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The emotional geographies of the ‘livingdying’
Emotion, Space and Society 33 (2019) 100624
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Emotion, Space and Society journal homepage: www.elsevier.com/locate/emospa
The emotional geographies of the ‘livingdying’ Barbara Pini , Catherine Dhavernas, Margaret Gibson
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School of Humanities, Languages and Social Sciences, Griffith University, 170 Kessels Road, Nathan, Qld, 4111, Australia
ARTICLE INFO
ABSTRACT
Keywords: Livingdying Death Dying Memoirs Autobiography Emotions
This paper engages with Madge's (2016; 2018) notion of the ‘livingdying’ through an analysis of three recent autobiographies of death and dying. Dying: A Memoir by Australian author, Cory Taylor (2016), In Gratitude by British writer, Jenny Diski (2016), and The Bright Hour by American memoirist, Nina Riggs (2017), provide insight into the sometimes contradictory emotional responses to the different spaces traversed by the ‘livingdying’. We identify how the emotions of fear and anxiety, sadness and grief, anger and frustration, and isolation and loneliness infuse the liminal spaces that the ‘livingdying’ occupy. In doing so we highlight how the normative dualism of ‘the living’ and ‘the dying’ shapes emotional vulnerabilities. Finally, hoping to further advance Madge's (2016; 2018) provocation to acknowledge, account for and honour the intrinsic entanglement of living and dying and life and death, we propose a reframing of her notion of ‘livingdying’ that includes the ‘ordinary’ living, that is, those not dealing with a terminal illness.
1. Introduction This paper contributes to the emerging literature on emotions and geographies in which people are living their dying in a range of spatial contexts and relationships. Our particular focus is the emotional experiences of the dying, explored through an analysis of three recent life/death narratives: Dying: A Memoir by Australian author, Cory Taylor (2016), In Gratitude by British writer, Jenny Diski (2016), and The Bright Hour by American memoirist, Nina Riggs (2017). All three memoirs are written by white, middle-class women in long-term heterosexual relationships, each suffering from different forms of cancer. Cory Taylor's melanoma began in 2005 with a malignant mole behind her right knee. By the time she was 60, ten years later, the cancer had metastasised throughout her body, and she was diagnosed with untreatable melanoma. Soon after, she began her memoir which she wrote in a few weeks. She died at 61, only a few months after the memoir's publication. In a similar way, Jenny Diski died in 2016 at age 69, two years after her diagnosis with inoperable lung cancer, and soon after the publication of her memoir. Diski's memoir deals not only with her dying, but also her traumatic childhood and youth, including her relationship with her adoptive mother, the writer, Doris Lessing. Nina Riggs' (2017: 7) memoir, The Bright Hour, charts the period from the author's initial diagnosis of ‘one small’ cancerous spot on her breast at the age of 37, until her death two years later. The novel progresses through four chapters that represent the spread of the cancer – stages one to four.
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As Maddrell (2016) has pointed out, emotions have not been absent from studies of death, but such studies have largely been understood in normative and linear terms, associated with movement along stages or phases in disciplines embedded in scientific/medical epistemologies. They have been viewed as biological and inherent to the individual. Such a biocentric and typological conceptualisation of emotions as psychological dispositions of subjects is distinct from that proffered in scholarship on geographies of emotions, which has shown that emotions are dynamic, embodied, relational, social, cultural and political (Davidson and Milligan, 2004; Bennett, 2009). This more complex spatial understanding of emotions as having a ‘culture, history, seasonality, psychology, biology, economy’ (Smith et al., 2009: 1) has been demonstrated in the literature on emotions and dying. For example, Randall et al. (2017) have explored the emotional attachment to home as a space for meaningful, personalised and familyoriented end-of-life care. However, they caution against assuming the home to be the best place medically and emotionally for everybody who is dying. Other research has explored the emotional geographies of hospices and aged care settings, focusing on staff who form emotional attachments to long term residents who come to die in their care (Funk et al., 2014). Komaromy's (2009) research has been particularly important in detailing the way aged care facilities in the United Kingdom routinely remove the more imminent dying from the visibility of other residents, which she says reflects the value placed on individualised dying and on the cultural norms of discretion and privacy. These disappearances are managed by a coded language that residents
Corresponding author. E-mail addresses: [email protected] (B. Pini), [email protected] (C. Dhavernas), [email protected] (M. Gibson).
https://doi.org/10.1016/j.emospa.2019.100624 Received 21 March 2019; Received in revised form 19 August 2019; Accepted 7 October 2019 1755-4586/ © 2019 Published by Elsevier Ltd.
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particular places, so autobiographies are inherently spatial. He also views it as a strength that they allow us to map personal and embodied memories, relationships and experiences as directly recounted by the author. At the same time as he champions memoirs as data sources, Gorman-Murray (2007) acknowledges their limitations. He cautions that they are always partial, reminding us that some aspects of a story may be restricted for public consumption. In terms of a sample, the three books we explore are part of a genre of writing about death and dying that has a long history, but that has also ‘proliferated’ in recent years (Cosic, 2017: n. p.). As with other geographers drawing on memoirs, we worked with a small sample to produce an analysis that was in-depth, detailed and intimate. Like Pini et al. (2017), we began with a repeated critical reading of the texts attending to content, form, themes and use of literary devices. We made notes and summaries around our central question of where, and in what ways, emotion and space emerged in the narratives as characteristic responses to the distinct experience of the ‘livingdying’. We shared our findings in a continued process of collective analysis, questioning and refining our ideas in the collaborative manner described by Kingsbury et al. (2012) in their study of autobiographies of medical tourism. As part of the analytical process we also reflected upon our positionalities and our own experiences with death and dying, and the way they may have shaped our reading of the texts. The project emerged as the three of us are undertaking a larger study, training students to assist in writing the biography of long term and palliative care patients, in an effort to normalize death and dying as a part of human existence. To inform this process, we read memoirs of the dying, and soon realised their analytic potential. We recognised that the texts could be read in a range of ways so each of us identified a particular lens to lead a paper. As the first author for this paper, it was therefore Barbara who identified her interest in the emotional experiences of the dying. She is a geographer and has been working in this area of life writing/memoir for the last two years. When the project commenced in June 2018, one of her closest friends was diagnosed with pancreatic cancer after complaining of some minor back and stomach pain. He died on 1 February 2019, just before we submitted the paper for review. Like the memoirists whose work we analyse in this paper, he was also a writer. Over the months of re-reading the texts, Barbara spent precious time with her friend, and inevitably used them to try and understand what living dying was like for him. The memoirs were painful to read in this regard, but she found Madge's (2016; 2018) notion of ‘livingdying’ comforting and affirming. In contrast to Barbara, Catherine comes from a background in French literature and literary theory, and has worked extensively on the limits of representation in relation to collective and subjective experiences of illness, death and trauma (e.g. Dhavernas, 2018; 2019a, 2019b), while Margaret has a long history exploring the experiences of the dying and the bereaved, including most recently, through online spaces (e.g. Gibson, 2008, 2017). Through the analytic process, we identified four dominant emotional experiences of ‘livingdying’ – fear and anxiety, sadness and grief, anger and frustration, and isolation and loneliness, whose distinct natures and singular impacts are determined by each author's individual circumstances, revealed in the subjective and highly personal account of their particular experience of ‘livingdying’.
knowingly decipher. Also significant are McNiven's (2016) interviews with four British women who experienced pregnancy losses as they demonstrate that medical technologies personnel can have a visceral impact on the emotional spaces inhabited by grieving mothers. McNiven's (2016: 243) study is additionally relevant in speaking to the ‘implicit assumptions’ in the literature on geographies of death, that is, assuming we ‘already know who dies (and thus who is bereaved) and what dying entails’. Challenging the dualities between life/death and living/dying is taken further by Madge (2016, 2018). In a powerful and intimate creative bricolage of autobiographical poetry and photographs, she documents her embodied and emotional experience with breast cancer and living on after breast cancer. To convey the complexity of the experience and the permeability of life and death she coins the term, ‘livingdying,’ explaining that the notion is used to ‘capture the fluid, porous and continuing morphing relationship between living and dying’ (Madge, 2016: 247). Madge's (2016; 2018) concept of ‘living/dying’ places the word ‘living’ in front of or before ‘dying’, symbolically ordering and thereby inscribing the positive value and hope generally invested in living, as the first or priority signifier. By removing the separation and spacing inscribed in the conjunction of ‘and’ in living and dying, the corporeal reality, physical and emotional intimacy of living as dying and dying as living is powerfully signified and inscribed. In this paper, we continue with Madge's (2016; 2018) project of unravelling the binaries of the living and the dying, and her work on the emotional intensities and complexities of living with, through, and on, from a life-threatening illness. At the same time, we also expand and elaborate upon her notion of the ‘livingdying,’ to include the ‘ordinary living’ and reposition the experiences of individuals diagnosed with life limiting illnesses as privileged, rather than marginal sources of knowledge. In her work, she has shown that those living with or on from a life-threatening illness are brought closer to the reality of death, a reality with which the daily experience of living becomes indissociably entangled. Because of the omnipresent reminder of death that hangs over the ‘livingdying’, their outlook on the past, present and future, their sense of self, their relationship to others and their general experience of everyday life are radically transformed. As Madge (2016, 2018) and the memoirists we focus on here reveal, such transformations give rise to unfamiliar, heightened emotions that set them apart from the ‘ordinary living’ who, as a result of their not being implicated in dying, are often at a loss to comprehend or appropriately respond to what they are going through. We specifically explore the different spaces traversed by the ‘livingdying’ and the ways in which these spaces are infused with complex emotions. We focus on what we identify to be the most characteristic emotions prompted by the distinct experiences of the ‘livingdying’, namely fear and anxiety, sadness and grief, anger and frustration and isolation and loneliness, all incited by the challenge of navigating a new reality in which living and dying and life and death become intrinsically linked. As a means of accounting for the relationships that intimately tie living and dying together, while further opening the way for change in the way we approach, conceive of and respond to the experiences of those living with a life-limiting illness, we propose to reframe and expand Madge's (2016; 2018) notion of the ‘livingdying’. That is, we include in the ‘livingdying’ that group of people known as the ‘ordinary living,’ so as to reposition the experiences of individuals diagnosed with life-limiting illnesses as privileged, rather than marginal sources of knowledge for both the dying and the living.
