The Undying

by Anne Boyer

  Moments of taking charge of ourselves foreground themselves in a lot of forgettable necessity. An interesting story is made of agency, but humans exist as fully on this shadow side of helplessness as we do on the daylight side of doing what we want. To be cared for is the invisible substructure of autonomy, the necessary work brought about by the weakness of a human body across the span of life. Our gaze into the world is sometimes a needy one, a face that says “love me,” by which it means something like “bring me some soup.”

  In infancy, this asking comes, in part, with a promised relationship to the future—love me, the face of a baby says, and it will be the cause of the future’s beneficial effect. Care for me, the helplessness of a baby says, so that I can be a person who will grow up and be able to care for others in turn.

  When we are elderly, the face that says “love me” does so by evoking a remembered relationship to the past—love me, an elderly person’s need says, and as the effect of the past’s beneficial cause of the love I gave you or someone or something else.

  But the unexpectedly sick person—the one incapacitated in their body when they should have, in the accepted social order, been doing something else, like caring for their own children or caring for the elderly around them or going to work—must cash in their love me from the collateral of every or any temporal experience, calling in the past, playing on hopes for the future.

  Love me, the sick person in the prime of their life says, trying to look as if they will grow strong again, for what I have done before, and also what I might do, and also love me for the present in which I am eternally trapped, uncertain of my exact attachment to time.

  The title of the past four days has been Neutropenia in the Time of Enterovirus. My blood counts show that my immune system barely exists. I have been unable to be around people, afraid of becoming deathly ill, not just from the enterovirus but threats like the common cold or invisible mold on refrigerated food. My friend Cara has taken away all my houseplants for fear I might become sick from the soil’s microbes. When people bring me flowers, she takes these, too. The only time I leave my apartment is to take walks alone. On one of these walks I forgot myself, petted a large black poodle, then remained in fear of my own hands for a mile.

  In Goethe’s Faust, Mephistopheles takes the form of a black poodle, follows at Faust’s heels. When others see the poodle, they see only a dog, but when Faust sees it, he sees future fetters being woven around his feet. The poodle growls, and Faust tells it to be quiet.12 I read somewhere that when Faust says, “Be quiet, poodle!” he is actually speaking to himself.13

  Every day then, as I still do now, I swear that I will never again reproduce the battered account that happened in my notebook the day before.

  I have always hated every shade of the heroic, but that doesn’t mean I’ve never had that look. The common struggle gets pushed through the sieve of what forms we have to make its account, and before you know it, the wide and shared suffering of this world is narrowed and gossamer, as thin as silk and looking as special as the language it takes to tell it.

  Language is common, too, but in the same insidious processes of finding a way to tell, language gets attached as property to its teller, as if the singularity of any given mouth is a singularity of having been born, or having felt pain, having been scared or having needed care, having set out to interpret the uninterpretable dream of waking up each day to the worst. The telling is always trying to slide down into a reinforcement of the conditions that made us want to say something in the first place, rather than their exposé, as if the gravity of our shared diminishments is more powerful than any ascendant rage.

  Keenly felt suffering gets assigned to one type—some elegant specialist’s languorous and pale upper-class faintness of being—and in its telling, comes out looking, no matter the reality, like a treasure of that class.

  If you didn’t know me, you might think, too, that my illness was so precious it was merely a suffering for the sake of semiotics, that I sat in the infusion room thinking only of Ancient Rome. But 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.

  My cancer was not just a set of sensations nor lessons in interpretation nor a problem for art, although it was all of these things, too. My cancer was a captive fear that I would die and leave my daughter in a hard world with no resources, a fear, too, that I had devoted my life to writing and sacrificed all I had to never come to its reward. It was a terror that all I’d ever written would sit data-mined but not read in Google’s servers until even Google’s servers were made of dust, and in the meantime, I would become that unspeaking thing, a dead person, leaving too soon who and what I loved the most behind, unprotected, and alone.

  The deer struggled to get up, then fell, then struggled to its feet, slumped its way into the bank parking lot after being hit by a car. My daughter, who was fourteen years old at the time, said,

  “Anne, I hate what the world has done to the world.”

  and

  “The only choice left is terrorist or shut-in.”

  I tell my daughter that my BRCA genetic test came back negative. I tell her that without a hormonal cause and without a genetic tendency and without obvious lifestyle factors the cancer I had probably just came from exposure to radiation or random carcinogens, that she doesn’t have to worry that she is predisposed or genetically cursed.

  “You forget,” she answered, “that I still have the curse of living in the world that made you sick.”

