Affect Theory and Breast Cancer Memoirs: Rescripting Fears of Death and Dying in the Anthropocene

Part I: Situating Fear

Extant investigations into the politics of embodiment in relation to life-threatening illness show that capitalist cultures of death paradoxically deny the reality of embodied mortality. Deborah Lynn Steinberg’s ‘The Bad Patient: Estranged Subjects of the Cancer Culture’ (2015), for example, troubles normative middle-class models of subjectivity that call for the performance of strength and immortality while undergoing cancer treatment. Steinberg takes Angelina Jolie’s preventative surgeries as exemplary of such problematic practices. In willingly submitting to the system of testing and invasive treatment, all the while performing self-determination and strength, Jolie exemplifies the cultural fantasy of immortality. Although Steinberg’s paper mostly focuses on a critique of such practices, she is ultimately seeking to destabilize ‘two elements of denial’ at the heart of this mode of being. ‘First, of the human condition which cannot guarantee survival…and cannot evade death…and second, of an affirmative choice not to pursue heroic measures’ (p. 129). Steinberg seeks to make space for subjects who are not in denial about their embodied finitude.

Building on Steinberg,Williams and Solbraekke (2018) show that, in reality, denial runs deep. In exploring the diverse way wigs are used in cancer stories in print, film and television media, they find the same set of practices – based on the denial of mortality – replay over and over again in diverse cultural forms: the mundane performance of heroic survivalism ‘bolstered’ (p. 108) through repetition. The perversity identified in this research is that there is no room for the lived expression of embodied vulnerability or weakness and no cultural reward for realizing finitude otherwise.

Environmental theory is also directly and indirectly interested in interrogating the problems with dominant practices of dying and death. Concepts that foreground human embodiment, such as the notion that humans are prey (Plumwood, 2008), compost (Haraway, 2016), entangled (Barad, 2013), transcorporeal (Alaimo, 2010) or always already dying (Radomska et al., 2020), circulate widely in debates about embodied life in the Anthropocene. The named field of ‘queer death studies’ is the most explicit. It begins with the assumption that dominant cultural practices around dying and death need changing. In a special issue of Australian Feminist Studies establishing the field, the project’s remit is described as explicitly ‘queerfeminist’ and ‘relentlessly norm-critical’ while at the same time centring anti-human exceptionalist ecological concerns (Radomska et al., 2020: 88). The editors take issue with the anthropocentric idea of a ‘privileged afterlife’ or ‘posthumously memorialised (and therefore immortalised) subject’ that takes Western subjects away from death (Radomska et al., 2020: 84). In this issue, Patricia McCormack asserts in contrast that ‘human must embrace the death of this species’ (2020: 106, emphasis added). The imperative to embrace death is given because ‘the death of the human species is a gift we have from the natural world that offers a way to allow the Earth to flourish and teach us to care, slowly, quietly, without ego or love for dominance’ (p. 106). While all these concepts might be necessary to illustrate how a denial of death shapes a problematic relation with the earth, it is worth interrogating what gets in the way of a direct embrace of inevitable finitude.

Take Jolie as exemplary, for instance. What is it she reports preventing with her pre-emptive cancer treatment? ‘Cancer is still a word that strikes fear into people’s hearts’, says Jolie, ‘producing a deep sense of powerlessness. But today it is possible to…take action’ (Jolie in Steinberg, 2015: 134). Take action against what? Jolie reports preventative cancer treatment primarily as a salve for fear and associated sense of powerlessness over one’s own body; of course, that the surgery prevents cancer is what alleviates the fear, but fear and cancer are in symbiotic relation here. In positioning Jolie in this way, Steinberg argues she signifies the ‘normative institutionalities and everyday non-remarkable sensibilities around cancer’ (p. 117). In other words, and to draw on Sedgwick’s terms, Jolie represents the normative ways in which the knowledge of cancer’s capacity to prematurely end life is realized by certain privileged individuals. But arguably Jolie also exemplifies the normative affective state that motivates people into any testing, treatment and to the performance of heroic survival in the first place: fear. While critiquing the way normative death practices deny mortality and embodied finitude, these studies tacitly neglect interrogating how fear is a factor in denialism.

Fear actually undermines or destabilizes the political orientations of these critical projects. To repurpose Elizabeth Wilson’s argument in Gut Feminism, fear of dying and death is ‘hostile – in ways that cannot be extinguished – toward things that [queer and feminist thought] holds dear’ (2015: 176). Fear, in the case of the aforementioned theories of ecological embodiment, can lead to practices that seek to insulate the self from the world, to try to maintain the fantasy of individuality and control. Not all affect is absent from such debates, however, but when affect is accounted for it is more manageable or recoverable in terms of feminist politics or not dealt with in enough detail to reveal the tensions. Margrit Shildrick explores new eco-cultures of the dead in nuanced affective terms, for example. Shildrick’s work does not focus on the individualistic fear of dying and the desire for the survival of the self; rather it theorizes an ethics of grieving for another that ‘exceeds individual affect and cognition’ (2020: 180). General theories of affect have been considered across discourses in relation to embodiment and environment (Bladow and Ladino, 2018; Springgay and Truman, 2017), highlighting the need for more investigation. But while ‘climate anxiety’ is a key term for conceptualizing a fear of the end of the world due to environmental collapse (Verlie, 2021) and the concept of ‘ecophobia’ posits a unilateral fear of nature as an eco-social problem, the politically ambiguous, complex and acutely individualistic fear of dying is not well theorized in these debates. Bringing Tomkins’ theory of affect in to support a reading of iconic breast cancer memoirs provides different way into these related issues.

