The Undying Read online

  Contemporary oncological images are mostly of faces, and all of them are radiant with multiracial age-spanning happiness. The faces beaming out from cancer’s instructional materials bear signs of cancer as social ritual (a bald head, an appropriately colored ribbon) but bear 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. Our temples collect smiles sanitized from history, every photo of our illnesses a votive of glossy and dubious happiness.

  If I were an incubant in the days of Aristides, I’d have to bring a votive of alien math as it caresses deadly inevitability. I didn’t feel sick. But this is not quite true. In the weeks between discovering the tumor and the start of chemotherapy, the tumor began to hurt and never stopped, its life making noise against mine. I asked the surgeon if this was because the tumor was growing, and because it was such an aggressive cancer, and she said, yes, this kind, probably. I would have known I was sick soon enough. I would have gone to Asclepius bearing a votive of my left breast.

  I begin to collect images of Saint Agatha holding her amputated breasts on a platter. Agatha is the patron saint of breast cancer, fires, volcanic eruptions, single women, torture victims, and the raped. She is also the patron saint of earthquakes, because when the torturers amputated her breasts, the ground began to tremble in revenge.

  4.

  Enchantment is not the same as mystification. One is the ordinary magic of all that exists existing for its own sake, the other an insidious con. Mystification blurs the simple facts of the shared world to prevent us from changing it. Cancer’s disenchantments give its mystifications room. I hadn’t thought much about breast cancer before I had it, but at first when I did I thought it was simple. I had believed it was no longer very deadly and that its treatment had been made easy, that with breast cancer your life gets a little interrupted but then you get through. Perhaps if I had another cancer this would have been the case, but nothing was easy with my cancer, particularly not finding the truth. All the information seemed designed to make me confused.

  There had to be a simple fact, or a set of them, but I could not see the truth with the screen in my face, ardent that somewhere inside my computer, I would find a warrant to live.

  My tumor started on a screen, and I returned it there. I entered its precise qualities into the prognostic calculator that promised to display the future in a pictograph. The dead women were represented by forty-eight dark pink frowning faces, the living ones by fifty-two smiling green ones. All of these faces were supposed to, like me, be forty-one years old and with exactly the same version of my disease, but none of these faces, living or dead, said why or when or who.

  I didn’t know anything about having cancer, but I knew something about how to avoid telling a story. The previous night’s dream was another kind of institution—something lit blue, in a glass office building in the sort of city one would find as the backdrop for a television series about lawyers.

  Everything about being sick is written in our bodies first and sometimes written in notebooks later. Erotics are rarely allowed in cancer, and this is probably not a novel, but I would rather be Marguerite Duras, to write of love or its disappointments. Once treatment begins, my erotic longing is for assistive devices: a wheelchair and someone to push it, a bedpan and someone to empty it. Then my longing is to spend an hour in consideration of the act of “moving” each time I must move, mentally rehearsing this event of movement, preparing each part of my body that will be required to move and in what relationship with the others, and then to move and to find all the mental preparation had no effect on movement’s difficulty. Before I got sick I was strong, but soon to be so weak that to walk short distances, like the six feet from the bed to the bedroom door, left me winded. First a whole life of being appetitive, then to not be able to eat or have sex and to not want to, to not have it matter too much because I also can’t without great effort shop for or prepare food or raise my hand to stroke in tenderness the no one that is here; then to not sleep, also, from an exhaustion so fulminating that it is too exhausting for the body to relieve it—and all that time, too, in multifocal pain, which like exhaustion I will write about later, but which will be, to paraphrase Clarice Lispector, like taking a photograph of the scent of a perfume.

  Lispector describes her book Aqua Viva as “the story of instants that flee like fugitive tracks seen from the window of the train.”17 Aristides begins his Sacred Tales with a declaration of the difficulties of writing about the experience of sickness:

  I have never been persuaded by any of my friends, who have asked or encouraged me to speak or write about these things, and so I have avoided the impossible. For it seemed to be the same as if I should swim under water through every sea and next be compelled to render an account of how many waves I encountered, and how I found the sea at each of them, and what it was that saved me.18

  BIRTH OF THE PAVILION

  I am continually beset by the fear that I may have expressed only a sigh when I thought I was stating a truth.

  —STENDHAL, On Love, 1821

  communiqué from an exurban satellite clinic of a cancer pavilion named after a financier

  Pull your hair out by the handfuls in socially distressing locations: Sephora, family court, Bank of America, in whatever location where you do your paid work, while in conversation with the landlord, at Leavenworth prison, however in the gaze of men. Negotiate for what you need because you will need it now more than ever. If these negotiations fail, yank your hair out of your head in front of who would deny you, leave clumps of your hair in the woods, on the prairies, in QuikTrip parking lots, in front of every bar at which your conventionally feminine appearance earned you and your friends pitchers of domestic beer.

