by Anne Boyer
Mortenhoe is not relieved by the news that she has been tricked into believing she is dying. She is not grateful for a life extended in the same world that would kill her slowly with medicine in order that it could find pleasure in the sadness of watching her die. She takes all the deadly pills, but we are not shown her death, nor are we ever certain that she has died at all. In refusing a death scene, the film offers Mortenhoe the mystery that the world of the film tried to deny.
Two years after the filming of Death Watch, Romy Schneider, the actress who plays Mortenhoe, died of an overdose of pills in a Paris hotel room.
The year 1321 might be the only one in history in which the sick, infected, and disfigured organized collectively to take over their world. Or at least this was the rumor. It was believed that the lepers had planned for two years—not just for their revolt, but also the world after it. They planned who would get what and how. The wells, streams, and fountains would be simultaneously polluted with a poison—a mix of their urine and blood and four different herbs and a sanctified body. All of France (all who weren’t lepers) would die or become lepers themselves. The healthy who survived the sick persons’ revolt, now themselves sick people, would be the natural citizens of the sick persons’ kingdom.4
The lepers never ruled the world: the plot was found out, the lepers were rounded up and brutalized, burned, tortured, imprisoned. Leper panic spread throughout Europe. But it is not the consequence of the lepers’ plot that interests me—repression is as common as a season—it is that history contains the dream of a leper revolt at all.
“Illness,” wrote the German radical group Socialist Patients’ Collective, “becomes the undeniable challenge to revolutionize everything—yes, everything!—for the first time really and in the right way…”5
It’s like a nurse once said to me in the infusion room: “It takes a wolf to catch a wolf.”
The cardiologists have made no judgment about my heart. Because the weeks of guaranteed unpaid time off for serious illness is insufficient for anyone with serious cancer, which often inconveniences its patients by requiring that their treatment lasts a year or more and leaves them disabled at the end, I have no leave left, not for heart troubles and certainly not for all the surgeries that are still to come later in my treatment. Whether I am dying or not, I still have bills to pay, a child to support, students to teach, a job to keep: I have to go to work. I create the appearance of health from the cosmetics bag Cara brings to the hospital. The new doctor on shift in the critical care unit walks into my room where I have positioned myself as far away from the sickbed as possible. I sit upright, reading in a chair. The doctor asks me where the patient has gone.
I have been in this cancer game for months and am very tired of medicine and would prefer to say that the patient has disappeared. I instead make the medically necessary confession that I myself am the patient, and the doctor says, confounded by the contradiction between my appearance and my chart, “But you don’t look sick.”
This doctor, unable to reconcile my clever fabrication of health with the actuality of illness, allows me to persuade him that I can be released from the hospital despite that the conditions for which I have been admitted to the critical care unit have not changed. I am wheeled out, and because spring semester has begun, driven directly from the hospital to my workplace. I am barely able to walk the thirty steps to my classroom, can’t stand, but fresh from the hospital, breathless and with a racing heart, I teach. The next morning, I go to a fourth cardiologist, who when he first sees me, says as the other one did that I do not look like the person with the heart he is reading about in the chart.
The ancient Egyptians believed that to enter the underworld, a dead person’s heart—the center, to them, of the mind and of feeling—should be weighed against a feather. The heart holds an account of all of a person’s deeds, if they are good or wicked, if they love or hate. Should the dead person’s heart be heavier than a feather, a devourer is waiting to eat underneath the scale. Should a person’s heart, however, contain the record of a life so well-lived that her heart weighs less than a feather, the person will be allowed to pass on to the afterlife.
One of the nurses from the breast surgeon’s office hears that I am in the medical complex visiting the cardiologist. She tracks me down so that she can administer a hug. She is worried that I might be worried that my heart problems will prohibit the completion of my treatment—at this point, I am in the weeks between chemotherapy and mastectomy—or she herself is worried that my heart problems will prohibit the completion of my treatment, I can’t tell which. I have to get the okay from cardiology before I am allowed to begin the required surgeries, and so I live strapped to a portable monitor for days, waiting for a diagnosis that the hospital cardiologists couldn’t give.
It’s finally resolved: my heart is not a problem. It’s my nerves. The ones that regulate my heart have begun to die from the chemo, just as many of the nerves in my hands and feet have died off, too. My surgery is delayed, but not for long. I am instructed to eat food, recover, and wait for the dead parts of my body to come back to life. Mine is a heart that is hurt, but it is not a heart that is failed.
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. I dream in elaborately missed positions, of lakes and ladders I cannot climb, of a book with the title You Never Know and Probably Never Will. It has as its content the worth of each life.
I know it has all been confusing, or at least it was to me, but it’s the same confusion as when I am confident that every person who has ever lived knows exactly what I mean when I describe feeling like a snake on the path in the dappled sunshine that turns out, on close inspection, only to be a snake’s discarded skin.