Regarding fear of dying and death, the aforementioned scholarly debates find an unlikely critical friend in the memoirs of queer and feminist writers who have written about diagnosis and treatment for breast cancer. In most cases, albeit in different ways, the authors share the same scepticism of cultural norms surrounding their diagnoses as scholars like Steinberg, Williams and Solbraekke. Indeed, Susan Sontag rejects the whole representational economy of cancer as ‘an encouragement to simplify what is complex, an invitation to self-righteousness’ (1978: 85). The way Anne Boyer describes the impact of cancer diagnosis and treatment on her sense of self as an individual chimes with Steinberg’s call to reject denial and McCormack’s imperative to confront death in order to recognize the non-sovereignty of the individual human: ‘[c]ancer’, says Boyer, ‘is in our time and place one of the most effective diseases at eradicating the precise and individual nature of anyone who has it’ (2019: 190). There is, however, one crucial difference. Boyer neither champions this dissolution as a release from denial nor celebrates it as a natural part of her earthiness; to the contrary, she reports being motivated into toxic treatment regimens out of ‘a fear of the painful and ugly version of death that is cancer’ (p. 153). If we take Steinberg’s and McCormack’s papers as emblematic of the absence of affect’s complexity in these debates, the difference between Steinberg’s call to refute denialism and McCormack’s excited celebration of human death, on one hand, and Boyer’s acute fear of facing it, on the other, creates a critical problem. How can we both resist the fear-lined denialism of hegemonic death practices and open up to embodied finitude as a matter of ecological importance?

Silvan Tomkins’ theory of affect affords a wide lens through which to view fear of dying and death and the diverse and potentially conflicting ways of responding to that fear. Frank and Wilson (2020) flag two key reasons why Silvan Tomkins’ theories of affect are generally useful for cultural criticism today. First, Tomkins’ theory has a biological basis – affect is an intense and personal embodied experience: Affect is a central and unavoidable part of the material life of the human animal. For Tomkins, the body and mind are totally entangled. Second, affect motivates responses that have social implications, but in Tomkins’ scheme the response can manifest in any number of anti-essentialist, non-teleological and diverse ways (Frank and Wilson, 2020: ‘Introduction’). The latter is as opposed to, for example, psychoanalytic theories (e.g. Oedipus complex) that prescribe a normal and linear model of psychological development, pathologizing difference and deviation. Overall, Tomkins’ model is not interested in diagnosing the right or best response, but rather cataloguing their diversity. The point of critical interest and ethical reckoning for Tomkins thus resides in tensions between different affective responses: ‘Conflicts such as these’, summarize Frank and Wilson, ‘generate much of the complexity of human experience and become the hidden ground for ethical, religious, and political debates about how life should be lived’ (2020: ‘Images’). Regarding the present article, Tomkins’ embodied and materially performative theory of affect understands fear as an inevitable and unavoidable part of embodied life. At the same time, his theory also accounts for the diversity, creativity and specificity of fear responses. Through the close analysis of fear’s specific rescripting in queer and feminist breast cancer memoir, using Tomkins’ model of affect as a framing device, I can trouble the political and ecological contours of current debates around human death and dying in the Anthropocene. Working towards the establishing embodied finitude without fear as a critical standpoint, I paraphrase Michelle Jamieson’s notion of ‘sitting with failure’ (2016) to ask: How does one sit with the fear of one’s fundamental earthy mortality after a cancer diagnosis? How can this durational and embodied experience be instructive for wider political and ecological struggles today?

Thus, here the analysis of fear follows what I consider one of Sedgwick’s key formulations of queer affect theory, shifting critical attention from ‘the nonsensical but seemingly uncircumnavigable question of how people should feel to the much harder ones of how they do and how feelings change’ (1997: 2). Specifically, this means not designing a theory that implies we should not fear death. Instead, examine how we do and theorise the ideal conditions under which those feelings might change.

