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6 books that offer new perspectives on illness
Illustration Callum Abbott

6 books that offer new perspectives on illness

From Hervé Guibert’s uneasy ruminations on friendship amid his battle with AIDS, to Jade Sharma’s caustic humour, and Jamaica Kincaid’s clear-eyed, unsentimental writings, these books offer a much-needed perspective in the pandemic

Nearly a year into a pandemic, where units of time can seem redundant, it feels at points like an indefinite stay in a hospital waiting room. While for some people the effects have been extremely acute, for many, it’s been a more durational experience. The early pandemic frenzy, as captured in many iterations of lockdown diaries, has ebbed out to become something more muted, but still no one I know is acting quite themselves. 

Before, if you’d asked me to picture a pandemic, I don’t think the last ten months of coronavirus is what I’d have expected. With that in mind, this is a reading list of six books by authors that offer different ways of thinking about illness. United by their lack of sentimentality, they all eschew typical narratives of pain and recovery. Hervé Guibert is galvanised by his AIDS diagnosis: “When I’d learned I was going to die, I’d suddenly been seized with the desire to write every possible book.” For Anne Boyer, breast cancer is also a story about life under capitalism, and Jamaica Kincaid doesn’t necessarily love her dying brother. 

TO THE FRIEND WHO DID NOT SAVE MY LIFE – HERVÉ GUIBERT

Hervé Guibert began writing To The Friend Who Did Not Save My Life in the last week of 1988; he has just been diagnosed with AIDS but is convinced he can survive. He plots the novel against the uncertain coordinates of this new virus: “I have a sense of the structure of this new book I’ve been harbouring within myself all these last weeks, but I don’t know how it will unfold in its entirety; I can imagine several endings, all of which fall for the moment under the heading of premonition or desire, but the whole truth is still hidden from me.”

Written with brutal clarity and tenderness, To The Friend Who Did Not Save My Life is as much about friendship, intimacy, and betrayal as it is about sickness. There is Guibert’s betrayal by the eponymous friend Bill, a drug company exec who dangles the mirage of a vaccine. But Guibert too commits his own betrayal, that of his close friend and neighbour Michel Foucault, who he refers to as Muzil in the book. Revealing publicly that the fiercely private Foucault did not die of cancer, the novel brought Guibert a kind of infamy in France. Is anyone entitled to take this kind of licence with someone else’s suffering? Guibert justifies the breach of trust through the bond created by their mutual sickness. The unease in whether that’s true is part of what makes this brilliant.

MIT Press

PROBLEMS – JADE SHARMA

In spite of how often I recommend Problems, it’s a novel I still struggle to describe, I think because of the extent to which it doesn’t play to type. Maya, the narrator, balances her heroin dependency with a failing marriage to alcoholic bartender Peter. Seven months in, she’s already pursuing an affair with her former professor Ogden: “When I imagined myself through Ogden’s sixty-three-year-old eyes, I felt hot”. Her job is about to end, an unfinished master’s thesis looms in the background. She can’t call her mother, who’s dying of MS, without arguing. Though it’s not wrong to say it’s about addiction, depression, disordered eating, and failure, Problems is a lot more than the sum of these parts. Unsentimental, caustically funny, and flippant, it is also moving and genuine in a way that contemporary writing often fails to be. (Sharma too is one of the best writers on sex that I’ve read.) I bought it on a whim and read it compulsively.

Sharma died last year, a loss that I have no real right to feel sad about, but I do anyway. She just – both in her fiction and in interviews – seems so likeable, if I can use that word. That this is the only novel we’ll get from her, too, compounds the feeling. “Today: a lot of novels didn’t come out that should have, and some did come out, like mine.” she said, in a 2016 account of Problems’ publication. “The longer you stay in bed the worse it will be. Sometimes I can slip into the day like Jason Bourne into a crowd. Other days I have to drag myself out of bed like a mother who has had it up to here.”

Tramp Press

THE UNDYING – ANNE BOYER

In 2014, having just turned 41 and as the single mother to a teenager, the poet and essayist Anne Boyer learned she had triple-negative breast cancer. Her resulting memoir, The Undying, is a work of singular fury and beauty, kaleidoscopic in the way it maps Boyer’s experience to the wider context and history of cancer, medicine, and capitalism. Boyer details the brutality of her own treatment (after her double mastectomy, itself considered an outpatient procedure, she must return to work in 10 days) alongside reflections as multiplicitous and far-reaching as the experiences of Susan Sontag, Audre Lorde, and Kathy Acker, the gendered nature of care, the industrialised history of cancer treatment, and the co-option of the pink ribbon symbol by corporations. 