To see a snake is to also think of the way a snake slithers out of its skin, the way it has to rub its skin against something hard so that the skin begins to loosen and also the way the snake must generate sufficient new skin so that the old might be left behind. To see a snake is to think of the way the snake’s eyes glaze over and it might not be able to see for a bit because there it is, getting new skin, getting rid of the old, lost in the process of becoming something else. I decide the question posed by this book is, Are you going to be the snake or are you going to be the snake’s cast-off skin?
Just as no one is born outside of history, no one dies a natural death. Death never quits, is both universal and not. It is distributed in disproportion, arrives by drone strikes and guns and husbands’ hands, is carried on the tiny backs of hospital-bred microbes, circulated in the storms raised by the new capitalist weather, arrives through a whisper of radiation instructing the mutation of a cell. It both cares who we are, and it doesn’t. A squirrel has died, unmarred, of no apparent reason and is cradled at the root of a tree near my apartment. Like any mortal creature, I should not get too attached to being alive. I’d written in my journal: In the clash of civilizations—the living versus the dead—I know whose side I’m on, never saying which.
EPILOGUE
/and what it was that saved me
I didn’t die, or at least not of this. When I got past my cancer’s immediate threat, my daughter said I had done the impossible and arranged for myself to write inside a living posthumousness. After cancer, my writing felt given its full permission. I lost some neural mitochondria and my looks and many of my memories and a lot of my intelligence and an optimistically estimated five to ten years of life span to the curative forces of medical decimation, and having lost all that, found myself to still be myself, damaged into my own intensified version. It’s like the condition of lostness is, when it comes to being a person, what finally makes us real.
I tried to write it all down. I spent years writing about minutes, months writing about days, weeks writing about seconds, and days writing about hours, and in the minutes of experience in which my years and days have now been lost, it still feels like the weight of these ev
ents remains too heavy for their telling. I had abandoned this book at least a thousand times, a number that does not include the innumerable other destructions inherent in writing it—the drafts deleted, pages erased, passages excised, structures disposed of, arguments unraveled, sentiments self-forbidden, anecdotes untold. This number doesn’t include the Facebook account I can’t stand to log back into and the tweets I’ve left unretrieved, or the emails I won’t call up from their archive, or the hospital bills that my friends and I sailed as paper airplanes from the highest point of my city or the ones we drowned, with a plastic skeleton, in a lake. This is to say nothing, too, of the Your Oncology Journey binder that we buried, in pieces, after dark with kale seeds in public locations that I am not at liberty to disclose. When I hit my keyboard’s space bar it was usually with a prayer that it would get stuck, that I would be allowed instead of this book an expanse of blank and cancerless pages.
If this book had to exist, I wanted it to be a minor form of reparative magic, for it to expropriate the force of literature away from literature, manifest the communism of the unlovable, grant anyone who reads it the freedom that can come from being thoroughly reduced. I wanted our lost body parts to regenerate via its sentences and for its ideas to have an elegance that will unextenuate our cells. This book could be a miracle emerging from a pile of dropped mics, announcing, as it rises, “Out of the grave and into the streets,” a phrase once pronounced at a tarot reading with my friends, back when becoming a sick person was never in the works. Or if I could write the earth into opening up I would, and bring back to life an insurgent army of the dead women, but I never learned to write well enough to do all of that.
I hate to accept, but do, that cancer’s near-criminal myth of singularity means any work about it always resembles testimony. It 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.
A friend wrote about what is missing from an early draft: “There is only intermittently any Us.” My response to him is, at first, I can’t lie. But that itself is a lie, proof that I can lie and sometimes do. What I meant was that I can’t pretend to have felt less alone, as if swimming at the lake with my friends, then having swum past them, beyond the buoys, out in the deep where no one could come to rescue me and no one I loved had ever been. And I can’t account for the provenance of all that is untrue, not about cancer and not about anything else. I can’t write with confidence about what has its source in species folly or my private failings or what the myopia of empire arranges to distract us from its distanced cruelty.
Oncology is a genius at the production of desolate feelings, which is why I will never believe that things were always as bad as they felt, even if they might have been worse. During diagnosis, the sick are kept in cold rooms while the technicians stand in other rooms, behind glass, talking to us through headphones. The surgeons label our body parts with purple pens. Some loved ones abandon us. Strangers fetishize our suffering. We are often so sick we can’t be among others, we cease to look like ourselves, if we go among humans we are pitied as if an abandoned animal. Cancer patients, too, sometimes see in one another not comrades but cautionary tales—a tragedy we hope not to become—or someone less sick whom we must envy. 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 their bodies to be expunged only by surgeons or drug companies. In alternative medical environments, it’s the same shit, different office park—this time with Reiki and herbs. 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.
But any unexamined account of desolation is a lie, or as with many truths, when submitted to the wrong context, a fraction of one. I felt desolate at the same time many others felt desolate, and before that, so many others had felt desolation ahead of me, and after me, still do. If even half of us who were sick at the same time felt the desolation of our treatment, could this vast and common loneliness be anything other than evidence that we have been fooled?