3. Fear and anxiety and the ‘livingdying’ In recounting the devastation of the unanticipated death of a child at birth, Maddrell (2016: 168) recalls that ‘geographical metaphors came to the fore,’ as she attempted to ‘navigate this emotional and ontological flux’. At first she individualised her recourse to geography motifs as indicative of her professional training, but after five years of working as a volunteer with a national bereavement support network, she realised that her own experiences had wider purchase. Her observation resonates with the memoirs we analysed, as death is often
2. Methodology Geographers have found autobiographies to be rich and evocative data sources (e.g. Jazeel, 2005; Abblitt, 2008; Pini et al., 2017). Gorman-Murray (2007) provides a convincing rationale for their use in geography, arguing that stories about the self are constituted in 2
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imagined in geographic terms. For Taylor (2016: 27) it is a ‘bitter country’, for Riggs (2017: 86) it is ‘a hostile land,’ and for Diski (2016: 144), much to her disgust given its clichéd status, it is ‘a journey’. The metaphorical language suggests the fears and anxieties the women feel towards the unknown and unfathomable nature of death. They are suddenly forced to confront these deep concerns because of having entered the geographical space of the ‘livingdying’. For the authors, the fear of death is visceral and embodied. Diski's (2016: 143) discloses that ‘the excruciating terror of the fact that I am in the early stages of dying comes regularly and settles on my solar plexus directly beneath my ribcage’. Her anxiety, not only about death, but about her impaired body and its vulnerability manifests in panic attacks that limit her spatial movements within and beyond her home. Taylor (2016: 39) mentions that she has become accustomed to dying, but this was not always the case:
is calm and relaxed about the cancer, telling her patient that there is a strong likelihood that it can be cured. However, later in the text, when the cancer has spread she admits to being worried and advises Riggs to listen carefully to a nurse teaching her breathing exercises, as these are more valuable than anything she could offer as a medical practitioner.This moment of communication reveals the loss at which even those specialized in care find themselves, when having to respond to the reality of their patient coming face to face with mortality. Through such examples, the authors expose gaps in the medical system that actively work to isolate and marginalise the ‘livingdying’. Owing to the healthcare practitioners' incapacity to appropriately hear, speak to, or provide comfort in response to the range of emotions prompted by the intimate reach of death, one has the impression that the living and the ‘livingdying’ belong to distinct and irreconcilable species. Diski's (2016) memoir reinforces the limitations of the places where mainstream medicine can redress fear and anxiety and also heal. Traditional medical interventions typically aggravate embodied pain aggravating fear and anxiety. Diski (2016: 134) documents what she calls the ‘unwanted toxic results of treatment’ including excruciating fatigue which is not eased by sleep, memory loss, fogginess, dullness and incoherence of thought, and clumsiness. She worries about not seeking out more information about her illness, but then ponders whether there is anything to discover, realising that her oncology doctor and nurse who speak in generalities and probabilities have a limited knowledge of the particularities of cancer. As part of her ruminations, she further observes that the main treatment for cancer – chemotherapy – has changed little in decades. Cumulatively, Diski's (2016) portrayal of mainstream medicine differs from the way it is typically characterised as a site of progress, exactitude and healing, and consequently, a space in which to be emotionally reassured. At the same time as the health sector is a source of fear and anxiety, things prove more emotionally complicated and fraught when the authors are removed from it. As the memoirs reveal, the spaces once repellent or threatening are newly experienced as reassuring and safe, again signalling the paradoxical nature of emotions for the ‘livingdying’. Riggs' (2017) muses warily about a future post-chemotherapy when the doctors have set her ‘adrift in the sea of aftertreatment’ (sic). Diski (2016) responds despondently to the news that her treatment has concluded. Reflecting on the reality that she is ‘further along the programme, a step nearer the end,’ she admits to struggling with a host of confusing emotions, while coming to the unsettling realisation that she will miss what has become a place of refuge:
When I was first diagnosed I was terrified. I had no idea that the body could turn against itself and incubate its own enemy. I had never been seriously ill in my life before; now suddenly I was face to face with my own mortality. When the counsellor asks Taylor (2016: 22) if she has any fears she replies, “I'm frightened of dying.” She is told that this is a normal reaction and given advice about relaxation and mindfulness. She finds such advice to be banal and simplistic, and is astounded at the lack of knowledge and expertise about death and dying. What becomes clear from each of the three memoirs under investigation is rather than moving from a place we might call ‘living’ to a place of ‘dying’, the authors instead inhabit a much more ambiguous space of ‘livingdying’ that they had previously never known existed – such as the oncology ward. They experience this environment as an ‘emotionally heightened space’ (Anderson and Smith, 2001), particularly on their first visit when, unprepared for its scale, they come to realise how many other people inhabit the world of the ‘livingdying,’ and are forced to recognise that it is a world to which they now belong. Riggs (2017: 23) references ‘the open sea of people waiting together to take in the poisonous stuff that we hope will make us better’ (emphasis added). Diski (2016) recalls that the scene is so emotionally confronting that everyone she knows who has seen it ‘shakes their head at the memory of it’. Taylor (2016: 9) is equally forthright in remembering the space she entered at her initial appointment: If cancer teaches you anything it is that we are all dying in our droves, all the time. Just go to any oncology department of any major hospital and sit in the packed waiting room. All around you are people dying. See most of them on the street, and you'd never know it, but here they are linked up, waiting for the latest results of their scans, to discover if they've beaten the odds this month.
‘I felt the loss of the unlovely place and the nurses who, however kind they might be, you rationally hoped you wouldn't be seeing again soon […] I have the feeling of being sent away from a place of safety’ (Diski, 2016: 120).