  Put your head out the window of the car and let the wind blow the hair off your head. Let your friends harvest locks of your hair to give to other friends to leave in socially distressing locations: to scatter at ports, at national monuments, inside the architecture built to make ordinary people feel small and stupid, to throw against harassers on the streets.

  Pull your pubic hair out in clumps from the root and send it in unmarked envelopes to technocrats. Leave your armpit hair at the Superfund site you once lived near, your nose hairs for any human resources officer who denies you leave.

  When your eyelashes fall out, send them as a reverse wish to every person who has, at your illness, disappeared. Your hair will fall out onto every surface you come near: it will fall into new alphabets and new words. Read these words to discover the etiology of your illness: If you are lucky you will read another word that means “illness has turned you into an armament.” In the bald spots, you will read how to weaponize your dying cells against what you hate and what hates you.

  As you see a weapon in your falling hair, also you will see your body as it falls is a weapon, also as it doesn’t fall. In this new theory of being a sick person your friend will say that caring for you is now to care for arms. You have turned your room into an armory. Everyone who brings you water or food is also now loading a gun.

  1.

  The cancer pavilion is 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. The old seem infantile, the young act senile, the middle-aged find all that is middle-aged about them disappears.

  The boundaries of our bodies break. Everything we were supposed to keep inside of us now seems to fall out. Blood from chemotherapy-induced nosebleeds drips on the sheets, the paperwork, the CVS receipts, the library books. We can’t stop crying. We emit foul odors. We throw up.

  We have poisonous vaginas and poisoned sperm. Our urine is so toxic that the signs in the bathroom instruct patients to flush twice. We do not look like people: we look like people with cancer. We resemble a disease before we resemble ourselves.

  Language is no longer compliant to its social
function. If we use words it is to approach as a misplaced bomb. Someone mentions something about the weather: in response, an errant phrase from a phantom conversation: “We must learn to accept what we want.” Sentences hold out against syntax. Vocabularies re-form into awkward translations of words we once knew or new words we never will. Children who were once taught to speak by their mothers now stare at their sick mothers, who are gesturing like babies learning to talk, unable to recall the word for “television” or the word for “cup.”

  In the waiting rooms, the labor of care meets the labor of data. Wives fill out their husbands’ forms. Mothers fill out their children’s. Sick women fill out their own.

  I am sick and a woman. I write my own name. I am handed at each appointment a printout from the general database that I am told to amend or approve. The databases would be empty without us.

  Receptionists distribute forms, print the bracelets to be read later by scanners held in the hands of other women. The nursing assistants stand in a doorway from which they never quite emerge. They hold these doors open with their bodies and call out patients’ names. These women are the paraprofessionals in the thresholds, weighing the bodies of patients on digital scales, taking measurements of vital signs in the staging area of a clinic’s open crannies. Then they lead the patient (me) to an examining room and log into the system. They enter the numbers my body generates when offered to machines: how hot or cold I am, the rate at which my heart is beating. Then they ask the question: Rate your pain on a scale of one to ten? I try to answer, but the correct answer is always anumerical. Sensation is the enemy of quantification. There is no machine, yet, to which a nervous system can submit sensation to be transformed into a sufficiently descriptive measurement.

  Contemporary medicine hyper-responds to the body’s unruly event of illness by transmuting it into data. Patients become information not merely via the quantities of whatever emerges from or passes through their discrete bodies, the bodies and sensations of entire populations become the math of likelihood (of falling ill or staying well, of living or dying, of healing or suffering) upon which treatment is based. The bodies of all people are subject to these calculations, but it is women, most often, who do the preliminary work of relocating the nebulousness and uncountablity of illness into medicine’s technologized math.

  What is your name and birth date? A cancer patient’s name, stated by herself, is adjunct to the bar code of her wristband, then the adjunct of whatever substances—vials of drawn blood, the chemotherapy drugs to be infused into her—whose location and identity must be confirmed. Though my bracelet had been scanned for my identity, requiring me to repeat my name is medical information’s backup plan: it is the punctum of every transmission of something to or from my body. I might sometimes remember who I am. But repetition is a method of desensitization. To rate yourself on the scale of 1 to 10? In cancer’s medicalized abstraction, I became a barely, tertiary to the body’s sensations and medicine’s informatic systems.

  The nurses meet me in the examining room after I have replaced my clothes with a gown. They log into the system. Sometimes my blood has been drawn, and I am allowed to look at a printed page of its ingredients. Each week the blood flows with more or less of one kind of cell or substance than it did the week before. These substances go up or down, determine treatment’s future measurement, duration. The nurses ask questions about my experience of my body. They enter the sensations I describe into a computer, clicking on symptoms that have long been given a category and a name and an insurance code.

