interpret what in written language are more rare types of signs, acts, and uses of language, for example, emojis and written interjections. Is the act of physically lighting a candle different from posting a photo of the lit candle and different from the act of writing that you (want to) do it? How can we perform engagement, empathy, and condolence through written online interaction in almost real-time yet still at a distance? Doing research on the sensitive topic of illness and death on social media simply forces us to ask new questions: If you cannot hear or see the ill or mourning person, how do you respond to (i.e., show reactions toward and let yourself become emotionally touched by) her or his actions? According to Searle, speech acts are utterances that have social consequences in the situation of communication. Following “the principle of expressibility,” which states that there will always be linguistic expressions corresponding to the communication need (Searle, 1974), putting something into words should always be interpreted as a meaningmaking act (unless you are mad or bad i.e., the Golden Rule behavior Watzlawick et al., 1988). Linguistic choices can be more or less successful, but never more or less correct. Even though some of the linguistic choices in social media may at first seem meaningless, superfluous, and redundant, we must, according to Searle and Watzlawick et al., seek to

42

The Language of Illness and Death on Social Media

understand the signs as both required and essential as a way to negotiate and coordinate our understanding of situations like this, that is, as a way of grasping the meaning of life (and death) and the roles that language users play in different life situations also the tough ones.

NOTES 1. The classical definition of SNSs is provided by boyd and Ellison, who describe them as ”web-based services that allow individuals to (1) construct a public or semi-public profile within a bounded system, (2) articulate a list of other users with whom they share a connection, and (3) view and traverse their list of connections and those made by others within the system. The nature and nomenclature of these connections may vary from site to site” (boyd & Ellison, 2007, p. 2). 2. Although the differences between the work of Massumi and Wetherell can seem profound, there are also noticeable similarities. In The Politics of Affect (2015), Massumi confronts what he believes to be some of the misunderstandings that his analysis of affect has raised. One of these misunderstandings is that affect is prelinguistic. Here Massumi responds that “every act of language involves an expression of affect. Affect is the infra-conditioning of every determinate activity, including that of language. The preferred prefix for affect is ‘infra-’. ‘Pre-’ connotes time sequence” (Massumi, 2015, p. 212). By focusing on these sequences by Massumi, the fierce debate about the relationship between language and affect is seemingly silenced. “Pre-” is replaced by “infra-” and every act of language is an expression of affect.

CHAPTER 3 FORMS OF AFFECTIVE LANGUAGE

In this chapter, we investigate the different choices of interactions in certain life situations in order to understand a relatively recent phenomenon. While death and illness have historically been “ordinary,” modernity with longer life expectancy and the sequestrated institutionalization of illness and death has for a long time pushed rituals, including Danish rituals, of illness and mourning into the private sphere. We occasionally experience spectacular deaths, for example, funerals of celebrities or public roadside memorials (Klastrup, 2015), but this does not change the fact that we particularly those of us raised in Western countries have an underdeveloped capacity to handle and react to situations of death and illness. We have little chance to prepare ourselves for how to act or how to know right from wrong in these situations, even though we all have a clear sense that there is indeed a right and wrong. What should we say to someone faced with terminal illness or the prospect of becoming 43

44

The Language of Illness and Death on Social Media

futureless following the death of a child? (Segerstad & Kasperowski, 2014, p. 3). Even when we write in a reflective manner by using metaphors and figurative language and by drawing on our capability and knowledge of the poetics of language, we turn to our embodied physical experiences and orientate ourselves in relation to the body in time and space: up, down, future, past, and the human body as a container (Lakoff & Johnson, 1980). Moreover, these orientations also help articulate affective values and qualities. According to common cultural assumptions, the vertical orientation “up” is primarily positive, while “down” is primarily negative. This also saturates the language in the two Facebook groups examined in this book, where participants write about “a children’s heaven” from which the child “is looking down” on us, or when they describe the children as “stars” and “angels” having “wings” and “up” to whom we can look or send “a lot of balloons.” Furthermore, the parents are “idols” and an “inspiration” to cling on to in a desperate situation and should be compared to “superheroes.” This could in rhetorical terms be called epideictic communication. The members of the Facebook group praise and honor MIV as well as his brother and his parents. They actually almost glorify them by writing, for example, that they are “admirable” and “dignified” and people for whom the members have the “deepest respect,” “taking off their hats,” and “bowing their foreheads to the dust.” Through words, the members rewrite and adjust the situation at the same time as they create a community for the bereaved and the involved. They reassure and encourage each other as an attempt to ease the pain and develop a hope for tomorrow. It is also possible to identify a horizontal orientation in the language used on the Facebook groups, as participants remark that it has been “a tough journey,” that the children have “passed away” or “gone ahead,” but clearly “too

Forms of Affective Language

45

soon,” leaving behind all the things they did “not get the time for,” but also “leaving marks.” One member writes that it is as though “the time has stopped,” and another member writes that it is hard to understand what the bereaved “are going through.” However, in the midst of existential limit-situations, these cultural axes of orientation can also begin to tremble. When confronted with illness and death, the expression “words fail me” is often used as a way to explain the hesitation faced with the difficulty of expressing bodily experiences that the mind is perhaps struggling to understand. We do not always know how to communicate a reflective verbal response to such experiences, and perhaps a reflected response is not what is required. In situations of severe illness and death, the involved people often turn to different kinds of “bodily actions” (Scherer, 1994); for example, making sad facial muscle movements or bodily contractions. However, when it comes to social media, this face-to-face action repertoire is not available. In the following chapter, we look into the most-used words, phrases, and expressions in the two Facebook cases described earlier in order to provide a picture of the particular affective vocabulary used in this type of social media practice. Some of these words, phrases, and expressions are highly conventionalized “affective practices,” while others seem to resonate with an intense force of affect, as a kind of emotional release (Willis & Ferrucci, 2017).

3.1. “MY CONDOLENCES” AS A RITUALIZED PHRASE When it comes to making a verbal or written interaction with a bereaved person, the phrase “my condolences” (Danish: (jeg) kondolerer) is perhaps the only ritualized wording at our disposal in Denmark. In a culture in which death is

46

The Language of Illness and Death on Social Media

private and excluded, this intransparent and archaic phrase is pretty much all we have. Etymologically “con” means “with,” and “dolere” means “feeling ache” or “suffering pain with another,” so the phrase “my condolences” literally means “I am feeling ache with you.” To say “condolence” is to make a performative statement, which, according to Searle and Austin (Austin, Urmson, & Sbisà, 1982; Searle, 1974), means that the act of verbalizing conflates with the act of doing. Since the performative force depends on certain conventional procedures, to make the performative work, the person performing must have a certain intention or emotional mood while saying or writing the performative, which must comprise a certain wording in order to activate the performative substance. In making the utterance of a performative speech act, we perform the act and thereby do not simply describe but also change reality (we become a condoler) through the performative utterance (or sentence). “My condolences” would be at the conventionalized pole of affective language described earlier though, following Wetherell, this does not imply that affect is not expressed and produced through this kind of utterance. In the cases in which condolence is directed toward the bereaved families (the parents or brothers and sisters), this could be read as the participants’ attempt to convey that they are suffering and feeling pain with them that they are part of the same affective community of co-sufferers. However, the fact that very few of the condolence messages contain an agent (the infinitive kondolere in Danish specifies neither a sending nor a receiving agent) could indicate that participants are not necessarily aware of the literal meaning and performative power of the phrase, and this in a way reduces its power. Instead, or as a complement to the performative meaning, they activate the ritual power of the phrase and mirror the other participants’ practices. In any case, the

Forms of Affective Language

47

bereaved experienced these messages as a strong emotional and sympathetic manifestation. According to MIV’s mother, Julie Eid, it felt like a “huge mutual sorrow; those who did not know him as well as I did, felt a sorrow just as overwhelming.” We observed that many of the participants in the Facebook groups turned to precisely this “condolence” phrase and thereby performed linguistic accommodating (Shepard et al., 2001), which means that users begin imitating other users’ language choices. In the case of MIV, digital counting reveals that 1657 users wrote their condolences. This makes the phrase the sixty-third most-used word in the group, which is significant considering that the group contains almost 50,000 posts and comments. In addition, in the case of Lærke, which had lesser participation, the numbers are even more astounding. In this group, 245 users wrote their condolences, which, in a group of approximately 3,000 posts and comments, makes the phrase the twenty-fifth mostused word. If we focus on the day of death in the two cases (March 5, 2015 (MIV) and August 6, 2015 (Lærke)), digital counting shows an even more remarkable picture. In the case of MIV, the phrase was used 1,569 times out of 6,109 post and comments, meaning that the phrase occurred in every fourth comment, making it the tenth most-used word that day. In the case of Lærke, the overall numbers are much smaller but no less interesting. The phrase was used 237 times out of 396 comments, meaning that the phrase occurred in almost twothirds (60%) of the comments, making it the most-used word that day. One might argue that the vast amount of contributions and participants in the larger MIV group made the phrase more frequent simply as a ritualized way of paying attention, yet this is challenged by the fact that, in the smaller, more local case, proportionally more people make use of

48

The Language of Illness and Death on Social Media

the phrase. The phrase “condolence” is clearly the most-used way of expressing sympathy and showing support to the bereaved. Several questions aimed at understanding social and cultural consequences can be posed in relation to our use of the phrase condolence: is it primarily a non-committing utterance, that is, is it simply a way to tell the other that you have noticed his or her loss and that you know what is culturally expected of you in this particular situation, but, apart from this, you do not wish to get further involved? Is it a manifestation of social media superficiality a way of disguising a lack of deep emotional participation? Is it an empty gesture? Or is it an indication of the fact that we have no inherited social structures to lean on in times of death and therefore turn to such a stiff utterance? Based on our material, it is very difficult to say something definite about the intentions and sincerity of the posters. But what we can say is that this public verbatim articulation of condolences seems to be a prominent way of sharing grief and, as such, we can approach it as part of a repertoire of more culturally conventionalized ways of doing public grief on social media.

3.2. “REST IN PEACE” OR JUST RIP? The most prevalent expression of concern for the bereaved is the phrase of condolence, but, due to their frequency, it is important to mention two others: the act of lighting a candle and posting an image of this arrangement and, what might be its verbal equivalent, the phrase “Rest In Peace” or “RIP” (in Danish Hvil i fred; from Latin Requiescat in pace). This latter religious saying is often found on gravestones or in obituaries wishing the soul of the deceased eternal rest and peace in the afterlife or articulating a hope that the physical body will be

Forms of Affective Language

49

able to lie peacefully in the grave (and not become a ghost). In contrast to the focus on co-suffering in the condolence phrase, the words rest and peace indicate a state of ease and freedom further indicating that now a peaceful condition, without the struggle and fight that characterized the terminal period of the child’s life, has been reached. The term has entered common parlance within Western culture as a term used to acknowledge someone's death, thereby ignoring or merely acknowledging its religious connotations. The abbreviation RIP is widely used also in Danish, referred to as “RIPing” (Klastrup, 2015). In the two cases we examined, however, the abbreviated form was not dominant: in the MIV case, on the day of death, “Rest In Peace” was the twenty-sixth most-used phrase and “RIP” the fifty-second; and, in the Lærke case, on the day of death, “Rest In Peace” was the thirty-first most-used phrase and “RIP” only the eighty-ninth. While “condolence” is directed toward the bereaved (the parents and sibling, i.e., the immediate family), “RIP” and “Rest in Peace” focus on the deceased child (either in the second or the third person “may you” or “may he rest in peace”). The phrases (“condolence” and “RIP”) essentially serve two different functions, but it is not clear whether the users are aware of this difference or whether they use the phrases interchangeably. The high number of “condolences” indicates that, for the users, this act of expressing sympathy with the bereaved family is more natural than RIPing; they maybe experience themselves as almost acquainted with the parents. An explanation could also be that the use of RIP is about to change. In a language column from February 24, 2018 in the Danish newspaper Politiken, Marianne Rathje discusses how Danish people said goodbye to Prince Henrik of Denmark, who died on February 14, 2018. In this context, she describes how a new usage of the phrase “RIP” is

50

The Language of Illness and Death on Social Media

emerging (especially among young people), where “RIP” is used to describe a range of disappointments when a plan or idea fails to materialize: just like the phrase “It sucks!” (Rathje, 2018). This highlights the fact that both “condolences” and “RIP” are relatively flexible and open utterances, which can be used to express all sorts of affective investment through a conventionalized form. The combination of semantic and affective openness and conventionality could explain its widespread usage in the two cases. Both utterances belong to the expected vocabulary, but they can at the same time encompass everything from deep co-suffering to a quick notice of care. In this way, the expressions are currently experiencing a “pragmaticalization” (Erman & Kotsinas, 1993), that is, they are changing from bearing semantic content to being a structural marker; however, in this case, the verbal part being pragmaticalized is not “serving as a text structuring devise” (Erman & Kotsinas, 1993, p. 79) but is instead structuring cultural and interpersonal acts a process which could be called “cultural pragmaticalization.”

3.3. ARRANGING AND LIGHTING PHOTO CANDLES As mentioned earlier, the other prevalent way of showing support in the two Facebook groups was the act of lighting a candle, taking a photo of a lit candle, or writing about lighting a candle. A few posts contained internet pictures (stock photos), but the vast majority of the participants had seemingly taken a photo of a personalized candle arrangement in their home. The act of lighting a candle clearly serves several interactive functions. In overwhelming situations like this, many people feel the need to do something practical in order to overcome the sudden experience of the shattering facts. Lighting a candle could thus be seen as a first step toward

Forms of Affective Language

51

keeping the memories or perhaps even the soul of the deceased person alive and near-felt. This sign-making action makes emotions visible by externalizing them in a small atmospheric design and may thereby make them easier to recognize, feel, and deal with. Several of the posts are clearly made by people who have followed and taken part in the development over a long period of time, and, for them, this day is also the end of a narrative that they themselves feel part of. The parents writing that their child has died terminates a sad and grueling story, but it also potentially terminates the followers’ participation in this story. The cascade of users lighting candles prolongs this participation and, in the MIV group, one user even suggests lighting candles as a coordinated evening performance. In this way, the users invent what could be called a “personalized action frame” (Bennett & Segerberg, 2012), in which they can produce singular and creative versions (a personal arrangement of candles) of a common practice or frame of action (sharing images of candles as a form of mourning practice). As we have argued elsewhere in this book, the death of the child also potentially leaves the participants with a complex and conflicting set of emotions. In such a multifaceted situation, the physical action of lighting a candle and watching the sensitive and flickering flame is both comforting and soothing. Moreover, the posting of a photo of self-made and customized candle arrangements, or at least writing about wanting to perform this ritual of virtually/actually lighting a candle, could be understood as one body and mind trying to reach out and relate to another suffering body and mind in a situation in which we often fall short of words to express our sympathy and sorrow. The flame is a sign of life and a link to other spheres. We are familiar with the tradition of lighting a candle to

52

The Language of Illness and Death on Social Media

commemorate the deceased from the Catholic Church. We also know the eternal flame from the Olympic games, where it originally symbolized contact with the gods (when sacrificing to the gods, gifts are often burned). In the ritual of lighting a candle in relation to death and commemoration, the single flame might symbolize the soul of the deceased, and with its lively movements, it can create a sense of something invisible being present. The fire is divine and has ritual functions linked to the fact that even a small candle can illuminate darkness, which is most likely why many Danish people place a candle in their windows on May 4 every year to celebrate the liberation of Denmark in 1945 and to symbolize freedom. At the same time, the flame seems fragile and in need of protection. In the Lutheran churches in Denmark, the pure and clear space with no (or very few rediscovered and unveiled) murals and no incense and other elements to distract users from listening to and understanding the Word turns the lighting of a candle into a small yet significant way of contributing a physical and sensuous form to the intellectual and verbally performed religiosity. As an example, in recent years, it has become possible to light a candle in half of the Danish National Churches in Copenhagen a ritual that continues to gain ground. Last, but not least, man-made and controlled fire attracts communities (e.g., the camp fire) by offering a shared focus toward light in the midst of darkness and by creating a warm atmosphere that invites people to come together and exchange stories face-to-face (Peters, 2015). Just like the “RIP” and “Rest in Peace” messages, lighting a candle and posting the image is thus a diffuse utterance of care (with multiple cultural associations), but one that allows for more personalized input and creativity. In this way, the image candle could also be seen as expressing a higher level of dedication and effort.