As the three authors demonstrate, to enter the world of the ‘livingdying’ entails passing through previously unknown and unimagined environments where entire groups of strangers, each in their singular way, share in their heightened states of fear and anxiety. By circulating among these marginalised groups, the authors unwittingly discover a sense of belonging in the omnipresent reality of death that, for them, as for those around them, has become integral to the experience of living. The women's fears and anxieties are not necessarily alleviated by their interaction with the health system. They are all fortunate in having ready access to quality healthcare. Taylor (2016) and Diski (2016) benefit from the state sponsored health care of Australia and Britain respectively. Riggs (2017) makes a brief reference to her access to health insurance, but makes no further mention of it in relation to affording her access to high level treatment at no or limited cost. Of the three authors, she expresses the most praise for the health sector as embodied in her oncologist, Dr Cavanaugh, who she labels ‘smart like a switchblade’ (Riggs, 2017: 19). At her first consultation, Dr Cavanaugh
4. Sadness and grief and the ‘livingdying’ In an exploration of emotions in medical tourism via two autobiographies in which American patients and their caregiver companions travel overseas for life-saving surgeries, Kingsbury et al. (2012: 361) argue that the narratives could be defined by their ‘emotional amplification’ and ‘emotional extensivity’. A similar observation could be made of the memoirs we have examined, as the authors struggle to adjust to the enhanced sense of mortality that characterises their daily existence with emotions magnified. While intense fear is time and again triggered anew in the ‘livingdying’, experiences once associated with permanence and continuity become ephemeral and tenuous, with grief taking over any former sense of reassurance in anticipation of the countless losses that are to follow. Taylor (2016: 51 and 39) writes of dying as ‘the hardest thing I have ever done’ and ‘sad beyond belief’. Thinking of her young grandson who is not yet old enough to have a long-term memory of her, induces tears for Diski (2016: 156) who 3
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5. Anger and frustration and the ‘livingdying’
concludes: ‘I've thought and felt it through in every possible way, and I can only make sense of the sadness because it is sad’. Riggs' (2017: 247) describes her sorrow in equally expansive terms:
Alongside sadness and grief, the authors express varying degrees of frustration and anger. There is frustration at the debilitating impact of treatment for which, owing to the divide that separates the living from the ‘livingdying’, medical staff and professionals prove ineffective in providing reassurance or any helpful form of preparation. For Diski (2016), there is frustration and anger at the impact of her treatment which includes the scarring of her lungs and a burnt back and oesophagus. Riggs (2017: 196) describes excruciating back pain which makes it difficult for her to get out of bed. She relies on a walker to move, but hates what it symbolises and the fear its presence elicits in her children. Close to death, Taylor (2016) expresses frustration that one of her remaining pleasures – eating the food prepared for her by her husband, Shin, has gone. The same gap separating the living from the ‘livingdying’ also works to strip the experiences of the ‘livingdying’ of their singularity. With respect to this, of the three narrators Diski (2016: 10) is perhaps the angriest, even expressing exasperation at her own writing project. She questions: ‘A fucking cancer diary? Another fucking cancer diary’. She contemplates how to write her way out of the motifs and tropes that have served to homogenize the genre and banalize the experiences it purports to capture. Along with Riggs (2017), she is frustrated by the military language surrounding cancer which she finds alienating and inappropriate.1 She cautions that this is not a disease she is ‘fighting, losing, winning or bearing’ (Diski, 2016: 10). What the authors invoke in their discussion of cancer clichés is that, as Davidson and Milligan (2004: 526) explain, emotional expression is ‘more or less “governed” by rules’. Overt and covert regulatory norms often surround emotional responses to a cancer diagnosis with a particularly privileged subject position, the ‘heroic’ patient (Searle, 2002). Unfortunately, this is not a script which any of the women want to take up because they find it alienating, reductive and patronizing. Working to dispel such common portrayals which severely diminish their sense of self, as well as public and medical understandings of their needs, it is the more complicated, nuanced, often contradictory and at times absurd, idiosyncratic particularities of their subjective experience of ‘livingdying’ that the authors seek to articulate. In so doing, the hope is to reveal what a generalized societal fear of death has actively worked to silence and hide from the living; to make room for and create meaning out of their marginal experiences and, in doing so, to find a way to come to terms with ‘livingdying’. In Taylor's (2016: 32) words, ‘I am making a shape for my death, so that I, and others, can see it clearly. And I am making dying bearable for myself’. The frustration articulated by the authors around the framing of emotions and cancer in the popular imagination, is indicative of the loss of agency that comes with their diagnoses. They are no longer the subjects of their lives. They often feel out of control and disenfranchised in encounters with medical professionals. As explained, Riggs (2017) is affirmed by her oncologist Dr Cavanaugh, but other doctors she meets are flippant and self-congratulatory. Taylor (2016: 14) voices her frustration at her objectification by medical specialists:
Sometimes I'm sad about everything: the way my grilled cheese sandwich tastes, how nice my socks feel, a song John is playing in the kitchen. One time he puts on this goofy Loudon Wainwright song that was on a mix tape I used to listen to during my commute from the boys' school in Bethesda back into the District when we were newly married and everything was about to begin and it makes me burst into tears about the shortness of everything. What is striking about Riggs' (2017) reflections is how the normally insignificant practices in an everyday space, such as the home, take on a different emotional register with the shift in perspective and temporalities that come with ‘livingdying’. Over the course of the memoir, she shops for a new couch, socialises with friends and family, enjoys walks, tends to her garden, sends her boys to school and camp, gets a new dog and goes to Disneyland. It is the threat of losing the ordinary and mundane which brings her sorrow. Thus, she reacts negatively to the suggestion from a doctor who recommends she make a bucket list, as her goals cannot be so easily contained. She says: I want all the things to do with living—and I want them to keep feeling messy and confusing and even sometimes boring. The carpool line and the backpacks and light that fills the room in the building where I wait while the kids take piano lessons (Riggs, 2017: 210). What the authors describe is named by Kellehear (2014: 170) as a ‘social death’, the death that precedes a physical one and occurs as ‘parts of the self become less sharable and visible the deeper the physical, emotional and spiritual processes of dying become’. There is an emotional geography to a social death in that previously enjoyed sociospatial practices can no longer be undertaken, causing sadness and grief. Taylor (2016) provides an evocative account of this process in a description of a park in which she used to take daily walks with her husband. She is too physically fragile to do this anymore, just as she is unable to bike-ride or drive or swim. As she identifies what she has relinquished, she states: And so it goes the endless list of pleasures I can no longer enjoy. Pointless to miss them of course, as that won't bring them back, but so much sweetness is bound to leave a terrible void when it's gone (Taylor, 2016: 24). The grief of the authors is further entwined with other losses experienced in life, particularly in relation to their mothers. Taylor (2016: 133), for example, writes about missing her mother in the face of death, seeking her guidance and support as she has to make a decision about surgery or radiation. At the start of her memoir, we learn that Riggs' (2017: 141) mother has a terminal diagnosis as a result of multiple myeloma, thus offering her daughter ‘a morbid test drive’. As is typically the case today, Riggs' (2017) mother dies slowly with numerous medical interventions both extending her life and causing her more illhealth:
I would come out of consultations feeling as if my humanity had been diminished by the encounter, as if I'd been reduced to my disease alone, as if everything else that defines me had fallen away.
Multiple hospitalizations, endless courses of steroids, blood and platelet transfusions, five bone marrow biopsies, daily debilitating nausea and diarrhea, three failed clinical trials. She's been keeping track: five days of not feeling well to two where’ she's basically okay (Riggs, 2017: 79).
In Diski's (2016) memoir, these issues come to the fore as she recollects twenty daily experiences with a machine she learns is called an Elekta Linear Accelerator and its young radiography operators. She describes the instrument, with its three large plastic arms that rotate
Following her mother's death, Riggs (2017) is pained as she witnesses life inevitability moving on, and from her distinct position of ‘livingdying’, to her own future absence. She details the first meeting of the book club of which mother and daughter were part, expressing the ‘shock’ at the ‘ease with which we gather our chairs a little closer, adjust our banter for five instead of six’ (Riggs, 2017: 238).
1 Susan Sontag in Illness as a Metaphor (1978) and later AIDS and its Metaphors (1989) critically brought to academic and public attention the seepage of the military-industrial complex in disease discourses in which there is a moralistic heroic code of going into battle to defeat the disease and by extension, death.
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across the body, sometimes clockwise, and other times anti-clockwise, and its lights blinking to no discernible pattern. She is rarely even greeted on arrival by the radiographers who are fixated on the machine. The only conversation is her response to their questions as to her date of birth and her address to verify she is the right person for treatment. Once she is in place on the machine bed, she is reduced to being only parts of flesh to be arranged appropriately to match the numerical coordinates the radiographers call out to each other across her body. She recalls that the room was cold, as were their fingers as they prodded and pushed her into place, and that the bright ceiling lights hurt her eyes. No one explains to her what is happening, and before she can ask the radiographers, they are quarantined in the ‘safety room’ out of reach, not only of the potentially damaging radiation, but also of patient confusion, anxiety and fear. Diski (2016) recognises that radiography may be an occupation that is necessarily not steeped in emotion, as the technicians are dealing with complex measurements that need to be exactly right for each of the numerous patients that come for short periods of time day after day, but she is equally critical of the failure of these health professionals to engage with her in a humane way. She writes of being ‘grumpy and cross,’ that she had been made to feel ‘invisible,’ and compares this to her experience in the chemotherapy ward where, despite treating multiple patients each day, the oncology nurses were always caring and compassionate (Diski, 2016: 128). In comparison to Diski's (2016) experience, Taylor (2016: 49) admits to being only ‘occasionally angry’. While anger at her diagnosis is muted, she expresses considerable frustration at the failure of the Australian government to legislate for euthanasia. Thus, her anger is reserved for an issue that has collective value rather than one that concerns her as an individual. As she reveals in the opening sentence of the memoir, she bought a euthanasia drug online from China a few years before beginning the memoir. She hesitates over this course of action, however, as she worries about causing distress to family and friends, and having her death recorded as a suicide, ‘with everything that the term implies these days: mental angst, hopelessness, weakness, the lingering whiff of criminality’ (Taylor, 2016: 7). Despite her reservations, she purchases the drug referencing it again in the closing pages of her memoir as critically important to her sense of agency.
degrees distant’. She observes that she is part of a post-modern society where everyday death is rarely visible. According to Taylor (2016: 9) this has made the dying ‘lonelier now than they've ever been’.2 Incredibly, apart from the palliative care specialists, no other doctor Taylor (2016) consulted over the course of her many years of treatment had ever talked to her about death. Perhaps, she says, this silence is because death is viewed as a failure by doctors – a belief she wonders may have ‘seeped out into the wordier world in the form of an aversion to the subject of death per se’ (Taylor, 2016: 8). These reflections regarding our aversion to discuss death speak to Ahmed's (2004) contention that emotions circulate between bodies and become attached or ‘stick’ to certain bodies. An array of negative emotions attach themselves to the ‘livingdying’ body, including, as Taylor (2016) notes, the emotion of shame. She observes that it is common for people to react to the ‘livingdying’ by wanting to share a personal story of death that comes with a ‘vague sense that it is shameful, that the whole sorry business is somehow their fault’ (Taylor, 2016: 30). Again, as the narrators discover that they are no longer seen as part of the living, they simultaneously find themselves inhabiting and embodying a separate space. Within this space are specific places designated for the ‘livingdying’ such as the hospice which, as Riggs (2017: 105) remarks, is a word that ‘when you say it people's faces fall’. Another specific place in which the ‘livingdying’ is authorised is the chemotherapy/radiation ward of the hospital. As Diski (2016: 119) recognises, against their will and by virtue of the segregated spaces in which they are forced to circulate, the ‘livingdying’ suddenly acquire membership into a dreaded and unwanted community: ‘We hardly spoke to one another, but only nodded our heads, because people in various stages of cancer treatment aren't a group anyone wants to be a part of’. However, in the ward she discovers a certain comfort in the complex and ambivalent sense of belonging and community. As she explains: I discovered that there was something about the entire, dreaded, much mythologised and allegorised cancer ward and its inhabitants, perhaps the pathos, that attaches you to it, however delicate or elastic the connecting fibre (Diski, 2016:119). The contradictory emotions elicited by the ward is also illuminated via Riggs' (2017: 121) description of it as affording her a ‘dark harmony’ in that she is around other bodies that are like hers. She writes:
6. Isolation and loneliness
In treatment, the wrongness I feel in my life is a wrongness reflected in my body – my steroid puffy face, my bald head, my lopsided chest. And spending my days at the cancer centre: It's something I'm part of. I make sense there somehow. A lot more sense than I make at the gym or the elementary school or the grocery store or work meetings – or all the other places I've sat outside of for too long in my car taking deep breaths as I attempt to return to civilian life.
