There are, according to the sociologist Arthur Frank, three kinds of illness narratives: the restitution narrative, the chaos narrative, and the quest narrative. The restitution narrative, he wrote in his influential book The Wounded Storyteller (1995), is the one favored by Western capitalism: it is the story told in the TV commercial urging its recumbent viewer to buy cold medicine or the hospital brochure printed in calming colors; its plot is the ill person healed by the marvels of modern medicine, declaring, “Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again.” The chaos narrative, told from within the period of illness, “imagines life never getting better” and struggles for coherence. But in the quest narrative, illness is a journey: along the way the sick person gains something—usually insight, meaning, or understanding—through the experience of suffering.
Anne Boyer’s The Undying is a book about illness that doesn’t fit easily into any of these categories. A reader enters it expecting a memoir about Boyer’s journey through a diagnosis of and treatment for breast cancer but quickly learns that the book (despite the publisher’s classification on the back cover) does not intend to meet such an expectation. Instead, it is made up of varied short sections, including philosophy, examinations of statistics, thought experiments, brief pieces that resemble prose poems, ancient texts, recent scientific studies, and even a few illustrations. It incorporates and exhibits all three of Frank’s narrative types, but it ultimately resists them all.
Boyer, a self-proclaimed Marxist feminist, tells her story only in the service of a larger project—to explore breast cancer as comprehensively as possible: as a disease, as a historical entity, as a means of exposing the precarity of the individual inside larger capitalist systems. “Cancer,” she writes,
is in our time and place one of the most effective diseases at eradicating the precise and individual nature of anyone who has it, and feminized cancers—in that to be seen as a woman is also to be, in a way, semi-eradicated, this eradication deepened by class, race, and disability—even more so.
The Undying, which won the Pulitzer Prize last spring and has recently been published in paperback, opens with a discussion of influential women who also had (and most of whom died from) breast cancer: Alice James, Rachel Carson, Jacqueline Susann, Susan Sontag, Charlotte Perkins Gilman, Audre Lorde, Kathy Acker, Eve Kosofsky Sedgwick, and Fanny Burney. Each of them wrestled with how and why to speak or write about her experiences with the illness; if women’s stories are often neglected, women’s illness stories are even more so. Carson, who was diagnosed while writing Silent Spring (1962)—a central work in the cultural and environmental history of cancer—never spoke publicly of the disease that killed her four years later. Sontag’s Illness as Metaphor (1978) directly takes up the “conventions of concealment” surrounding cancer, exploring how the mystifying language used to describe the illness as a “fight” to be won resulted in widespread shame and secrecy, so that the name of the illness, “felt to have a magic power,” came to be rarely spoken out loud. Though written after Sontag’s own cancer treatment, it is distinctly not a personal book. Lorde directly addressed the silence surrounding cancer in the 1970s with her book The Cancer Journals (1980)—radically, Boyer notes, in light of the decades before, using “the words ‘I’ and ‘cancer’ together.”*
Boyer is a poet and essayist. She has previously written four chapbooks and three books, most recently Garments Against Women, a collection that blurs the edges of poetry and prose as it examines the political economy of literature and what she calls “literature’s uses against women.” When she was diagnosed at the age of forty-one with triple-negative breast cancer, one of the most aggressive forms, she was raising a daughter alone, living on a modest teaching salary in Kansas City. Well-meaning friends and family sent her illness memoirs, generally quest narratives, in which a sufferer comes through an affliction having found some kind of meaning. These books were not solace for Boyer so much as spurs.
She is ambivalent about the word “survivor,” with its false implication that there is a reliable path that can be followed to evade death. She states in The Undying, “I do not want to tell the story of cancer in the way that I have been taught to tell it. I would rather write nothing at all than propagandize for the world as is.” She argues that to write only of oneself, as if one lives in a vacuum outside of larger cultural and historical structures, is to avoid grappling with the larger systemic ways the disease has been monetized in the United States, and to ignore the way a person, having become a patient, has entered a broader capitalist story that engulfs the individual one:
Breast cancer’s industrial etiology, medicine’s misogynist and racist histories and practices, capitalism’s incredible machine of profit, and the unequal distribution by class of the suffering and death of breast cancer are omitted from breast cancer’s now-common literary form.
After Boyer is diagnosed, she writes, “The nurses give me a glossy binder with a photo of a smiling silver-haired woman on its cover. The title is Your Oncology Journey, but I am certain that trip can’t be mine.” She wants to make clear that “to be diagnosed with cancer right now is not to live in a binder’s trajectory: your oncology journey is a lie.” The images “beaming out from cancer’s instructional materials” are sanitized and scrubbed, bearing “no mark of suffering, not from cancer, but also not from anything else—not work, not racism, not heartbreak, not poverty, not abuse, not disappointment.”