Forms of Affective Language

53

3.4. THE LIKE AS SHOWING MINIMAL AND SPONTANEOUS ENGAGEMENT The aforementioned practice reinterprets established habits of grief work and adapts them to social media, but the affordances of Facebook also make it necessary for the participants themselves to adapt to the medium. In these digital surroundings, the like as a cultural sign, a “social button” (Gerlitz & Helmond, 2013), and a “communicative pattern for conveying command”(Akoumianakis, Ktistakis, & Michailidis, 2015) has increased “the bandwidth of communication by allowing users to exercise their agency not so much to affect the order of executing functions as to notify ambient affiliates of their state of mind” (Akoumianakis et al., 2015). With its own platform-specific constraints and possibilities, the like has become a new kind of minimal response on a microlevel and, on a macrolevel, it of course acts as an important source of knowledge about users to be monetized by the platform (Dijck, 2013); the currency in social media is engagement and participation (Qualman, 2011). We are more prone to like close friends (Eranti & Lonkila, 2015), and, in relation to death and mourning, the like is open to all and signifies support “whereas commenting is predominantly reserved for closer friends and relatives of the deceased” (Wagner, 2018, p. 5). The last part of this citation does not hold for our specific cases, but the like truly is a significantly widespread and all-round tool. There are different ways to interpret the social meaning and function of the like on social media. Clicking on the like button displays microacknowledgment and salutation, but it can also just indicate that you have seen, and potentially read, the message posted. Likes may be used (1) to acknowledge the gratifications obtained with the use of Facebook, (2) to share information

54

The Language of Illness and Death on Social Media

with others, and (3) as a tool for impression management (Ozanne, Cueva Navas, Mattila, & Van Hoof, 2017). The like button “contains a binary code: Either users like an object, or they remain indifferent” (Eranti & Lonkila, 2015). The users “employ this binary code for multiple and finetuned purposes of sociality”; for example, Eranti and Lonkila list 16 different types of like, ranging from the plain “content like” to different types of “reciprocal likes” to the “dating like” and the “pressure like” (Eranti & Lonkila, 2015). The like is a nanolevel interaction devise that activates your network consciousness and skills and is especially used in order to develop, maintain, and end social relationships and as a way of balancing contradictory audiences and expectations (Eranti & Lonkila, 2015, p. 7). On a more critical note, the like has been linked to the dangerous family of clicktivism: “a reactive and impromptu gesture, carried out in response to an observed political action or message; as a pronouncement of general interest or support” (Halupka, 2014). Similar to other kinds of minimal responses, to like is to signal a certain level of interest with the participants, but it is a short-lived contact that does not claim the right to a lengthier and personal interaction. The like, however, has the potential to transmit information quickly to a large audience, being “an effective, direct means to stimulate the behavior of others in a network” (Ozanne et al., 2017). Speaking in conversation analytical terms, to like is to make a non-comment with the metamessage that you are showing interest, so it is therefore an important tool of interpersonal understanding, since the like is a declaration of interest nonetheless and, in the tragic circumstances of these Facebook groups, it is also a declaration of spontaneous support. The like thus has the capacity to not only show a bodily spur-of-the-moment but also to motivate affective

Forms of Affective Language

55

responses at the level of the poster “being liked” (or met with silence). According to Gerlitz and Helmond, the like button: .

provides a one-click shortcut to express a variety of affective responses such as excitement, agreement, compassion, understanding, but also ironic and parodist liking […] Yet the quanta of data produced in such processes are not just metrifications of intensities, they also have intensive capacities themselves, entering various processes of multiplication […]. (Gerlitz & Helmond, 2013, p. 1358) The like contains no obligation for further contact. But instead of viewing the like as a superfluous and shallow reflection of a non-committed and superficial conformityperforming herd (Egebark & Ekström, 2011), we propose viewing it as a way to trace minimal affective engagement and attention. It is precisely because the like does not require a reflected emotional investment or a verbally well-articulated message (which might need to be defended later) that the poster is able to follow his/her preferences and allow the like to reflect in-the-moment processes of attraction, neutrality, or repulsion. Of course, not all likes should be interpreted in the same way. Just like other body signs for example, nodding the head the like is a polysemantic sign whose meaning is both situated and thereby, depending on the context, under continuous negotiation. In 2015 (when our cases were most active), the like was the only reaction button on Facebook, whereas, now, there are six reactions available. This helps to explain why the heartbreaking news on the MIV group that MIV had died was met with 83 likes and not by the reaction “sad,” which would seem more appropriate today (Wagner, 2018).

56

The Language of Illness and Death on Social Media

Later the same day, some of the posts for example, a post announcing a torchlight event on the beach in MIV’s memory engendered a huge number of likes (more than 2,000); the primary aim of these likes was to show kindness in general and to approve the torchlight event in particular. The like is, however, generally a resource that (with its iconic “thumbs up”) is felt like a kind of reward. Even though it is not an actual verbal act, it still counts as phatic communication because, like certain formulaic utterances (e.g., greetings), it binds the participants together “by a tie of some social sentiment” (Malinowski, 1923, p. 479) and shows “social cohesiveness and mutual recognition” (Coupland, Coupland, & Robinson, 1992). In addition, in phatic communication, there is often “a preference for affirmation and consent” (Coupland et al., 1992) the matrix of the like. All in all, the like prevents disconnection, that is, it confirms an ongoing interest and awareness.

3.5. HEARTS AND CRYING FACES CARING COLLECTIVES

EMOJIS OF

In contrast to the like, emojis are not open markers of awareness but instead markers of modality and mood. In digital interaction, the emojis often function as a form of guidance as to how one should comprehend a post, that is, by shedding light on the intention of the post and thus helping to avoid misunderstandings. However, using emojis in communication underlines the fact that our way of understanding both each other and the world surrounding us does not depend on words alone. The way things are said, that is, the prosody, the quality, and strength of voice, and the facial and bodily expressions (such as mimics and gestures) used to supplement the words, are key factors in the interaction. These nonverbal

Forms of Affective Language

57

and para-verbal ways of communicating, which play an important role in face-to-face interaction since they are also emotional manifestations of something otherwise hard to express in writing (Salló, 2011), are to some extent translated into emojis and emoticons mostly by using face emojis. We believe that these face emojis, or facial mood markers, play an increasingly important role when it comes to expressing empathy and grief on social media, but, in the two cases we studied, we observed that the heart was by far the most frequently used emoji a widespread cultural symbol for “the concept of love” (Miller et al., 2016). Even though, according to Unicode,1 we have more than 1,500 different emojis to choose from, in Facebook communication, only a few of them are used in this situation of grief. In addition to the heart, we observed different varieties of the crying or sad face, stars, angels, praying hands, and flowers. In this sense, our inventory of emojis mirrors what many Westerners associate with death, mourning, and funerals (Klastrup, 2018). The emojis used typically echo the written messages. Thus, the emojis function as optical and modifying intensifiers of the writing also used in order to “add visual annotations to the conceptual content of a message” (Danesi, 2017). In the following example, the first emoji (the crying face), whose “function is thus neither purely substitutive nor decorative” (Danesi, 2017), emphasizes the essential words unfair and hurts in the two surrounding sentences: Hvor er det dog uretfærdigt R.I.P lille engel (Translation: How unfair it is ) R.I.P little angel

det gør mig så ondt.

it hurts me so much.

The metamessage communicated through the emojis’ interplay with the sentences is: this is unfair and it hurts me to

58

The Language of Illness and Death on Social Media

such a degree that I begin to cry or I feel like crying. Understood in this way, emojis bring the body and face back on the scene, but they do so in a controlled way whereby the poster can more easily determine “which particular face to use.” We do not know anything about the actual bodily response of the writer whether he or she actually sheds a tear while writing the post but we can see that he or she wants to communicate that this is the case. Judging from the results of a survey of 710 participants’ use of emojis (Hougaard & Rathje, 2018), emojis are primarily deployed in order to create a certain emotional atmosphere and, in doing so, direct the reader toward one particular way of understanding an instance of communication. The act of supplementing the words and sentences with one or more emojis is a social media phenomenon, but the underlying motives are probably as old as interaction itself: wanting to be understood. Linguistically speaking, modality is often expressed through adverbs and modal verbs in which the sender signals an attitude and some kind of modification with regard to the more factual part of the text. Modality can be seen as the sender marking the extent to which she sees herself as responsible for the propositional meaning of the text. “Modality could […] be defined as the grammaticalization of speakers’ (subjective) attitudes and opinions” (Palmer, 2006, p. 16). Modality is simply a reflection of the sender and the sender’s attitude toward the text. Emojis used as modality markers can be regarded as evidence of the sender deliberately signaling to the receiver her or his intentions in terms of the level of honesty and intensity that is invested in a post; so, while emojis cannot prevent all misunderstandings, they do serve to disambiguate the message (Miller et al., 2016) and allow us to “better manage the ongoing flow of information, and to interpret what the words are meant to convey” (Evans, 2017, p. 34).

Forms of Affective Language

59

They simply make it easier to grasp the message: “Emoji facilitates a better calibration and expression of your emotions […] and leads to greater emotional resonance in the recipient” (Evans, 2017, p. 35). Emojis also articulate a metamessage concerning interpersonal understanding: I care so much whether you understand me and my intentions that I am making an effort to be understood and to make the interaction as aligned and smooth as possible. Spending a little more time than necessary on finding an angel emoji and those special hearts expresses relational work and effort. Emojis can also replace words and sentences, completing unfinished expressive tasks (Provine et al., 2007). Here “they have more of a referential or pointing function: they draw our attention to a specific idea that the emoji, indirectly, evokes” (Evans, 2017, p. 182). The following four emojis constitute a full post and could be interpreted as follows: I feel sad, I care (but I do not know you well enough to pose a red heart), and I am heartbroken because your child is now an angel. We can, however, not guarantee that this is the proper translation. Emojis can be interpreted instantly, but they leave the “dirty work” of deciding how to understand the message with the receiver. In situations like the two Facebook groups we examined, in which some participants felt they lacked words, “thin” and open communication elements like emojis are appealing and useful. Emojis contain implicatures, which means that what is meant goes beyond what is said and that they are open to interpretation depending on contextual factors. This prioritizes showing over telling. Emojis are also used in order to avoid overexplanations and the risk of choosing unsuitable words. As mentioned earlier, the heart is the most-used emoji in the cases we studied. Almost every comment contains one or more heart emoji, mostly red. As small icons, they are attractive to the user because, among other things, they can trigger

60

The Language of Illness and Death on Social Media

an affective response in the receiver. Or, as Lærke’s mother told us in an interview when asked how she felt about the many hearts: “It is just just love.” On the day her daughter died, there were 223 hearts in the 427 posts on the wall. Some of the posts contained only hearts. And others looked like this: “ ,” indicating something incomprehensible surrounded by love. In this way, communication is in a sense reduced and questioned through communication itself: How can we understand the death of a child, and what can actually be said in this situation besides “we care”?

3.6. INTERJECTIONS: “ÅH” (“OH”) AND “PUHA” (“WHEW”) Instead of communicating their sympathy in clear, conventional words, some of the followers of the two Facebook groups express their affect differently by bursting into an interjection. In this book, we define interjections as a class of words containing what could be called “affective expressions” or “affect vocalization” (Scherer, 1994, p. 179). They are usually associated with spoken language, but, due to the affordances of social media, they have found their way into the written language in certain situations as a way to confirm and express the body and bodily reactions. The followers of the two Facebook groups are both literally and metaphorically holding their breath while hoping that Lærke and MIV will recover. In the following analysis, we will focus on the interaction between the speech organs, the breath, and the whole body as well as the outcome of this interplay: the interjections “åh” (“oh”) and “puha” (“whew”). To our surprise, these interjections were relatively frequent in the two cases. Due to the serious nature of the group, in general, we expected and found more solemn

Forms of Affective Language

61

and ritualized language use, but this solemn way of communicating did not stand alone. On the day MIV died, the interjection “åh” (“oh”) was used 262 times (the eighty-second most frequently used word of the day); and, on the day Lærke died, it was used 27 times (the thirty-sixth most frequently used word of the day). In “åh” (“oh”), the “h” is a non-sibilant fricative (Grønnum, 2005). There is no turbulence or hissing (as there is in “f”), and there is only a small inhibition of the breath. In combination with the vowel “å” (“o”), which is the deepest vowel and demands very little tension of the speech organs, the interjection “åh” (“oh”) simulates the sound made by the body when a person relaxes after literally holding his/her breath. Sometimes the vowel is followed by the consonant “r” (“årh”), which intensifies the deep and dark quality of the vowel (in Danish this is called r-påvirkning (r influence)). The articulation of the sound “r” involves the articulators growing closer to each other, resulting in an even greater inhibition of the breath. “Åh” (“oh”) is often combined with the negations “nej” (“no”) (an attempted denial of the facts) and is typically placed at the beginning of the comment. This position could be interpreted as a way of loosening the tied tongue, that is, as an outburst of the detained body. Most of the “åh” (“oh”)s are written as a reaction to information which is difficult to cope with (such as diagnosis, rehospitalization, or death) and could naturally be seen as a potential echo of the followers’ own physical reactions. In their expressions of sympathy, the followers employ interjections to show and to characterize their affective involvement. And, in some situations, an interjection is the only lexical vocalization present, though it is often accompanied by unhappy emojis to intensify the sadness and show the reader that the interjection is

62

The Language of Illness and Death on Social Media

an expression of sympathy and an attempt to deny the facts. For example: Åhhh nej (Translation: Ohhh no) In some situations, the followers choose another interjection, namely “puha” (“whew”). In Lærke’s case, this interjection only occurs 15 times, but, in MIV’s case, “puha” (“whew”) is used 206 times, and 198 of these instances occurred on the day the documentary Kampen for Magnus (The Fight for Magnus) was broadcast on national Danish television (then it was the ninety-second most frequently used word of the day). In the following example, the interjection, like in the example of “åh” (“oh”), is the first word in the sentence and thereby frames our understanding of the message: Puha der findes ingen ord føler med jer (Translation: Whew words fail me feel for you) In contrast to “åh” (“oh”), this interjection could be understood as expressing a kind of relief or detachment from the occurrence. Dictionaries explain this interjection as a surprised, dismayed, or relieved reaction to something perceived as unpleasant or nasty. But why do the followers choose “puha” (“whew”) in this precise context? The key to understanding this may lie in the fact that “puha” (“whew”) is mostly used when the followers comment on something that is undoubtedly very difficult to process affectively, such as the aggravation of the illness or the final death announcement issued by one of the parents. Or, in MIV’s case, when they watch the intimate documentary (broadcast just three months after his death) that follows him until the very end of his life.

Forms of Affective Language

63

Like “åh” (“oh”), “puha” (“whew”) consists of an exhalation sound and a vowel or a complex set of vowel sounds, but there are minor differences between the two. In Danish, the interjection “puha” is more complex since it has two syllables and consequently two vowels: the “u” and the “a.” The English interjection, however, is a diphthong “ew,” which makes the prolongation of the vocal sound phonetically natural. When it comes to the consonants, the initial sound in Danish is a plosive, “p,” in which the vocal tract is blocked via the lips so that the airflow is first stopped and then immediately released (Grønnum, 2005, p. 132). In English, the initial sound is a voiceless palatal fricative (the full pronunciation is /hyoo/) produced by forcing air through a narrow channel made by raising up the one articulator, the middle or back part of the tongue, to the hard palate. In both the Danish and the English version (although in slightly different ways), the initial sounds are hindered, which causes a breathy voicing, that is, aspiration through exhalation. When someone says /puh/ or /hyoo/, the initial aspirated sound represents the exact moment when the closing of the mouth and the holding back of the breath can no longer be maintained. The Danish “puha” could be seen as an even stronger release of the accumulated energy held back by the closed mouth until that moment. But, to understand the interjection, we must also understand the situation of communication. The followers have followed the development of the child’s illness (either in real time or via the broadcast three months later) with bated breath; and, when this bodily anxiety and the intense and hopeful waiting time is suddenly replaced by a feeling of emptiness and loss, the bodies of the followers collapse into an “åh” (“oh”) or “puha” (“whew”) an articulation which is an almost palpable puff of air. Of course, we cannot be certain whether this is actually happening to their bodies, but

64

The Language of Illness and Death on Social Media

we can observe that the participatory investment and use of interjections are reinforced on specific dates. In Lærke’s case, the news that her illness is terminal and the news of her death generates an increased desire to use interjections; and, in MIV’s case, the broadcast boosted the level of this particular type of involvement. In both cases, the changing number of comments and interjections could be read as situations with very strong affective potential (see Chapter 4). While “åh” (“oh”) has a relatively stable form (it is only prolonged occasionally by a number of “å”’s (“ååå”), “h”’s (“åhh”), or by an “r” (“årh”)), the use of “puha” (“whew”) is phonologically aberrant and more variable. As mentioned earlier, it is possible to find 12 different spelling variants of the Danish “puha” in the two Facebook groups: “puh,” “puu,” “puha,” “pu ha,” “phuha,” “puhha,” “puhhhhh haaaa,” “pyh,” “pyyy,” “pyhaa,” “phyyha,” and “pyyyyyyyh.” In five of these variants, the vowel “y” replaces the “u,” which could be seen as equivalent to the difference between “phew” and “whew,” the former perhaps containing more relief and disapproval than the latter. Phonetically, the difference is limited: the vowel “y” is a bit higher than “u,” and the consonant in “phew”/fyoo/ is a strident /f/ that is produced by forcing air through a narrow channel made by placing two articulators, the lower lip and the upper teeth, close together. In the data, the alternate uses show no clear pattern, but further investigation might reveal whether certain spellings outmatch the others in the long term. The spelling differences concerning use of extra letters do not confuse the reading but function as an intensifier. The act of expressing and articulating has many different implications both emotionally and socially. To express is to produce an artefact to put thoughts and emotions into sounds and words in an attempt to mirror the emotional state of the speaker. To articulate is to place something in the world through words of more or less decipherable sounds,

Forms of Affective Language

65

thereby representing and transmitting affective energy. Interjections are spontaneous and intense expressions of presence. When using interjections, the followers are not just describing but actually performing compassion and involvement; they are doing a compassionate “being there with you feeling it with you” and thereby enacting the feeling of a joint process of grief, and, according to MIV’s mother, this was deeply felt by the followers and by her: “I never felt alone and that was what I needed.” The function of the interjection could be seen as a ventilation of affect and as a way of putting the inexpressible into words. Interjections are useful when we cannot find “the right words” to console another person or describe our own feelings or affective experience, because normal words would only aggravate the situation or make it awkward. Inspired by both affect theory and phono-semantics, it is possible to stress that these interjections use the body as a starting point. We see interjections as sounds caused by the body and thereby identify and emphasize the indexical connection between the bodily felt experience that triggered the sign (the interjection) and the physical production of the sign. We thus approach interjections as indexical reactions of the body making certain sounds that, through some kind of conventionalization, convey meaning. Owing to their brevity and immediate yet open decoding process, the use of interjections is also an efficient and economical way to communicate (Hougaard, 2013). Even though one could call this a reduced and poor way of grieving or mourning, it may be the closest we get to the immediate affect the true face of anguish and sympathy and a vernacular communication of grief and mourning in social media. In this book, interjections are seen as a way to bring the affective experience into the world, making this experience and the reactions exist, making them real, and at the

66

The Language of Illness and Death on Social Media

same time dumping them (Brennan, 2004), letting them go in order to be able to live on. Using certain interjections is thus seen as a bidirectional use of language. It is a response to the affective and bodily experience as well as a signal about experiencing this affect. The affects created in the Facebook groups both engage and occupy the body, and the tensions dominate the system in a way that is not durable. A way of “letting go” is to write interjections an ostensibly both intensifying and intensified mode of action.