Perhaps the most potent of emotions the narrators experience is that of loneliness, at times a consequence of literally being and feeling alone and isolated and, at others, prompted by the paradoxically disconcerting, and yet sometimes also reassuring, sense of belonging that comes from navigating the marginal, foreign and subversive spaces commonly shared by the ‘livingdying’. In both cases, the greater proximity to death associated with the ‘livingdying’ appears to be the culprit, and consistently works to set them apart from the living. As the authors point out, life and death are always in close proximity, but this is seldom acknowledged. Riggs (2017: 197) comments:
In this powerful quotation Riggs (2017) communicates the extraordinary difficulty of ‘livingdying’. Aware her ‘livingdying’ body is inscribed with negative social and cultural messages, she finds the everyday spaces of the living difficult to negotiate. Her reflections echo Wilton's (1998: 174 and 178) research into opposition to an AIDS hospice in a Los Angeles suburb. Neighbours' antagonisms to the project were embedded in a construction of the residents as ‘abject’ or ‘other’ in that they symbolised vulnerability, impairment and mortality. Wilton (1998) argued that their proximity was a source of anxiety because they challenged the dualisms of health and illness and life and death. Because experiences of illness and/or dying are typically shamefully hidden out of sight the narrators have nowhere to turn, and are left to grapple with the complicated emotions that arise from them on their
Death sits near each one of us at every turn. Sometimes we are too aware, but mostly we push it away. Sometimes it looks exactly like life. Orange. The colours of the sky are the same when the sun rises as when it disappears. The lack of recognition that we are all of us, all the time, dying means that once the narrators are diagnosed as ‘dying,’ the living regard them as distinct and separate, thereby forcing them to navigate, inhabit and embody a separate space. Notably, over the course of their lives up to their diagnoses, none of the women had seen anyone die. This is indicative of the sequestration of death in contemporary society and intimately entwined with their sense of isolation as they live/die. Taylor (2016) divulges that until her mother became sick, she had never seen anyone gravely ill. Diski (2016: 17) is also candid about her inexperience with death describing it as ‘minimal and to varying
2 This experience of the loneliness of dying was significantly addressed by Norbert Elias in his book The Loneliness of Dying (2001) which is partly a sociological response to existentialist philosophy and especially the thought of Martin Heidegger.
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own. With no place amongst the living to talk about death, Taylor (2016) seeks out an alternative venue for information, affirmation and community. She finds this at an Exit Café where the ‘livingdying’ gather informally to discuss death, including options for euthanasia. She describes travelling to a suburban café to meet with six regular attendees who offer her friendship, camaraderie and support. The temporary space created to facilitate talk of death is vastly different from the sterile and objectifying spaces of the hospital treatment rooms.
with are all highly circumscribed in that they are all by white, middleclass, heterosexual women living in the industrialised west, and dealing with cancer with access to publicly or privately funded health care. This specificity is typical of the genre of dying narratives (Gygaz, 2013), but is clearly at odds with the diversity of experiences of living and dying, particularly in geographies in which bare lives of abject poverty, disease and marginality are a prevailing reality (Kellehear, 2007: 243–250). We are aware our analysis risks reproducing these very particular classed, racialized and heterosexualised accounts as normative by default. Thus, while memoirs are incredibly rich data sources for geographers of death and dying, there is a need to move beyond the formal published written text to engage with some of the more innovative ways in which the living and the dying are today narrating their stories such as on blogs and vlogs and on global social media sites such as YouTube (e.g. Gibson, 2015; Andersson, 2017). These forms of storytelling about dying are representative of the growing and dynamic nature of life writing in the 21st century that is bringing a more heterogeneous perspective to the subject. Overall, the three narratives examined are of enormous pedagogic value in bringing a spatial sensibility to the complex and sometimes paradoxical emotions experienced by the ‘livingdying’. They demonstrate, as Madge (2016, 2018) argues, that the normative dichotomy of ‘the living’ and ‘the dying’ is directly implicated in the emotional vulnerabilities of the dying. The dying are marginalised, objectified and silenced, thereby eliciting and/or aggravating understandable fear and anxiety, sadness and grief, anger, and frustration, and isolation and loneliness. Given that the emotional lives of the ‘livingdying’ are so negatively shaped by the separation of the living and the dying we concur with Madge (2018: 257) that there is a need for an ‘altered language’ and an ‘holistic theorisation’ in the literature on geographies of death and dying that recognises the experiences of living and dying are not mutually exclusive, but deeply and inevitably entwined. As Gibson (2001: 313) asserts: ‘one lives by dying or one lives in dying or yet again in dying one lives. One is already the other (they are temporally and spatially the same) until the absolute difference of death itself.’ Thus, we argue that our generalized and active avoidance of death requires a radical shift in our cultural approach to and understanding of death and dying, a shift that can bridge the gap that currently sets apart realities and concerns that belong together in one space, the world of the ‘livingdying’.
To find companions who share your desire to know more, to take the initiative, and to laugh in the face of our shared mortality, is a gift. How different from the experience of the hospital waiting room, where you sit in a glum herd with the overhead televisions blaring, guarding your dirty little secret until such time your name is called (Taylor, 2016: 13). Riggs (2017) finds an equivalent emboldening outlet to redress her isolation in social media interactions with a girlfriend who also has cancer. They text each other with ideas for cancer patient thank-you cards which are, at times, ruthlessly cynical and often full of humour. Perhaps the most powerful way the women resist and bridge the isolation and loneliness of ‘livingdying’ is by writing. Taylor (2016: 120) states matter-of-factly ‘I still write so as not to feel alone in the world’. They are gratified by the permanence of their writing and its ongoing presence in a world from which they are soon to be absent. 7. Conclusion Collectively, the three memoirs we have examined provide insight into the varied and dynamic emotional geographies experienced by those Madge (2016, 2018) refers to as the ‘livingdying’. Particularly evident are feelings of fear and anxiety, sadness and grief, anger and frustration and isolation and loneliness. Fear and anxiety emerge as death is unknown and unknowable. The authors have few if any reference points for death and dying. Their fears and anxieties are magnified as the narrators enter the liminal space of the ‘livingdying’ where they witness a world that had previously been hidden to them, and which they had not contemplated existed. Key places in this new world are chemotherapy wards and radiography treatment rooms. Unsurprisingly, there is enormous sadness and grief in ‘livingdying’. The ‘livingdying’ grieve in anticipation of the future loss of relationships with partners, children and grandchildren. Sadness and grief are ongoing and can be triggered in unexpected places and via unexpected practices as the ‘livingdying’ become less able to engage in routine practices that once brought them pleasure. Alongside sadness and grief, there is anger and frustration, but these latter emotions are not necessarily directed at dying itself. There is anger at not having access to euthanasia, at instrumental and dismissive treatment by medical professionals and at the platitudes that are often directed at cancer patients. Anger and frustration also emanate from the sequestration of death, and the unwitting discovery of a wholly unknown land occupied by the ‘livingdying’. The inhabitants traverse this land as they no longer belong to or are welcome in the world of the living. They are excluded by a culture which denies death and others the frail, impaired and dying body. The anger that fills the narrators is thus largely directed at societal attitudes and norms rather than their individual diagnosis. The most recurring and keenly felt of emotions in the books is a sense of isolation and loneliness. In the everyday world of the living such as schools, hairdressers, shops and cafes, they often feel very alone. There is, consequently, solace for the ‘livingdying’ in spaces such as the oncology ward where they find a sense of community and dying amongst others like themselves. There is also community for the ‘livingdying’ in new spaces they create to voice their experience, such as on social media or at exit cafes. One of the key limitations of our analysis is that the texts we worked
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methodologies, cancerous spaces and a politics of compassion. Soc. Cult. Geogr. 17 (2), 207–232. https://doi.org/10.1080/14649365.2014.990498. Madge, C., 2018. Creative geographies and living on from breast cancer: the enlivening potential of autobiographical bricolage for an aesthetics of precarity. Trans. Inst. Br. Geogr. 43 (2), 245–261. https://doi.org/10.1111/tran.12215. McNiven, A., 2016. Geographies of dying and death in relation to pregnancy losses: ultrasonography experiences. Soc. Cult. Geogr. 17 (2), 233–246. https://doi.org/10. 1080/14649365.2015.1033448. Pini, B., Keys, W., Marshall, E., 2017. Queering rurality: reading the miseducation of cameron post geographically. Child Geogr. 15 (3), 362–373. https://doi.org/10. 1080/14733285.2016.1252830. Randall, D., Rosenberg, J.P., Reimer, S., 2017. Solid and liquid modernity: a comparison of the social geography of places to die in the UK and Australia. Death Stud. 41 (2), 103–111. https://doi.org/10.1080/07481187.2016.1225858. Riggs, N., 2017. The Bright Hour. Simon and Schuster, New York. Seale, C., 2002. Cancer heroics a study of news reports with particular reference to gender. Sociology 36 (1), 107–126. https://doi.org/10.1177/ 0038038502036001006. Smith, M., Davidson, J., Cameron, L., Bondi, L., 2009. Introduction: geography and emotion: emerging constellations. In: Smith, M., Davidson, J., Cameron, L., Bondi, L. (Eds.), Emotion, Place and Culture. Ashgate, Aldershot, pp. 1–20. Sontag, S., 1978. Illness as Metaphor. Farrar, Straus and Giroux, New York. Sontag, S., 1989. AIDS and its Metaphors. Farrar, Straus and Giroux, New York. Taylor, C., 2016. Dying. A memoir, Melbourne, Text. Wilton, R.D., 1998. The constitution of difference: space and psyche in landscapes of exclusion. Geoforum 29 (2), 173–185. https://doi.org/10.1016/S0016-7185(98) 00005-0.
