Those engaged in the health and medical humanities continue to work through their attachments to biographical and autobiographical accounts of being ill (see Ahlzén 2019 for a recent overview). Many illness narratives are written and valued in the first-person – they communicate an individual’s perspective, they put the ‘person’ first. First-person narratives enable and encourage specialists in their interpretation. I have seen researchers appoint themselves as the natural custodians of illness narratives and patient experience, to the extent that the analysis of illness narratives becomes core to some definitions of what health and medical humanities should be. But there is little that is natural about who gets to produce first-person accounts or the techniques required to transform texts into a resource that may capture ‘patient experience’. What is frequently presented as a moral choice made by health and medical humanities scholars – to honour, enrich, activate and amplify the voices of patients – is also embedded in the material, organisational and distributive logics of healthcare systems, and the increasingly financialised institutions that place ‘experience’ within the economy of medical practice, service provision and rationing, and service improvement.
This might seem like an odd way to start a review about Anne Boyer’s The Undying, her account of breast cancer diagnosis and treatment in the US healthcare system. But after spending a year observing, interviewing, and often simply being in the company of women affected by breast cancer in a large NHS hospital in West London, my feelings about first person illness narratives have shifted. My work is part of a critical medical humanities project called ‘People Like You’: Contemporary Figures of Personalisation.[i] Our group has followed patients and their data into clinics, multi-disciplinary team meetings, and research programmes, to try and understand the NHS’ commitment to a more personalised health service. I am learning that different illnesses and their treatment produce multiple iterations of the person, as well as different understandings of the personal and impersonal.
To write about being unwell is to make public the perplexed and dynamic affiliation between persons and publics in both their singular and plural forms. Personalisation in and without medicine proceeds by the creation of different populations. One population that played a big part in my early encounters with The Undying was in the marketplace for Anglophone autofiction, alongside works written by Sophie Collins, Rachael Cusk, Joan Didion, Chris Kraus, Olivia Laing, Patricia Lockwood, Sally Rooney, among others. Like these writers, Boyer’s book and her person were consumed on social media before The Undying was in print, staged as a thing to desire like nothing else. When The Undying was published Twitter users could watch the appreciation ripple accommodating parts of the web, serialised in The Guardian and The New Yorker then reviewed in The Guardian, The New York Times, LA Review of Books, The Irish Times, NPR, among others. Boyer’s reviewers note a number of qualities I want to highlight because they reflect a central tension in The Undying as it walks the tightrope that links private and collective, personal and impersonal experience.
First, there is Boyer’s unsentimental, eviscerating, often tragicomic way of presenting her convictions, uncertainties and losses. Her minor-key enchantment at her own experience brings distinction but also helps to perforate the many expectations that she says accompany being and therefore writing as a ‘cancer patient’. Second, the book’s structural disavowal of chronology means that it also does away with circularity of recovery or the teleological promise of transcendence. “Cancer” she says early on the book “is a disease that presents itself as a disordering question of form” (2019: 7). Hence the book’s episodic structure, its running excursions, fantasies and reflections, its staged object lessons rendered as prose poems, where the book’s commitment to lyric gives approximate form to cancer’s disordering question. Under scrutiny is the presumption that illness should produce consistent narratives and the attendant presumption that illness narratives should have consistent effects, on those that write or those that read them. It’s in this sense that we can consider Boyer responding to some of the presumptions built into some medical and health humanities, not with answers but with disordering questions.
Boyer insists that diagnosis and treatment for breast cancer involves participating in an impersonal history of capital, pharmaceutical accumulation, environmental degradation, shifts in interpersonal and international relations, and what she calls the “smallness, shabbiness, self-absorption, inconsequence, personal finance, home economics, the social order” (2019: 99) ‘The undying’ names the process of individuation that renders cancers personal but, and also, provides the collective noun for members of cancer’s social order. “The history of illness,” she writes, “is not the history of medicine — it’s the history of the world — and the history of having a body could well be the history of what is done to most of us in the interest of the few” (2019: 30).
Cancer’s commingled scales of shabby self-absorption and world history mean that Anne Boyer can affiliate herself to a literary pantheon of women writers who were also diagnosed with breast cancer – Susan Sontag, Charlotte Perkins Gilman, Audre Lorde, Kathy Acker, Rachel Carson, Eve Kosofsky Sedgwick – a political canon of breast cancer writing that places Boyer beyond what she characterises as the conformity of breast cancer survivorship and its impossible expectations: “people with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heart-wrenchingly worse” (2019: 75). Highlighting such paradoxes gives her a power to speak on behalf of people like her, the activists and the poets. Yet literature affiliates in a way that medicine fails her; writing finds her a momentary sense of ‘we’ in ways that cancer and cancer treatment does not:
“My tumour started on a screen, and I returned it there. I entered its precise qualities into the prognostic calculator that promised to display the future in a pictograph. The dead women were represented by forty-eight dark pink frowning faces, the living ones by fifty-two smiling green ones. All of these faces were supposed to, like me, be forty-one years old and with exactly the same version of my disease, but none of these faces, living or dead, said why or when or who” (pp. 41-42).
