by Anne Boyer
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Table of Contents
A Note About the Author
Copyright Page
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Not even if I had ten tongues and ten mouths.
—The Iliad
PROLOGUE
In 1972, Susan Sontag was planning a work to be called “On Women Dying” or “Deaths of Women” or “How Women Die.” In her journal under the heading “material,” she wrote a list of eleven deaths, including the death of Virginia Woolf, the death of Marie Curie, the death of Jeanne d’Arc, the death of Rosa Luxemburg, and the death of Alice James.1 Alice James died of breast cancer in 1892 at the age of forty-two. In her own journal, James describes her breast tumor as “this unholy granite substance in my breast.”2 Sontag quotes this later in Illness as Metaphor, the book that she wrote after undergoing treatment for her own breast cancer, diagnosed in 1974 when she was forty-one.3
Illness as Metaphor is cancer as nothing personal. Sontag does not write “I” and “cancer” in the same sentence. Rachel Carson is diagnosed with breast cancer in 1960, at the age of fifty-three, while in the process of writing Silent Spring, among the most important books in the cultural history of cancer. Carson does not speak publicly of the cancer from which she dies in 1964.4 Sontag’s journal entries during cancer treatment stand out for how few there are and how little they say. The little they do say illustrates breast cancer’s cost to thinking, mostly as a result of chemotherapy treatments that can have severe and long-lasting cognitive effects. In February 1976, while undergoing chemotherapy, Sontag writes, “I need a mental gym.” The next entry is months later, in June 1976: “when I can write letters, then…”5
In Jacqueline Susann’s 1966 novel Valley of the Dolls, a character named Jennifer, afraid of mastectomy, dies by intentional overdose after her breast cancer diagnosis.6 “All my life,” Jennifer says, “the word cancer meant death, terror, something so horrible I’d cringe. And now I have it. And the funny part is, I’m not the least bit frightened of the cancer itself—even if it turns out to be a death sentence. It’s just what it’ll do to my life.” The feminist writer Charlotte Perkins Gilman, diagnosed with breast cancer in 1932, kills herself, too: “I have preferred chloroform to cancer.”7 Jacqueline Susann, diagnosed at forty-four, dies of breast cancer in 1974, the year Sontag is diagnosed.
In 1978, the poet Audre Lorde is also diagnosed with breast cancer at the age of forty-four. Unlike Sontag, Lorde uses the words “I” and “cancer” together, and does this famously in The Cancer Journals, which includes an account of her diagnosis and treatment and a call to arms: “I don’t want this to be a record of grieving only. I don’t want this to be a record only of tears.” For Lorde, the crisis of breast cancer meant “the warrior’s painstaking examination of yet another weapon.”8 Lorde dies of breast cancer in 1992.
Like Lorde, the British novelist Fanny Burney, who discovers her breast cancer in 1810, writes a first-person account of her mastectomy.9 Her breast is removed without anesthetic. She is conscious for the mastectomy’s duration:
… not for days, not for Weeks, but for Months I could not speak of this terrible business without nearly again going through it! I could not think of it with impunity! I was sick, I was disordered by a single question—even now, 9 months after it is over, I have a head ache from going on with the account! & this miserable account …
“Write aphoristically,” Sontag notes in her journal when contemplating how to write about cancer in Illness as Metaphor.10 Breast cancer exists uneasily with the “I” that might “speak of this terrible business” and give “this miserable account.” This “I” is sometimes annihilated by cancer, but sometimes preemptively annihilated by the person it represents, either by suicide or by an authorial stubbornness that does not permit “I” and “cancer” to be joined in one unit of thought:
“[Redacted] is diagnosed with breast cancer in 2014, at the age of forty-one.”
or
“I am diagnosed with [redacted] in 2014, at the age of forty-one.”
The novelist Kathy Acker is diagnosed with breast cancer in 1996, at the age of forty-nine. “I am going to tell this story as I know it,” begins “The Gift of Disease,” an uncharacteristically straightforward account she wrote about cancer for The Guardian: “Even now, it is strange to me. I have no idea why I am telling it. I have never been sentimental. Perhaps just to say that it happened.” Acker doesn’t know why she would tell the story and yet she does: “In April of last year, I was diagnosed as having breast cancer.”11 Acker dies of it in 1997, within eighteen months of being diagnosed.
Although breast cancer can happen to anyone with breast tissue, women bear the substantial weight of its calamities. These calamities come to women with breast cancer by way of early death, painful death, disabling treatment, disabling late effects of treatments, loss of partners, income, and capacity, but the calamities also come via the social morass of the disease—its class politics, gendered delimitations, and racialized distribution of death, its rotating scheme of confused instructions and brutal mystifications.
If few diseases are as calamitous to women in effects as breast cancer, there are even fewer as voluminous in their agonies. These agonies are not only about the disease itself, but about what is written about it, or not written about it, or whether or not to write about it, or how. Breast cancer is a disease that presents itself as a disordering question of form.