In the long history of feminist engagements with affect and affect theory, the dominant political lesson often aligns with the feeling and the affect is usually negative. ¹ For example, Kristeva (1989) and Butler’s (1997) iconic re-readings of melancholy derive a feminist social theory from the structure of a particular individual feeling. This critical reflex became so common, Sianne Ngai’s Ugly Feelings (2005) explicitly set out to explore how minor negative feelings do ‘politically ambiguous work’ instead (p. 1), in which paranoia is explored as a ‘species of fear’ (p. 299) concerning whole systems rather than individuals. In a genealogical survey of queer affect theory specifically to connect it with debates in ecocriticism and environmental humanities, Nicole Seymour reminds us not to be prescriptive: ‘queer environmental affect is a complex and ambivalent phenomenon’ (2018: 241), she says. So, building laterally on Seymour, and what Lindsay Kelley argues in ‘The Political Life of Cancer’ as an ‘anti-conciliant’ feminist politics around the disease (2017: 233), attending to fear of dying and death cannot begin by asserting a particular political orientation or outcome in relation to bodies and worlds. In reading breast cancer memoir, we are exposed to the many ways fear can manifest and the trouble it causes for even the most basic political assumptions.

Part II: The Complexity of Fear as Represented in Breast Cancer Memoirs

Fear is an affective response to a threat. A threat can exist at many scales, but when it comes to an individual human body, fear of dying and death relates to a particularly acute threat to self or vulnerable animal beings we care about. Cancer’s uncertainty and randomness magnifies this fear. As Boyer says, ‘Cancer’s attraction is that it is a disease of probability rather than communicability’ (2019: 191). While catching a cold or Covid-19 has a particular point of transmission, the rhetoric around cancer is that if sovereign subjects do all the right things, they most likely won’t get cancer. The fear lingers, of course, because best efforts might not work: Our bodies are porous, do things beyond the control of the individual, are non-sovereign and part of the world’s toxic ecology. In this sense, fear remains a feeling of concern that something bad, painful or harmful will befall the self. Given it is both deeply of the self and out of one’s control, cancer is perhaps the ur illness to trigger fears about the constitution of the individual self and trouble theories of complex intersubjective embodiment: The fear of cancer represents a wish that one could be impervious to the world’s toxicity to a hope that we can control everything down to how our cells divide. ² While likely no one would begrudge another for having an acute fear response to a cancer diagnosis, fear of painful dying and/or untimely death is not yet a seriously complicating factor in critical projects interested in dissolving the self in order to reimagine dying in critical relation to either the capitalist pharmacy or anthropogenic environmental crisis.

Conversely, breast cancer memoirs are variously personal, scholarly, creative and critical accounts of the authors’ diagnoses and treatment for different kinds of breast cancer at an age younger than the statistical average for such diagnoses in their parts of the world (in their 30s and 40s). Confronting mortality out of step with life expectancy is what Jain calls ‘living in prognosis’ (2013: 26) or, for those with a terminal cancer diagnosis, what Sedgwick identifies as the ‘bardo of dying’ (2012: 210). In other words, regardless of different life expectancies across national context, gender, race and class, the authors are all confronting their mortality out of step with the norms of their own demographic.

They are written in different genres: Sontag’s is creative non-fiction avant le lettre and a writerly history of the representations and appropriations of illness in literary and cultural texts; Lorde’s is a diary, providing an intensely personal reflection on her renewed commitment to certain life relations and political struggles following cancer; Sedgwick’s a poetic, critical and dialogic account of psychotherapy; Jain’s a scholarly anthropological study of the political economy of cancer; and Boyer’s a long poem on aggressive treatment for aggressive cancer. These texts are also in intergenerational dialogue with each other in the task of responding to fear – Jain builds on Sedgwick, Lorde and Sontag; Boyer on Jain and the rest. The conflict of interest I should disclose at this point is that I am writing this article as a form of critical breast cancer memoir; this article represents my own response to fear of dying and death as a queer feminist environmentalist scholar diagnosed with early-stage breast cancer at the age of 32. I breathlessly read all these books, gripped by fear, with surgical drains in my body and new plastic breast implants troubling my desire to be compost.

Despite the diverse genres, the authors are using slightly different methodologies to practise a classic feminist literary strategy: to represent a subjective experience that is not present in extant literature. In the case of these texts, cancer complicates or overturns their established assumptions (or desperate hopes) about themselves, the world, their politics, their work and feminist practice more generally. In the context of my own research, my fear of death and dying made it difficult to critically embody the earthly vulnerability I was championing in my research. At the same time, however, breast cancer memoirs also represent subjects living a version of ‘proximity to death’ (Radomska et al., 2020: 84) that is called for in queer death studies. The difference between the two modalities is fear. The proximity to death is registered in these memoirs as unwanted but entirely unavoidable. What catalysed my particular investigation here is thus tension between the need to be of the earth and the fear of what it means for the self.