Boyer does not just have every breast cancer but breast cancer of a particular kind, a version or edition. There’s no telling if the kind she has was the same as Sontag, Gilman, Lorde or anyone else. She describes a conversation she had with her oncologist about the staging, grading, and hormone-receptor status of her cancer. She is told she has an aggressive, Triple Negative Breast Cancer (TNBC), a category unknown to the literary women Boyer pulls into her guild, a category first used in 2005 (Brenton et al. 2005) as an umbrella term to describe the 15%-25% of cases in which chemotherapy is the only treatment available. TNBC cannot be treated with hormonal therapy, anti-HER2 agents, or antibodies (Pareja et al. 2016). In an era when breast cancer treatment is heralded as a frontier for more specific, personalised, precise, and preventative approaches to oncology, there are bodies that refuse to be matched or articulated, whose cancers do not take a form that can be targeted. As my colleagues have discovered, affiliating to a negative category and to the absence of a biomarker or target can be especially difficult. People can be left feeling as if they are orphans in an orphan population (Day et al. 2016). Boyer is treated with Adriamycin (a.k.a the ‘Red Devil’), a one-size-fits-all chemotherapy; “generalist in its destructions” (2019: 58). Her treatment gives “a clear sign of how little progress has been made” (ibid). But this judgement is partial. The price of progress in oncology is the transformation of what was known as progress; treatment, which was once available to many, is now stratified to smaller groups of people like you.
Towards the end of her book Anne Boyer laments that accounts of illness like hers gets “judged by its veracity or its utility or its depth of feeling but rarely its form, which is its motor and its fury, which is a record of the motions of a struggle to know, if not the truth, then the weft of all competing lies” (2019: 285). The form of this book, so intimately bound to a body that cancer grows in resistance to medical understanding, means that accompanying statements about the struggle for care are also individuated. “Cancer treatment” she writes, “appears to be organized for the maximum profit of someone–not the patients” and so “cancer patients are kept in the maximum circulation at a maximum rate” (2019: 62). The US healthcare system makes such statements isolated and isolating rather than universal, at least for now, and in the UK’s health service, cancer care is variously personalised, divided across different meanings of the person: biological and social; singular and plural. The NHS is geared towards rapid diagnosis and discharge, calibrated by financial and temporal targets that seek to minimise costs for taxpayers. So ‘personalised medicine’ is practiced in different ways in public and private sectors. Cancer treatment, as form of social organisation, cannot also be the universal or global political opponent that Boyer imagines it to be.
I interviewed a breast cancer oncologist earlier this year that told me “there are no more averages. I can quote averages from clinical trials, but we don’t know.” Patients describe lots of uncertainties alongside the burden of treatment. IT algorithms and predictive tools like the one described by Boyer produce scores that can be difficult to interpret and may have little benefit in terms of decision making. Moreover, cancers can be provisionally identified, ranked and typed, only to be re-evaluated. There are now many different kinds of breast cancer and some have well defined courses of treatment and others do not. There’s an ever-tenuous link between the cancer that grows inside your body and the body of writing that may emerge from it. “Illness” Boyer says, “is written in our bodies first and sometimes written in our notebooks later” (p. 43). And yet our powers to make a likeness between bodies and their cancers, as we compare writers and the formal or stylistic characteristics of their writing, are not infinitely plastic or adaptive – especially if the body is doing some of the talking.
Works Cited:
Ahlzén, Rolf. 2019. “Narrativity and Medicine: Some Critical Reflections.” Philosophy, Ethics, and Humanities in Medicine 14 (1): 9. https://doi.org/10.1186/s13010-019-0078-3.
Brenton, James D, Lisa A Carey, Ahmed Ashour Ahmed, and Carlos Caldas. 2005. “Molecular Classification and Molecular Forecasting of Breast Cancer: Ready for Clinical Application?” Journal of Clinical Oncology 23 (29): 7350–60. https://doi.org/10.1200/JCO.2005.03.3845.
Day, Sophie, R. Charles Coombes, Louise McGrath-Lone, Claudia Schoenborn, and Helen Ward. 2017. “Stratified, Precision or Personalised Medicine? Cancer Services in the ‘Real World’ of a London Hospital.” Sociology of Health and Illness 39 (1): 143–58. https://doi.org/10.1111/1467-9566.12457.
Pareja, Fresia, Felipe C Geyer, Caterina Marchiò, Kathleen A Burke, Britta Weigelt, and Jorge S Reis-Filho. 2016. “Triple-Negative Breast Cancer: The Importance of Molecular and Histologic Subtyping, and Recognition of Low-Grade Variants.” Npj Breast Cancer 2 (1): 16036. https://doi.org/10.1038/npjbcancer.2016.36.
Notes:
[i] I’d like to thank Sophie Day for her feedback on this review, which is influenced by the fieldwork we have been doing together. ‘People Like You’: Contemporary Figures of Personalisation is funded by a Collaborative Award in the Medical Humanities and Social Sciences from The Wellcome Trust, 2018–2022. The Project is led by Sophie Day (Goldsmiths, University of London), Celia Lury (Warwick University), and Helen Ward (Imperial College London)
William Viney is the author of Waste: A Philosophy of Things (Bloomsbury, 2014) and director of the documentary short Twins on Twins (The Derek Jarman Lab, 2017). He completed a three-year Leverhulme project entitled The Wonder of Twins at Durham’s Institute for Medical Humanities before joining Goldsmiths College as a Research Associate on the People Like You project.
Anne Boyer’s book, The Undying: A Meditation on Modern Illness (2019) is published by Allen Lane.