3.7. IN THE LINGUISTIC PERIPHERY If we move further to the side-line of the language used on the Facebook groups, we find the use of capital letters, hesitation dots, sign redundancy, and ellipsis, to which there are several linguistic approaches. One approach could be to focus on the iconicity of the iteration when signs and letters, including capital letters, are repeated. Here there seems to be a direct compliance between form (quantity) and content (intensity) in the iterative prolongations, that is, an overlap between the signified (the prolongation) and the signifier (the degree of extraordinarity). The more question marks we write, such as in the example “ ,” the more mystified or searching we appear, that is, the more we wish to question and grasp what we do not yet understand. In this example, the many question marks most likely signify that the death of a child is not understandable at all they express a level of meaninglessness and something questionable. Instead of using an explication, such as “I think this is utterly meaningless,” the iteration of the question marks highlights and intensifies a sense of emptiness and incomprehensibility, since there are obviously no words and no meaning left. The hearts surrounding the many question marks

Forms of Affective Language

67

point to the significance of the signs. This is a passionate and loving expression of meaninglessness; an actual question is not proposed or formulated. The only thing left is the fragment that, in its broken appearance, points precisely to the missing parts, the meaninglessness. This underlines the indexical and physical connection between the sign and the one creating the sign in this use of language. Indexicality refers to the relation of proximity or causality between the represented and the representation. This means that the indexical sign has a strong relation to its context (spatial and/or temporal) and that the meaning depends on where and when the representation is located in the world. Like all other signs, the words, and even the missing words (that you cannot not communicate (Watzlawick et al., 1988)), are signs to be interpreted. But understood as indexes, the signs also indicate and point back to the thing or experience that caused or triggered the sign and the body experiencing it. The signs are produced by an affectively involved body trying to convert or translate the affects into language, and, since this body is battling to understand what is happening, the language is battling too (cf. Massumi’s “resonation”). A very touching example of this indexical connection between the affectively involved body and the verbal expression produced by this body is the post written by the father of MIV on the day of his son’s death: “Han er død nu.................. :( ...........................” (Translation: “He is dead now .................. :( ...........................”) Even though the father manages to post this message, he visibly runs out of words and suffers a linguistic breakdown; the hesitation dots, normally used to signal that something is left

68

The Language of Illness and Death on Social Media

out, become a marker of the now noisy nothing. Combined with the “unhappy emoticon,” these non-words visually show the lack of words to describe the situation. MIV’s father feels obliged to inform the followers about the tragic event (as we learn from MIV’s mother in the interview), yet he is obviously not thinking about how to influence the followers in the strongest way. This naked observation is best described as a rhetorical aposiopesis since the sudden stop in writing leaves the reader feeling as empty as the writer. However, even though the post is made at five o’clock in the morning, MIV’s father is not alone in this horrible and inexplicable situation. During the next six minutes, the following eight reactions emerge, and the posters are just as brief and baffled as the father himself:

The repeated question marks and dots are nonverbal communication in a new sense. With these signs, users carve out a space for communication and at the same time show that there are no adequate words to fill out the space. In this way, these signs are the clearest indication that the sender is in a

Forms of Affective Language

69

situation in which words are wanted or expected yet no words are being written because the affected body cannot produce them. The only signs left are: .................. :( ........................... The body is, however, not only affectively present in disruptions of conventional language but is also present as “someone” experiencing responses that are described through language. The participants thus produce several physically oriented descriptions of grief and mourning: they have “a lump in their throat,” “bleeding hearts,” and “tears in their eyes and running down their cheeks”; their “heart is crying,” “it hurts everywhere,” “they have a shiver passing through their body,” and they feel “full of warm thoughts” yet “empty of words”; they experience the situation as “impossible to bear.” One describes the grief as a “spinning triangle in the heart hurting terribly.” The participants are clearly conceptualizing and explaining the mourning process as an embodied practice and experience. To summarize, the affective vocabulary and language practices of illness and mourning are rich and diverse, containing both formulaic phrases and actions, formal words, conventionalized emojis, indexical use of interjections, and descriptions of bodily responses. Some of the verbal practices reflect thoughtful empathy, while others are affectively out of control and demonstrate that the involved body is somehow taking over. Regarding the different practices of participation in the groups, it is observable that, in general, the group followers are experimenting with different ways of doing being mourners; they are negotiating how religious, how spontaneous, how affective, and how verbalized this practice should be, and, in doing so, they are changing the ways we mourn and taking part in the invention of “a new vernacular vocabulary of mourning” (Klastrup, 2015, p. 162).

70

The Language of Illness and Death on Social Media

NOTE 1. https://unicode.org/emoji/charts/full-emoji-list.html.

CHAPTER 4 RHYTHMS OF AFFECTIVE LANGUAGE

This second analytical chapter focuses on different ways of engaging analytically with the changes and fluctuations in when affective language (e.g., the condolences, interjections, and emojis described earlier) is used (or not used) as well as on how these rhythms of language use are made possible and shaped in different ways by the affordances of Facebook as a social networking site (boyd & Ellison, 2007; Kaplan & Haenlein, 2010). danah boyd has described SNSs as “networked publics” characterized by the affordances of “persistence” (content does not typically expire and can be located via various applications even after it has been deleted), “replicability” (content can be copied easily and posted elsewhere), “scalability” (content can attract both small and large audiences, from local to global), and “searchability” (content is indexed and easy for other users to find) (boyd, 2011). These affordances imply that illness and commemorative activities on social media face a new set of logics and challenges compared with non-mediated or mass-mediated mourning 71

72

The Language of Illness and Death on Social Media

procedures (Marwick & Ellison, 2012). For better or worse, these activities exist in a more visible arena of collapsing contexts and multiple/unanticipated and often highly supportive audiences (e.g., grief tourists yet also trolls or media professionals taking up the story). These arenas, despite their apparent leveling out of social categories (we are all “members”), create social hierarchies among relatives and give rise to varying opinions occasionally even conflicts concerning proper behavior (e.g., how to perform questions or be “forumable” (Stommel, 2009) and what can and cannot be shared, said, or asked). SNS platforms also create challenges in terms of managing the social impression of the deceased person (since a dispersed group of users can all share their versions); stories of death circulate in networked habitats, which can make commemoration processes go viral or link them to other types of entrepreneurial activity (e.g., crowdfunding to pay for treatment or support research or charity), and these processes exist on platforms saturated with various forms of metrification (e.g., scores of how many people comment on something). Furthermore, the “multivalence” of SNSs such as Facebook must be stressed as a key affordance. “Multivalence” as a concept privileges a focus on the multiple and sometimes contradictory values created on SNSs. This is due to these platforms’ ability to simultaneously produce values relating to the psychological, affective, relational, economic, and political processes taking place at the same time and through the same activities, in and around specific profiles or groups. The concept simply stresses that “social media platform data is created to be multi-valent […], that is to speak to more than one value register at the same time” (Gerlitz, 2016, p. 21). For example, when a patient shares a cancer narrative on Facebook and it is liked by his or her followers, multiple forms of value are created in this “like economy” (Gerlitz & Helmond,

Rhythms of Affective Language

73

2013): affective-psychological value related to the act of narration, social value (also for the followers) related to collective support and empathy, attention value related to the increased prominence a narrative receives further in the network through likes, and economic value related to platformed data collection that can be sold for marketing purposes. This focus on multiple forms of value is important, since both the cases we studied were not initiated primarily to share the therapeutic effects of writing but with the strategic purpose of using the “scalability” of social media to reach large audiences willing to support the families during difficult times: in the case of MIV, to sponsor a particular form of treatment not offered by the Danish healthcare system, and, in the case Lærke, to help the financially vulnerable family cope with costs and decreasing income during their daughter’s illness. In this sense, the families act as what Stage has elsewhere termed “biological entrepreneurs” (Stage, 2017), which describes a social media practice that combines accounts of personal suffering with the mobilization of social, circulatory, and economic value. This media practice furthermore creates affective publics driven by the fact that followers experience and react to real-time processes of treatment, recovery, and sometimes death, which means that the ill person, or relative, becomes the center of larger participatory processes sometimes also by being promoted by traditional broadcast media (Stage, 2017). “Biological entrepreneurs” still regard the disease (in our cases, cancer) as undesired, but they use it as a narrative and affective resource that can create economic, personal, and social effect and change. We selected our two Facebook groups on account of their similarities and differences. They are both public Facebook groups that are only loosely gated by administrators. At the time of writing, the groups have 1,172 (Lærke) and 16,317

74

The Language of Illness and Death on Social Media

(MIV) members1. They both share a story (with the parents as key narrators) about a child diagnosed with cancer in early 2015 and dying of the disease during the very same year. The groups show us families who engage with media in the face of existential crisis and who use this media as a means to sustain the physical life, and then the postmortem social life, of a loved one. They both motivated participatory activities of crowdfunding energized by following personal illness stories of treatment and suffering, and, following the deaths of Lærke and MIV, they both transformed from a site to fight illness to a site to commemorate the deceased a change supported by social media’s ability to (re)negotiate genres based on collective user inputs (Lomborg, 2013). However, the two groups are also different in terms of the scale of involvement and attention they stimulated (e.g. number of members and posts, the amount of money crowdfunded, and the level of media interest) and the type of content shared (in the case of MIV, economic issues play a key role). In order to focus on when and to what extent affective language is used in the groups, it is first necessary to provide a clearer picture of the overall development of the groups.

4.1. FIGHTING FOR MAGNUS (MIV) The life span of the MIV group undergoes four phases. Phase 1 (February 2015): In January 2015, eight-year-old Magnus Anderson Eid (nicknamed “MIV”) was diagnosed with a rare type of brain cancer and was informed that only lifeprolonging treatment, but not a cure, was available. For this reason, in early February (13th), the parents and the grandmother initiated a Facebook group with the aim of collecting a minimum of 800,000 DKK for treatment outside Denmark. The page spread virally and stimulated an almost

Rhythms of Affective Language

75

incomprehensible amount of donation initiatives from Danish citizens selling objects and companies donating objects and experiences to be auctioned to benefit MIV. Over 1 million DKK was crowdfunded within a week. The total amount collected via the Facebook group was 1.6 million DKK. During this phase, the parents also expressed their gratitude and participated in various forms of media coverage (which focus extensively on Facebook crowdfunding as a newsworthy story), while users expressed hope and a sense of profound meaningfulness supported by the altruistic community of donors. Phase 2 (March May 2015): In March, the family traveled to Malaga to receive treatment for MIV, but, shortly after their arrival, young MIV died on March 5, which, as mentioned earlier, was announced by his father on Facebook early in the morning. The post spurred 2,600 comments and hundreds of posts, in which people shared statements of condolence, sorrow, songs, and images of lit candles. Over the following months, the group was saturated with mourning and family member’s expressions of existential crises, but there was also an economic and juridical aftermath developing, since the money collected for MIV was aimed at treatment and not for other purposes (such as helping the family or other patients) if he should die. This created problems with Danish authorities, which led to protests among the members, who argued that the money should not be returned to the donors. Phase 3 (May June 2015): In May, a documentary about MIV’s illness and the Facebook group was aired on the largest Danish broadcast TV channel (DR1), which created another viral peak as people entered the group to leave an affective reaction to seeing the documentary. Phase 4 (June 2015 ): In this long (and ongoing) phase, mourning and commemoration activities continue, but they

76

The Language of Illness and Death on Social Media

are now centered around ritualized behavior related to “would have been” birthdays, the anniversary of MIV’s death, cultural celebration days (e.g., Christmas), and family visits to MIV’s grave. The economic discussions continued for a period but ended once the relevant committee was granted permission to cover the family’s costs and donate the remaining money to cancer charities.

4.2. LÆRKE RØNDE TIMM In January 2015, Lærke Rønde Timm was diagnosed with brain cancer and, in late February, the Facebook group was initiated. At present, it has approximately 1,200 members. The group follows the life of a Danish family living with a child having cancer as well as Lærke’s short and intense treatment process, which, unfortunately, could not save Lærke’s life Lærke died on August 6, 2015. Throughout Lærke’s illness, Lærke’s mother, Line Rønde Timm, shared information about the treatment process and, in this way, provided the key affective content of the group. The group was established to energize an online crowdfunding process on Caremaker2 in order to support the financially struggling family. As part of this, a large number of the posts in the group are either launching events aimed at collecting money for the family or documenting people’s donations (e.g., screen shots of mobile pay receipts or objects donated from local businesses having been sold). The group proceeds through seven phases. Phase 1 (February 2015): The group is established during Lærke’s hospitalization. Phase 2 (March April 2015): Lærke’s health improves and the family lives a relatively normal life, while people donate to help. Phase 3 (June July 2015): Lærke’s condition worsens and she enters a terminal phase with

Rhythms of Affective Language

77

life-prolonging treatment. Phase 4 (July August 2015): The family tries to enjoy the last period of Lærke’s life. Phase 5 (August 2015): Lærke dies and is buried. At this point, the site changes into a commemorative space. Phase 6 (September 2015): The family designs and documents Lærke’s grave. Phase 7 (November 2015 ): The family describes their attempt to live a life without, but together with, Lærke and they focus on annual key dates in their communication (such as birthdays, anniversaries of death, and Christmas). Unlike the MIV group, the Lærke group is smaller and more locally oriented: it seems to be embedded in the village of Snejbjerg, the larger proximate city of Herning and the region surrounding it. The Facebook group furthermore constitutes a networked public linking the family with people they already know, people in the local community and region and, to a lesser extent, strangers from across Denmark (according to Lærke’s mother, she and her husband know most of the members on the Facebook group from their local community). While the MIV group gathers together members with both strong and weak ties (those with weak ties actually become more prevalent in terms of both numbers and posts), the active core of the Lærke group seems to consist of people with stronger social ties to each other.