According to S Lochlann Jain, breast cancer writing works against the ‘cognitive dissonance’ (Jain, 2013: 18) one experiences when confronted with dominant breast cancer narratives. Stories that trade on the promise of life despite the known deadliness of the disease are ubiquitous in what Jain calls ‘cancer patient literature’ (p. 183). As catalogued by Jain, Steinberg (2015) and Williams and Solbraekke (2018), such literature includes TV shows, viral stories of celebrity patient treatment, pamphlets, booklets, advice websites, message boards, Facebook groups and Instagram accounts set up by hospitals or patients, patient advocacy organizations and charities. Fear is often the subtext of such literature, but is sublimated with suggestions of make-up, wigs, scarves and the performance of normalcy through ‘its ubiquitous photos of smiling patients and competent relaxed caretakers’ (Jain, 2013: 183). Jain argues that the disjuncture between the emotions represented in cancer patient literature and the emotions they themselves felt when diagnosed and treated ‘offers (an) example of a place where fear might benefit from more acknowledgement and analysis’ (p. 183). Jain’s study of fear traces how the affect is manipulated to regulate subjects in dominant culture to benefit the for-profit medical system in the United States. In contrast here I seek to bring fear itself into the debates about ecological embodiment. I am out to trouble the debates that assert the political urgency of connecting to embodied vulnerability and finitude, as if there were no psychic barriers to such an earthy embrace.

The fear that registers in all the feminist breast cancer memoirs here is transparent and ubiquitous. The authors do not bury fear in subtext or use it as an alibi for another theme. It is in the texts as a clear and direct account of the feeling. Jain says that ‘sometimes’ they cannot help ‘but devolve into a self-centered, unremitting fear’ (2013: 48). Lorde suggests that ‘sometimes fear stalks me like another malignancy, sapping energy, power and attention from my work’ (1980: n.p.). The feeling of fear is evidently triggered by a cancer diagnosis, but it is not necessarily of cancer in itself or even dying and death as such, but the fear is always related to what cancer potentially means for an individual’s sense of self.

In this regard, the fear is also related to diverse aspects of the experience. For Sedgwick, the fear was not of death, but more about concern for losing interest in life after diagnosis: fear that she ‘may stop knowing / how to like and desire / the world around’ (1999: 4). The fear of disinterest is also related to the fear of the ‘self, threatening to recompose itself’ as the person she was before the diagnosis (p. 7). Boyer initially feared for her professional skills as a poet and how cancer would alter her way of thinking and writing about the world:

My fear came from a search engine. I was afraid of what Google gave back to me when I entered ‘breast lump’, afraid of the culture of disease as circulated on blogs and on discussion boards, afraid of how people were turned into patients with handles and signatures, agonies, neologisms, and encouragements. Mets. Foobs. NED. I was afraid, on the first day, for my vocabulary. (2019: 69)

While the poetic implications came first, Boyer came to fear all the implications across her life: from fearing the pain of the treatment to fearing dying and leaving her child behind (pp. 152–153).

Of the five examples, Sontag is the only author not explicit about her fear, but arguably it is implicit in the structure of the book’s central argument. We know her writing of Illness as Metaphor followed her Halstead radical mastectomy and two years of chemotherapy. While the silence no doubt evidences the formal detachment demanded of earlier modes of non-fiction writing, it also corresponds with what her son observes about her in her obituary decades later: ‘So terrified of death that she could not bear to speak of it, my mother was also obsessed with it’ (Reiff, 2008: n.p.). For Sontag, then, the work processes fear by examining its absence in the archive. Illness is a metaphor for Sontag, because the archive falls short of capturing the affective intensity of her own experience.

Silvan Tomkins’ particular understanding of affect provides a pragmatic and embodied model for analysing, interpreting and taking seriously the variety of fear responses in the context of breast cancer diagnosis and treatment – from sublimation and denial in cancer patient literature to its manifold manifestations in feminist breast cancer memoir. For Tomkins, affects ‘are the primary motivators of human behavior: we act (learn, think, remember, crave, attach) in relation to fear or surprise, enjoyment or shame’ (Frank and Wilson, 2020: ‘1. Drives’). Without affects to catalyse embodied experience, according to Tomkins, ‘nothing else matters’ (Tomkins in Frank and Wilson, 2020: ‘1. Drives’). To care about ‘the environment’, for example, requires an affect to motivate action, like the pursuit of treatment for breast cancer.

Guided by Tomkins, we can look at what fear reportedly motivates people to do (or not do) in each text. For Boyer, fear motivated her to consent to invasive and toxic treatments: ‘You jump [into surgery and chemotherapy] out of fear of death, or at least a fear of the painful, ugly version of death that is cancer’ (2019: 153). In Sedgwick’s case, fear of repeating habitual depressive phases and thus feeling disinterest in the world in the wake of cancer treatment ushered her into psychotherapy: ‘on record, the triggering event was a breast cancer diagnosis eighteen months ago’ (1999: 3), she notes. But fear, as in Lorde’s comment above, can also demotivate one from doing what they want to do: fear ‘stalks…sapping energy, power’; it can make one freeze in terror hoping that, without movement, things will not change for the worse. What is paramount for Lorde is finding a way through fear in order to continue her social, political and relationship building work. The key point is that all the authors feel fear; their fear demands attention and motivates various responses. In the end, they all find a way of interrogating their fear in terms of their critical, political, creative and/or scholarly committments.