  The word “care” rarely calls to mind a keyboard. The work, often unwaged or poorly paid, of those who perform care (or what is sometimes called “reproductive labor”—reproducing oneself and others as living bodies each day, of feeding, cleaning, tending to, and so on) is what many understand to be that which is the least technological, the most affective and intuitive. “Care” is so often understood as a mode of feeling, neighboring, as it does, love. Care seems as removed from quantification as the cared-for person’s sensations of weakness or pain seem removed from statistics class. I care for you suggests a different mode of abstraction (that of feeling) than the measurement of the cell division rate of a tumor (that of pathological fact). But strange reversals reveal themselves during serious illness. Or rather, what appears to be reversal becomes clarification. Our once solid, unpredictable, sensing, spectacularly messy and animal bodies submit—imperfectly, but also intensively—to the abstracting conditions of medicine. Likewise, care becomes vivid and material.

  The receptionists, nursing assistants, lab technicians, and nurses are not only required to enter the information of my body into the databases, they also have to care for me while doing so. In the hospital, my urine is measured and charted by the same person who comforts me with conversation. This is so that painful procedures will become less painful. The workers who check my name twice, scan my medical wristband, and perform a two-person dose-accuracy reinforcement system as they attach chemotherapy drugs to my chest port are the same workers who touch my arm gently when I appear afraid. The worker who draws blood tells a joke. The work of care and the work of data exist in a kind of paradoxical simultaneity: what both hold in common is that they are done so often by women, and like all that has historically been identified as women’s work, it is work that can go by unnoticed. It is often noted only when it is absent: a dirty house attracts more attention than a clean one. The background that appears effortless appears only with great effort: the work of care and the work of data are quiet, daily, persistent, and never done. A patient’s file is, like a lived-in home, the site of work that lasts the human eternal.

  During my treatment for cancer, most of these workers—the receptionists, paraprofessionals, and nurses—have been women. The doctors, who are sometimes women and sometimes men, meet with me at the point of my body’s peak quantification. They log into the system, but they type less or sometimes not at all. As their eyes pass over the screen that displays my body’s updated categories and quantities, I think of John Donne again: “They have seen me and heard me, arraigned me in these fetters and received the evidence, I have cut up mine own anatomy, dissected myself and they are gone to read upon me.”1

  If it is the women who transmute bodies into data, it is the doctors who interpret the data. The other workers have extracted and labeled me: I have informaticized my own sensation. It is the doctors who read me—or rather, read what my body has become: a patient made of information, produced by the work of women.

  In approximately sixty hours, and for the second time, Adriamycin will be infused into my body through a plastic port surgically implanted into my chest and connected to my jugular vein. Adriamycin is named for the Adriatic Sea, near which it was discovered. Its generic name is doxorubicin, a name derived from “ruby” because it is a brilliant and voluptuous red. I like to think of this poison as the ruby of the Adriatic, where I have never been but would like to go, but it is also called “the red devil” and sometimes it is called “the red death,” so maybe it should be called the satanic jewel of mortality on the shores of Venice, too.

  In order to administer the medicine, the oncology nurse, after checking the prescription with a partner, must dress in an elaborate protective costume and slowly, personally, push the Adriamycin through the port in my chest. The medicine destroys tissue if it escapes the veins: it is sometimes considered too dangerous to everyone and everything else to administer by drip. It is rumored, if spilled, to melt the linoleum on a clinic floor. For several days after the drug is administered, my body’s fluids will be toxic to other people and corrosive to my body’s own tissues. Adriamycin is sometimes fatal to the heart, and has a lifetime limit, of which, by the end of this treatment, I will have reached half.

  In the United States, Adriamycin was widely approved for use the year after I was born, 1974, and this means that, including the years spent testing it, its use in cancer patients is older than I am. This is probably the same trea
tment Susan Sontag was given before she wrote Illness as Metaphor, one of the first books someone mails to me when I fall ill. To endure Adriamycin feels like an ancient rite, performed across the decades and on the occasion of many types of cancers as a ritual induction whether a patient needs it or not. Because of how it kills off cells totally in a classic way—turning people bald, making them throw up—its consequences feel like the oncological definitive. Lots of people have cancers that leave few marks on their appearance, but a cancer victim—in the cinematic sense—is a person who has had this kind of chemotherapy. That my treatment begins with it is a clear sign of how little progress has been made.

  Treatment with Adriamycin can cause leukemia, heart failure, organ failure, and will almost certainly cause me infertility and infection. Because, like many chemotherapy drugs, Adriamycin is a generalist in its destructions, it is also toxic to the central nervous system, and my mitochondria will begin to react to it three hours after its administration. This will continue for up to twenty-seven hours, but the damage cascades beyond treatment, is often sustained for years. As I sit in the infusion chair, the white and gray matter of my brain will begin to diminish. There is no particular way to know how this will change me: the brain damage from chemotherapy is cumulative and unpredictable. Although the drug has been in use for half a century, because it does not cross the blood-brain barrier, doctors sometimes did not believe patients about its cognitive effects, or when they heard these, they sometimes minimized the patients’ complaints as other kinds of cancer-related unhappiness.