Styles of Radical Illness
Anne Boyer diagnoses the lies we still tell about cancer
Early in The Undying—the poet and essayist Anne Boyer’s mosaic of memoir, commonplace book, and manifesto—she quotes from the diary of the nineteenth-century novelist Fanny Burney, who, nine months after she had endured a mastectomy without anesthesia, was still trying to cordon the event from her consciousness. “I could not think of it with impunity!” she writes—that is, she saw no option of recollection that would come free of punishment. She meant, most likely, the punishment of reliving the event, but it’s hard not to hear a deeper knowledge that the surgery’s traumatic pain cannot be long dwelled on without, in some sense, putting her in the wrong: that articulating the socially unspeakable, even to herself, was a kind of crime—estranging her from the particular niche, with all its rules and regulations, marked out for a person of her sex, class, and homeland. Of course, she did think of it—did face the horrific memories, write them down. To name the particular violence done to her own body, Burney was willing to risk amputation from the social body.
That kind of penalty still exists. Anne Boyer, who lives in remission from what is called triple-negative breast cancer—the kind that is only potentially treatable with a regimen of midcentury cytotoxic chemotherapies paired with surgery, radiation, or both—spends much of The Undying, her viciously agile song-cycle about, in part, speech and its price, identifying a deafeningly loud pseudo-discourse that amounts to little more than the old social reticence around illness, especially cancer. As she notes, the new rhetoric is in its way as stifling as the old silence: upbeat affirmation shapes the narrow but babbling vocabulary of runs, walks, ribbons, and associated merchandise. “Only one class of people who have had breast cancer are regularly admitted to the pinkwashed landscape of awareness: those who have survived it,” Boyer writes. “To those victors go the narrative spoils.”
In this aggro-sentimental soundscape, the tale on loop is one of “‘surviving’ via neoliberal self-management,” of being “cured with compliance, 5K runs, organic green smoothies, and positive thought.” To strike a downbeat note is deviant: should the sick patient complain or speak of loss, she will quickly be punished. She might be gaslit to the creeping verge of madness, given the silent treatment (in the form of others’ relentless “focusing on the positive,” for example, while they ignore her own darker situation), or simply overpowered by the chorus of strenuous optimism.
Of course, this news—that we ignore the deeper realities of illness —is not new. But of late a robust counternarrative has sprung up: these days it can seem as if every writer with an illness has ushered us to the sickbed to show us how things really are—the trespasses, the anxieties, the blips of humor inherent in illness’s surrealism. Colm Tóibín and Tim Parks detail the nadirs of their urologic and rectal exams. Sarah Manguso describes eating French fries before undergoing plasma filtration, then watching an opaque film of fat slide out of her bloodstream into the machinery. The poems of the late Max Ritvo chart his body’s swift regression to the rickety dependence of one who is “house-trained, but not entirely.” And Jenny Diski wrote at length about the banal, unglamorous realities of dying of lung cancer in the London Review of Books, pieties be damned.
Boyer knowingly works in the shadow of other radically honest or anti-reductive accounts, most notably those of Audre Lorde and Susan Sontag. Both had breast cancer and eventually died of still other cancers—liver in Lorde’s case, myelodysplastic syndrome in Sontag’s. Lorde’s Cancer Journals anticipates Boyer’s queasy attention to the financial and physical particulars of the medical industry: how much does X cost, and who gets it (or doesn’t)? Where does the skin get cut? Sontag wrote Illness as Metaphor to fight the inane and pernicious imagery barnacled onto the Western vocabulary of illness, to argue that “the healthiest way of being ill is one most purified of, most resistant to, metaphoric thinking.” Boyer takes up this attack on linguistic chicanery while resisting what she deems Sontag’s “authorial stubbornness,” the ever-so-slightly reactionary reticence “that does not permit ‘I’ and ‘cancer’ to be joined in one unit of thought.”
Boyer lets the first person and cancer rattle each other, cheek by jowl, both in the aspects of The Undying that serve as pure chronicle of illness—first I got the biopsy, then I got chemotherapy, and so on—and in her acknowledgment of cancer’s simultaneity all throughout the scholarship, note taking, writing, and revision that became The Undying. After being diagnosed, she comes across the You Tube channels of anti-establishment cancer patients Christina Newman and Coopdizzle. She Googles the cognitive changes associated with chemotherapy because her oncologist mentions them offhandedly as they walk to her infusion chair. Cancer is the taskmaster, the overbearing writing teacher forever offering prompts. Even the physical positions cancer inflicts—hours supine in sickbeds and infusion chairs—seem to produce, in Boyer’s magnificently peevish turn of phrase, “a crisis of excessive imagining.”