Boyer observes that a cancer-narrative writer risks becoming a cog in the “machine of profit” as she narrates her “journey” through the oncology industry. With this she echoes Barbara Ehrenreich’s 2001 essay “Welcome to Cancerland,” which also takes up the corporatization of breast cancer and the “relentless brightsiding” that transforms the illness into a “rite of passage” for women, like gray hair or menopause. Boyer refuses to succumb or contribute to this phony cheer:
The system of medicine is, for the sick, a visible scene of action, but beyond it 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.
Her book, then, may be classified as a memoir, but it is really a manifesto, declaring that the telling of a single story is in fact a lie, an act that elides the full sinister horror of the system of cancer. She uses the first person but also the second and third; she uses a “you” and more often a “we”—a collective voice that creates a sororal sense, in conversation, it seems, with Sontag’s statement (which Boyer quotes in her prologue) that “there is no ‘sororal’ death.”
Although Boyer resists the memoir genre, and rages at it, she inevitably writes inside of it. This wrestling against her own—or any singular—experience, which gives her book its power, occasionally cripples her; she dodges and weaves out of the way of her story so much that she sometimes risks losing her reader’s attention. She is aware of this, however, and lets her resistance show, so that the reader in turn finds herself questioning how her own need for a coherent story implicates her in the systems she is reading about.
In ancient Greece, before the existence of the modern hospital, sick pilgrims sought out asclepeions, or healing temples, where they would sleep and wait for prescriptions, delivered in dreams, from the god Asclepius. Aelius Aristides, a Greek orator who became sick at the age of twenty-six, was one of these pilgrims, suffering from a number of ailments that plagued him for the second half of his life. He wrote an account called Hieroi Logoi (Sacred Tales) in the early 170s: a record of his prescriptive dreams, his symptoms, and his personal relationship with Asclepius. Aristides opens his Sacred Tales by addressing the difficulty of putting the experience of illness into words, using a quote from The Iliad that Boyer also takes as her book’s epigraph: “Not even if I had ten tongues and ten mouths.”
Boyer introduces Aristides early on in The Undying and returns to him throughout the book, using his work to underscore the ancient struggle of writing about illness and to explore the ways that medicine has changed and stayed the same through the centuries. “Once we were sick in our bodies,” she writes of seeing her tumor on a screen before she felt any discomfort. “Now we are sick in a body of light…. Our senses tell us almost nothing about our illness, but the doctors ask us to believe that what we cannot see or feel might kill us, and so we do.”
She points to the similarities between the kind of faith that is needed to believe one is sick from an image alone, explained with authority by a doctor, and the faith of Aristides and his fellow pilgrims, who followed the prescriptions received in their dreams. For Boyer, the modern-day asclepeion is the cancer treatment center, or the “cancer pavilion,” where patients submit to “a cruel democracy of appearance: the same bald head, the same devastated complexion, the same steroid-swollen face, the same plastic chemotherapy port visible as a lump under the skin,” moving through rooms where poisons are injected into their bodies.
As the ancient Greeks once searched their dreams for prescriptions, Boyer says, now we search the Internet, finding in statistics “an ulterior mysticism.” On a website called LifeMath that promises to “display the future in a pictograph,” she enters her age and the precise qualities of her tumor in order to receive a prediction of her chances of survival. She watches a vlog kept by a woman who refused chemotherapy and chose to treat herself instead by diet, only to reverse her decision when she became more ill; Boyer, having considered this woman’s example, accepts chemotherapy.
She follows another vlogger who was diagnosed with the same strain of triple-negative breast cancer the same year as Boyer but who died two years later at thirty-four: “My treatment worked and hers didn’t, and there is no way to know how or why.” Kathy Acker, who was criticized for refusing chemotherapy, would likely have died either way. “A cancer like Acker’s, one that killed her in eighteen months, had a similar two-year death rate whether or not a patient underwent chemotherapy,” Boyer writes. Her point is that on a fundamental level, especially with the more aggressive forms of breast cancer, there is no sure path to follow to survive. “Cancer kills people, as does treatment, as does lack of treatment, and what anyone believes or feels has nothing to do with it.”
Boyer points, again and again, to the way the standard narratives around cancer ignore how US health care and its focus on profit affect our understanding of where the disease comes from:
We are given only the noisy half of probability that [cancer’s] cause is located inside of ourselves and never the quiet part of probability that cancer’s source pervades our shared world. Our genes are tested: our drinking water isn’t. Our body is scanned, but not our air.
We like to believe the myth of the “survivor,” she observes—that good things happen to good people—because it helps us avoid looking at all the ways that we are implicated in our own nightmare. She wants the reader to see that “the moral failure of breast cancer is not in the people who die: it is in the world that makes them sick, bankrupts them for a cure that also makes them sick, then, when the cure fails, blames them for their own deaths.” Despite stories of heroic survival, metastatic breast cancer has no cure. In the United States, a woman dies of breast cancer every thirteen minutes.