4.3. THE AFFECTIVE LANGUAGE OF CROWDS, SUPPORTIVE INTERFERENCE, AND ANNUAL CYCLES In the following section, we will focus on how mobilizing affects are created and exchanged in different ways in the two cases, but we will primarily concentrate on how these affects can be understood through the accumulated rhythms of the language used in the groups. Following the elemental media approach of Peters (Peters, 2015), we understand the

78

The Language of Illness and Death on Social Media

groups not as isolated media spaces but as entanglements of technologies, bodies, affects, existential events, and various forms of textuality that constantly interact. As mentioned earlier, the two groups are saturated with posts that begin with some variation of “I am lacking words,” thereby expressing a misfit between an affective state of being and language pointing to the paradoxical use of language to express the lack of language. This is one way to discover affective communication in the groups. Another way is to look for language that is disturbed and has become redundant, fragmented and dysfunctional. This is the type of language that Massumi refers to as “resonating,” which refers to forms of language shaped by an affective force that it cannot actually grasp and therefore only refers to negatively by falling apart or, as described in the previous chapter, by leaving empty and “meaningless” spaces within communication to highlight the lack of well-structured language use. However, members of the groups simultaneously use a lot of conventional language to describe their bodily responses and how specific posts or news made them feel a type of affective language more easily understood through Wetherell’s notion of “affective practice,” in which conventional language is framed as being able to approach and communicate bodily intensities. In the following section, we will investigate the Facebook groups as existential habitats for using affective language, where language use accumulates over time in ways that help us understand the specific “digital affect cultures” of the groups (Döveling et al., 2018). For example, what kind of social-affective process does 20 comments posted within the same hour and all involving red hearts imply? Are there patterns as to how and when condolences, interjections, and emojis do or do not accumulate in the groups? And how do these patterns or rhythms of accumulation change over time?

Rhythms of Affective Language

79

We wish to argue that three interrelated analytical points can be made about the accumulated use of affective language in the two cases. First, the synchronized clustering of similar emojis and interjections makes it likely that processes of “digital crowding” are taking place, which implies that collectives of people are drawn into a shared production of affect by encountering particular posts. Second, we can identify a pattern in how the biological (weakening vs recovering) rhythms of the ill body relate to the rhythms of affective language use a pattern that creates a particular type of fluctuation that we call “supportive interference.” Third, we can detect that the use of affective language changes as the ill body dies and the group enters a phase of commemoration and mourning: in the latter phase, affective language is no longer linked directly to the biological ups and downs of the ill body but instead to either (1) revitalization through recurring anniversary days and celebrations (such as “would have been” birthdays, anniversaries of death, or Christmas) or (2) articulations of profound existential crises or mourning work by the bereaved parents.

4.4. CARING CROWDS In classical French sociology, crowds most often congregate in urban space and are defined by being glued together by an affective contagion that pulls individuals into a common and shared state of emotion, such as rage, happiness, or sorrow, and often by means of a central leading figure able to magnetize followers with his or her dedication (Borch, 2012; Le Bon, 1895). In this way, crowds come into being at the point when a collective of bodies experience being carried into a collective state of affect for example, during concerts, demonstrations, football events, or funerals. In other

80

The Language of Illness and Death on Social Media

research, Stage has proposed a typology of contemporary crowds that prioritize the role of physical co-presence in different ways: (1) the traditional body-to-body crowd based on physical co-presence; (2) the mediated crowd, which has a strong offline dimension (e.g., street demonstration) but uses media technologies as tools or communication environments (e.g., to gather in certain spaces at certain times) (Baker, 2011); and (3) the online or social media crowd, which is defined by the affective unification and relative synchronization of a public in relation to a specific social media site (Stage, 2013). It is important to note that contemporary crowds are often assemblages of these different types of crowds. The idea of crowds aggregating in or through media is partly at odds with some of the key classical texts on this type of social formation. In one of the first media sociological texts ever written, early sociologist Gabriel Tarde proposed an influential distinction between mediated publics, which consist of people united by using the same media, and crowds based on unmediated body-to-body encounters. Tarde’s basic argument in this text, The Public and the Crowd (1901), is that Gustave Le Bon’s famous claim that the late nineteenth century was the era of the crowds (Le Bon, 1895) is wrong. According to Tarde, the public, and not the crowd, is the key social formation of the then present and future due to the increased cultural salience of the medium of the newspaper. While a “crowd,” according to Tarde, is defined by bodily co-presence and a loss of individual rationality due to suggestion processes occurring among this collective of bodies, a “public” is “a purely spiritual collectivity, a dispersion of individuals who are physically separated and whose cohesion is entirely mental” (Tarde, 1901, p. 277). For Tarde, a public takes shape at the time “difficult to specify when men given to the same study were too numerous to

Rhythms of Affective Language

81

know each other personally and felt themselves bound only by impersonal communications of sufficient frequency and regularity” (Tarde, 1901, p. 280). In other words, a public is based on what Michael Warner has called “stranger relationality” and, in this sense, the two Facebook groups studied in this book are publics: they allow for strangers to meet by directing their attention toward the same content (the story of MIV and Lærke) (Warner, 2002). The crowd is simply a type of social formation based on embodied affective transmissions, while the public is a disembodied aggregation of mentally connected strangers. It is helpful to revisit Tarde’s essay not simply because of his well-known and rigorous distinction between the public and the crowd but perhaps more importantly because of his own struggle to uphold this distinction in the essay a struggle that we find interesting because it seems to suggest that publics can become like crowds by rushing toward the same social media site and engaging in shared affective processes. Throughout the essay, Tarde seems to maintain that crowds and publics are not identical, but he repeatedly finds similarities between the two types of formation. We would therefore like to argue that a deconstructive reading of Tarde’s famous essay, focusing on its semantic ambiguities, inconsistencies, and fluctuations, is more interesting for a contemporary social media analysis than Tarde’s initial clear-cut definition of the crowd/public distinction. Tarde’s difficulty in systematically distinguishing between the embodied crowd and the disembodied public, and his more or less intentional investigation of all the gray areas in-between, is inspiring for a contemporary media analysis of social media communication. This difficulty helps us acknowledge that we still require some sort of conceptual difference between public and crowd because not all publics are crowds and not all crowds are mediated publics but, at the same time, it raises

82

The Language of Illness and Death on Social Media

an interesting challenge: how can we analyze and theorize the highly mediated, but also bodily involving, affectively stimulating, and often crowd-like social formations that evolve in relation to processes such as viral hyping, illness blogging, mourning, and flaming in social media settings (Blackman, 2012; Wiedeman, 2014)? To highlight the forgotten yet analytically helpful ambiguity of Tarde’s essay, we will begin with the following quote from the essay: […] the crowd has something animal about it, for is it not a collection of psychic connections produced essentially by physical contacts? However, not all communications from mind to mind, from soul to soul, are necessarily based on physical proximity. This condition is fulfilled less and less often in our civilized societies when currents of opinion take shape. It is not the meetings of men on the public street or in the public square that witnesses the birth and development of these kinds of social rivers, these great impulses which are presently overwhelming the hardest hearts and the most resistant minds, and which are now being consecrated as laws or decrees enacted by governments and parliaments. The strange thing about it is that these men who are swept along in this way, who persuade each other, or rather who transmit to one another suggestions from above these men do not come in contact, do not meet or hear each other; they are all sitting in their own homes scattered over a vast territory, reading the same news paper. What is the bond between them? This bind lies in their simultaneous conviction or passion […]. (Tarde, 1901, p. 278)

Rhythms of Affective Language

83

In a footnote, Tarde comments on the use of the metaphor “social rivers” in relation to the formation of public opinion, and he acknowledges that: “these hydraulic comparisons naturally come to mind every time we speak of crowds as well as publics. […] They are both rather like streams with a poorly defined channel” (Tarde, 1901, p. 278). In this quotation, Tarde describes publics and crowds as similar types of social formations they are both “like streams with a poorly defined channel” founded by the same affective transmission between bodies as opposed to distinct social formations based on either mediated or unmediated relations. This makes it clear that the distinction between media publics and unmediated crowds was seemingly difficult to uphold from the very beginning of its theorization in the late nineteenthcentury France. Moreover, in an age of digital elemental media, and following scholars such as Nigel Thrift, Lisa Blackman, Tony Sampson, and Anna Gibbs, we face a situation in which “the media have tapped into semiconscious processes of imitation and amplified them in various ways” (Gibbs, 2008, p. 85) and thus also a situation in which crowds are established around, through and in media. In an age of elemental media, crowds also breathe media, and bodies seem to breathe through the language of social media. The MIV Facebook group offers a range of examples of the affective unification and relative synchronization of a public in relation to a specific social media site (Stage, 2013), which can be identified through the use of a particularly affective type of language that often takes part in processes of “ritual appreciation” (Georgakopoulou, 2016), where commenters seem to align their response affectively with the poster and other commenters. The majority of content in the group is related to three moments of digital crowding: (1) responses to the call for help to raise money, which motivated an explosion of affectively unified warm and

84

The Language of Illness and Death on Social Media

enthusiastic posts within a period of five to seven days in February, (2) responses to the post that MIV had died in Malaga, which, over the following days, spurred a stream of hearts and images of lit candles (coordinated as a common response by the users), based on a sense of deep injustice and disbelief that MIV’s death occurred so soon after the successful and supportive crowdfunding process, and (3) very temporally demarcated “second screen” and high-intensity interjections on the evening the documentary about MIV’s illness was broadcast (May 31, 2015). These three crowdings tell us something about the affective quality of the MIV group: it is explosive, geographically dispersed, and contagious in its ability to include evermore users; it transforms from enthusiastic empathy (peak 1) into sorrowful disbelief (peak 2) and overwhelmed viewing responses (peak 3). Furthermore, singular posts such as a man offering to lend the family his house in Malaga, a small girl with cancer also donating to the group, and MIV’s father’s heartbreaking expression of loss and existential breakdown motivate processes of digital crowding. The three major crowdings are based on independent posts on the group’s wall made by users and all result in a large amount of affectively heated posts in a relatively short period. Crowding is also present, though in a less explosive form, on the Lærke group, and this crowding is motivated by posts related to interrupted treatment, death, and Lærke’s funeral. Another example is when Lærke’s mother, five months after Lærke’s death, writes a post about Lærke’s school friends visiting the grave. Here she herself ends every sentence with a heart and receives 173 reactions and 18 comments (10 of them containing one or more emojis). The followers, in this sense, mirror her use of hearts. Furthermore, photos from Lærke’s funeral received 61 comments within 4.5 hours 44 of these comments contained nothing but emojis.

Rhythms of Affective Language

85

Many of these crowding responses are characterized by a lack of elaborated language content. As such, these crowds should be approached as brief gatherings of presence, care, and empathy nothing more and nothing less. And, very often, these crowds aim to existentially “stand under” the families. A final crowd example is the aforementioned amount of semantically ambivalent “fire/candles” shared after MIVs death: do they signify warmth, hope, respect, or collective coming-together (around the campfire (Peters, 2015))? We argue that this practice primarily expresses a diffuse sense of care and that it represents an affective state at the level of the posters but that it also aims to produce some sort of comforting affect at the level of the family and group members. In this sense, this “crowd of fire” offers what Peters calls a “lifeline”: a mediated sensation of care and support to a family facing a profound existential limit-situation (Lagerkvist, 2016; Peters, 2015).

4.5. RHYTHMS OF SUPPORTIVE INTERFERENCE Having investigated how the use of affective language suddenly explodes in crowding in relation to certain posts, we will now adopt a longitudinal perspective to examine the high and low tides of this language use and how it corresponds with the biological state of the ill person. To do so, we need to begin by focusing on how the social rhythm of language use relates to the communicated biological rhythms of the narrating/narrated body. Our understanding of rhythm is inspired by Henri Lefebvre, who invites us to view various forms of language and representations in a new way by examining not only how language use fluctuates but also how, for example, the intense or lazy rhythm of language use interrelates with other rhythms. According to Lefebvre, we

86

The Language of Illness and Death on Social Media

“must recognize representations by their curves, phases, periods and recurrences” (Lefebvre, 1992, p. 22). To understand how various rhythms intertwine or relate, however, we also need a vocabulary to describe these rhythms. Lefebvre distinguishes between different contrasting pairs of rhythms and, throughout his work, he seems concerned with the colonization of natural rhythms by constructed (and capitalist) rhythms. First, Lefebvre proposes a distinction between rhythms that are “biological” and linked to the human body (e.g., rhythms of the heartbeat, hunger, sleep, or the menstrual cycle) and rhythms that are “social/ educated/rational,” which have no biological basis but are socially invented (e.g., clock time, rhythms of work/leisure periods (e.g., weekend vs work days or working hours vs free time), or the rhythm of a sermon). Next, Lefebvre describes a distinction between “cyclical rhythms,” which are natural rhythms of “beginning again” that impose no control on human beings (e.g., cycles of day and night or the seasons) and “linear rhythms,” which are more mechanical and metric and reproduce “the same phenomenon, almost identical, if not identical, at roughly similar intervals” (Lefebvre, 1992, p. 90) (e.g., the rhythm of an assembly line). Here Lefebvre argues that cyclical rhythms are more open, creative, and flexible in terms of embracing human practices, while linear rhythms introduce a more coercive logic by requiring activity at identical intervals. A final distinction is made between “rhythms of the self,” which are rhythms deriving from personal choice and agency (e.g., weekend rhythms, rhythms of taking a shower or eating) and “rhythms of the other,” which are defined by other agencies than the individual (e.g. rhythms of the morning traffic) (Lefebvre & Régulier, 1992, p. 95). In a democratic and sustainable society, these rhythms can coexist in harmony individuals can maintain their own rhythms

Rhythms of Affective Language

87

and, to a certain degree, influence, appropriate, or live with rhythms of the other. It is most likely already apparent that these various forms of rhythm continuously interact and influence each other in a variety of everyday situations. According to Lefebvre, this implies that social situations are always characterized by “polyrhythmia.” When this occurs in a harmonious or healthy way for example, biological rhythms coexist peacefully with social rhythms and rhythms of the other a “eurythmic” state is created. When different rhythms begin pulsating according to a common rhythm for example, in processes of collaboration or during concerts an “isorhythmic” state is created. However, when rhythms collide for example, social rhythms start disturbing biological rhythms (the heartbeat) or circular rhythm (sleep cycles) in workrelated stress situations an “arrhythmic” state is created. Such an “arrhythmic” state can ultimately lead to a fatal termination of rhythm (namely, death). Everything from serious illness, to a car crash on a busy street, to technological breakdowns can be described as moments of “arrhythmia”; but, although “arrhythmia” initially appears as solely destructive, according to Lefebvre, it can also offer moments of creative redefinition or events of change (e.g., choosing a different life path following serious illness) (Lefebvre, 1992, p. 44). The concept of rhythm allows us to investigate Facebook cancer groups as polyrhythmic spaces with social rhythms that somehow relate to the “arrhythmic” experience of serious illness. The point we wish to make here is that this type of group is characterized by having the biological rhythms of the ill person as the key barometer that motivates social rhythms of using and not-using affective language. In order to gain an impression of the increasing and decreasing rhythms of the Lærke group’s activity or affective engagement we listed all the posts that attracted more than

88

The Language of Illness and Death on Social Media

either 70 likes or 70 comments, which signified an amount above everyday levels of interaction. There were 58 such posts. Of these, the share with more than 70 likes was far larger that the share with more than 70 comments. Only six posts had more than 70 comments, and half of these highly commented posts attracted almost no likes (they attracted 15, 6, and 8 likes respectively). As such, the practice of liking in this group seems to be linked to supporting and boosting already positive stories (Wagner, 2018), while large-scale commenting is reserved for less positive moments that call for existential support. The highly commented posts are united by the fact that they describe dramatic bad news about hospitalization, threatened wellbeing, the end of treatment, or death and they all occur in June, July, or August 2015, when Lærke’s condition worsened and became fatal. In this way, they present news that seemingly calls for commenting rather than liking.3 The only two posts that received more that 200 comments concerned the news that Lærke’s illness was terminal (228 comments) and that Lærke had died (385 comments). This social rhythm of commenting might suggest that people wish to contribute to social media groups in increasingly more individualized ways, which, in turn, produces a higher degree of presence and support during a severe crisis. The fluctuating number of comments could also be read as curves of felt and transmitted intensities after all, they invariably direct us toward the most heartbreaking and dramatic events in the process (and thus also to the events with the strongest affective potential) and toward moments in which users start producing the affective language described in the previous chapter. The accumulation of written responses, or the measure of comments, in itself becomes an affective metric. Yet a high volume of responses is enough to create further intensities: for example, on July 29, Lærke’s mother shares her

Rhythms of Affective Language

89

gratitude for the high number of comments posted a few days before (which she said “mean a lot”), and this, in turn, creates a high number of comments, thereby exemplifying the affective feedback loop described by Papacharissi. The social rhythm of the group’s production of affective comments seems closely connected to the biological rhythm of Lærke’s body: When she weakens, the group awakens in terms of an increased level of commenting. Returning to Lefebvre, the social rhythm revealed by the commenting curve simply resonates with the biological rhythm of the patient when the body is tired, loses energy, or becomes slow, commenting rhythms increase thereby revealing what we would call “supportive interference” between biological rhythms and commenting rhythms. Interference here refers to the relation between two waves, each with its own rhythm. These two rhythms can either intensify one another if two waves map onto each other (also called constructive interference in physics) or level each other out if one wave is high when the other is low (destructive interference in physics). In Lærke’s case, the type of interference is of the latter kind: commenting rhythms go up when biological rhythms go down, and commenting rhythms go down when biological rhythms go up. In this sense, commenting could be seen as contributing with a kind of energetic equilibrium. Interestingly, in a recent study of 14 blogs written by parents with children battling cancer, Cathrine Heiflerty has shown that parents use blogging precisely as a way of establishing balance and equilibrium. When things are bad, parents use the blog to seek support and thus the blog seems to function as a technology for the affective leveling out of crises. Heiflerty writes: Blogging, for these families, played a role in that search for balance. The use of positive attitudes or

90

The Language of Illness and Death on Social Media

behaviors to manage negative events over the course of the illness through the performative acts of blogging seemed to move the authors toward equilibrium. (Heilferty, 2018, p. 6) In this way, “supportive interference,” in which negative drama is met with positive support and affect, may be one of the reasons why the weakening biological rhythms of the child reach the blog via the parents’ posts in the first place. By sharing illness negativity, affective positivity is produced and affective balance is potentially created, at least momentarily, through these rhythmic encounters. And, in the interview, MIV’s mother exactly refers to the group as a “stable support”; here no one is counting days of mourning. She experiences the group’s actual credo as: “We will be here as long as this groups exists.” It is also possible to identify constructive interference in the relationship between the two cases. In many ways, the Lærke case follows in the wake of the MIV case, as the latter created an enormous amount of public awareness and energy in February 2015. After this public surge of energy, the Lærke case attempts to create its own rhythm of communication to enter into a constructive relationship with the MIV group. And this does happen to a certain extent: the Lærke case is mentioned in the much larger MIV group and seems to offer an outlet for continuing some of the affective investment in MIV’s treatment. Just as they hoped (according to MIV’s mother), the MIV case actually seems to have motivated several crowdfunding initiatives on Facebook, trying to create a process of constructive interference, for example, STØT Frederik (Support Frederik), which crowdfunded more than 240,000 DKK in a week in February 2015, and Min svigermors kamp mod kræft (My mother-in-law’s fight against cancer).