Reading the fear of dying and death in these memoirs in light of new critical thinking about embodiment in a time of ecological crisis provides a new perspective on the issue. What is distinct about these memoirs is that the memoirists do not respond by sublimating fear. Instead, they are intellectually compelled to examine what fear tells them about themselves as embodied subjects in a particular social and ecological time and place. Their writerly labours aim to make room for their critical ethics to survive in the wake of fear’s exigencies. They all seem to want to stay present in their bodies and the earthy problems they are trained to analyse as scholars, activists and/or poets, and they all in distinct ways know that fear is an obstacle to this realization.

Part III: Rescripting Fear of Dying and Death

Fear of dying cannot be neatly assimilated with an environmentalist or feminist project because the dissolution of the self and surrender to the earth is both the eco-political telos and the source of fear. Fear in the context of cancer is often, in the first instance, self-protective and life-affirming, but because this sensibility cuts against the ethics of the authors, the memoirs can provide a way into understanding this paradox. As Boyer says, to submit to cancer treatment,

[y]ou must have a desire to live…[and] believe you are a person worth keeping alive. Cancer requires painful, expensive, environmentally harmful, extractive medicine. My desire to survive means I still can’t bring myself to unravel survival’s ethics. (2019: 86)

The unravelling of the affective substrate of such ethical compromises is part of what is happening in this article.

As such, thinking through fear of dying and death to an alternative way of relating with mortality necessitates an examination of why people place such faith in the toxic technoscientific capitalist medical system in the first place. Boyer’s particular cancer leads her right to the limit of this insight. So acute her fear and so desperate her will to live – to be alive for her daughter, to write more poetry, to experience more pleasure – she seeks out the most toxic treatment possible in order to increase her individual chance of living. The treatment is so obviously toxic her first oncologist refuses her request because it challenges his sense of duty of care: ‘I’ve seen people die of chemotherapy’, says her oncologist. Boyer observes, ‘Oncologists, too, fear oncology’ (2019: 151). Boyer moves to another clinic to get the treatment and won a Pulitzer Prize for her efforts detailing her fear and the toxic path to survival. The exigencies of fear mean that, sometimes, ethics come second.

Acknowledging fear does not in itself solve the problem, which is why we need a theory of affect to guide our thinking on the issue. Frank and Wilson make two important points about Tomkins’ theory that explain why I use it here. First, affect is not an optional aspect of the human experience; affect (which for Tomkins takes precedence over drives) is the primary motivator of human behaviour. Within this scheme, Tomkins has a few principles which are as follows: ‘(1) Positive affect should be maximized; (2) Negative affect should be minimized; (3) Affect inhibition should be minimized; (4) Power to maximize positive affect, to minimize negative affect, and to minimize affect inhibition should be maximized’ (Tomkins in Frank and Wilson, 2020: ‘7. Images’). Second, for Tomkins, affect itself is apolitical. In other words, no affect (positive or negative) ‘has any exclusive political or ideological valence as such. Political valences quickly emerge, however, with the inevitable embedding of affects in scenes and scripts that connect them to specific objects, situations, ideas, and behaviors’ (Frank and Wilson, 2020: ‘5. The Positive’). Without affect, we are not motivated to move towards enjoyment and away from fear, for example. But it is not in the affect itself that social critique and political transformation can occur, it is in the accompanying response, how that response is scripted and how the script is materially performative. Fear, for Tomkins, ‘is subject to a wide variety of ideo-affective socializations, and theories and scripts emerge for individuals who attempt to control how much fear becomes magnified’ (Frank and Wilson, 2020: ‘6. The Negative’). Considering these two principles in relation to the memoirs, the authors have to respond to fear and work to mitigate it. The ‘ideo-affective’ theories that inform the authors’ responses to fear are principles of queer and/or feminist sociality and solidarity. They have to labour against fear to protect the integrity of the theory. But in most cases, mitigation of the fear response requires a critical rejection of their culture’s ready-to-hand scripts and a rewriting of their queer feminist scripts as well.

There are two dominant cultural narratives or scripts that guide breast cancer diagnosis fear responses. One is to double down on the self with affirmations of life-affirming individualistic strength. Trained in such scripts, Jain confesses to managing the first week of a ‘women with cancer retreat’ ‘by indulging in a compulsive, downright sick guessing game of “who’ll die first?”’ (2013: 31). The second dominant narrative is to turn the fear into a coherent quest for identifying the cause or seeking a cure, such as in the exemplary case of Angelina Jolie. When ecological rather than genetic causes are sought, such a response motivates powerful counter-hegemonic feminist and environmentalist crusades against industry. ³ But both the investment in either the promise of modern medicine or eco-political revolution gestures towards the same hope, what Eli Clare calls ‘the maze of contradictions and collisions’ we name a ‘cure’ (2017: 183). Under Tomkins’ rubric, all activities are legitimate ways of trying to minimize fear out of necessity. These cultural scripts are readily available and arguably seek to minimize the negative feeling by promising life, but they do so in ways that either manage fear via individual affirmation without social change or seek long-term eco-social change without confronting the potentially shattering short-term individualized experience.