The answer to that question of form is often competing redactions and these redactions’ interpretations and corrections. For Lorde, a black lesbian feminist poet, the redaction is cancer’s, and the silence around the disease is an entrance to politics: “My work is to inhabit the silences with which I have lived and fill them with myself until they have the sounds of brightest day and loudest thunder.”12 For Sontag, an upper-class white cultural critic, the redaction is of the personal. As she wrote in a note under prospective titles for what would become Illness as Metaphor: “To think only of oneself is to think of death.”13
A fourth title Sontag proposed for her never-to-be-written piece was “Women and Death.” She claims, “Women don’t die for each other. There is no ‘sororal’ death.” But I think Sontag was wrong. A sororal death would not be women dying for each other: it is death in an alienated parallel. A sororal death would be women dying of being women. The queer theorist Eve Kosofsky Sedgwick, diagnosed with breast cancer in 1991, at the age of forty-one, wrote about breast cancer culture’s startling, sometimes brutal impositions of gender. Sedgwick, at her diagnosis, wrote that she thought, “Shit, now I guess I really must be a woman.”14 As S. Lochlann Jain writes in a chapter called “Cancer Butch” in the book Malignant, “one charming little diagnosis threatens to suck you under, into the archetypal death doled out by the feminine body.”15 Sedgwick died of breast cancer in 2009.
Women might not, as Sontag claimed, die for each other, but their deaths by breast cancer are not without sacrifice. At least in the age of “awareness,” that lucrative, pink-ribbon-wrapped alternative to “cure,” what we are told must be given up for
the common good is not so much one’s life as one’s life story. The silence around breast cancer that Lorde once wrote into is now the din of breast cancer’s extraordinary production of language. In our time, the challenge is not to speak into the silence, but to learn to form a resistance to the often obliterating noise. Sontag’s and Carson’s reluctance to link themselves to the disease has now become replaced with an obligation, for those women who have it, to always do so.
Though I might claim, as Acker did, to not be sentimental, this sentence joins myself and my breast cancer together in—if not a sentimental story—at least an ideological one:
“I was diagnosed with breast cancer in 2014, at the age of forty-one.”
Breast cancer’s formal problem, then, is also political. An ideological story is always a story that I don’t know why I would tell but still do. That sentence with its “I” and its “breast cancer” enters into an “awareness” that becomes a dangerous ubiquity. As Jain describes it, silence is no longer the greatest obstacle to finding a cure for breast cancer: “cancer’s everywhereness drops into a sludge of nowhereness.”16
Only one class of people who have had breast cancer are regularly admitted to the pinkwashed landscape of awareness: those who have survived it. To those victors go the narrative spoils. To tell the story of one’s own breast cancer is supposed to be to tell a story of “surviving” via neoliberal self-management—the narrative is of the atomized individual done right, self-examined and mammogramed, of disease cured with compliance, 5K runs, organic green smoothies, and positive thought. As Ellen Leopold points out in her history of breast cancer, A Darker Ribbon, the rise of neoliberalism in the 1990s brings a change in breast cancer’s narrative conventions: “the external world is taken as a given, a backdrop against which the personal drama is played out.”17
To write only of oneself is not to write only of death, but under these conditions, to write more specifically of a type of death or a deathlike state to which no politics, no collective action, no broader history might be admitted. 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. To write only of oneself may be to write of death, but to write of death is to write of everyone. As Lorde wrote, “I carry tattooed upon my heart a list of names of women who did not survive, and there is always a space for one more, my own.”18
In 1974, the year she was diagnosed with breast cancer, Sontag writes in her journal: “My way of thinking has up to now been both too abstract and too concrete. Too abstract: death. Too concrete: me.” She admits, then, what she calls a middle term: “both abstract and concrete.” The term—positioned between oneself and one’s death, the abstract and concrete—is “women.” “And thereby,” Sontag added, “a whole new universe of death rose before my eyes.”19
THE INCUBANTS
1.
When the technician leaves the room, I turn my head toward the screen to interpret any neoplasms, the webs of nerves, the small lit fonts in which my pathology and/or future or future end might be written. The first tumor I ever saw was a darkness on that screen, round with a long craggy finger jutting from it. I took a photo of it from my exam table with an iPhone. That tumor was my own.
I learned I was sick at the cusp of clinic and sensation. I wore the same green tank top, cutoffs, and sandals that I wore every summer—then surprise, then grim persuasive professional rhetoric filling up the climate control, that serious woman in a gray suit emphatic about the doom, then personal panic, clinical refinements, astonished Gchats with my friends. An investigator enters my life dressed up as an entire social institution, says they are launching an investigation into sensations a person (me) hasn’t yet had to feel, but will.
To take a set of objects and actions from one system and reclassify these as elements in another system is like fortune-telling. To a fortune-teller, birds flying north spell out tomorrow’s happiness and tea leaves tell a story about two lovers and the third who will ruin them. After that, the flight of the birds has been freed from the meaning “migration,” and when it has become a tale about the future end of the lovers, the tea is no longer anything we want to drink.