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Emotion, Space and Society journal homepage: www.elsevier.com/locate/emospa
The emotional geographies of the ‘livingdying’ Barbara Pini , Catherine Dhavernas, Margaret Gibson
T
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School of Humanities, Languages and Social Sciences, Griffith University, 170 Kessels Road, Nathan, Qld, 4111, Australia
ARTICLE INFO
ABSTRACT
Keywords: Livingdying Death Dying Memoirs Autobiography Emotions
This paper engages with Madge's (2016; 2018) notion of the ‘livingdying’ through an analysis of three recent autobiographies of death and dying. Dying: A Memoir by Australian author, Cory Taylor (2016), In Gratitude by British writer, Jenny Diski (2016), and The Bright Hour by American memoirist, Nina Riggs (2017), provide insight into the sometimes contradictory emotional responses to the different spaces traversed by the ‘livingdying’. We identify how the emotions of fear and anxiety, sadness and grief, anger and frustration, and isolation and loneliness infuse the liminal spaces that the ‘livingdying’ occupy. In doing so we highlight how the normative dualism of ‘the living’ and ‘the dying’ shapes emotional vulnerabilities. Finally, hoping to further advance Madge's (2016; 2018) provocation to acknowledge, account for and honour the intrinsic entanglement of living and dying and life and death, we propose a reframing of her notion of ‘livingdying’ that includes the ‘ordinary’ living, that is, those not dealing with a terminal illness.
1. Introduction This paper contributes to the emerging literature on emotions and geographies in which people are living their dying in a range of spatial contexts and relationships. Our particular focus is the emotional experiences of the dying, explored through an analysis of three recent life/death narratives: Dying: A Memoir by Australian author, Cory Taylor (2016), In Gratitude by British writer, Jenny Diski (2016), and The Bright Hour by American memoirist, Nina Riggs (2017). All three memoirs are written by white, middle-class women in long-term heterosexual relationships, each suffering from different forms of cancer. Cory Taylor's melanoma began in 2005 with a malignant mole behind her right knee. By the time she was 60, ten years later, the cancer had metastasised throughout her body, and she was diagnosed with untreatable melanoma. Soon after, she began her memoir which she wrote in a few weeks. She died at 61, only a few months after the memoir's publication. In a similar way, Jenny Diski died in 2016 at age 69, two years after her diagnosis with inoperable lung cancer, and soon after the publication of her memoir. Diski's memoir deals not only with her dying, but also her traumatic childhood and youth, including her relationship with her adoptive mother, the writer, Doris Lessing. Nina Riggs' (2017: 7) memoir, The Bright Hour, charts the period from the author's initial diagnosis of ‘one small’ cancerous spot on her breast at the age of 37, until her death two years later. The novel progresses through four chapters that represent the spread of the cancer – stages one to four.
∗
As Maddrell (2016) has pointed out, emotions have not been absent from studies of death, but such studies have largely been understood in normative and linear terms, associated with movement along stages or phases in disciplines embedded in scientific/medical epistemologies. They have been viewed as biological and inherent to the individual. Such a biocentric and typological conceptualisation of emotions as psychological dispositions of subjects is distinct from that proffered in scholarship on geographies of emotions, which has shown that emotions are dynamic, embodied, relational, social, cultural and political (Davidson and Milligan, 2004; Bennett, 2009). This more complex spatial understanding of emotions as having a ‘culture, history, seasonality, psychology, biology, economy’ (Smith et al., 2009: 1) has been demonstrated in the literature on emotions and dying. For example, Randall et al. (2017) have explored the emotional attachment to home as a space for meaningful, personalised and familyoriented end-of-life care. However, they caution against assuming the home to be the best place medically and emotionally for everybody who is dying. Other research has explored the emotional geographies of hospices and aged care settings, focusing on staff who form emotional attachments to long term residents who come to die in their care (Funk et al., 2014). Komaromy's (2009) research has been particularly important in detailing the way aged care facilities in the United Kingdom routinely remove the more imminent dying from the visibility of other residents, which she says reflects the value placed on individualised dying and on the cultural norms of discretion and privacy. These disappearances are managed by a coded language that residents
Corresponding author. E-mail addresses: [email protected] (B. Pini), [email protected] (C. Dhavernas), [email protected] (M. Gibson).
https://doi.org/10.1016/j.emospa.2019.100624 Received 21 March 2019; Received in revised form 19 August 2019; Accepted 7 October 2019 1755-4586/ © 2019 Published by Elsevier Ltd.
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particular places, so autobiographies are inherently spatial. He also views it as a strength that they allow us to map personal and embodied memories, relationships and experiences as directly recounted by the author. At the same time as he champions memoirs as data sources, Gorman-Murray (2007) acknowledges their limitations. He cautions that they are always partial, reminding us that some aspects of a story may be restricted for public consumption. In terms of a sample, the three books we explore are part of a genre of writing about death and dying that has a long history, but that has also ‘proliferated’ in recent years (Cosic, 2017: n. p.). As with other geographers drawing on memoirs, we worked with a small sample to produce an analysis that was in-depth, detailed and intimate. Like Pini et al. (2017), we began with a repeated critical reading of the texts attending to content, form, themes and use of literary devices. We made notes and summaries around our central question of where, and in what ways, emotion and space emerged in the narratives as characteristic responses to the distinct experience of the ‘livingdying’. We shared our findings in a continued process of collective analysis, questioning and refining our ideas in the collaborative manner described by Kingsbury et al. (2012) in their study of autobiographies of medical tourism. As part of the analytical process we also reflected upon our positionalities and our own experiences with death and dying, and the way they may have shaped our reading of the texts. The project emerged as the three of us are undertaking a larger study, training students to assist in writing the biography of long term and palliative care patients, in an effort to normalize death and dying as a part of human existence. To inform this process, we read memoirs of the dying, and soon realised their analytic potential. We recognised that the texts could be read in a range of ways so each of us identified a particular lens to lead a paper. As the first author for this paper, it was therefore Barbara who identified her interest in the emotional experiences of the dying. She is a geographer and has been working in this area of life writing/memoir for the last two years. When the project commenced in June 2018, one of her closest friends was diagnosed with pancreatic cancer after complaining of some minor back and stomach pain. He died on 1 February 2019, just before we submitted the paper for review. Like the memoirists whose work we analyse in this paper, he was also a writer. Over the months of re-reading the texts, Barbara spent precious time with her friend, and inevitably used them to try and understand what living dying was like for him. The memoirs were painful to read in this regard, but she found Madge's (2016; 2018) notion of ‘livingdying’ comforting and affirming. In contrast to Barbara, Catherine comes from a background in French literature and literary theory, and has worked extensively on the limits of representation in relation to collective and subjective experiences of illness, death and trauma (e.g. Dhavernas, 2018; 2019a, 2019b), while Margaret has a long history exploring the experiences of the dying and the bereaved, including most recently, through online spaces (e.g. Gibson, 2008, 2017). Through the analytic process, we identified four dominant emotional experiences of ‘livingdying’ – fear and anxiety, sadness and grief, anger and frustration, and isolation and loneliness, whose distinct natures and singular impacts are determined by each author's individual circumstances, revealed in the subjective and highly personal account of their particular experience of ‘livingdying’.