We are still, in 2020, in the realm of dreams.
We learn very little about Boyer’s life in The Undying beyond the basic outlines of her circumstances while she was sick. Her daughter is mentioned in passing on page 37, and not again until page 94. Boyer makes clear that she is not asking for our sympathy; in fact she doesn’t want it. What details of her experience we do get she includes reluctantly, to illustrate her larger points about the way our country treats those who are outside of traditional family structures and how the health care industry punishes those who don’t have money to spare.
“In the United States,” she writes, “if you aren’t someone’s child, parent, or spouse, the law allows no one else guaranteed leave from work to take care of you.” Boyer works all the way through her treatment, and has to teach a class ten days after having a double mastectomy:
I was a single mother without savings who existed in a world of profit, had no partner to care for me or family nearby in a world that privatizes survival, had to work all through my treatment at a job where I was advised to never let on I was ill, had never had wealth or been proximate to the seats of power. In other words, my cancer, like almost anyone else’s, was ordinary, as was, apart from my practice of writing, my life.
In a section called “How the Oracle Held,” Boyer writes, harrowingly, that “in the capitalist medical universe in which all bodies must orbit around profit at all times, even a double mastectomy is considered an outpatient procedure.” In 2013, 45 percent of mastectomies “were performed in hospital-affiliated outpatient surgery centers with no overnight stay,” according to a study she cites by the federal Agency for Healthcare Research and Quality. After her mastectomy, Boyer was woken from anesthesia and tried to argue with the nurse that she was not well enough to leave the hospital:
I told her that my pain was not managed, that I had not yet actually gone to the bathroom, that I had not yet been given instructions, that I could not stand, let alone leave. Then they made me leave, and I left.
You can’t drive yourself home the same day you have had a double mastectomy, of course, whimpering in pain, unable to use your arms, with four drainage bags hanging from your torso, delirious from anesthesia and barely able to walk. You are not supposed to be alone when you get home, either. But no one really asks how you manage it once you are forced out of the surgical center—who, if anyone, you have to care for you, what sacrifices these caregivers might have to make or the support they require.
It should be no surprise that single women with breast cancer, even adjusting for age, race, and income, die of it at up to twice the rate of the married. The death rate gets higher if you are single and poor.
Looking at historical accounts of breast cancer patients, Boyer illuminates the way treatment has changed, not always for the better. Fannie Burney wrote of holding her own breast in her hand as the surgeon removed it without anesthesia in 1811. Over 150 years later, Audre Lorde described spending five days in the hospital after the removal of one of her breasts, a luxury few patients have today. “Despite the lie of progress,” Boyer points out, many breast cancer patients these days are all but cast out on their own:
While they don’t get a hospital bed to recover in or rehabilitation for the cognitive damage incurred [later] during their treatment, what they do get in the United States is federally mandated access to breast reconstruction—any type of implant they want.
This is a shameful reality, as is the one that ties our health insurance to our jobs. Months after her surgery, Boyer had to fake being healthy (using makeup and sitting upright, “as far away from the sickbed as possible”) to gain permission to be released from the critical care unit where she had been admitted because of heart complications, in order to go back to work when her leave had run out. The implication here is that, in the case of the mastectomy, it was in the hospital’s financial interest to discharge her quickly in order to make room for more paying patients, while in the case of the heart condition, the hospital could earn more money by keeping her longer. She gives a stark inside look at the modern asclepeion, that structure created to administer treatment to cancer patients, and notes that in all her time in the place, she never once saw a bed:
The sick and the partners, children, parents, friends, and volunteers who care for them are kept in circulation from floor to floor, chair to chair. The doctors are assigned a rotation of offices and outposts, and in order to find out where yours is each day, you have to call ahead.
Cancer treatment appears organized for the maximum profit of someone—not the patients—which means cancer patients are kept in maximum circulation at a maximum rate.
Boyer discusses the links between cancer treatment and our environment, including the origins and dangers of the drugs most commonly used in chemotherapy: Adriamycin, or “the red devil,” made from microbes discovered in the soil near a thirteenth-century castle in Italy (and sometimes considered too dangerous to everyone and everything, including the linoleum floor, to administer by drip), and cyclophosphamide, the medicalized form of mustard gas, which during World War I “filled the trenches with brilliant yellow plumes” and was outlawed as a chemical weapon in 1925. (“During cancer, it comes in plastic pouches, and no one in the pavilion speaks frankly about what it is.”) This drug passes through our bodies only partially diluted, is not fully eliminated by water treatment methods, and remains in the common water supply for four hundred to eight hundred days.