Yet what is most striking about The Undying is how much of it would stand unchanged if the disaster that imposed itself on Boyer’s life had not been a highly lethal breast cancer but rather multiple sclerosis or opioid addiction or fibrotic lungs from having worked as a coal miner or an asbestos manufacturer. As The Undying unfolds, it becomes more and more evident that the particulars of cancer are, for Boyer, contingencies that arrive and array themselves over rigid social structures that had already formed their carapace around Boyer’s world. Before her diagnosis, she is a single parent and an untenured teacher in Missouri, facts that became essential to her experience of illness. For Boyer, sickness is that which bares and enlarges a situation already present but chronically obfuscated—the economics and logistics of single parenthood, for example, or our nonsensical, barely gestural forms of “insurance,” or the rapid diminishment of safe, shared water and air in an era of planetary rapaciousness. In her previous book of prose poetry, Garments Against Women, Boyer called these predicaments the “inadmissible information”:
Inadmissible information is often information that has something to do with biology (illness, sex, reproduction) or money (poverty) or violence (how money and bodies meet). Inadmissible information might also have to do with being defanged by power (courts, bosses, fathers, editors, and other authorities) or behaving against power in such a way that one soon will be defanged (crime).
Breast cancer is one scenario of many in which the inadmissible begins to clamor at the gate.
Much as Sontag objected to cancer’s being singled out as the great receptacle for modern American “punitive or sentimental fantasies,” Boyer works to shift our attention away from “cancer” to the “white supremacist capitalist patriarchy’s ruinous carcinogenosphere,” a deliberately bulky epithet heavy with the trappings that fortify power’s outsized apparatus. But where Sontag scoffed at the idea of cancer as a manifestation of “the sin of capitalism” or “Nature taking revenge on a wicked technocratic world,” Boyer recoils at the idea that the search for macroscopic causes of cancer is necessarily a quest of the conspiracy-minded fringe: “Talk of shared environmental etiologies is condemned as paranoid, but the loneliness of genetic fatalism runs rampant, and so many people believe they were born with cancer’s inevitability inherent in them to be expunged only by drug companies.”
Boyer does not quite make the diagnosis that engines of profit deliberately make us sick—in what would amount to a kind of systemic Munchausen’s by Proxy—though she lands close to that breach of plausibility. Whether or not one accepts this argument, however, the warped priorities Boyer identifies have long been recognized by physicians like me (a general internist and teacher in a major urban hospital), who point to our collective expenditures as emblems of our attention.
As a nation, we attend greatly to biomedical research ($39 billion in 2019 to the NIH, for example) and less so to the environment ($8 billion to the EPA). Medicare and private insurers reimburse far less for the counseling a physician offers than for the procedures physicians perform, often irrespective of their relative utility or wisdom. These are crude and assailable examples, but they point to our natural attraction to the drama of vanquishment: to “beat” a disease holds more élan than ensuring that certain possible problems never, in fact, arise.
We know who benefits from the current disease model of cancer: those successfully treated by contemporary therapy (of whom there are, in fairness, many millions) and those whose livelihoods or profit margins derive from those treatments. Would enlargement of our current conceptual model of cancer’s epidemiology, prevention, and management—by looking more extensively outside the body, at the troposphere, the water table, the supply chain, and regulating or revolutionizing accordingly—potentially enlarge or alter who benefits, as well? Perhaps this kind of revision and expansion of our collective thinking on cancer would better serve those with malignancies currently untreated or unsuccessfully treated (of whom there are also many millions).
Perhaps this would come at some “market pain,” as the wonderfully corporeal expression goes, for others currently benefiting from the status quo. Though cancer is the contingent occasion, the lament—the anger—Boyer summons is capacious: “To feel as I felt during cancer treatment is to feel like nothing at all but the saddest opportunity for profit in a world diminished so far ahead of the event of cancer that this additional diminishment is eviscerating.” Replace “cancer” with the disease, the political event, the personal disaster of one’s choosing and the thought holds. One was already operating at a loss; the event simply throws the balance sheet in one’s face.