knowingly decipher. Also significant are McNiven's (2016) interviews with four British women who experienced pregnancy losses as they demonstrate that medical technologies personnel can have a visceral impact on the emotional spaces inhabited by grieving mothers. McNiven's (2016: 243) study is additionally relevant in speaking to the ‘implicit assumptions’ in the literature on geographies of death, that is, assuming we ‘already know who dies (and thus who is bereaved) and what dying entails’. Challenging the dualities between life/death and living/dying is taken further by Madge (2016, 2018). In a powerful and intimate creative bricolage of autobiographical poetry and photographs, she documents her embodied and emotional experience with breast cancer and living on after breast cancer. To convey the complexity of the experience and the permeability of life and death she coins the term, ‘livingdying,’ explaining that the notion is used to ‘capture the fluid, porous and continuing morphing relationship between living and dying’ (Madge, 2016: 247). Madge's (2016; 2018) concept of ‘living/dying’ places the word ‘living’ in front of or before ‘dying’, symbolically ordering and thereby inscribing the positive value and hope generally invested in living, as the first or priority signifier. By removing the separation and spacing inscribed in the conjunction of ‘and’ in living and dying, the corporeal reality, physical and emotional intimacy of living as dying and dying as living is powerfully signified and inscribed. In this paper, we continue with Madge's (2016; 2018) project of unravelling the binaries of the living and the dying, and her work on the emotional intensities and complexities of living with, through, and on, from a life-threatening illness. At the same time, we also expand and elaborate upon her notion of the ‘livingdying,’ to include the ‘ordinary living’ and reposition the experiences of individuals diagnosed with life limiting illnesses as privileged, rather than marginal sources of knowledge. In her work, she has shown that those living with or on from a life-threatening illness are brought closer to the reality of death, a reality with which the daily experience of living becomes indissociably entangled. Because of the omnipresent reminder of death that hangs over the ‘livingdying’, their outlook on the past, present and future, their sense of self, their relationship to others and their general experience of everyday life are radically transformed. As Madge (2016, 2018) and the memoirists we focus on here reveal, such transformations give rise to unfamiliar, heightened emotions that set them apart from the ‘ordinary living’ who, as a result of their not being implicated in dying, are often at a loss to comprehend or appropriately respond to what they are going through. We specifically explore the different spaces traversed by the ‘livingdying’ and the ways in which these spaces are infused with complex emotions. We focus on what we identify to be the most characteristic emotions prompted by the distinct experiences of the ‘livingdying’, namely fear and anxiety, sadness and grief, anger and frustration and isolation and loneliness, all incited by the challenge of navigating a new reality in which living and dying and life and death become intrinsically linked. As a means of accounting for the relationships that intimately tie living and dying together, while further opening the way for change in the way we approach, conceive of and respond to the experiences of those living with a life-limiting illness, we propose to reframe and expand Madge's (2016; 2018) notion of the ‘livingdying’. That is, we include in the ‘livingdying’ that group of people known as the ‘ordinary living,’ so as to reposition the experiences of individuals diagnosed with life-limiting illnesses as privileged, rather than marginal sources of knowledge for both the dying and the living.
3. Fear and anxiety and the ‘livingdying’ In recounting the devastation of the unanticipated death of a child at birth, Maddrell (2016: 168) recalls that ‘geographical metaphors came to the fore,’ as she attempted to ‘navigate this emotional and ontological flux’. At first she individualised her recourse to geography motifs as indicative of her professional training, but after five years of working as a volunteer with a national bereavement support network, she realised that her own experiences had wider purchase. Her observation resonates with the memoirs we analysed, as death is often
2. Methodology Geographers have found autobiographies to be rich and evocative data sources (e.g. Jazeel, 2005; Abblitt, 2008; Pini et al., 2017). Gorman-Murray (2007) provides a convincing rationale for their use in geography, arguing that stories about the self are constituted in 2
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imagined in geographic terms. For Taylor (2016: 27) it is a ‘bitter country’, for Riggs (2017: 86) it is ‘a hostile land,’ and for Diski (2016: 144), much to her disgust given its clichéd status, it is ‘a journey’. The metaphorical language suggests the fears and anxieties the women feel towards the unknown and unfathomable nature of death. They are suddenly forced to confront these deep concerns because of having entered the geographical space of the ‘livingdying’. For the authors, the fear of death is visceral and embodied. Diski's (2016: 143) discloses that ‘the excruciating terror of the fact that I am in the early stages of dying comes regularly and settles on my solar plexus directly beneath my ribcage’. Her anxiety, not only about death, but about her impaired body and its vulnerability manifests in panic attacks that limit her spatial movements within and beyond her home. Taylor (2016: 39) mentions that she has become accustomed to dying, but this was not always the case:
is calm and relaxed about the cancer, telling her patient that there is a strong likelihood that it can be cured. However, later in the text, when the cancer has spread she admits to being worried and advises Riggs to listen carefully to a nurse teaching her breathing exercises, as these are more valuable than anything she could offer as a medical practitioner.This moment of communication reveals the loss at which even those specialized in care find themselves, when having to respond to the reality of their patient coming face to face with mortality. Through such examples, the authors expose gaps in the medical system that actively work to isolate and marginalise the ‘livingdying’. Owing to the healthcare practitioners' incapacity to appropriately hear, speak to, or provide comfort in response to the range of emotions prompted by the intimate reach of death, one has the impression that the living and the ‘livingdying’ belong to distinct and irreconcilable species. Diski's (2016) memoir reinforces the limitations of the places where mainstream medicine can redress fear and anxiety and also heal. Traditional medical interventions typically aggravate embodied pain aggravating fear and anxiety. Diski (2016: 134) documents what she calls the ‘unwanted toxic results of treatment’ including excruciating fatigue which is not eased by sleep, memory loss, fogginess, dullness and incoherence of thought, and clumsiness. She worries about not seeking out more information about her illness, but then ponders whether there is anything to discover, realising that her oncology doctor and nurse who speak in generalities and probabilities have a limited knowledge of the particularities of cancer. As part of her ruminations, she further observes that the main treatment for cancer – chemotherapy – has changed little in decades. Cumulatively, Diski's (2016) portrayal of mainstream medicine differs from the way it is typically characterised as a site of progress, exactitude and healing, and consequently, a space in which to be emotionally reassured. At the same time as the health sector is a source of fear and anxiety, things prove more emotionally complicated and fraught when the authors are removed from it. As the memoirs reveal, the spaces once repellent or threatening are newly experienced as reassuring and safe, again signalling the paradoxical nature of emotions for the ‘livingdying’. Riggs' (2017) muses warily about a future post-chemotherapy when the doctors have set her ‘adrift in the sea of aftertreatment’ (sic). Diski (2016) responds despondently to the news that her treatment has concluded. Reflecting on the reality that she is ‘further along the programme, a step nearer the end,’ she admits to struggling with a host of confusing emotions, while coming to the unsettling realisation that she will miss what has become a place of refuge:
When I was first diagnosed I was terrified. I had no idea that the body could turn against itself and incubate its own enemy. I had never been seriously ill in my life before; now suddenly I was face to face with my own mortality. When the counsellor asks Taylor (2016: 22) if she has any fears she replies, “I'm frightened of dying.” She is told that this is a normal reaction and given advice about relaxation and mindfulness. She finds such advice to be banal and simplistic, and is astounded at the lack of knowledge and expertise about death and dying. What becomes clear from each of the three memoirs under investigation is rather than moving from a place we might call ‘living’ to a place of ‘dying’, the authors instead inhabit a much more ambiguous space of ‘livingdying’ that they had previously never known existed – such as the oncology ward. They experience this environment as an ‘emotionally heightened space’ (Anderson and Smith, 2001), particularly on their first visit when, unprepared for its scale, they come to realise how many other people inhabit the world of the ‘livingdying,’ and are forced to recognise that it is a world to which they now belong. Riggs (2017: 23) references ‘the open sea of people waiting together to take in the poisonous stuff that we hope will make us better’ (emphasis added). Diski (2016) recalls that the scene is so emotionally confronting that everyone she knows who has seen it ‘shakes their head at the memory of it’. Taylor (2016: 9) is equally forthright in remembering the space she entered at her initial appointment: If cancer teaches you anything it is that we are all dying in our droves, all the time. Just go to any oncology department of any major hospital and sit in the packed waiting room. All around you are people dying. See most of them on the street, and you'd never know it, but here they are linked up, waiting for the latest results of their scans, to discover if they've beaten the odds this month.
‘I felt the loss of the unlovely place and the nurses who, however kind they might be, you rationally hoped you wouldn't be seeing again soon […] I have the feeling of being sent away from a place of safety’ (Diski, 2016: 120).