To take a thing or set of things from one system and reclassify these as elements in another also resembles diagnosis, which takes information from our bodies and rearranges what came from inside of us into a system imposed from far away. My lump was once in the system of me, but the moment the radiologist gave it a BI-RADS 5 score, it became a tumor forever at home in the system of oncology.1 Like the birds that have been liberated from the content of their flying and like the liberated tea, a diagnosed person is liberated from what she once thought of as herself.
To be declared with certainty ill while feeling with certainty fine is to fall on the hardness of language without being given even an hour of soft uncertainty in which to steady oneself with preemptive worry, aka now you don’t have a solution to a problem, now you have a specific name for a life breaking in two. Illness that never bothered to announce itself to the senses radiates in screen life, as light is sound and is information encrypted, unencrypted, circulated, analyzed, rated, studied, and sold. In the servers, our health degrades or improves. Once we were sick in our bodies. Now we are sick in a body of light.
Welcome to the detectors with names made of letters: MRI, CT, PET. Earmuffs on, gown on, gown removed, arms up, arms down, breathe in, breathe out, blood drawn, dye injected, wand in, wand on, moving or being moved—radiology turns a person made of feelings and flesh into a patient made of light and shadows. There are quiet technicians, loud clatters, warmed blankets, cinematic beeps.
An image in a clinic isn’t: it is imaging. We who become patients through the waves and stopped waves of sonograms, of light tricks and exposures, of brilliant injectable dyes, are by the power vested in me by having-a-body’s universal law now to be called the imagelings. “Come in with a full bladder,” the technicians say on the phone to the imagelings, wanting to look into our interesting interiors. The sonogram that can find a new life in a person’s womb can also find an embryonic death there.
We fall ill, and our illness falls under the hard hand of science, falls onto slides under confident microscopes, falls into pretty lies, falls into pity and public relations, falls into new pages open on the browser and new books on the shelf. Then there is this body (my body) that has no feel for uncertainty, a life that breaks open under the alien terminology of oncology, then into the rift of that language, falls.
There are people who feel bad in their bodies and do nothing about it, and there are people who feel bad in their bodies and submit their symptoms to search engines and stop there. Then there are people who can afford to circulate what hurts between professionals who will offer them competing diagnostic bids. This group of people follow a set of symptoms toward a promise, ask for tests, question answers, travel long distances to visit specialists who might be able to recognize what’s wrong.
If symptoms are circulated long enough, a set of discomforts might be allowed the mercy of a name: a disease, a syndrome, a sensitivity, a search term. Sometimes that is cure enough—as if to appellate is to make okay. Sometimes to give a person a word to call their suffering is the only treatment for it.
In a world where so many people feel so bad, there’s a common unmarked and indefinite state of feeling ill that provides, at least, membership in a community of the unspecified. Discomfort in need of diagnosis forms a feeling-scape of curious pains and corporeal eruptions, all untamed by the category disease. The kind of illness that has no name is the kind that is held in suspense or held in common or shuffled into the adjacency of psychiatry.
A body in mysterious discomfort exposes itself to medicine hoping to meet a vocabulary with which to speak of suffering in return. If that suffering does not meet sufficient language,
those who endure that suffering must come together to invent it. The sick but undiagnosed have developed a literature of unnamed illness, a poetry of it, too, and a narrative of their search for answers. They finesse diets in response to what medicine fails, assay lifestyle restrictions, and in the mix of refined ingestion and corrective protections and rotating professional inspections, health or ill health wanders from the bounds of medicine, resists both disease and cure.
Cancer’s custom, on the other hand, is to rarely show up unannounced. Cancer comes in a wave of experts and expert technologies. It arrives via surveillance and professional declaration. 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.
“They tell me,” said an old man to me in the chemotherapy infusion room, “I have cancer, but,” he whispered, “I have my doubts.”
But we knew that something was wrong, that the world was wrong (catastrophically), that we were wrong (catastrophically), that something (anything) was catastrophically wrong everywhere.
We were sick in a gloss of total health, and totally healthy in a sickening world.
We were lonely, but unable to form the bonds necessary to end our loneliness.
We were overworked, but intoxicated by our own working.
I thought I had become sick (in a manner), that I was unwell (in the spirit), that I was collapsing in a fit of Faustianism in a devil’s bargain world.
2.
Aelius Aristides, a Greek orator born during the reign of Nero, tried to heal his illness by sleeping in the sacred territory of the god Asclepius and obeying the instructions of dreams. Aristides, who was twenty-six when he fell ill, lived for years among the incubants in Asclepius’s temple in Pergamum. There, the sick waited for divine prescriptions from Asclepius to appear as they slept, and when the sick woke, they followed them. Now we sleep in the precincts of gods we have forgotten, statistics an ulterior mysticism.