In contrast, all the feminist breast cancer memoirs examined here rewrite or, to adapt Tomkins’ term, ‘rescript’ the fear associated with diagnosis and treatment. The rescripting that occurs in the memoirs contains two main interventions. First, by magnifying the subjective experience of the authors by highlighting their discontent with dominant scripts. Second, by asking how the social context could, if differently configured, mitigate fear otherwise. This is because a script is not just an internal monologue but is collectively written; in fact, these scripts, according to Frank and Wilson, are ‘a useful hinge concept for moving between psychological and sociological perspectives’ (2020: ‘9. Scenes and Scripts’). The memoirs move in these ways between the psychic and the social to make the case for different structures of care based on other ways of being and relating.

Although Jain does not use the term ‘script’, they make rescripting affect part of their research project design: ‘each chapter began with a curl of feeling – like a lock of hair pinned to a voodoo doll. I worked my way backward from the discomfort to decipher the structures that organized it’ (2013: 22). Jain’s study thus reveals the logic of how fear is manipulated by dominant culture through critical analysis. In the chapter ‘Fallout: Minuets in the Key of Fear’, Jain specifically studies where and how the dominant cancer script ‘piques and diminishes…fear’ in order to critically question it (2013: 186). Like the questionable Cold War strategies to diminish the fear of something that is utterly terrifying (‘duck and cover’), fear of cancer is managed with a series of similarly impossible behavioural suggestions and institutional promises. ‘Fear of cancer starts early’, notes Jain, who locates it as a cornerstone of Western behaviour regulation. ‘If you are educated and middle class’, they note ‘you likely eat organic food, wear your sunscreen, and get your colonoscopy’ (p. 181). What Jain goes on to show, though, is that the fear is only widely acknowledged in this anticipatory and preventative mode – smoke, for example, and you will die painfully of cancer, don’t smoke to avoid it. In these zones, fear is recognized and harnessed to regulate behaviour. But once someone is diagnosed with the disease, the fear of what is happening in the body, of what pain might befall the body, of the possible treatments, of the potentially foreshortened life and untimely death and cancer’s unevenly understood duration in between are all sublimated, ‘airbrushed’ in pamphlets, ‘reducing the fear around a potential treatment or plugging a chance of survival’ (p. 197). Fear’s dynamics within cancer itself – of becoming dirt, of living as a mortal – is sandwiched between the promise of self-managed prevention of the disease and the technoscientific cure.

In addition to being used to regulate behaviour, fear can be scripted in perversely exploitative ways as well. Boyer unearths a breast cancer fetishist page that invents ‘fictional erotic accounts’ of breast cancer diagnoses. It scripts the fear of the lump in this way:

Thinking about a gorgeous, perfect woman developing a cancerous lump…elicits such sorrow in me that the reaction actually causes sexual stimulation…Picture the fear, the shock and despair the girls would feel, so young, so perfect, and so filled with cancer in their breasts. (Boyer, 2019: 175)

The fantasy involves seizing the vulnerability that lines fear as an opportunity for sexual exploitation.

From the place of understanding the complexity of fear, the more explicit rescripting can begin. Sedgwick does so, focusing on the unstable significance of lump as a proleptic device in a cancer story. Sedgwick notes how lump can never symbolize a simple narrative trajectory: ‘the increasingly divergent physical scales (and highly differential rates of their change) that characterize the relation between touch and vision in the modern period result in understandings of texture that make [lump] as apt to represent crises and fissures of meaning as metonymic continuities’ (1997: 16). Lump portends doom and associated fear of the unknown in popular scripts, but it might also not signify cancer at all; at the same time, cancer is not one disease, so a cancerous lump is also a part that represents divergent wholes: life, death, treatment, hospitalization, boredom, fear, flowers, visits, bills, tests, scans, waiting on results, chemotherapy, nausea, standards of care, statistics, diagnoses, prognoses, fake boobs, going to work, hanging out with family, surviving, living, dying. ‘Women who do breast self-examination’, observes Sedgwick, ‘are occasionally taught to use a film of liquid soap, a square of satiny cloth, or even a pad of thin plastic filled with a layer of water to make the contours of their breast more salient to their fingers’ (1997: 15). This technique can help make small lumps tangible. If one feels a lump, they might pay a visit to the doctor. While in a fiction a lump might be strategically placed by an author to control a particular narrative trajectory, in a memoir the significance is always determined retrospectively because lump exists on a spectrum from metastatic cancer to benign cyst. In most scripts, though, ‘lump’ in some ways triggers enough fear to catalyse a story: fear of whether or not it is cancer, of what it might mean for the self and the implications for the future.