As the three authors demonstrate, to enter the world of the ‘livingdying’ entails passing through previously unknown and unimagined environments where entire groups of strangers, each in their singular way, share in their heightened states of fear and anxiety. By circulating among these marginalised groups, the authors unwittingly discover a sense of belonging in the omnipresent reality of death that, for them, as for those around them, has become integral to the experience of living. The women's fears and anxieties are not necessarily alleviated by their interaction with the health system. They are all fortunate in having ready access to quality healthcare. Taylor (2016) and Diski (2016) benefit from the state sponsored health care of Australia and Britain respectively. Riggs (2017) makes a brief reference to her access to health insurance, but makes no further mention of it in relation to affording her access to high level treatment at no or limited cost. Of the three authors, she expresses the most praise for the health sector as embodied in her oncologist, Dr Cavanaugh, who she labels ‘smart like a switchblade’ (Riggs, 2017: 19). At her first consultation, Dr Cavanaugh
4. Sadness and grief and the ‘livingdying’ In an exploration of emotions in medical tourism via two autobiographies in which American patients and their caregiver companions travel overseas for life-saving surgeries, Kingsbury et al. (2012: 361) argue that the narratives could be defined by their ‘emotional amplification’ and ‘emotional extensivity’. A similar observation could be made of the memoirs we have examined, as the authors struggle to adjust to the enhanced sense of mortality that characterises their daily existence with emotions magnified. While intense fear is time and again triggered anew in the ‘livingdying’, experiences once associated with permanence and continuity become ephemeral and tenuous, with grief taking over any former sense of reassurance in anticipation of the countless losses that are to follow. Taylor (2016: 51 and 39) writes of dying as ‘the hardest thing I have ever done’ and ‘sad beyond belief’. Thinking of her young grandson who is not yet old enough to have a long-term memory of her, induces tears for Diski (2016: 156) who 3
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5. Anger and frustration and the ‘livingdying’
concludes: ‘I've thought and felt it through in every possible way, and I can only make sense of the sadness because it is sad’. Riggs' (2017: 247) describes her sorrow in equally expansive terms:
Alongside sadness and grief, the authors express varying degrees of frustration and anger. There is frustration at the debilitating impact of treatment for which, owing to the divide that separates the living from the ‘livingdying’, medical staff and professionals prove ineffective in providing reassurance or any helpful form of preparation. For Diski (2016), there is frustration and anger at the impact of her treatment which includes the scarring of her lungs and a burnt back and oesophagus. Riggs (2017: 196) describes excruciating back pain which makes it difficult for her to get out of bed. She relies on a walker to move, but hates what it symbolises and the fear its presence elicits in her children. Close to death, Taylor (2016) expresses frustration that one of her remaining pleasures – eating the food prepared for her by her husband, Shin, has gone. The same gap separating the living from the ‘livingdying’ also works to strip the experiences of the ‘livingdying’ of their singularity. With respect to this, of the three narrators Diski (2016: 10) is perhaps the angriest, even expressing exasperation at her own writing project. She questions: ‘A fucking cancer diary? Another fucking cancer diary’. She contemplates how to write her way out of the motifs and tropes that have served to homogenize the genre and banalize the experiences it purports to capture. Along with Riggs (2017), she is frustrated by the military language surrounding cancer which she finds alienating and inappropriate.1 She cautions that this is not a disease she is ‘fighting, losing, winning or bearing’ (Diski, 2016: 10). What the authors invoke in their discussion of cancer clichés is that, as Davidson and Milligan (2004: 526) explain, emotional expression is ‘more or less “governed” by rules’. Overt and covert regulatory norms often surround emotional responses to a cancer diagnosis with a particularly privileged subject position, the ‘heroic’ patient (Searle, 2002). Unfortunately, this is not a script which any of the women want to take up because they find it alienating, reductive and patronizing. Working to dispel such common portrayals which severely diminish their sense of self, as well as public and medical understandings of their needs, it is the more complicated, nuanced, often contradictory and at times absurd, idiosyncratic particularities of their subjective experience of ‘livingdying’ that the authors seek to articulate. In so doing, the hope is to reveal what a generalized societal fear of death has actively worked to silence and hide from the living; to make room for and create meaning out of their marginal experiences and, in doing so, to find a way to come to terms with ‘livingdying’. In Taylor's (2016: 32) words, ‘I am making a shape for my death, so that I, and others, can see it clearly. And I am making dying bearable for myself’. The frustration articulated by the authors around the framing of emotions and cancer in the popular imagination, is indicative of the loss of agency that comes with their diagnoses. They are no longer the subjects of their lives. They often feel out of control and disenfranchised in encounters with medical professionals. As explained, Riggs (2017) is affirmed by her oncologist Dr Cavanaugh, but other doctors she meets are flippant and self-congratulatory. Taylor (2016: 14) voices her frustration at her objectification by medical specialists:
Sometimes I'm sad about everything: the way my grilled cheese sandwich tastes, how nice my socks feel, a song John is playing in the kitchen. One time he puts on this goofy Loudon Wainwright song that was on a mix tape I used to listen to during my commute from the boys' school in Bethesda back into the District when we were newly married and everything was about to begin and it makes me burst into tears about the shortness of everything. What is striking about Riggs' (2017) reflections is how the normally insignificant practices in an everyday space, such as the home, take on a different emotional register with the shift in perspective and temporalities that come with ‘livingdying’. Over the course of the memoir, she shops for a new couch, socialises with friends and family, enjoys walks, tends to her garden, sends her boys to school and camp, gets a new dog and goes to Disneyland. It is the threat of losing the ordinary and mundane which brings her sorrow. Thus, she reacts negatively to the suggestion from a doctor who recommends she make a bucket list, as her goals cannot be so easily contained. She says: I want all the things to do with living—and I want them to keep feeling messy and confusing and even sometimes boring. The carpool line and the backpacks and light that fills the room in the building where I wait while the kids take piano lessons (Riggs, 2017: 210). What the authors describe is named by Kellehear (2014: 170) as a ‘social death’, the death that precedes a physical one and occurs as ‘parts of the self become less sharable and visible the deeper the physical, emotional and spiritual processes of dying become’. There is an emotional geography to a social death in that previously enjoyed sociospatial practices can no longer be undertaken, causing sadness and grief. Taylor (2016) provides an evocative account of this process in a description of a park in which she used to take daily walks with her husband. She is too physically fragile to do this anymore, just as she is unable to bike-ride or drive or swim. As she identifies what she has relinquished, she states: And so it goes the endless list of pleasures I can no longer enjoy. Pointless to miss them of course, as that won't bring them back, but so much sweetness is bound to leave a terrible void when it's gone (Taylor, 2016: 24). The grief of the authors is further entwined with other losses experienced in life, particularly in relation to their mothers. Taylor (2016: 133), for example, writes about missing her mother in the face of death, seeking her guidance and support as she has to make a decision about surgery or radiation. At the start of her memoir, we learn that Riggs' (2017: 141) mother has a terminal diagnosis as a result of multiple myeloma, thus offering her daughter ‘a morbid test drive’. As is typically the case today, Riggs' (2017) mother dies slowly with numerous medical interventions both extending her life and causing her more illhealth:
I would come out of consultations feeling as if my humanity had been diminished by the encounter, as if I'd been reduced to my disease alone, as if everything else that defines me had fallen away.
Multiple hospitalizations, endless courses of steroids, blood and platelet transfusions, five bone marrow biopsies, daily debilitating nausea and diarrhea, three failed clinical trials. She's been keeping track: five days of not feeling well to two where’ she's basically okay (Riggs, 2017: 79).
In Diski's (2016) memoir, these issues come to the fore as she recollects twenty daily experiences with a machine she learns is called an Elekta Linear Accelerator and its young radiography operators. She describes the instrument, with its three large plastic arms that rotate
Following her mother's death, Riggs (2017) is pained as she witnesses life inevitability moving on, and from her distinct position of ‘livingdying’, to her own future absence. She details the first meeting of the book club of which mother and daughter were part, expressing the ‘shock’ at the ‘ease with which we gather our chairs a little closer, adjust our banter for five instead of six’ (Riggs, 2017: 238).
1 Susan Sontag in Illness as a Metaphor (1978) and later AIDS and its Metaphors (1989) critically brought to academic and public attention the seepage of the military-industrial complex in disease discourses in which there is a moralistic heroic code of going into battle to defeat the disease and by extension, death.
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across the body, sometimes clockwise, and other times anti-clockwise, and its lights blinking to no discernible pattern. She is rarely even greeted on arrival by the radiographers who are fixated on the machine. The only conversation is her response to their questions as to her date of birth and her address to verify she is the right person for treatment. Once she is in place on the machine bed, she is reduced to being only parts of flesh to be arranged appropriately to match the numerical coordinates the radiographers call out to each other across her body. She recalls that the room was cold, as were their fingers as they prodded and pushed her into place, and that the bright ceiling lights hurt her eyes. No one explains to her what is happening, and before she can ask the radiographers, they are quarantined in the ‘safety room’ out of reach, not only of the potentially damaging radiation, but also of patient confusion, anxiety and fear. Diski (2016) recognises that radiography may be an occupation that is necessarily not steeped in emotion, as the technicians are dealing with complex measurements that need to be exactly right for each of the numerous patients that come for short periods of time day after day, but she is equally critical of the failure of these health professionals to engage with her in a humane way. She writes of being ‘grumpy and cross,’ that she had been made to feel ‘invisible,’ and compares this to her experience in the chemotherapy ward where, despite treating multiple patients each day, the oncology nurses were always caring and compassionate (Diski, 2016: 128). In comparison to Diski's (2016) experience, Taylor (2016: 49) admits to being only ‘occasionally angry’. While anger at her diagnosis is muted, she expresses considerable frustration at the failure of the Australian government to legislate for euthanasia. Thus, her anger is reserved for an issue that has collective value rather than one that concerns her as an individual. As she reveals in the opening sentence of the memoir, she bought a euthanasia drug online from China a few years before beginning the memoir. She hesitates over this course of action, however, as she worries about causing distress to family and friends, and having her death recorded as a suicide, ‘with everything that the term implies these days: mental angst, hopelessness, weakness, the lingering whiff of criminality’ (Taylor, 2016: 7). Despite her reservations, she purchases the drug referencing it again in the closing pages of her memoir as critically important to her sense of agency.