Thus Boyer’s real subject becomes the several varieties of precarity (social, economic, artistic) that cancer swiftly unobscures, rather than the cancer itself. This moves The Undying from the canon of the illness memoir or illness sociology into the newly burgeoning subgenre of accounts of mass indenture and debt, such as Malcolm Harris’s Kids These Days or Caitlin Zaloom’s Indebted. Although Boyer’s book has but a handful of dollar figures—the only specified personal expenses being her rent ($850 a month) and the price of her literal sickbed ($280 for a secondhand four-poster)—because she is a poet, and because the magnitudes boggle, the full height and depth of time and money spent, owed, borrowed, stolen, and condemned acquire a dark, sometimes loopy magnificence. The etymology of one of her chemo drugs, known variously as Adriamycin or doxorubicin, leads her to dub it “the satanic jewel of mortality on the shores of Venice,” which reads like a rough draft by a young Keats or Browning. The outlandish toxicity and expense of doxorubicin and other drugs she is given are so awful that one struggles against abstraction in understanding how bad, how much.
A full accounting would provoke enormous, intractable fear—exactly how much a needle will hurt, exactly how often one will vomit—but perhaps worse, irremediable guilt at one’s role as a human toxin, a living carrier of poisons so potent that they are detectable in the water supply for years, and could burn a nurse’s skin or sicken a hospital janitor if precautions are not fastidiously taken. Boyer’s articulation of this strain on the moral and aesthetic imagination makes for one of the book’s most formidable passages. “It is necessary to believe that you are a person worth keeping alive,” she writes, but how can this be possible when “the Himalayan yew tree, from which one of my chemotherapy drugs is harvested, has been endangered since 2011,” and “the cost of one chemotherapy infusion was more money than I had then earned in any year of my life”?
My problem is that I wanted to live millions of dollars’ worth of life but could never then nor now answer why I deserved the extravagance of this existence, why I consented to allow the marketplace to use as its bounty all of my profitable troubles. How many books, to pay back the world for my still existing, would I have to write?
Edmund Burke, in his 1757 treatise A Philosophical Enquiry into the Origin of Our Ideas of the Sublime and Beautiful, suggested that the sublime “operates in a manner analogous to terror.” Over and over again, Boyer shows us the sublime vistas that open unexpectedly within the landscape of having cancer, the landscape of being broke. And her report of the heady swirl of cancer’s terrorizing, expensive, nearly gorgeous materials feels, when she wrests it back into language, like a form of reclamation out of the hands of predatory creditors. Whereas for Fanny Burney no impunity could be found, Boyer’s surges of poetry suggest that an abundance of writerly attention might in fact pay off her social and ecological debts—the implication being that the value of an accurate description of the ravages of cancer treatment might lead us, the public, to forgive the patient her excesses, the gross maraudings of her illness, and the way in which it demands a similarly ravenous self-preservation on the part of its unlucky victim. Perhaps Burney, too, unconsciously nursed the same belief, or else why write her story?
In Garments Against Women, Boyer wrote of the brief reprieve “after one has been very ill and is not that ill anymore.”
I dressed a young man in a leopard fur coat and sent him walking through the neighborhoods like that. There was a rising interest in tango dancing. I allowed myself to eat liberal amounts of fresh fruit. I had some words in my head, rather some phrases, like “as the flea goes we go and pick up that grief” and “steam boats spring” and “the frontier is soily.”
This prodigality verging on joy comes to rest in phrase-making, that is, at the threshold of the act of writing. By positioning sickness and writing as opposing faces of the same coin—when I am not sick I can write; when I am sick I cannot—Boyer also makes apparent their strange kinship. The sick days and the writing days are both potentially subversive in their resistance to what she calls, in The Undying, “our time of overwhelming and confused chronicity” in which “each minute [is] misunderstood to be an empire for finance.” Sickness takes its time, relapses and remits, confounding the actuaries. Boyer’s rhetorical question about how many books she would have to write to “earn” her tenuous health is just as defiant of logic, because any state in which poetry could happen is necessarily a state of squandering, of heedlessness and time used “poorly”—in the very American sense of time not spent doing what it would take to make a sale. Sickness and writing are the dual nemeses of hustle and thrift, and provide the wary meeting grounds for debt and extravagance.