Rhythms of Affective Language

91

4.6. FROM BIOLOGICAL RHYTHMS TO ANNUAL CYCLES The final change in the rhythms of affective language use that we will focus on arises as the groups change from being about supporting a person and family through illness to being a dynamic commemorative space after the death of the key person (Arnold et al., 2018). After this incident, the family and users transform the group into something that was not its intended aim but instead a result of the arrival of the fatal arrhythmia of death. Returning to Walter, Hourizi, Moncur, and Pitsillides’ typology of online mourning, the two cases are somewhat difficult to categorize. In one sense, they are “unintentional memorials in non-grief-specific sites” (Walter et al., 2011) as the public groups (and Facebook) were not designed specifically with the purpose of commemoration, but, in another sense, they transform into “intentional memorializing in non-grief-specific sites” as the parents seem to explicitly renegotiate the aim of the groups after the death of their child. The groups simply change genre as the purpose, aim, and nature of the communication taking place in them alters. The Lærke group is renamed as “Commemoration site for Lærke Rønde Timm” instead of “Support Lærke Rønde Timm’s Fight against Cancer,” while the “About” section in the MIV group explains that the page began as something else but is today a commemorative site and a place to support the bereaved parents. This also shows how SNSs allow members to personalize their mourning experience (Willis & Ferrucci, 2017) “Surviving the death of one’s child may be viewed as a continuous process of adapting to life as it ‘came-to-be’ without the child” (Segerstad & Kasperowski, 2014, p. 3), and the two Facebook groups are primarily used as sites where a continued relationship or bond to the deceased can be

92

The Language of Illness and Death on Social Media

performed and maintained and thus where the subject positions established during life (being a son, a daughter, a parent, etc.) can persist beyond death (Christensen & Sandvik, 2014). This is achieved, for example, by writing directly to the deceased child and thereby stressing that the relationship is not lost but is alive and simply in a new phase. It is also achieved when MIV’s mother remarks that one can be the mother of an angel (MIV September 8, 2017) and when she writes: “You don’t cross my mind. You live in it” (August 28, 2017). The idea seems to be: “We are still talking and in contact”. However, this experience of a continued social bond is contrasted by articulations of irreversible distance and of facing fundamental questions regarding the livability of life after the loss of a child. After the death of the ill person, the surviving family members come to play an even greater role in the groups’ posts; for example, pictures of siblings are shared to confirm that love is still strong. The group members also seem to naturally focus their interest and support on the family now the aim is to existentially “stand under” a family in sorrow more than to prevent death. However, small remnants of the original function of the group still exist, either by commemorating the original collective battle for MIV or by sharing recommendations and invitations to support other crowdfunding initiatives. Faced with the arrhythmia of death, the affective investments of the group are no longer determined by posts on biological and health developments at the level of the key person. Instead, socially constructed annual events become the moments in which rhythms of sharing affective language intensify. After the death of Lærke, exchanges are connected to special occasions, such as Lærke’s birthday and the Christmas holidays a point supported by Lærke’s mother in our interview with her, in which she explained that today

Rhythms of Affective Language

93

the family primarily uses the group in relation to celebrations but that she also occasionally rereads some of the posts and comments, which can still make her sad. If we look at the more recent activity in the two groups, key annual dates simply motivate most of the posts. But, again, in different ways. In the MIV case, posts related to MIV’s would-have-been birthday (January 19) are mainly made by close relatives, and the members of the groups then contribute with comments, which signals a hierarchical relationship whereby the immediate family has the primary right to commemorate this day. The anniversary of MIV’s death continues to motivate posts from group members (on March 5, 2018, three years after MIV’s death, there were 44 posts). The group thus seems to have a different kind of ownership or legitimacy to commemorate due to the collective crowdfunding process in relation to MIV’s death than to his birthday, and it thus seems to act like a “shared community of memory” in relation to the anniversary of his death (Lagerkvist, 2018, p. 19). In these 44 posts, hearts and broken hearts are again by far the most-used emojis, followed by stars, angels, and crying emojis. These emojis are often articulated alone yet are occasionally combined with small statements such as “tænker på dig” (translation: “thinking of you”). In this way, the group also challenges the widespread tendency to primarily commemorate the birthdays of deceased public figures, which could be explained by the fact that group members do not think of the child as a celebrity but as a private/ordinary individual seeking help through public means. As mentioned earlier, the Lærke group also focused on annual dates of remembrance, but with Lærke’s mother as the most dominant producer or “narrowcaster” of posts and with the group members primarily responding via reaction buttons. Pictures of flowers and other forms of material communication on/through Lærke’s grave also play a prominent

94

The Language of Illness and Death on Social Media

role, and, to some extent, the Facebook group has become a digital augmentation of the material tombstone (Arnold et al., 2018). Visually, the pictures reveal the materiality around the stone, which communicates a large amount of care and love through the sheer level of effort required to create the arrangement (Christensen & Sandvik, 2014). In this way, continuous love is not only expressed through words but also through practices of “material love.” And love and care is also expressed through other material practices; for example, by Lærke’s father taking part in a charity bike ride in aid of cancer charities. Regarding Lærke’s birthday, her mother thanks the group for greetings sent through other media (e.g., SMSs). This once again highlights a possible difference between the social formations in the two groups: the Lærke group is smaller, and many of the members seem to know each other in advance as residents in the same city or area or as relatives/ friends. For this reason, many of the members would have various media outlets at their disposal when wishing to greet the family. They are positioned as part of a “polymedia” situation, where the sender tries to match the communicative purpose (e.g., sharing a more or less intimate or more or less “archivable” message) with the most relevant digital media in terms of its affordances (e.g., public, semi-public/private, oneto-one/one-to-many) (Madianou & Miller, 2012). And, on Lærke’s birthday, an SMS or a phone call might seem more appropriate than posting a message on a public Facebook group. In both cases, the focus on social and circular events occurring on an annual basis seems to create a new, less hectic pulse. The biological health development of the ill child as a more unpredictable trigger of social response (combined with the documentary as a nonbiological viral moment in the MIV case) is replaced by social rhythms with a low-frequency

Rhythms of Affective Language

95

pulse. The new rhythm is slower with only two to four annual and predictable peaks and, in this sense, this rhythm also comes to represent a process of social (re)integration, where existential crisis is somehow contained within culturally legitimate dates of commemoration. This also implies that member activity at least based on the textual material available to us in the groups primarily aims at supporting the family in the type of commemorative work for which they wish to use the group. Although the singular group serves as “a site of collective inscription” (Arnold et al., 2018, p. 61), in general, members do not upscale or initiate processes of grief but rather react to the grieving initiates or “invitations” of the immediate family. However, sometimes these predictable annual cycles of commemoration are disturbed. This happens when affective language does not react on anniversaries but rather on the individual experience of utter and sudden meaninglessness among one of the parents (e.g. MIV March 17, 2015). Here affective language is used to describe the experience of profound sorrow, of never being able to hear or sense particular things related to the deceased child (e.g. laughter, smell, or tactile care), and of not being able to “move on.” These posts are not always saturated with emojis but with a more literary flow and bodily metaphors of being “totally broken,” “torn in two,” and “on one’s knees.” And they are filled with regrets of not having been a better parent and worry that life will never become worth living again. Here we clearly transgress socially constructed temporal zones for legitimate mourning in favor of dark existential experiences of losing a foothold and a sense of direction. But, as family members, they are “granted greater space for deviations from the norm for mourning” and met with support (Wagner, 2018, p. 5). These three different ways of analyzing the rhythms and accumulation of affective language in the material as

96

The Language of Illness and Death on Social Media

involved in synchronized digital crowding, in a particular type of supportive interference between commenting and the biology of the patients, and in changing rhythms of commemoration and mourning after the death of the child can tell us a lot about the affective logics of language use in this kind of illness and mourning group. But they can also reveal differences between the affective cultures of specific groups. First, both groups are culturally positioned as intensive and affective publics due to their topic. We are culturally expected to approach the loss of a small child as the worst thing that could happen to a parent. According to Segerstad and Kasperowski: the loss of a child is the loss of part of oneself, and it can be argued that it is an event, which we are biologically programmed to resist at the most fundamental level. In many cultures, the death of a child is regarded as a particularly existentially upsetting and disrupting experience. (Segerstad & Kasperowski, 2014, p. 3) This partly explains why a stranger’s loss of a child can motivate so much affective investment and existential involvement, which is particularly true of the MIV group. It also explains why the affective language is so predominantly supportive. It is thus a common sense assumption that these parents are going through a crisis that cannot be grasped and must therefore simply be embraced as “(p)arental grief may be neither shared nor understood by those who are unbereaved” (Segerstad & Kasperowski, 2014, p. 3). We did not detect any incidents of “RIP trolling,” in which “online instigators post abusive comments and images onto pages created for and dedicated to the deceased” (Phillips, 2011), although

Rhythms of Affective Language

97

this type of behavior might have been deleted from the groups. In our interviews, MIV’s mother mentions a “tough administrator focusing on the positive,” while Lærke’s mother describes one moment after Lærke’s funeral in which unpleasant comments where shared but, thanks to the protective intervention of a friend, were also removed before she had the chance to read them. The only clear exception that breaks the logic of support is when the economic dimension of crowdfunding rises to the surface. Here the affective public of the MIV group experiences more controversy as people begin to disagree about what should happen with the money, to demand transparency concerning how the collectively crowdfunded money is being handled, or to insinuate that interest and investment should be distributed across more patients and initiatives. This shows that crowdfunding can be very effective in this type of group, due to the cultural sympathy and desire to help it attracts, but that it can also risk creating dissonance and practical predicaments during existential crises. Perhaps this helps to explain why the parents in the two cases ask close relatives to handle the financial transactions. The two Facebook groups also foster what Döveling, Harju, and Sommer have called different “digital affect cultures,” which, on a group or meso-level, differ in terms of how crowds, supportive interference, and post-death social rhythms are created. Despite the groups’ similarities, the Lærke case remained on a local/regional scale in terms of members and crowdfunding results (61,685 DKK in Lærke’s case compared with 1,645,347 DKK in MIV’s case), while the MIV case elevated to a national scale and even received international attention. There are many possible explanations for this. Perhaps it creates more public energy when there is a tangible financial goal (800,000 DKK) to help secure life-

98

The Language of Illness and Death on Social Media

saving medical treatment for a child (as there was in MIV’s case) than when the goal is to contribute to a family’s household finances (as it was in the Lærke case). Or perhaps there are important affective explanations. As argued by scholars of virality, explosive viral processes are often stimulated by content that is new and surprising and, in this way, the Lærke case could be experienced as a repetition of the MIV case and thus stimulate less affective investment and circulation among strangers. Besides “surprising newness,” viral dissemination

defined by a rapid increase in cultural dis-

semination of a text or topic followed by an almost equally rapid decrease in interest

is also stimulated by social media

material being taken up by traditional broadcast media or other influential gatekeepers (e.g., celebrities with a large social media entourage) (Nahon & Hemsley, 2013). In this respect, the MIV case attracted a significant amount of national media interest and engagement from national celebrities, while the Lærke case was primarily covered by regional media in its context. Perhaps all of this goes to show that affect is a scarce resource that becomes less intense if processes of mediated suffering are repeated and become “mundane”

for example, the thesis of “compassion

fatigue” proposed by scholars of charity communication (Chouliaraki, 2006). This also highlights the important point that, due to its unpredictable outcomes, social media crowdfunding does not represent a sustainable solution to healthcare challenges. Virality will not ensure healthcare improvements and solutions

only structural political awareness can do this

job. And all these differences underline that, despite sharing similar stories, various “digital affect cultures” with their own logics, hierarchies, norms of (non)sharing, and commemorative participation emerged on the two sites.

Rhythms of Affective Language

99

NOTES 1. At its highest, the MIV Facebook group had more than 22,000 followers. 2. www.caremaker.dk/nc/fr/i/stoet_laerke_roende_timms_kamp_ mod_kraeft/. 3. It is important to note that many of these highly commented posts were made before Facebook’s introduction of more emotional reaction buttons, after which the use of “social buttons” (like the crying or heart emoji) might have become as acceptable as commenting.

This page intentionally left blank

CHAPTER 5 CONCLUSION

By examining two case studies, in this book, we have argued that social media plays a crucial part in conditioning the creation of new affective publics gathering around serious illness (in our case, child cancer), death, and mourning, and that important dimensions of the “digital affect cultures” of these publics can be investigated and understood through the different kinds of language used and shared by their participants. In making this point, we have stressed that bodies and physical affective responses take on a prominent role in social media communication due to their elemental and existential importance for contemporary humans and societies. Instead of emphasizing how “[T]he typed text provided the mask” (Danet, 1998), as is often implied in concerns about the “opportunity to be invisible” in computermediated communications (Suler, 2004), we claim that, in our two case studies, there are visible signs pointing us toward an affected body not always represented in what is written but also in how it is written sometimes even how it is not written (in “broken language”). 101

102

The Language of Illness and Death on Social Media

The existential importance of social media is twofold in the sense that, on the one hand, social media is deployed to manage existential crises, but, on the other hand, it also raises existential questions related to, for example, the level of actual personal investment and dedication involved in loweffort forms of co-grieving online, or to the financial aspects of the platforms, or to turning general healthcare problems into stories of existential struggle instead of treating them as political and structural issues (Berlant, 1997). An important question addressed in this book is how to define and understand affective forms of language and the way they arise and accumulate without reproducing a notion of media as mere channels for moving content between distant interlocutors but rather as infrastructures whose importance is derived from their ability to foster relations, presence, and scaffold human existence in various ways. This book has also asked how we should understand language as something that happens to us instead of something controlled by us. In developing an understanding of “affective language,” we argued that language despite the skepticism toward language-centered analysis in affect theory can relate to affects in two ways: (1) by showing signs of affective force in its form (often through moments of disruption, redundancy, or irregularity), which is a phenomenon that Massumi designates as language “resonating” with affect, and (2) by describing and shaping the affective forces and processes played out in everyday situations. This approach can, according to Wetherell, be described as focused on language as also an “affective practice.” Our analysis showed that the affective vocabulary and language practices of illness and mourning are relatively diverse, containing both formulaic phrases and actions, formal words, conventionalized emojis, indexical use of interjections, capital writing, hesitations dots, and

Conclusion

103

embodied metaphors. Some of these practices reflect thoughtful empathy and attempts to describe and cope with meaninglessness, whereas others are “affectively out of control” and show language as breaking down, thereby mirroring the poster’s sensation of incomprehensible meaninglessness. In our analysis of the two cases, we found that the most prominent forms of affective language were emojis (especially variations of hearts), interjections (especially “åh” (“oh”), “puha” (“whew”)), conventional expressions (“my condolences” and “RIP”), photos of lit candles, and also the use of capitals and sign redundancy. These forms, in various ways and degrees, not only stress the relational, phatic, bodily, and indexical dimensions of the language of illness and death on social media, but also reveal that users continuously experiment with developing a new “vernacular vocabulary” of responding to illness and mourning in social media habitats. Some of these linguistic elements exist in the periphery of both language use and language research, perhaps because of the prevalent focus on language as a cognitive means of sculpturing and comprehending meaning. We instead understand these as linguistic “bastards,” and, via our analyses, we hope to have cleared the way for their “legitimation” as actual acts of performing grief and mourning. We can often grant them the function of translating the affected body’s sensation of something perplexing and inconceivable. If normally structured (syntactically) language creates structure and order, interjections, fragments, and sign redundancy, and perhaps to some extent also emojis, insist on and resonate with the disruptive experiences of life, illness, and death. In looking at the temporal rhythms and developments of the use of affective language, our analysis focused on three points that help to map similarities and differences between the affective characteristics of the two groups. Affective language was shown to be involved in synchronized digital

104

The Language of Illness and Death on Social Media

crowding, in a particular type of supportive interference between rhythms of commenting and of the biology of the patients, and in a change of rhythm as the groups move from focusing on illness to focusing on commemoration and mourning. The two cases, however, also foster different “digital affect cultures,” which differ not only in terms of how crowds, supportive interference, and post-death social rhythms are created but also differ in terms of their size and social/economic effects. The Lærke case thus remained on a local/regional scale in terms of members and crowdfunding results, while the MIV case moved to a national scale and also created a rarer “second screen” form of crowding due to the documentary made about the process. After this, we argued that these differences could be explained through logics of viral communication (the quest for newness) and by affect being a scarce resource in relation to particular forms of suffering. With this book, we therefore hope to have shed light on how language is used (and reinvented and rediscovered) to engage in affective processes related to illness and death on social media and on some of their more general affective logics of accumulation. But we also hope to have revealed how existential publics take on different affective shapes due to their profoundly distinct ways of entangling users, other media, bodies, and cultural contexts.

