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What’s Really Making Us Sick

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MASTERS: Safiyah Cheatam

While the world fumbles with a devastating pandemic, a memoir about illness, care, pain, and profit wins a Pulitzer Prize. It is tragically appropriate that such an excoriating, anticapitalist memoir, written by a poet from Kansas whose life was altered by a triple-negative breast cancer diagnosis, has earned a prestigious literary prize at a time in which the people running the United States seem to be using this crisis as a competition to achieve the highest Covid-19 case counts and most exacting death toll over every other nation. 

Judging by its subtitle alone, Anne Boyer’s The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer and Care would seem to contain more numerous avenues than one could normally bear to tread in a memoir. The healthcare industry’s role within capitalism, as Boyer writes about it, will be familiar to those who’ve been harmed by it—those with no wealth, those who work to live, and those who have experienced the byzantium of illness and healthcare firsthand. 

She also gets into specificities of her illness and its treatment, breast cancer myths and pinkwashing, shifting relationships with friends and with one’s own body, self advocacy—and how these are all shaped by a capitalist health system—and much more, in a way that makes the reader feel a mixture of bravery and terror. Through these intersecting narratives, the book offers a complex map towards an understanding of what Boyer calls “the undying”—a collective state of being that is not the same as the heroic and singular “survivor,” but rather more like a common group of those tasked with the labor of continuing to live after parts of themselves have died.

“No matter how much they just can’t, the exhausted, if they are living, continue to,” she writes. “They continue to, like everyone who does until they don’t anymore, but they continue to more miserably than those who are not exhausted yet.” It is a challenging, instructive text in this period of mass illness and isolation, when it is hard to imagine a future, though we must.

Anne Boyer (photo by Cassandra Gillig)

I’d wanted to write about The Undying when it was published in September 2019, thinking I would link it to the upcoming health insurance open-enrollment period and the humiliation and risks one must endure when sick and trying to access healthcare, tying this to the ways Boyer writes so lucidly about similar things in this episodic memoir. But like many ideas, this one had to be pushed off indefinitely to make room for other duties and work responsibilities, and I found myself struggling to focus in the evenings after long days spent focusing on other tasks.

When the pandemic hit the Maryland area in early March, I thought again about this book when I saw so many people in my community jumping up to help one another, remembering the author’s friend Cara, who pops in and out of the memoir, using her lunch break to accompany Boyer to the doctor, for example, because she had “no time off without losing out on money she needed to live.”

I put off writing about it again for a bit, but the rushed reopening of Maryland and everywhere else has tortured me for a few weeks. As I write this, I’m looking at incomprehensible numbers that say the United States’ current death toll is just shy of 100,000, and our total confirmed cases are past 1.7 million—far and away more than any other country. (In the ten days that it took me to write and edit this, I frequently adjusted those numbers for accuracy because more kept dying of Covid-19—15,000 people in the US died in that time.)

I recall the myths and rhetoric early on that downplayed the threat of this disease, contributing to public misinformation and putting more at risk: The virus is not here but elsewhere; it’s just like the flu; it only affects the elderly and the sick (read as: screw the elderly and the sick). This thinking is symptomatic of America’s individualistic ethos—that one’s “personal liberty” is more important than other people’s health—which has only promoted widespread death and devastation. Boyer’s book repudiates that toxic standard, offering oblique schemes for how we might better take care of the vulnerable—a reorientation that’s overdue, especially as more of us are sure to get sick.

At the start of The Undying, Boyer traces the lineage of breast cancer narratives, looking at the words of women who eventually died of this cancer, including Susan Sontag, Audre Lorde, Kathy Acker, and others. Through them, Boyer considers the ways in which these women analyzed whether and how to write about the topic of breast cancer and their own experiences of it. Sontag, for example, takes her story out of it entirely whereas Lorde embraces the “I” 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,” as she writes in The Cancer Journals

Breast-cancer writing is presently shaped by the contemporary rule “to tell a story of ‘surviving’ via neoliberal self-management,” Boyer writes. This form of literary narrative totally elides “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.”

Telling one’s own story is clearly political. Folding in the personal with the historical and collective experience of illness, Boyer writes about her cancer, starting with her 2014 diagnosis at the age of 41, in tight paragraphs toned by underlying anger and gratitude, both.

It is a burden to dig into the causes of your own pain and pull out some intelligent words to define it; it is even more so to set your pain in a greater context and legacy of pain, to connect, for example, that the chemotherapy drug that might save your life has a potentially dangerous afterlife once it passes through your body, lingering in the “common water supply for four hundred to eight hundred days,” or that the drug has endangered the Himalayan yew tree from which it is sourced.