Perhaps in part because these meetings are unsanctioned, the medical field places subsets of the chronically sick—those with implanted “ports” and catheters through which fluid, blood, and medications can readily pass—into what can feel like provisional, even collapsible, spaces. The current health care system does not easily accommodate stillness. Appointments, procedures, and hospital stays are all completed as quickly as possible, in surroundings that reflect these goals. It nearly surprises me when a space like a dialysis center can be found through a program like Google Maps, so strenuously does their architecture self-efface into the surrounding shopping mall or office park. Boyer turns her attention to the nomenclature of the so-called “cancer pavilion,” which to her suggests “jousts and battlefields…a place for generals and kings, almost always temporary and luxurious architecture erected for the purposes of the powerful, adjacent to something else.” Beds, redolent of stasis, are absent or few, while cancer patients, like money or goods, “are kept in maximum circulation at a maximum rate.” If the word pavilion smells medieval, it is not the patients who are king.
Boyer’s reflections on pavilions put me in mind of the one I knew best—“The Pavilion” was the name of the penthouse floor in the hospital in which I trained as a resident doctor. Patients could pay a grandiose surcharge to be moved from the ordinary wards to one of these upper rooms, whose amenities included a sitting room with nonvinyl furniture, a larger and more encyclopedic television, and meals featuring a bespoke list of entrées not available elsewhere in the hospital. This pavilion’s goal was to conceal, as much as possible, its true identity as a hospital ward. Paradoxically, although as a class these patients were utterly unlike the harried group that Boyer counts herself among—those hustled from chair to chair, still working and driving because they ran out of sick days, chasing down insurance loopholes and prescription discounts—the psychology of both “pavilions” felt similar. The privileged must be made to feel un-sick, as though a hospital were merely a form of glamping. Transience, when expensively staged, can reassure the well-off patient that he or she has not definitively immigrated to the land of illness. Whether this kind of theater is right or helpful is an open question.
“Nothing I’ve written here is for the well and intact, and had it been, I never would have written it,” Boyer writes, in another of her implacable and glinting epigrams. What would “well” writing be?
One answer rife in medical training is the notion of an “illness script.” Articulated as a pedagogical concept in the 1970s but surely present much earlier, the illness script is “an organized mental summary or construct that clinicians use to create clinical memory.” In practice a good script has only a few words or images: this fever in this gender plus that rash plus this many days, equals X. Truck driver with a few days of leg pain? Venous thrombus. Diabetes and a new tan? Hemochromatosis. Such scripts are of course at risk of wild error—some truck drivers have gout, and some diabetics simply like the beach. Yet often a goal of the physician-in-training is to memorize as many scripts as possible, so that active thinking need not happen during rounds or in office appointments, and can be used somewhere else more profitably. It is simultaneously a form of cognitive rationing and cognitive investment banking, perhaps the ultimate limit in a trajectory of health care that began in caritas and ends in efficient processing of human volume. It would, of course, be nearly impossible to care for the expected number of daily patients without it. I “bank” illness scripts, and use them all the time, yet I see how unhappily and unappeasably they sit alongside my life as a reader and a writer, which must be anti-heuristic to exist at all. “Beyond [medicine] and behind it and beneath it are all the other systems, family race work culture gender money education, and beyond those is a system that appears to include all the other systems, the system so total and overwhelming that we often mistake it for the world.”
Boyer writes this to shred the script, to clear the page for genuine composition, for untimeliness, extravagance, fresh fruit and men in fur coats and pharmaceutical poisons that turn into jewels. This is a stern, not whimsical, insistence—an insistence that we not mistake protocol, currency, or mere circulation for anything like the world. All the same, we ought to be both shrewd and merciful enough to acknowledge that the charity runs, the ribbon swags, even my own clinical “scripts” are just so many imperfect bastions raised against the joint sieges of death and bewilderment. And yet it is only by dismantling these fortifications, as truthful books do, that we might at last see our position and plot how we might live—and heal—more candidly and justly, even as our dying remains at hand.
Laura Kolbe practices medicine and teaches at Weill Cornell Hospital in New York. Her poems, essays, and fiction have appeared in American Poetry Review, The New York Review of Books, VQR, and elsewhere.