REFERENCES Ådland, M. K., & Lykke, M. (2015). Social tagging in support of cancer patients’ information interaction. Social Information Research, 5, 101 128. Ahmed, S. (2004). The cultural politics of emotion. Edinburgh: Edinburgh University Press. Akoumianakis, D., Ktistakis, G., & Michailidis, C. (2015). Remediation by design: New linguistic domains for changing organizational practices. UK Academy for Information Systems Conference Proceedings, 2015, 23. Alzheimer Europe. (2011). The value of knowing. Retrieved from https://www.alzheimer-europe.org/Research/Value-ofKnowing. Luxembourg: Alzheimer Europe. Ameka, F. (1992). Interjections: The universal yet neglected part of speech. Journal of Pragmatics, 18(2), 101 118. Andersson, M., Gustafsson, E., Hansson, K., & Karlsson, M. (2013). External mirroring of inner chaos: Blogging as experienced by the relatives of people with cancer. International Journal of Palliative Nursing, 19(1), 16 23. Andersson, Y. (2017). Blogs and the art of dying: Blogging with, and about, severe cancer in late modern Swedish society. Omega: Journal of Death and Dying, 1 20.

105

106

References

Arnold, M., Gibbs, M., Kohn, T., Meese, J., & Nansen, B. (2018). Death and digital media. New York, NY: Routledge. Austin, J. L., Urmson, J. O., & Sbisà, M. (1982). How to do things with words: The William James Lectures delivered at Harvard University in 1955 (2nd ed., reprint with corrections and new indexed.). Oxford: Oxford University Press. Baker, S. A. (2011). The mediated crowd: New social media and new forms of rioting. Sociological Research Online, 16(4). Bender, J., Jimenez-Marroquin, M.-C., & Jadad, A. (2011). Seeking support on Facebook: A content analysis of breast cancer groups. Journal of Medical Internet Research, 13(1), 1 10. Bennett, W. L., & Segerberg, A. (2012). The logic of connective action. Information, Communication & Society, 15(5), 739 768. Berlant, L. (1997). The Queen of America goes to Washington City. Durham, NC: Duke University Press. Blackman, L. (2012). Immaterial bodies: Affect, embodiment, mediation. London: Sage Publications. Borch, C. (2012). The politics of crowds: An alternative history of sociology. Cambridge: Cambridge University Press. boyd, d. (2011). Social network sites as networked publics: Affordances, dynamics, and implications. In Z. Papacharissi (Ed.), Networked self: Identity, community, and culture on social network sites. New York, NY: Routledge. boyd, d., & Ellison, N. B. (2007). Social network sites: Definition, history, and scholarship. Journal of ComputerMediated Communication, 13(1), 210 230.

References

107

Brennan, T. (2004). The transmission of affect. Ithaca, NY: Cornell University Press. Brink, L. (1998). Onomatopoietika når udtalen maler betydningen. In E. Hansen & J. Lund, (Ed.), Det er korrekt. Dansk retskrivning 1948 98. København: Hans Reitzels Forlag. Brubaker, J. R., & Hayes, G. R. (2011). “We will never forget you [online]”: An empirical investigation of postmortem myspace comments. Paper presented at the Proceedings of the ACM 2011 Conference on Computer Supported Cooperative Work, Hangzhou, China. Brubaker, J. R., Hayes, G. R., & Dourish, P. (2013). Beyond the grave: Facebook as a site for the expansion of death and mourning. The Information Society, 29(3), 152 163. Bruns, A., & Burgess, J. (2011). The use of Twitter hashtags in the formation of ad hoc publics. Paper presented at the Proceedings of the 6th European Consortium for Political Research (ECPR) General Conference 2011, University of Iceland, Reykjavik. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 2(4), 167 182. Castleton, K., Fong, T., Wang-Gillam, A., Waqar, M. B., Jeffe, D., Kehlenbrink, L., Gao, F. Govindan, R. (2011). A survey of Internet utilization among patients with cancer. Support Care Cancer, 19(8), 1183 1190. Chariatte, N. (2017). HIV/AIDS in South Africa: Graphic signs countering the stigma and silence. Linguistik Online, 87(8), 127 150. Charon, R. (2006). Narrative medicine. Honoring the stories of illness. New York, NY: Oxford University Press.

108

References

Chiu, Y.-C., & Hsieh, Y.-L. (2012). Communication online with fellow cancer patients: Writing to be remembered, gain strength, and find survivors. Journal of Health Psychology, 18(12), 1572 1581. Chouliaraki, L. (2006). The spectatorship of suffering. London: Sage Publications. Christensen, D. R., & Sandvik, K. (2014). Death ends a life, not a relationship: Objects as media on children’s graves. In D. R. Christensen & K. Sandvik (Eds.), Mediating and remediating death. Surrey: Ashgate. Clough, P. (2008). The affective turn: Political economy, biomedia and bodies. Theory, Culture and Society, 25(1), 1 22. Clough, P. (2009). The new empiricism. Affect and sociological method. European Journal of Social Theory, 12(1), 43 61. Cochrane, L. E. (2017). An imagined community of practice: Online discourse among wheelchair users. Linguistik Online, 87(8), 141 166. Coleman, R., & Ringrose, J. (2013). Deleuze and research methodologies. Edinburgh: Edinburgh University Press. Coll-Planas, G., & Visa, M. (2016). The wounded blogger: Analysis of narratives by women with breast cancer. Sociology of Health and Illness, 38(6), 884 898. Coupland, J., Coupland, N., & Robinson, J. D. (1992). ‘How are you?’: Negotiating phatic communion. Language in Society, 21(2), 207. Danesi, M. (2017). The semiotics of emoji. London: Bloomsbury Academic. Danet, B. (1998). Text as mask: Gender, play, and performance on the Internet. In S. G. Jones (Ed.),

References

109

Cybersociety 2.0: Revisiting computer-mediated communication and community (pp. 129 158). Thousand Oaks, CA: Sage Publications. DeGroot, J. M. (2012). Maintaining relational continuity with the deceased on Facebook. Omega: Journal of Death and Dying, 65(3), 195 212. Dijck, J. v. (2013). The culture of connectivity. New York, NY: Oxford University Press. Döveling, K., Harju, A., & Sommer, D. (2018). From mediatized emotion to digital affect cultures. Social Media + Society, Jan March, 1 11. Dresner, E., & Herring, S. C. (2010). Functions of the nonverbal in CMC: Emoticons and illocutionary force. Communication Theory, 20(3), 249 268. Egebark, J., & Ekström, M. (2011). Like what you like or like what others like? Conformity and peer effects on Facebook. IFN Working Paper, 886, 1 26. Enli, G. (2015). Mediated authenticity. How the media constructs reality. Berlin: Peter Lang. Eranti, V., & Lonkila, M. (2015). The social significance of the Facebook Like button. First Monday, 20(6). Erfani, S. S., Abedin, B., & Daneshgar, F. (2012). A qualitative evaluation of communication in Ovarian Cancer Facebook communities. Paper presented at the 2013 International Conference on Information Society (i-Society), Toronto, ON, Canada. Erman, B., & Kotsinas, U.-B. (1993). Pragmaticalization: The case of ba’ and you know. Studier i modern språkvetenskap, 10, 76 93.

110

References

Ess, C., & AoIR Ethics Working Committee. (2002). Ethical decision-making and internet research. Recommendations from the AoIR ethics working committee. Retrieved from www.aoir.org/reports/ethics.pdf Evans, V. (2017). The emoji code: The linguistics behind smiley faces and scaredy cats (1st US. ed.). New York, NY: Picador. Finn, E. (2017). What algorithms want. London: MIT Press. Flyvbjerg, B. (2010). Fem misforståelser om casestudiet. In S. Brinkmann & L. Tanggaard (Eds.), Kvalitative metoder. Copenhagen: Hans Reitzel. Foley, N., Mahony, M., Lehane, E., Cil, T., & Corrigan, M. (2015). A qualitative content anaysis of breast cancer narratives hosted through the medium of social media. British Journal of Medicine and Medical Research, 6(5), 474 483. Fox Tree, J. E. (2015). Discourse markers in writing. Discourse Studies, 17(1), 64 82. Frank, A. W. (1995). The wounded storyteller. Chicago, IL: Chicago University Press. Frosh, P. (2015). The gestural image: The selfie, photography theory, and kinesthetic sociability. International Journal of Communication, 9, 1607 1628. Garcia, A. C., & Jacobs, J. B. ( 1999). The eyes of the beholder: Understanding the turn-taking system in quasi-synchronous computer-mediated communication. Research on Language and Social Interaction, 32(4), 337 367. Georgakopoulou, A. (2014). Small stories transposition and social media: A micro-perspective on the ‘Greek crisis’. Discourse and Society, 25(4), 519 539.

References

111

Georgakopoulou, A. (2016). From narrating the self to posting self(ies): A small stories approach to selfies. Open Linguistics, 2(1), 300 317. Gerlitz, C. (2016). What counts? Reflections on the multivalence of social media data. Digital Culture and Society, 2(2), 19 38. Gerlitz, C., & Helmond, A. (2013). The like economy. New Media and Society, 15(8), 1348 1365. Giaxoglou, K. (2015a). Entextualising mourning on Facebook: Stories of grief as acts of sharing. New Review of Hypermedia and Multimedia, 21(1 2), 87 105. Giaxoglou, K. (2015b). ‘Everywhere I go, you’re going with me’: Time and space deixis as affective positioning resources in shared moments of digital mourning. Discourse, Context and Media, 9, 55 63. Gibbs, A. (2008). Panic! Affect contagion, mimesis and suggestion in the social field. Cultural Studies Review, 14(2), 130 145. Gibson, M. (2007). Death and mourning in technologically mediated culture. Health Sociology Review: The Journal of the Health Section of the Australian Sociological Association, 16(5), 415 424. Giles, D., Stommel, W., & Paulus, T. M. (2017). The microanalysis of online data: The next stage. Journal of Pragmatics, 115, 37 41. Giles, D., Stommel, W. J. P., Paulus, T., Lester, J. N., & Reed, D. (2015). The microanalysis of online data: Methodological developments. Discourse, Context & Media, 7, 45 51.

112

References

Goddard, C. (2014). Interjections and emotion (with special reference to “surprise” and “disgust”). Emotion Review, 6(1), 53 63. Goffman, E. (1981). Forms of talk. Oxford: Blackwell. Grice, H. P. (1975 (1967)). Logic and conversation. In P. Cole & J. L. Morgan (Ed.), Syntax and semantics (Vol. 3, pp. 41 58). New York, NY: Academic Press. Grønnum, N. (2005). Fonetik og fonologi : almen og dansk (3. udgave ed.). Kbh.: Akademisk. Habermas, J. (1962/1989). The structural transformation of the public sphere. Cambridge, MA: MIT Press. Halupka, M. (2014). Clicktivism: A systematic heuristic. Policy & Internet, 6(2), 115 132. Hansen, E. f., & Heltoft, L. (2011). Grammatik over det danske sprog (1. udgave ed.). Kbh.: Det Danske Sprog- og Litteraturselskab. Hansson, L., & Wihlborg, E. (2015). Constructing an active citizen online: A case study of blogs of medical histories in public healthcare in Sweden. International Journal of Public Information Systems, 11(1), 1 16. Hardey, M. (2002). ‘The story of my illness’: Personal accounts of illness on the Internet. Health, 6(1), 31 46. Heilferty, C. M. (2009). Toward a theory of online communication in illness: Concept analysis of illness blogs. Journal of Advanced Nursing, 2009, 1539 1547. Heilferty, C. (2018). The search for balance: Prolonged uncertainty in parent blogs of childhood cancer. Journal of Family Nursing, 1 21.

References

113

Hepp, A. (2012). Mediatization and the ‘moulding force’ of the media. Communications, 37(1), 1 28. Heritage, J., & Robinson, J. D. (2011). ‘Some’ versus ‘any’ medical issues: Encouraging patients to reveal their unmet concerns. In C. Antaki (Ed.), Applied conversation analysis. Intervention and change in institutional talk (pp. 15 31). Basingstoke: Palgrave Macmillan. Herring, S. (1999). Interactional coherence in CMC. Journal of Computer-Mediated Communication, 4(4). Herring, S., & Dainas, A. (2017). “Nice picture comment!” Graphicons in Facebook comment threads. Proceedings of the Fiftieth Hawai’i International Conference on System Sciences. Herring, S. C. (2010). Computer-mediated conversation Part I: Introduction and overview. Language@Internet, 7(2). Hjarvard, S. (2008). The mediatization of society. Nordicom Review, 29(2), 102 131. Hougaard, T. T. (2013). Hmmm - interjektioner på Facebook. Møde om Udforskningen af Dansk Sprog, Årg, 14, 167 184. Hougaard, T. T. (2017). Progressivitet via interaktionelle resurser og partikler i skrevet online interaktion. Paper presented at the Sprogbrug i de nye medier, København. Hougaard, T. T., & Rathje, M. (2018). Emojis in the digital writings of young Danes. In A. E. Ziegler, M. Lenzhofer, & G. Oberdorfer (Eds.), Jugendsprachen/Youth languages. Aktuelle Perspektiven internationaler Forschung/Current Perspectives of International Research (pp. 773 806). Berlin: De Gruyter.

114

References

Høybye, M. T., Dalton, S. O., Christensen, J., Ross, L., Kuhn, K. G., & Johansen, C. (2010). Social and psychological determinants of participation in internet-based cancer support groups. Support Care Cancer, 18, 553 560. Høybye, M. T., Johansen, C., & Tjørnhøj-Thomsen, T. (2005). Online interaction. Effects of storytelling in an Internet breast cancer support group. Psycho-oncology, 14, 211 220. Jacobsen, M. H., & Kristiansen, S. (2015). The social thought of Erving Goffman. Thousand Oaks, CA: Sage Publications. Jakobson, R. (1960). Closing statement: Linguistics and poetics. In T. A. Sebeok (Ed.), Style in language (pp. 350 377). New York, NY: The Technology Press of Massachusetts Institute of Tecnology and John Wiley & Sons. Jakobson, R., Waugh, L., & Taylor, M. (1979). The sound shape of language. Brighton: Harvester Press. Jefferson, G. (2004). A note on laughter in ‘male female’ interaction. Discourse Studies, 6(1), 117 133. Jurecic, A. (2012). Illness as narrative. Pittsburgh, PA: University of Pittsburgh Press. Kaplan, A., & Haenlein, M. (2010). Users of the world, unite! The challenges and opportunities of Social Media. Business Horizons, 53, 59 68. Keim-Malpass, J., Baernholdt, M., Erickson, J., Ropka, M., Schroen, A., & Steeves, R. (2013). Blogging through cancer. Cancer Nursing, 36(2), 163 172. Kelly, R., & Watts, L. (2015). Characterising the inventive appropriation of emoji as relationally meaningful in mediated

References

115

close personal relationships. Paper presented at Experiences of Technology Appropriation: Unanticipated Users, Usage, Circumstances, and Design, Olso, Norway. Kim, B., & Gillham, D. (2015). Gender differences among young adult cancer patients. A study of blogs. CIN: Computers, Informatics, Nursing, 33(1), 3 9. Klastrup, L. (2015). “I didn’t know her, but…”: Parasocial mourning of mediated deaths on Facebook RIP pages. New Review of Hypermedia and Multimedia, 21(1 2), 146 164. Klastrup, L. (2016). Sociale netværksmedier. København: Samfundslitteratur. Klastrup, L. (2018). Death and communal mass-mourning: Vin Diesel and the remembrance of Paul Walker. Social Media + Society, 4(1), 1 11. Knudsen, B. T., & Andersen, C. (2018). Affective politics and colonial heritage, UCT: Rhodes must fall and rmf in Oxford. International Journal of Heritage Studies, Forthcoming. Knudsen, B. T., & Stage, C. (2012). Online war memorials. Memory Studies, 6(4), 418 436. Knudsen, B. T., & Stage, C. (2015a). Global media, biopolitics and affect: Politicizing bodily vulnerability. New York, NY: Routledge. Knudsen, B. T., & Stage, C. (Eds.). (2015b). Affective methodologies. London: Palgrave. Kuntsman, A. (2012). Introduction: Affective fabrics of digital cultures. In A. Kuntsman & A. Karatzogianni (Eds.), Digital cultures and the politics of emotion. New York, NY: Palgrave.