Another drug is harvested from the Himalayan yew tree, endangered since 2011; yet another accumulates, once it passes through the body, in aquatic environments, wreaking unknown damage. “My desire to survive means I still can’t bring myself to unravel survival’s ethics,” Boyer writes, even as she attempts to do so. “Cancer spending was $130 billion in 2017,” according to Boyer, “greater than the GDP of more than a hundred countries. The cost of one chemotherapy infusion was more money than I had then earned in any year of my life.”
Boyer also lambasts the culture of the pink ribbon—that now ubiquitous symbol of support for a breast cancer cure—which is, as Ehrenreich pointed out in 2001, often corporate-backed, ultra-feminine, and infantilizing, offering women a way to embrace a faux ideal of femininity by buying products from Avon, Estée Lauder, and other companies while ostensibly supporting awareness and a search for a “cure.” The message the pink ribbon broadcasts is one of “can-do”-ness, suggesting that optimism, mental strength, and following the “right” combination of medical advice and self-help axioms have a direct effect on one’s chances of survival. Cultural moralizing and a focus on “attitude” is not unique to breast cancer, but there is a unique force to moralizing in this particularly pink world.
The Susan G. Komen foundation, the world’s largest breast cancer charity, has raised almost $1 billion for breast cancer awareness and research to date, but, according to Boyer, it “has also conducted a robust public relations campaign against the criticism directed at it by breast cancer activists.” Among other things, the foundation has been accused of “pinkwashing”—receiving huge amounts of money from corporations while passing little of it on to researchers—and using the pink ribbon to promote products that may in fact help to cause cancer.
Boyer notes that the Komen foundation once partnered with KFC for “Buckets for the Cure,” selling fried chicken in large pink buckets, and on another occasion marketed a perfume that contained a handful of potentially carcinogenic ingredients. Perhaps most distressingly, in 2014 Komen partnered with the Baker Hughes corporation in the production of a thousand pink fracking drills. Boyer quotes Karuna Jagger, president of the activist group Breast Cancer Action: “When future generations have to choose between safe drinking water and developing breast cancer, they can look back and thank Baker Hughes and Susan G. Komen.”
“You will understand, I hope,” writes Boyer, “that because of all of this, every pink ribbon looks like the flag of a conqueror stuck in a woman’s grave.”
As I moved through The Undying, I began to comprehend why the book is as various and fragmented as it is. Early on, Boyer argues that “breast cancer is a disease that presents itself as a disordering question of form,” and the form of the book itself reflects that disorder. How does one give shape to something shapeless, give language to the invisible? How does one tell a story without ignoring all the many threads and tangles that have created it, without ignoring all the stories that aren’t being told? “How could I write about the world as it is,” Boyer says, “when it is the same world that was guilty of this body (mine), which in all of its senses felt only like the animate form of its own betrayal?”
There are passages in the book that drift far enough away from the concrete that they become less effective, as in the section called “Wasted Life,” an exploration of exhaustion that includes next to no specific details. The language here gets very abstract (“Fate was shipwrecked, so in its place, they sent us agency…. In this version of freedom, the invisibility of all fences is the point of every invisible fence”), and the reader begins to lose focus. But Boyer seems to anticipate our response: “Exhaustion is boring, requires no genius, is democratic in practice, lacks fans. In this, it’s like experimental literature.”
An important moment is almost buried in the section immediately before. Boyer returns to the cancer pavilion, to an open room filled with patients, where the nurses always told her that the needle injecting her chemotherapy drugs was going to be painless (“a pressure”) “while my body reacted visibly with pain.” Boyer refuses the platitude, telling the nurses, “It hurts,” and her vocalization causes other patients to speak up as well:
“You’re right,” said a fellow patient, a woman, watching. “It really does hurt,” said a man surrounded by his adult children, all of us in the infusion room then all joining together to say that what appears to hurt actually does hurt so that no one would ever again say while they were hurting us that what really hurt us—hurt all of us—never did.
Though The Undying refuses to be another uplifting illness narrative, I find hope in this scene—in the sound of one voice speaking up to expose a lie, and encouraging others to join together against it. Boyer is angry, and she makes it clear that all of us should be. The Undying is slippery and elusive in its very form, and you come away feeling that the book itself encapsulates the frustration with the inadequacies of our existing modes for tackling anything of this size. “I hate to accept, but do,” Boyer writes, “that cancer’s near-criminal myth of singularity means any work about it always resembles testimony.” She is aware that on some level, she can’t avoid her status as a breast cancer “survivor.” Though there is a quest here, Boyer’s seems to be not for meaning but instead for a narrative that reveals the chaos all of our narratives are a part of. A work about breast cancer, Boyer concludes,
will be judged by its veracity or its utility or its depth of feeling but rarely by 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.
Lorde’s The Cancer Journals has just been reissued by Penguin Classics, with a foreword by Tracy K. Smith. ↩