The creative concepts used to mitigate fear can be manipulated as well, like Lorde's cancer warrior. Audre Lorde’s now iconic notion of the ‘cancer warrior’ is an avatar designed in order to transcend fear from within a cancer diagnosis. The cancer warrior, in Lorde’s sense, invokes the performance of bravery required to confront something terrifying, while maintaining a politics of resistance to a toxic dominant order. ‘Once I accept the existence of dying as a life process who can ever have power over me again?’ asks Lorde (1980: n.p.), heroically and rhetorically surrendering herself to the fact of her finitude for the purposes of claiming power. A warrior is a brave and senior fighter – such bravery is usually not for individual ends, but for the expression of a larger social or political goal. In Lorde’s case, ‘breast cancer warriors’ are not fighting for the self, but carry the scars from a ‘cosmic war against radiation, animal fat, air pollution, McDonald’s hamburgers and Red Dye No. 2’ (Lorde, 1980: n.p.). Like traditional warriors, Lorde also examines her scars as a form of scarification in defiance against particular social and ecological violences. Her scarred and scared body evidence the toxicity of the world, her body itself representing the resistance needed so that not everyone has to bear such scars.

Noteworthy is that the possible imminence of death is initially immobilizing for Lorde, but becomes motivating through the warrior script: ‘I realize that if I wait until I am no longer afraid to act, write, speak, be, I’ll be sending messages on a Ouija board, cryptic complaints from the other side’ (Lorde, 1980: n.p.). Lorde’s warrior develops in The Cancer Journals in response to fear, in order to be able to continue to speak and act against the dominant order in the wake of a cancer diagnosis.

Lorde’s characterization of the cancer warrior qualifies whom and what she is fighting for – ‘black lesbian feminist mother lover poet’ (Lorde, 1980: n.p.) – and some people have taken up her mantle in full, including Erika Hart, who became famous after attending an Afropunk festival showing her mastectomy scars and fighting for queer black liberation (Hart, 2016). Since Lorde’s design of the ‘cancer warrior’ in response to fear, its significance has travelled in less critical ways too, generating a radically individualistic notion of empowerment by sublimating fear of dying from cancer. The Instagram hashtag ‘cancer warrior’ indexes people fighting for themselves (survival, improvement) buoyed by the capitalist pharmacy. One has to be precise and thoughtful to find a script that both actually minimizes fear and does not require the centring of a powerful individual self for narrative coherence.

Susan Sontag’s Illness as Metaphor provides such a script. The text catalogues the many ways in which the tubercular and the cancer patient are represented or, from Sontag’s point of view, transformed into bad cultural metaphors in Western literary and cultural history. A metaphor is a figure of speech in which a word or a phrase is applied to something that is not literally applicable. In other words, the exhaustive catalogue of representations of patients in the book is, from Sontag’s perspective, not representations of illness itself but symbols for something else. By implication, Sontag’s argument in the book is that art does not imitate life when it comes to the representation of illness: Illness in books is nothing like illness in life. That is, fundamentally, ‘illness is not a metaphor, and…the most truthful way of regarding illness…is one most purified of, most resistant to, metaphoric thinking’ (1978: 3). Despite this, her method is one that catalogues metaphor. Reading the history of illness directly through the lens of experience (like Lorde, Jain and Boyer) is replaced by displacing that experience and tracing a poetic history of the illness. In the book, one visits the esoteric sanatoriums of Thomas Mann’s Magic Mountain and learns about the ubiquity of bad cancer metaphors in 20th-century American politics. One reading, and probably the readiest to hand view of Sontag’s approach to fear, is that this is an act of sublimation where fear is not positively confronted in the text. Unlike Boyer and Jain, who stare directly at the system that causes them pain, and Lorde, who fights against it, Sontag displaces the fear onto a study of the history of such displacement.

Fortunately, authorial intention does not have a monopoly on meaning; thus a related interpretation is that such a narrative makes the self smaller, in line with ecological calls for the dissolution of self and ego. While Boyer, Jain and Lorde all explore the self in the face of the prospect of cancer, Sontag squirrels into history. The kingdom of the sick that she opens up is vast, terrible, scary, real, historical, actual, perverse, horrifying, comforting and incredible. Read from this perspective, Illness as Metaphor is an invitation to be sick with others across generations and time and explore many strange experiences. This also puts the human pursuit of health and well-being into historical perspective. The celery juice touted by Instagram’s neoliberal ‘cancer warriors’ for its anti-carcinogenic properties is the next iteration of activities and places thought to be good for the sick:

[In] the nineteenth century…[these were] the islands in the Mediterranean or the South Pacific; in the twentieth century, the mountains, the desert – all landscapes that had themselves been successively romanticized. Keats was advised by his doctors to move to Rome; Chopin tried the islands of the western Mediterranean; Robert Louis Stevenson chose a Pacific exile; D.H. Lawrence roamed over half the globe. (1978: 33)

The perspective afforded by the text’s genealogy serves as a reminder of just how limited individualist behaviouralist modes of managing fear around illness are in the context of human history. But also, Boyer, unable to find a place to lie down in the capitalist cancer clinic, would likely have appreciated a room of one’s own in the mountains to rest and recover in, not just licence to continue working, dripping in fear and despair. While neither an antidote to the embodied horrors of treatment itself nor the carcinogenicity of the toxic economy, the genealogical approach to thinking about the self in the history of illness incidentally generates a new script for how the ill-self fits into not only the present but history. We will all one day be dead, like Keats, Stevenson, Lawrence, Lorde, Sontag and Sedgwick; saying this is not the same as just affirming death as a gift or seeing one’s self only within a tree of a single family. Rather it is a provocation to consider how to be part of a different kind of social ecology.