116

References

Lagerkvist, A. (2016). Existential media: Toward a theorization of digital thrownness. New Media and Society, 7(4), 550 564. Lagerkvist, A. (2018). Numerical being and non-being: Probing the ethos of quantification in bereavement online. In Z. Papacharissi (Ed.), A networked self and birth, life, death. New York, NY: Routledge. Lagerkvist, A., & Andersson, Y. (2017). The grand interruption: Death online and mediated lifelines of shared vulnerability. Feminst Media Studies, 15. Lakoff, G., & Johnson, M. (1980). Metaphors we live by (8th printing ed.). Chicago, IL: University of Chicago Press. Larsen, M. C., & Kofoed, J. (2016). A snap of intimacy: Photo-sharing practices among young people on social media. First Monday, 21(11). Laursen, L. (2003). Konversationsanalysen i kommunikationsundervisningen for medicinstuerende. In J. A. Steensig Birte (Ed.), Samtalen på arbejde konversationsanalyse og kompetenceudvikling. Frederiksberg C.: Samfundslitteratur. Le Bon, G. (1895). The Crowd. A study of the popular mind. New York, NY: Dover Publications. Lebduska, L. (2014). Emoji, emoji, what for art thou? Harlot, 12. Lefebvre, H. (1992). Rhythm analysis. London: Continuum. Lefebvre, H., & Régulier, C. (1992). The rhythm analytical project. Rhythm analysis. London: Continnum. Leys, R. (2011). The Turn to affect: A critique. Critical Inquiry, 37(3), 434 472.

References

117

Littlechild, S. A., & Barr, L. (2013). Using the internet for information about breast cancer: A questionnaire-based study. Patient Education and Counseling, 92, 413 417. Lomborg, S. (2013). Genreforhandling som kommunikativ praksis på Facebook. In J. E. T. Jensen (Ed.), Facebook - fra socialt netværk til metamedie (pp. 95 116). Frederiksberg: Samfundslitteratur. Madianou, M., & Miller, D. (2012). Polymedia: Towards a new theory of digital media in interpersonal communication. International Journal of Cultural Studies, 16(2), 169 187. Malinowski, B. (1923). The problem of meaning in primitive languages. In C. K. O. I. A. Richards. (Ed.), The meaning of meaning (pp. 451 510). London: Routledge & Kegan Paul. Maloney, E., D’Agostino, T., Heerdt, A., Dickler, M., Li, Y., Ostroff, J., & Bylund, C. (2015). Sources and types of online information that breast cancer patients read and discuss with their doctors. Palliative and Supportive Care, 13, 107 114. Manovich, L. (2001). The language of new media. Cambridge, MA: MIT Press. Markham, A., & Buchanan, E. (2012). Ethical decisionmaking and internet research. Recommendations from the AoIR Ethics Working Committee (Version 2.0). Retrieved from http://aoir.org/reports/ethics2.pdf Marwick, A., & Ellison, N. B. (2012). “There isn’t wifi in heaven!” Negotiating visibility on Facebook memorial pages. Journal of Broadcasting & Electronic Media, 56(3), 378 400. Massumi, B. (2002). Parables for the virtual. Durham, NC: Duke University Press.

118

References

Massumi, B. (2015). The politics of affect. Malden, MA: Polity. McCosker, A. (2013). Intensive media: Aversive affects and visual culture. Basingstoke: Palgrave. Meredith, J. (2017). Analysing technological affordances of online interactions using conversation analysis. Journal of Pragmatics, 115, 42 55. Meredith, J., & Potter, J. (2013). Conversation analysis and electronic interactions: Methodological, analytic and technical considerations. In H. L. Lim & F. Sudweeks. (Ed.), Innovative Methods and Technologies for Electronic Discourse Analysis (pp. 370 391), IGI Global, Hershey, Pennsylvania. Meredith, J., & Stokoe, E. (2014). Repair: Comparing Facebook ‘chat’ with spoken interaction. Discourse & Communication, 8(2), 181 207. MetLife Foundation. (2011). What America thinks: MetLife Foundation Alzheimer’s Survey. Retrieved from https://www. metlife.com/content/dam/microsites/about/corporate-profile/ alzheimers-2011.pdf Miller, H., Thebault-Spieker, J., Chang, S., Johnson, I., Terveen, L., & Hecht, B. (2016). “Blissfully happy“ or “ready to fight”: Varying interpretations of emoji. Paper presented at the International AAAI Conference on Web and Social Media. Mol, A. (2008). The logic of care. Health and the problem of patient choice. London: Routledge. Munster, A. (2013). An aesthesia of networks. Cambridge, MA: The MIT Press.

References

119

Nahon, K., & Hemsley, J. (2013). Going viral. Malden, MA: Polity. Nesby, L., & Salamonsen, A. (2016). Youth blogging and serious illness. Med Humanit, 42, 46 51. Nguyen, S. K. A., & Ingledew, P.-A. (2013). Tangled in the breast cancer web. Journal of Cancer Education, 28, 662 668. Oeldorf-Hirsch, A., & Sundar, S. S. (2015). Posting, commenting, and tagging: Effects of sharing news stories on Facebook. Computers in Human Behavior, 44, 240 249. Orgad, S. (2005). Storytelling online. Talking breast cancer on the Internet. New York, NY: Peter Lang. Ozanne, M., Cueva Navas, A., Mattila, A. S., & Van Hoof, H. B. (2017). An investigation into Facebook “liking” behavior: An exploratory study. Social Media + Society, 3(2), 1 12. Paasonen, S. (2016). Fickle focus: Distraction, affect and the production of value in social media. First Monday, 21(10), 1 14. Page, R. (2012). Stories and social media. Identities and interaction. New York, NY: Routledge. Page, R. (2018). Narratives online: Shared stories in social media. Cambridge: Cambridge University Press. Palmer, F. R. (2006). Mood and modality (2nd reprint ed.). Cambridge: Cambridge University Press. Papacharissi, Z. (2015). Affective publics: Sentiment, technology, and politics. New York, NY: Oxford University Press.

120

References

Papacharissi, Z. (2018). Introduction. In Z. Papacharissi (Ed.), A networked self and birth, life, death. New York, NY: Routledge. Paulus, T., Warren, A., & Lester, J. N. (2016). Applying conversation analysis methods to online talk: A literature review. Discourse, Context & Media, 12, 1 10. Pavalanathan, U., & Eisenstein, J. (2016). Emoticons vs. emojis on Twitter: A causal inference approach. Paper presented at the AAAI 2016 Spring Symposium on Observational Studies through Social Media and Other Human-Generated Content, Atlanta. Peirce, C. (1885). On the algebra of logic: A contribution to the philosophy of notation. American Journal of Mathematics, 7(2), 180 196. Peters, J. D. (2015). The marvelous clouds. Chicago, IL: Chicago University Press. Phillips, W. (2011). LOLing at tragedy: Facebook trolls, memorial pages and resistance to grief online. First Monday, 16(12). Pitts, V. (2004). Illness and Internet empowerment: Writing and reading breast cancer in cyberspace. Health, 8(1), 33 59. Provine, R. R., Spencer, R. J., & Mandell, D. L. (2007). Emotional expression online : Emoticons punctuate website text messages. Journal of Language and Social Psychology, 26(3), 299 307. Qualman, E. (2011). Socialnomics : How social media transforms the way we live and do business, Hoboken, NJ: John Wiley & Sons.

References

121

Rathje, M. (2018). ‘Jeg kondolere’: Sprognørderne græmmede sig i hobetal efter prins Henriks død. Politiken. Ressler, P. K., Bradshaw, Y., Gualtieri, L., & Chui, K. K. H. (2012). Communicating the experience of chronic pain and illness through blogging. Journal of Medical Internet Research, 14(5), 1 13. Riordan, M. A. (2017). Emojis as tools for emotion work: Communicating affect in text messages. Journal of Language and Social Psychology, 36(5), 549 567. Rodrigues, D., Lopes, D., Prada, M., Thompson, D., & Garrido, M. V. (2017). A frown emoji can be worth a thousand words: Perceptions of emoji use in text messages exchanged between romantic partners. Telematics and Informatics, 34(8), 1532 1543. Sacks, H. (1985). On doing “being ordinary”. In J. M. Atkinson (Ed.), Structures of social action (pp. 413 429). Cambridge: Cambridge University Press. Sacks, H. (1987). On the preferences for agreement and contiguity in sequences in conversation. In G. Button & J. Lee (Eds.), Talk and social organization. Clevedon: Multilingual Matters. Sacks, H., Schegloff, E. A., & Jefferson, G. (1974). A simplest systematics for the organization of turn-taking for conversation. Language, 50(4), 696 735. Salló, S. (2011). The faces of Messenger emoticons in the virtual communication. Acta Universitatis Sapientiae. Social Analysis, 1(2), 307. Sampson, T. (2012). Virality. Contagion theory in the age of networks. Minneapolis, MN: University of Minnesota Press.

122

References

Sandvik, K., & Christensen, D. R. (2013). Sharing death: Conceptions of time at a Danish online memorial site. In R. Willerslev & D. R. Christensen (Eds.), Taming time, timing death: Social technologies and ritual. Farnham: Ashgate. Schegloff, E. A. (2007). Sequence organization in interaction. A Primer in conversation analysis (Vol. 1). Cambridge: Cambridge University Press. Scherer, K. R. (1994). Affect bursts. In S. H. M. van Goozen, N. E. van de Poll, & J. A. Sergeant (Eds.), Emotions: Essays on emotion theory (pp. 161 193). Hillsdale, NJ: Lawrence Erlbaum. Searle, J. R. (1974). Speech acts: An essay in the philosophy of language (Repr. ed.). Cambridge: Cambridge University Press. Segerstad, Y. H. a., & Kasperowski, D. (2014). A community for grieving: affordances of social media for support of bereaved parents. New Review of Hypermedia and Multimedia, 21(1 2), 25 41. Sharf, B. F. (1997). Communicating breast cancer on-line: Support and empowerment on the Internet. Women and Health, 26(1), 65 84. Shepard, C. A., Giles, H., & Le Poire, B. A. (2001). Communication accommodation theory. In P. Robinson & H. Giles (Eds.), The new handbook of language and social psychology (pp. 33 56). Chichester: John Wiley & Sons. Skovholt, K., Grønning, A., & Kankaanranta, A. (2014). The communicative functions of emoticons in workplace e-mails: :-). Journal of Computer-Mediated Communication, 19(4), 780 797.

References

123

Sontag, S. (1991). Illness as metaphor. London: Penguin Books. Sproull, L., & Kiesler, S. (1986). Reducing social context cues: Electronic mail in organizational communications. Management Science, 32(11), 1492 1512. Squires, C. (2002). Rethinking the black public sphere: An alternative vocabulary for multiple public spheres. Communication Theory, 12(4), 446 468. Stacey, J. (1997). Teratologies. A cultural study of cancer. London: Routledge. Stage, C. (2013). The online crowd: A contradiction in terms? On the potentials of Gustave Le Bon’s crowd psychology in an analysis of affective blogging. Distinktion: Scandinavian Journal of Social Theory, 14(2), 211 226. Stage, C. (2014). Online a-liveness: A ‘rhytmanalysis’ of three illness blogs made by Rosie Kilburn, Jessica Joy Rees and Eva Markvoort. In K. Sandvik & D. R. Christensen (Eds.), Mediating and re-mediating death. London: Ashgate. Stage, C. (2017). Networked cancer. Affect, narrative and measurement. Cham: Palgrave/Springer. Stange, U. (2016). Emotive interjections in British English: A corpus-based study on variation in acquisition, function and usage. Amsterdam: John Benjamins Publishing Company. Stark, L., & Crawford, K. (2015). The conservatism of emoji: Work, affect, and communication. Social Media + Society, 1(2), 87 96. Stokes, P. (2015). Deletion as second death: The moral status of digital remains. Ethics and Information Technology, 17(4), 237 248.

124

References

Stommel, W. (2009). Entering an online support group on eating disorders: A discourse analysis. Amsterdam: Rodopi. Sugawara, Y., Narimatsu, H., Hozawa, A., Shao, L., Otani, K., & Fukao, A. (2012). Cancer patients on Twitter: A novel patient community on social media. BMC Research Notes, 5, 1 9. Suler, J. (2004). The online disinhibition effect. Cyber Psychology & Behavior, 7(3), 321 326. Tarde, G. (1901). The public and the crowd Gabriel Tarde. On Communication and Social Influence. Chicago, IL: Chigaco University Press. Tembeck, T. (2016). Selfies of ill health: Online autopathographic photograpgy and the dramaturgy of the everyday. SM + S Social media + Society, January March, 1 11. Thompson, D., Mackenzie, I. G., Leuthold, H., & Filik, R. (2016). Emotional responses to irony and emoticons in written language: Evidence from EDA and facial EMG. Psychophysiology, 53, 1054 1062. Thrift, N. (2008). Non-representational theory. London: Routledge. Tiidenberg, K., & Cruz, E. G. (2015). Selfies, image and the re-making of the body. Body & Society, 21(4), 77 102. Togeby, O. (1993). PRAXT. Pragmatisk tekstteori Iog II. Aarhus Universitetsforlag. Tsuya, A., Sugawara, Y., Tanaka, A., & Narimatsu, H. (2014). Do cancer patients Tweet? Examining the Twitter use of cancer patients in Japan. Journal of Medical Internet Research, 16(5), 1 13.

References

125

Vannini, P. (2015). Non-representational methodologies. New York, NY: Routledge. Vraga, E. K., Stefanidis, A., Lamprianidis, G., Croitoru, A., Crooks, A. T., Delamater, P. L. … Jacobsen, K. H. (2018). Cancer and social media: A comparison of traffic about breast cancer, prostate cancer, and other reproductive cancers on Twitter and Instagram. Journal of Health Communication, 23(2), 181 189. Wagner, A. (2018). Do not click “Like” when somebody has died. Social Media + Society, Jan March, 1 11. Walter, T., Hourizi, R., Moncur, W., & Pitsillides, S. (2011). Does the Internet change how we die and mourn? Overview and analysis. Omega: Journal of Death and Dying, 64(4), 275 302. Walter, T. (2015). New mourners, old mourners: Online memorial culture as a chapter in the history of mourning. New Review of Hypermedia and Multimedia, 21(1 2), 10 24. Warner, E. L., Ellington, L., Kirchhoff, A. C., & Cloyes, K. G. (2017). Acquisition of social support and linguistic characteristics of social media posts about young adult cancer. Journal of Adolescent and Young Adult Oncology, 7(2), 196 203. Warner, M. (2002). Publics and counterpublics. Public Culture, 14(1), 49 90. Watzlawick, P., Bavelas, J. B., & Jackson, D. D. (1988). Pragmatics of human communication: A study of interactional patterns, pathologies, and paradoxes. London: W. W. Norton. Wenger, E. (1998). Praksisfællesskaber. Læring, mening og identitet. København: Hans Reitzels Forlag.

126

References

West, L., & Trester, A. (2013). Facework on facebook: Conversations on social media. In D. Tannen & A.M. Trester (Ed.), Discourse 2.0: language and new media. (pp. 133 154). Washington, DC: Georgetown University Press. Wetherell, M. (2012). Affect and emotion. London: Sage Publications. Wharton, T. (2003). Interjections, language, and the ‘showing/saying’ continuum. Pragmatics and Cognitionpragmatics and Cognition, 11(1), 39 91. Wiedeman, C. (2014). Between swarm, network, and multitude: Anonymous and the infrastructures of the common. Distinktion. Journal of Social Theory, 15(3), 309 326. Wilkins, D. P. (1992). Interjections as deictics. Journal of Pragmatics, 18(2 3), 119 158. Willis, E., & Ferrucci, P. (2017). Mourning and grief on Facebook: An examination of motivations for interacting with the deceased. Omega: Journal of Death and Dying, 76(2), 122 140. Wittgenstein, L. (1953). Philosophical investigations. Oxford: Blackwell. Ytre-Arne, B. (2016). The social media experiences of longterm patients: Illness, identity and participation. Nordicom Review, 37(1), 57 70. Zappavigna, M. (2011). Ambient affiliation: A linguistic perspective on Twitter. New Media & Society, 13(5), 788 806. Ziebland, S., Chapple, A., Dumelow, C., Evans, J., Prinjha, S., & Rozmovits, L. (2004). Information in practice. How the internet affects patients’ experience of cancer: A qualitative study. BMJ, 328, 1 6.