Boyer’s great defiant anger needlepoints in her unflagging insistence that cancer, and its treatment under capitalism, is political. The Undying then can be read as a spiritual descendent of the ACT UP movement. At one point she writes, “If I die from this cancer, I tell my friends, cut my corpse into pieces and send my right thigh to Cargill, my left hand to Apple, my ankles to Proctor and Gamble, my forearm to Google.” An echo of radical artist David Wojnarowicz’s words, “If I die of AIDS – forget burial – just drop my body on the steps of the FDA.” 

Penguin 

CONSTELLATIONS – SINÉAD GLEESON

For Sinéad Gleeson, it all begins when the synovial fluid in her left hip starts to “evaporate like rain” as she turns 13. By the time she receives a diagnosis of aggressive Acute Promyelocytic Leukaemia at the age of 28, she has endured well over a decade of surgeries and hospital stays. Constellations (which I think is a truer word for the texts and poems collected here than essays) is both a universal consideration of pain and an intimate account of inhabiting a female body in Ireland. She writes of a school trip to Paris, with a stop off at Lourdes, in 1988; demand is so high for places (because of Paris, not Lourdes) that a raffle is held to decide who will go. “I automatically qualify for a place: my crutches are the equivalent of a playoff clean sheet,” Gleeson writes. “All eyes are on me, because they think I’m their chance of a miracle.” 

‘Twelve Stories of Bodily Autonomy’, first published on the eve of the repeal of the Eighth Amendment, is dedicated to “the 12 women a day who leave”. In parts, Constellations is breathtaking in its scope and pace. In particular, ‘60,000 Miles of Blood’, which sees Gleeson span her own 150 units of blood transfusions, the gendered nature of blood itself (male bloodshed historically equating to valour, female bloodshed to the mundane), the appropriation of menstrual blood by female artists, and then veer back to the drugs she must take during chemotherapy to stop her periods. 

Picador

MY BROTHER – JAMAICA KINCAID

Kincaid is inimitable, yet criminally underread in the UK, though I’m hopeful that a new deal with Picador is set to change this. Across 2022 and 2023, the publisher will reissue 10 of Kincaid’s works. Among them is My Brother, a recounting of her younger brother Devon Drew’s death of AIDS in the mid ‘90s. Kincaid didn’t really know her brother. 13 years his senior, she’d already left home by the time he was three. But when she learns that he is sick, she knows she will record his end: “I became a writer out of desperation, so when I first heard my brother was dying I was familiar with the act of saving myself: I would write about him.” Devon has led a chaotic life. A liar, thief, and heavy drug user, at only 14 he was involved in a murder. Once diagnosed, in the full knowledge that he may infect them, he continues having sex with unwitting partners. 

Kincaid writes with an authority that would be impossible to carry off if she wasn’t so correct. She is often described as frank, and I find that I come to her work when I want to read an account of things as they are, not as we’d like them to be. In My Brother, she refuses to let sickness become a sentimental balm, instead interrogating the value and meaning of “my family – that is, the family I grew up in.” Love is not assumed. “My brother had died, and I didn’t love him,” she writes. “Or, at any rate, I didn’t love him in the way that I had come to understand love, something so immediate it was always in front of me even when my back was turned away from it.” She balances this with a wider consideration of the implications of an AIDS diagnosis in the ‘90s in her native Antigua, rather than, say, New York.

Farrar Straus Giroux

A MANUAL FOR CLEANING WOMEN – LUCIA BERLIN

“I’ve worked in hospitals for years now and if there’s one thing I’ve learned it’s that the sicker the patients are the less noise they make. That’s why I ignore the patient intercom,” begins ‘Temps Perdu’, one of the sharp, confounding short stories that make up Lucia Berlin’s A Manual for Cleaning Women. Relatively little-known when she died in 2004, the 2015 publication of this collection brought a whole new audience to Berlin’s work. Though somewhat mystifying, Berlin’s obscurity gave her several lifetimes worth of experience in something many writers today know little about: low-paid, low-status jobs. E.R. nurse, ward clerk and hospital-switchboard operator among them. Berlin chronicled this time in hospitals and on psych wards with a clear-eyed wit and ability to cover a novel’s worth of action in a single page, as in ‘My Jockey’, which has another perfect opener: “I like working in emergency – you meet men there, anyway. Real men, heroes. Firemen and jockeys.” 

Picador