Conclusions: Realizing Embodied Finitude beyond Fear

By the time A Dialogue on Love was published, Sedgwick seemed to cultivate not only fearlessness in the face of dying and death but an openness to it:

The poem appears towards the end of Sedgwick’s book-length and chronologically organized psychotherapy dialogue. It also comes soon after the revelation that Sedgwick’s cancer has metastasized to the bones (p. 208), so likely written around the time of the talk quoted at the outset of the paper. Sedgwick’s Buddhist congeniality with death affectively and conceptually corresponds with the broader aims of a criticism seeking to resist denial of death and a contemporary environmentalist project seeking to reject Western thrusts of individualism and survival.

Although Sedgwick does not report the same degree of fear of dying and death that mark the other texts, this realization that surrender to rest, death and non-being is her preference comes after years of therapy and specifically towards the embodied practice of a new kind of subjectivity. Sedgwick’s surrender to rest, death and non-being mirrors the ideal dissolved earth-bound human subjects theorized in environmental thought today. The question remains however: How and to what extent should affect play a role in new debates around death and dying in a time of environmental crisis? How would exploring affects like fear change the contours of our scholarly debates?

To conclude, affect, and fear in particular, ought to be central in new scholarship about dying and death in medical and ecological humanities. This is because affect, for almost all critical psychology post-Freud and including Tomkins, is a psychosocial phenomenon. Sara Ahmed says we learn about affect by examining not what happens in the brain, for example, but by examining the ‘how of its distribution’ (2010: 162); thinking about the distribution of affect, fear is about how we relate to others and the world: regimes of fear establish certain ‘others as fearsome…such fantasies construct the other as a danger not only to one’s self as self, but to one’s very life, to one’s very existence as a separate being with a life of its own’ (2013: 64). Who or what is designated fearful, and how that designation happens, must be examined, alongside when and how fear actually arises in individual bodies. Reckoning with fear will make the scholarly investigations of death in the Anthropocene harder and weirder. And, given the ‘script entropy’ that can issue from fear, it will make our objects of inquiry more surprising and diverse. Moreover, given that the cadaver or corpse is Kristeva’s exemplary image of abjection or the part of the self we most readily reject in order to constitute the self in the world (1982: 3), one’s death as exemplary of primal fear itself must be examined too. To return to a question I asked at the outset: When we assert ‘we are all compost’ (Haraway, 2016), do we really apprehend our bodies as future worm food with critical interest or is the playfulness of the slogan a form of scholarly dissociation? If the memoirs examined here are indicative of anything it is that fear of dying and death is baked into the individualistic model of subjectivity that is driving ecological crisis, even in queer and feminist subjects and even when that fear utterly thwarts some of our most ambitious political ideals.

Thus, any proposed alternative model of dying and finitude – a death-affirming queer feminist reimagining of the eco-social order, for example – has to account for fear. If I am to imagine humans as prey for another creature or compost for the plants and take this position as something of an ecofeminist standpoint for scholarship in the Anthropocene, I need to ask how fear is involved in this assemblage. Which brings me to reiterate one of the reasons this article engages Tomkins: to demonstrate how all affects, including fear, are also unavoidably of and felt in the body. Despite the fact I should want to celebrate my innate compostability as a political position, perhaps I don’t want to because it feels too scary; that fear prevents me from realizing the most basic fact of our earthy condition. The point that Frank and Wilson make as part of their rationale for resurrecting Tomkins is that affect is not an optional aspect of the human experience; affect (which for Tomkins takes precedence over drives) is the primary motivator of human behaviour.

To be able to live as part of the earth, those critical of the capitalist pharmacy have to construct a viable path through fear, just as my own cancer surgeon did. He, like Jesus, promised to take away my fear of dying with radical cancer surgeries: ‘Trust us’ he said, ‘so you don’t have to fear’. And I enthusiastically consented to put my life in his hands. People submit to the current and problematic system primarily because it promises to alleviate fear, even if it doesn’t always deliver. At least trying to access this form of care is, apparently, less terrifying than the alternative: consensual premature death. Thus, to be part of building a new eco-social world order centred on a radical queer feminist necropolitics for an ecological future, the decentring of human and recentring of shared planetary environment has to promise, from the get-go, to work to mitigate fear, to recognize how cultural institutions promise to do so even if that promise is rooted in denial. We have to offer a different kind of care and community in fear’s wake.