INDEX Affect, 7, 21, 24, 35, 42, 65 Affective, 2 6, 14, 15, 18, 23, 27, 36, 38, 44, 54 55, 62, 66, 67, 69, 72, 73, 80, 82, 85, 102, 104 Affective archives, 22 Affective expressions, 60 Affective feedback loops, 23, 89 Affective language, 2, 6, 17, 21 29, 102 of annual cycles, 77 79, 91 98 of crowds, 77 79 forms of, 43 70 rhythms of, 71 99 of supportive interference, 77 79, 89, 90 Affective practice, 29, 45, 78, 102 Affective publics, 2, 5, 6, 22, 23, 30, 73, 96, 97, 101 Affective resonation, 26 Affective vocabulary, 69, 102

Affectivity, 21 Affect vocalization, 60 Affordance, 3, 18, 53, 60, 71, 72, 94 Algorithmic, 15, 18, 31 Alzheimer Europe, 9 Ambient affiliation, 14 Ameka, Felix, 38 40 Andersson, Maria, 12 Angel, 44, 57, 59, 92, 93 Annual cycles, affective language of, 77 79, 91 98 Anorexia, 14 Aposiopesis, 25, 68 Archive, 12, 21, 22 Arranging and lighting photo candles, 50 52 Arrhythmia, 87 Association of Internet Researchers (AoIR), 8 Atmosphere, 52, 58 Balance, 89, 90 Big data, 7 Biographical continuity, 11 Biographically disrupting, 12

127

128

Biological entrepreneurs, 73 Biological rhythms, 91 98 Biology, 96, 104 Birthday, 76, 77, 79, 92 94 Blackman, Lisa, 27, 82, 83 Blog, 5, 7, 10 13, 16 18, 21, 25, 82, 89 90 Blogger, 12 Bodies, 4, 19 23, 26, 30, 63, 78 80, 83, 101, 104 Bodily actions, 45 Bodily co-presence, 80 Body, 14, 15, 18, 21, 23 28, 30, 36, 39, 44, 48, 51, 55, 58, 60, 61, 65 67, 69, 79, 80, 85, 86, 89, 101, 103 Bond, 12, 82, 91, 92 Bradley Lowery Foundation, The, 5 Breath, 37, 39, 60, 61, 63, 83 Brennan, Teresa, 21, 22, 24, 66 Button, 33, 53 55, 93, 99n3 Cancer, 2, 4, 5, 9 12, 14, 15, 17, 18, 72 74, 76, 84, 87, 89 91, 94, 101 Candle, 17, 32, 41, 48, 50 52, 75, 84, 85, 103 Capital writing, 7, 102

Index

Care, 19, 50, 52, 59, 60, 85, 94, 95 Caremaker, 76 Carey, James, 3 Caring, 56 60 Caring crowds, 79 85 Caring for Kian, 5 Clicktivism, 54 Clough, Patricia, 21, 24, 27 Cognition, 28 Cognition/body dichotomy, 23, 27 Cognitive, 18, 21, 23 27, 35, 103 Collective indignation, 14 Commemoration, 9, 17, 72, 91 Commenting, 53, 88, 89, 96, 99n3, 104 Community-building, 14 Compassion fatigue, 98 Computer-mediated communication (CMC), 33 34 Computer-mediated discourse (CMD), 30 Condolences, 45 48 Constructive interference, 89, 90 Constructivists, 21 Conversation, 30 36 Conversation analysis (CA), 30, 33, 54 Crowding, 79, 83 85, 96, 104 Crowdfunding, 72, 74 76, 84, 90, 92, 93, 97, 98, 104

Index

Crowds affective language of, 77 79 caring, 79 85 Cultural pragmaticalization, 50 Cultural socialization, 38 Cyber bullying, 2 Cyber cemeteries, 15 Dainas, Ashley, 34 Danesi, Marcel, 35, 57 Data linguistics, 7 Death, 9 20 Degroot, Jocelyn, 16 Deictics, 19, 44 Destructive interference, 89 Digital affect cultures, 78, 97, 98, 101, 104 Digital assaults, 2, 17 Digital communication, 2 Digital conflicts, 2 Digital conversation analysis, 30 Digital crowding, 79, 83 84 Digital divide, 10 Digital Footprints, 6, 7 Digital reactions, 33 Direct mediatization, 10 Discourse, 21, 23, 27 31 Discourse/intensity dichotomy, 23 Do no harm, 8 Döveling, Katrin, 2, 78, 97 DR1, 75 Dumping, 66 Dying, 2, 5, 6, 12, 15, 74 Dynamic affective publics, 22

129

Economic, 3, 15, 65, 72 76, 97, 104 Economy, 72 Eid, Julie, 5, 47, 74 Elemental, 1, 3, 18, 20, 29, 77, 83, 101 Embodied metaphors, 21, 35, 44, 69, 81, 103 Emojis, 6, 7, 33 36, 41, 56 60, 84, 103 Emoticons, 57, 68 Emotion, 24, 25 Emotional relief, 11 Emotional support, 12 Empathy, 10, 57, 84 Energy, 63, 65, 89, 90, 97 Entextualise, 2 Environmental media, 18 Ephemeral, 11, 14 Epideictic, 44 Equilibrium, 89, 90 Eranti, Veikko, 53, 54 Ethical, 4, 8, 18 Ethics, 5 8 Exclamations, 39 Existence, 1, 17, 18, 20, 102 Existential media, 2, 9 20, 102 Exister, 1 Expressive spelling, 33 Face, 57, 58, 65, 71, 74, 83 Face-to-face, 10, 45, 52, 57 Facebook, 2, 5 8, 9, 11, 12, 14 16, 20, 21, 23, 33, 35, 44, 45, 47, 50,

130

53 55, 57, 59, 60, 64, 66, 71 78, 81, 83, 87, 90, 91, 94, 97 Facebook group, 2, 7, 9, 14, 23, 35, 44, 47, 50, 54, 59, 60, 64, 66, 73 78, 81, 83, 91, 94, 97, 99n1 Family, 2, 10, 12, 19, 46, 49, 51, 54, 73 77, 84, 85, 89, 91 95, 98 Father, 67 68, 75, 84, 94 Fighting for Magnus (MIV), 5, 7, 9, 35, 44, 47, 49, 51, 55, 56, 60 62, 64, 65, 67, 68, 73 77, 81, 83 85, 90 98, 104 Figurative language, 44 Flaming, 82 Flower, 57, 93 Funeral, 43, 57, 79, 84, 97 General Data Protection Regulation, 7 Georgakopoulou, Alexandra, 13, 83 Gerlitz, Carolin, 15, 53, 55, 72 Gestures, 56 Gibbs, Anna, 83 Goddard, Cliff, 38, 40 Goffman, Erving, 36, 37, 41 Golden Rule behavior, 41 Graphicon, 34 Grave, 49, 76, 77, 84, 93 Grief, 15, 57, 69

Index

Grief tourist, 72 Grief work, 5, 53 Grieving, 30, 65, 95, 102 Harju, Anu, 2, 97 Hashtags, 14, 23 Heart, 33, 36, 56 60, 66, 69, 78, 82, 84, 86 88, 93, 99n3, 103 Heilferty, Cathrine, 89 90 Helmond, Anne, 53, 55, 72 Heritage, 16, 31 Herring, Susan, 31, 33, 34 Hesitation dots, 6, 7, 102 Hourizi, Rachid, 15, 91 Icon, 26, 33, 35, 59 Iconicity of the iteration, 66 Illness, 9 20 Illness blogging, 82 Illocutionary, 34 Implicature, 59 Indexicality, 4, 7, 38, 65, 67 Indexical sign, 26 Infrastructural media, 18 Innis, Harold, 3 Instagram, 11, 16, 21, 33 Interaction, 2, 4, 16, 20, 25, 30 33, 36, 37, 39, 41, 43, 45, 54, 56 60, 88 Interference, 77 79, 85 90, 96, 97, 104 Interjections, 4, 6, 7, 25, 36 41, 60 66, 103 primary, 36, 37, 39

Index

secondary, 36 Interpersonal conventionalization, 38 Jakobson, Roman, 19 20 Jaspers, Karl, 17 Johnson, Mark, 44 Kampen for Magnus (The Fight for Magnus), 62 Kasperowski, Dick, 17, 44, 91, 96 Kelly, Ryan, 35 36 Kittler, Friedrich, 3 Klastrup, Lisbeth, 11, 36, 43, 47, 49, 69 Kristeva, Julia, 26, 27 Lagerkvist, Amanda, 1, 2, 17 18, 85, 93 Lakoff, George, 44 Language affective, 2, 6, 17, 21 29, 43 70 relational, 29 42 Large-D Discourse, 21 Le Bon, Gustave, 80 Lefebvre, Henri, 85 86, 89 Lexical vocalization, 61 Lifelines, 17, 19, 85 Like, 53 56, 72 Liking, 30, 32, 88 Limit situations, 16 Linguistic periphery, 66 69 Logistical media, 18

131

Lomborg, Stine, 20 Love, 33, 35, 36, 57, 60, 92, 94 Magnus, 5, 7 Malinowski, Bronislaw, 19, 20 Massumi, Brian, 21, 24 29, 40, 42n2, 67, 78, 102 Materiality, 16, 94 McLuhan, Marshall, 3 Meaning, 3, 4, 6, 8, 19, 21, 23, 27 29, 32, 34, 36 42, 46, 47, 53, 55, 58, 65 67, 103 Meaningless, 41, 66, 67, 78, 95, 103 Media, 1 6, 9 23, 29 33, 41, 45, 48, 53, 57, 58, 60, 65, 71 75, 77, 78, 80 83, 88, 94, 98, 101 104 Mediatization, 10 Meme, 14 Memorial, 15, 17, 43, 91 Meredith, Joanne, 31 Messenger, 32 Metamessage, 54, 57, 59 Metaphor, 44, 103 Method, 5 8, 24 Methodologies, 4, 24, 27 Methodology, 4, 7, 24, 26, 27 MetLife Foundation, 10 Metrification, 72 Meyrowitz, Joshua, 3

132

Microanalysis of online data, 30 Mimics, 56 Mind/matter dichotomy, 23, 27 Minimal engagement, 53 56 Minimal responses, 32 MIV, 5, 7, 9, 35, 44, 47, 49, 51, 55, 56, 60 62, 64, 65, 67, 68, 73 77, 81, 83 85, 90 98, 99n1, 104 Modality, 7, 58 Moncur, Wendy, 15, 16, 91 Mourning, 69, 71 72, 82 Multimodal, 6, 21 Multivalence, 72 Multivalent, 15, 22 “My condolences,” as ritualized phrase, 45 48 MySpace, 16 Narrative, 6, 12 15, 25, 28, 51, 72, 73 Navigational, 19 Networked publics, 71 Noise, 25, 40 Nonverbal communication, 68 Online forums, 2 Onomatopoeias, 39 Ontology, 18 Paasonen, Susanna, 22 Page, Ruth, 13

Index

Papacharissi, Zizi, 22, 23 Parables for the Virtual, 25 Paralinguistic functions, 34 Para-verbal communication, 21, 57 Parent, 6, 8, 16, 34, 44, 46, 49, 51, 62, 74, 75, 79, 89 92, 95 97 Patient, 9 11, 15, 72, 75, 89, 96, 97, 104 “Patient participation” platforms, 15 Pause, 31 Peer support, 12 Peirce, Charles, 26 Persistence, 71 Personalized action frame, 51 Peters, John Durham, 1 2, 18 19, 20, 78 Phatic, 20, 36, 56, 103 Phatic communion, 4, 19 20, 36 Phonetics, 38, 63 Phono-semantics, 38 39 Physical co-presence, 80 Pitsillides, Stacey, 15, 16, 91 Platform, 3 5, 8, 10, 11, 15 17, 22, 53, 72, 73, 102 Platformed sociality, 14 Political exclusion, 14 Politics of Affect, The (Massumi), 42 Polymedia, 94 Polyrhythmia, 87 Positioning, 14

Index

Positive story recipiency, 13 Poststructuralists, 21 Pragmatic, 21 Pragmaticalization, 50 Pragmatic analyses, 21 Presence, 16, 18, 19, 32, 38, 65, 80, 85, 88, 102 Principle of expressibility, 41 Public, 5, 10, 12, 14 16, 22, 42n1, 43, 48, 73, 77, 80 83, 90, 91, 93, 94, 97 Public and the Crowd, The (Gustave Le Bon), 80 Rathje, Marianne, 49 50 Relationality of the communicators, 21 Relational language, 29 42 Relative, 12, 73, 80, 83 Replicability, 71 Resonation/resonating, 26, 78, 102 Response, 28, 30, 33, 36, 45, 53, 54, 58, 60, 66, 83, 84, 94 Response cries, 36 Rest In Peace (RIP), 48 50, 52 Rhetorical aposiopesis, 25, 68 Rhythms, 7 of affective language, 71 99 analysis, 86

133

analytical, 6 biological, 91 98 cyclical, 86 linear, 86 of the other, 86 of the self, 86 RIPing, 49 Ritual, 46, 51, 52, 83 Ritual appreciation, 13, 83 Ritualized, 45 48, 61, 76 Rodrigues, David, 34, 35 Sad, 33, 45, 51, 55, 57, 59, 93 Sadness, 22, 61 Sampson, Tony, 83 Scalability, 71, 73 Searchability, 71 Searle, John, 21, 41, 46 Segerstad, Ylva Hård af, 17, 44, 91, 96 Self-exploration, 14 Selfie, 14 Semantic diversity, 34 Semantic rules, 21 Semiotic, 2 4, 6, 19, 30 Semiotic media, 20 Sensation, 28 Shared attention, 14 Sign, 26, 27, 33, 34, 51, 53, 55, 65, 67 Signifier signified relationship, 39 Sign production, 25, 36 Sign redundancy, 7, 25, 66, 103 Small-d discourse, 21

134

Small stories, 13 Snapchat, 11 Social isolation, 12 Social button, 53, 99n3 Social media, 1 Social networking sites (SNSs), 10, 71, 91 defined, 42 multivalence of, 72 Social semiotics, 30 Sommer, Denise, 2, 97 Spectacular death, 43 Speech act, 41, 46 Spelling, 33, 40, 84 Spontaneous engagement, 53 56 Stage, Carsten, 4, 5, 12, 14, 15, 21 23, 25, 73, 80, 83 Stange, Ulrike, 36 Star, 57 Stark, Luke, 34 Stranger relationality, 81 Suffering, 46, 49, 50, 51, 73, 74, 98, 104 Support groups, 2 Supportive interference, 79 affective language of, 77 79, 89, 90, 104 rhythms of, 85 90 Symbol, 26, 57 Sympathy, 62 Syntactic rules, 21 Tarde, Gabriel, 80 83 Temporality, 13, 32 Therapeutic, 11, 73

Index

Thompson, Dominic, 34, 35 Thrift, Nigel, 83 Ties, 77 Timm, Lærke Rønde, 5, 76 77, 91 Timm, Line Rønde, 76 Tone modification, 34 Transcorpereal communication (TcC), 16 Troll, 72 Trolling, 96 Turn, 17, 21, 33, 45, 48, 88, 89 Turn-taking, 31, 32 Twitter, 5, 11, 12, 21, 33 Typing awareness indicator, 32 Utterance, 2, 19, 28, 34, 39, 41, 46, 48, 50, 52, 56 Value, 14, 15, 44, 72 73 Ventilation, 65 Verbal communication, 21 Vernacular vocabulary, 69, 103 Viral, 10, 22, 72, 74, 75, 94, 104 Viral dissemination, 98 Viral hyping, 82 Virality, 98 Vocabulary, 45, 50, 69, 86, 103 Vocabulary of mourning, 69

Index

Walter, Tony, 15, 16, 91 Warner, Michael, 81 Watts, Leon, 35, 36 Watzlawick, Paul, 31, 32, 41, 67 Wetherell, Margaret, 27 29 Wharton, Tim, 39, 40

135

Wittgenstein, Ludwig, 21, 37 Writing, 2, 3, 6 8, 11, 12, 25, 30, 32, 35, 41, 44, 46, 50, 51, 57, 58, 68, 73, 92, 102 YouTube, 11, 21