Although it is true that I often felt lonely, it is also true that my friends had moved with me in shifts through the adventure of my illness, indulging my onco-surrealist fantasies of how to be sick, allowing me to wear my thrift store silk pajamas to the movies, helping me record images of hospital vacuum cleaners and the sounds of IV drips, joining me in throwing the celebratory cake at the end of chemotherapy rather than doing as is custom and eating it. We had all agreed that if I had to have cancer, it should be experienced in a confetti storm of amor fati, as if performed in the mode of the 1966 anarcha-feminist film Daisies in which the women lie around in their underwear and set party streamers on fire. To be ruined, we said, is why the banquet exists.
My friend Cara told me that it was clear that when I was at my lowest, what I needed most was art—not comfort—and so it was to get through cancer that I had to wish everything around me into aesthetic extremity. I had needed to daydream of coffins filled with embalming honey, invent speculative religions, write polemics, take revenge, and conceive of a brand-new version of the funerary, making lists of all the miniature electronics our souls should take with us to the afterworld, which I also tried to reinvent.
During my treatment, some of my friends sent me cannabis popcorn wrapped in the poet Diane di Prima’s hand-me-down yoga pants. I had no partner to take care of me, but their gift was proof that I had the better part of the world, and despite every argument for inescapability made by the world’s structures of deprivation, deprivation is not the entire world. Cancer was hard, but I had these inventive forms of love to soften it, even if these loves were the completely extralegal and unofficial kind, unattached to the couple or family. But when I was sick, I also felt the cold sadness of what would have happened if I was friendless or for whatever reason at that point unlovable, or what might happen to me when I became so. Some friends left, but some friends patchworked their money and time into care for me. The ones who had money wrote checks so that the ones with the capacity for thoughtful care could fly to me and help me empty the surgical drains stitched into my body. Some friends sent books, others sent mixtapes. Our solution to the problem of care is not scalable, was inadequate and provisional, but at least it got me through.
Once during treatment when the tumor hurt and felt like it was growing again and I was terrified of a painful and lonely death, my friend Jasper sat on the sofa I’d moved to the dining room so that whoever came to visit to take care of me would have a place to sleep. Jasper seemed uninterested in the practice of turning on and off lights, and I had convinced myself that as a woman, I would be acting out of internalized oppression if I compensated for this by turning on and off the lights for us. That’s how we ended up discussing merciful death on this sofa in an almost completely dark room full of functional lamps. Jasper answered my fear of the painful and humiliating death by this cancer with “Well, we’ll all just make sure that doesn’t happen.” I believed him of course, that despite the risks my friends would help me die according to my own desires, because my friends had been so mostly reliable and generous and resourceful during my illness. Yet at the thought of leaving my friends behind forever I began to cry and fled to my room.
I’d hoped he hadn’t noticed I was crying: these were silent tears and everything was dark and sometimes he gave an air of being too smart to notice what was happening on another person’s face. But I was in my room for only a minute when I saw that he had followed me. I then said, in that high tight voice of totally unconvincing protest, “I’m okay!” but wasn’t, and he suggested that this would be a good time to watch some TV.
So we did, and in the dim flicker of a Black Mirror episode in
the living room, I thought about all the women writers who had died early and who I wished had lived. Mary Wollstonecraft was thirty-eight when she died after giving birth to Mary Shelley. The nineteenth-century French-Peruvian socialist philosopher Flora Tristan was forty-one when she died of exhaustion after trying to organize France’s working class. The philosopher Margaret Fuller was forty when she died, drowning off the coast of Fire Island, “her hair loose over her white dress, facing America,” her last words: “I see nothing but death before me.”1
Before I got sick, the work of these dead women had kept me company. They had imagined a new structure to the world and with it, the world’s real possibilities. And in my forty-first year I gathered these writers around me, too, detached myself from the things of the living little by little. I imagined a new structure for the world, as I always did, then rehearsed my death, peeled desire away from me as if taking off clothes. My activity narrowed, my attachments narrowed: then my ambitions abstracted—I was able to love from a length and through this, to imagine love’s larger form.
Mortality is a gorgeous framework. What a relief to have not been protected, I decided, to not be a subtle or delicate person whose inner experience is made only of taste and polite feeling; what a relief not to collect tiny wounds as if they are the greatest injuries while all the rest of the world always, really, actually bleeds. It’s yet another error in perception that those with social protection can look at those who have at times lacked it, and imagine that weakness is in the bleeder, not those who have never bled. Those who diminish the beauty and luxury of survival must do so because they have been so rarely almost dead.
I’d survived, yet the ideological regime of cancer means that to call myself a survivor still feels like a betrayal of the dead. But I’ll admit that not a day passes in which I am not ecstatic that I still get to live. I am sorry that I was not able to write down everything. The great orbs of the unsaid continue to float through the air. But it is time for a new problem, the horizontal has said to the vertical. Then the moon, once so obsessed with waning, finally waxed.