degrees distant’. She observes that she is part of a post-modern society where everyday death is rarely visible. According to Taylor (2016: 9) this has made the dying ‘lonelier now than they've ever been’.2 Incredibly, apart from the palliative care specialists, no other doctor Taylor (2016) consulted over the course of her many years of treatment had ever talked to her about death. Perhaps, she says, this silence is because death is viewed as a failure by doctors – a belief she wonders may have ‘seeped out into the wordier world in the form of an aversion to the subject of death per se’ (Taylor, 2016: 8). These reflections regarding our aversion to discuss death speak to Ahmed's (2004) contention that emotions circulate between bodies and become attached or ‘stick’ to certain bodies. An array of negative emotions attach themselves to the ‘livingdying’ body, including, as Taylor (2016) notes, the emotion of shame. She observes that it is common for people to react to the ‘livingdying’ by wanting to share a personal story of death that comes with a ‘vague sense that it is shameful, that the whole sorry business is somehow their fault’ (Taylor, 2016: 30). Again, as the narrators discover that they are no longer seen as part of the living, they simultaneously find themselves inhabiting and embodying a separate space. Within this space are specific places designated for the ‘livingdying’ such as the hospice which, as Riggs (2017: 105) remarks, is a word that ‘when you say it people's faces fall’. Another specific place in which the ‘livingdying’ is authorised is the chemotherapy/radiation ward of the hospital. As Diski (2016: 119) recognises, against their will and by virtue of the segregated spaces in which they are forced to circulate, the ‘livingdying’ suddenly acquire membership into a dreaded and unwanted community: ‘We hardly spoke to one another, but only nodded our heads, because people in various stages of cancer treatment aren't a group anyone wants to be a part of’. However, in the ward she discovers a certain comfort in the complex and ambivalent sense of belonging and community. As she explains: I discovered that there was something about the entire, dreaded, much mythologised and allegorised cancer ward and its inhabitants, perhaps the pathos, that attaches you to it, however delicate or elastic the connecting fibre (Diski, 2016:119). The contradictory emotions elicited by the ward is also illuminated via Riggs' (2017: 121) description of it as affording her a ‘dark harmony’ in that she is around other bodies that are like hers. She writes:
6. Isolation and loneliness
In treatment, the wrongness I feel in my life is a wrongness reflected in my body – my steroid puffy face, my bald head, my lopsided chest. And spending my days at the cancer centre: It's something I'm part of. I make sense there somehow. A lot more sense than I make at the gym or the elementary school or the grocery store or work meetings – or all the other places I've sat outside of for too long in my car taking deep breaths as I attempt to return to civilian life.
Perhaps the most potent of emotions the narrators experience is that of loneliness, at times a consequence of literally being and feeling alone and isolated and, at others, prompted by the paradoxically disconcerting, and yet sometimes also reassuring, sense of belonging that comes from navigating the marginal, foreign and subversive spaces commonly shared by the ‘livingdying’. In both cases, the greater proximity to death associated with the ‘livingdying’ appears to be the culprit, and consistently works to set them apart from the living. As the authors point out, life and death are always in close proximity, but this is seldom acknowledged. Riggs (2017: 197) comments:
In this powerful quotation Riggs (2017) communicates the extraordinary difficulty of ‘livingdying’. Aware her ‘livingdying’ body is inscribed with negative social and cultural messages, she finds the everyday spaces of the living difficult to negotiate. Her reflections echo Wilton's (1998: 174 and 178) research into opposition to an AIDS hospice in a Los Angeles suburb. Neighbours' antagonisms to the project were embedded in a construction of the residents as ‘abject’ or ‘other’ in that they symbolised vulnerability, impairment and mortality. Wilton (1998) argued that their proximity was a source of anxiety because they challenged the dualisms of health and illness and life and death. Because experiences of illness and/or dying are typically shamefully hidden out of sight the narrators have nowhere to turn, and are left to grapple with the complicated emotions that arise from them on their
Death sits near each one of us at every turn. Sometimes we are too aware, but mostly we push it away. Sometimes it looks exactly like life. Orange. The colours of the sky are the same when the sun rises as when it disappears. The lack of recognition that we are all of us, all the time, dying means that once the narrators are diagnosed as ‘dying,’ the living regard them as distinct and separate, thereby forcing them to navigate, inhabit and embody a separate space. Notably, over the course of their lives up to their diagnoses, none of the women had seen anyone die. This is indicative of the sequestration of death in contemporary society and intimately entwined with their sense of isolation as they live/die. Taylor (2016) divulges that until her mother became sick, she had never seen anyone gravely ill. Diski (2016: 17) is also candid about her inexperience with death describing it as ‘minimal and to varying
2 This experience of the loneliness of dying was significantly addressed by Norbert Elias in his book The Loneliness of Dying (2001) which is partly a sociological response to existentialist philosophy and especially the thought of Martin Heidegger.
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own. With no place amongst the living to talk about death, Taylor (2016) seeks out an alternative venue for information, affirmation and community. She finds this at an Exit Café where the ‘livingdying’ gather informally to discuss death, including options for euthanasia. She describes travelling to a suburban café to meet with six regular attendees who offer her friendship, camaraderie and support. The temporary space created to facilitate talk of death is vastly different from the sterile and objectifying spaces of the hospital treatment rooms.
with are all highly circumscribed in that they are all by white, middleclass, heterosexual women living in the industrialised west, and dealing with cancer with access to publicly or privately funded health care. This specificity is typical of the genre of dying narratives (Gygaz, 2013), but is clearly at odds with the diversity of experiences of living and dying, particularly in geographies in which bare lives of abject poverty, disease and marginality are a prevailing reality (Kellehear, 2007: 243–250). We are aware our analysis risks reproducing these very particular classed, racialized and heterosexualised accounts as normative by default. Thus, while memoirs are incredibly rich data sources for geographers of death and dying, there is a need to move beyond the formal published written text to engage with some of the more innovative ways in which the living and the dying are today narrating their stories such as on blogs and vlogs and on global social media sites such as YouTube (e.g. Gibson, 2015; Andersson, 2017). These forms of storytelling about dying are representative of the growing and dynamic nature of life writing in the 21st century that is bringing a more heterogeneous perspective to the subject. Overall, the three narratives examined are of enormous pedagogic value in bringing a spatial sensibility to the complex and sometimes paradoxical emotions experienced by the ‘livingdying’. They demonstrate, as Madge (2016, 2018) argues, that the normative dichotomy of ‘the living’ and ‘the dying’ is directly implicated in the emotional vulnerabilities of the dying. The dying are marginalised, objectified and silenced, thereby eliciting and/or aggravating understandable fear and anxiety, sadness and grief, anger, and frustration, and isolation and loneliness. Given that the emotional lives of the ‘livingdying’ are so negatively shaped by the separation of the living and the dying we concur with Madge (2018: 257) that there is a need for an ‘altered language’ and an ‘holistic theorisation’ in the literature on geographies of death and dying that recognises the experiences of living and dying are not mutually exclusive, but deeply and inevitably entwined. As Gibson (2001: 313) asserts: ‘one lives by dying or one lives in dying or yet again in dying one lives. One is already the other (they are temporally and spatially the same) until the absolute difference of death itself.’ Thus, we argue that our generalized and active avoidance of death requires a radical shift in our cultural approach to and understanding of death and dying, a shift that can bridge the gap that currently sets apart realities and concerns that belong together in one space, the world of the ‘livingdying’.
To find companions who share your desire to know more, to take the initiative, and to laugh in the face of our shared mortality, is a gift. How different from the experience of the hospital waiting room, where you sit in a glum herd with the overhead televisions blaring, guarding your dirty little secret until such time your name is called (Taylor, 2016: 13). Riggs (2017) finds an equivalent emboldening outlet to redress her isolation in social media interactions with a girlfriend who also has cancer. They text each other with ideas for cancer patient thank-you cards which are, at times, ruthlessly cynical and often full of humour. Perhaps the most powerful way the women resist and bridge the isolation and loneliness of ‘livingdying’ is by writing. Taylor (2016: 120) states matter-of-factly ‘I still write so as not to feel alone in the world’. They are gratified by the permanence of their writing and its ongoing presence in a world from which they are soon to be absent. 7. Conclusion Collectively, the three memoirs we have examined provide insight into the varied and dynamic emotional geographies experienced by those Madge (2016, 2018) refers to as the ‘livingdying’. Particularly evident are feelings of fear and anxiety, sadness and grief, anger and frustration and isolation and loneliness. Fear and anxiety emerge as death is unknown and unknowable. The authors have few if any reference points for death and dying. Their fears and anxieties are magnified as the narrators enter the liminal space of the ‘livingdying’ where they witness a world that had previously been hidden to them, and which they had not contemplated existed. Key places in this new world are chemotherapy wards and radiography treatment rooms. Unsurprisingly, there is enormous sadness and grief in ‘livingdying’. The ‘livingdying’ grieve in anticipation of the future loss of relationships with partners, children and grandchildren. Sadness and grief are ongoing and can be triggered in unexpected places and via unexpected practices as the ‘livingdying’ become less able to engage in routine practices that once brought them pleasure. Alongside sadness and grief, there is anger and frustration, but these latter emotions are not necessarily directed at dying itself. There is anger at not having access to euthanasia, at instrumental and dismissive treatment by medical professionals and at the platitudes that are often directed at cancer patients. Anger and frustration also emanate from the sequestration of death, and the unwitting discovery of a wholly unknown land occupied by the ‘livingdying’. The inhabitants traverse this land as they no longer belong to or are welcome in the world of the living. They are excluded by a culture which denies death and others the frail, impaired and dying body. The anger that fills the narrators is thus largely directed at societal attitudes and norms rather than their individual diagnosis. The most recurring and keenly felt of emotions in the books is a sense of isolation and loneliness. In the everyday world of the living such as schools, hairdressers, shops and cafes, they often feel very alone. There is, consequently, solace for the ‘livingdying’ in spaces such as the oncology ward where they find a sense of community and dying amongst others like themselves. There is also community for the ‘livingdying’ in new spaces they create to voice their experience, such as on social media or at exit cafes. One of the key limitations of our analysis is that the texts we worked
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