Or that your cancer might’ve been caused by intractable environmental carcinogens, or that no doctor really understands your cancer, or that your treatment might not help you and could even kill you. Or that another one of the drugs that’s killing your cancer, but also disfiguring your cognitive function, is a “medicalized form of a chemical weapon” that has a long history in war: “Mustard gas, as it is also known, has always done its worst as an incapacitant rather than a killer, but it can kill a person, too,” Boyer writes. 

Declining to excavate all the sordid relationships among manufacturers of weapons and medicine and breast-cancer nonprofits, Boyer’s book would not be mistaken for reportage. It is instead much more like falling down an internet rabbit hole, almost mirroring one of the ways the author becomes acquainted with her illness post-diagnosis, scouring PubMed, forums, YouTube channels.

“I google my disease and feel alone in the surreality of its quantitative production,” she writes. “In the interstices of my to-do list I search for death, desperate for the study that says I will live.” Along with these descriptions of endless knowledge-seeking and representation-finding (via depictions of illness in metaphysical poetry, ancient Greek religion, modern culture)—and of course doctor visits, chemo infusions, stunning pain and exhaustion—there is also the persistence of work, paid and unpaid. 

Images that appear in The Undying: (L) Illustration of the pathway of pain from Rene Descartes' Treatise on Man, 1664; (R) The Wound Man, 'an anatomical drawing used to illustrate common accidents and injuries, from Hans von Gersdorff's Feldtbuch der Wundartzney, 1519.
It is not enough, the world says, that you suffer the symptoms of cancer, fear of death, debilitating effects of treatment—you must also face the indignity of trying to survive against a system that does not care for you.

Illness disrupts our ability to work, which is why this world hates the sick. “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,” Boyer writes, describing being ushered out of the hospital after surgery despite having been given no aftercare instructions and hardly being able to stand. Boyer points out that unless you are married, old enough to have “devoted grown children” or young enough to be under your parents’ care, “you are, on the occasion of aggressive cancer in the conditions of aggressive profit, rarely considered worth enough to keep alive.”

A single mother of a teen, Boyer returns to work just ten days after the double mastectomy because she has run out of her unpaid medical leave and cannot afford not to work. Friends who have “already made great sacrifices to help” drive her to the college she teaches at, carrying books for her because she’s unable to use her arms. Boyer describes a three-hour lecture on a Whitman poem that day, with “surgical drainage bags stitched to my tightly compressed chest, expected to be bravely visible as a breast cancer survivor while my students have no idea what has been done to me or how much I hurt.”

It is not enough, the world says, that you suffer the symptoms of cancer, fear of death, debilitating effects of treatment—you must also face the indignity of trying to survive against a system that does not care for you. It is a lonely war, the way Boyer describes it. Yet she also braids her story together with so many similar ones, found in literature and art and vlogs. And she never discounts the value of care from those friends and underpaid healthcare workers who brought her some measure of comfort and tried to help keep her alive.

For Boyer, it was not just the illness of breast cancer that she was up against but a system that was never designed for proper care and recognition of humanity within it, a system that allows companies to sell the illusion of support by slapping a pink ribbon on cancer-causing products and machines. And of course it’s not just her struggle but a globally shared one. “To feel as I felt during cancer treatment,” Boyer writes near the book’s end, “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.” 

The last couple of months of pandemic time have prompted many to consider various systemic flaws within healthcare and the social safety net, or even the fundamental traps that such systems create. It would seem that many are joining the call for reckoning, for building a new and better world, the kind of world we want. Still, the structures that govern us feel ironclad, and on bad days—many days—I can’t be convinced we can wrest power from those craven overlords and reconfigure our world. Declarations that we can return to normal after this pandemic ends are unrealistic; and proclamations that we must rebuild some new world feel emptily optimistic, begging the question of how?

Maybe what we can hold onto, as we learn how to live with one another again, are these glimmers of tangible action as the start of a new social contract: the mutual aid networks, supply chains, community-generated emergency funding that people quickly organized and expended valuable energy on. Illness, including and beyond cancer and Covid-19, will continue to ravage us. Many of us will die. But some of us will live, suspended in this strange space of “undying”—aware of the delicate cusp of death, having nearly reached it—and responding in solidarity to each other’s needs from that shared experience. 

After all, Boyer writes, “Nothing I’ve written here is for the well and intact, and had it been, I never would have written it. Everyone who is not sick now has been sick once or will be sick soon.” 

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