  Every person with a body should be given a guide to dying as soon as they are born.

  5.

  A problem with art as it approaches suffering is that those who suffer are so often worn out from having suffered that any account of that suffering is exhausted before it is even tried. I was tired, and up against the problem of needing to tell what happened in the presence, too, of vulnerability’s difficult sublimity and everything else rumored to be ineffable. How could I write about the world as it is 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?

  It sometimes feels more painful to talk about having cancer than to have it. It feels more difficult to re-create the experience and impressions of an illness than to endure them. It is more trying to look into the scene from the center of the scene, to contort like that toward the true, than to turn one’s head and lower one’s eyes and get through as others have gotten through, accepting what’s told to them, hoping for the mercies of forgetting.

  I would prefer to write about anything else. “But the truth,” wrote Bertolt Brecht, in an essay about the difficulties involved with writing it, “cannot merely be written; it must be written for someone, someone who can do something with it.”14 I would rather write about anything else, not only for fear of the pain of examining the pain, but also for fear of turning the pain into a product. I would rather write about anything else, not just for fear of telling the same story, but for fear that the “same story” is a lie in service of the way things are. I would rather write about anything else, but I know that other people exist, all of us with bodies inside history, all of us with nervous systems and nightmares, all of us with environments and hours and desires, like the one to not be sick, or to not get sick, or to understand what it means when we are.

  A writer must, wrote Brecht, be courageous enough to know the truth, keen enough to recognize it, skillful enough to weaponize it, judicious enough to know who might be able to use it, and cunning enough to help it find its way.15 And the truth must be written for someone, a someone who is all of us, all who exist in that push and pull of what bonds of love tie us to the
earth and what suffering drives us from it.

  Back in the Roman Empire, Aelius Aristides had a problem. He wanted to write a book, but he didn’t know how to organize the information of his experience:

  Since I have mentioned the river and the terrible winter and the bath, am I next to speak of other things of the same category and am I to compile, as it were, a catalogue of wintry, divine, and very strange baths? Or dividing up my tale, shall I narrate some intermediate events? Or is it best to pass over all the intermediate things and give an end to my first tale, how the oracle about the years held and how everything turned out?16

  HOW THE ORACLE HELD

  1.

  After the cancer has you, you forget how much life you have lost to living, and also how much of yourself you have lost to illness because it is difficult to take care of the illness and to take care of yourself as well. To take care of your illness can become the whole reason for existing, a marriage arranged by fate, and later when it isn’t the acute illness stealing life from life it is the chronic disabling conditions left over from curing it, too.

  Cancer then feels quaintly catastrophic in the manner of the previous century, the one from which my cancer’s treatments are carried over, as are its causes. It is as if I am both sick with and treated by the twentieth century, its weapons and pesticides, its epic generalizations and its expensive festivals of death. Then, sick beyond sick from that century, I am made sick, again, from information—a sickness that is our century’s own.

  In the industrialized world, an estimated half of us have cancer, or will get it, and most everyone, even if we don’t know it, is carrying a little bit of it around. Cancer doesn’t even really exist, at least not as itself. Cancer is an idea we cast as an aspersion over our own malignancy.

  That we carry around errant cells in breasts and prostates and lungs is not the crisis. Cancer becomes a crisis twice: once, upon its discovery, and next, in its discovery’s effect. Its effect is most often a calamity of medicine, or a calamity of its absence, the first orchestrated in prevention of the calamity of death, which, along with birth, is the least unique calamity on earth.

  Under the conditions of these calamities, there is no listening to my body, which in these circumstances keeps saying the wrong things. My body feels like it is dying as a side effect of what is promised to keep it alive, and requests, as its preservation, its destruction: to not move, to not eat, to not work, to not sleep, to refuse all touch. Every nerve is a beggar, asking for the alms of an end. Any wisdom of my body comes out as an insufferably melodramatic request made by a fool. I had to believe, however, that all my body meant by wanting to die then was not that it hated life, only that it could no longer bear this.

  Then my body bore the unbearable, as many of ours do. Sometimes the only way to survive the worst is to run to the perfect refuge of being dulled. Disassociation reigns, but no one minds your daydreaming when you are sick with cancer. Some friends appear to wish that I would disassociate more, that I would give up my love of lucidity through events better survived in mental retreat.

  Despite icing my hands and feet all during chemotherapy in an attempt to avoid it, my fingernails and toenails begin to lift from their beds. Fingernails lifting from fingers hurt as badly as fingernails lifting from fingers should. I bandage my iridescently painted nails onto me. I’ve lost friends, lovers, memory, eyelashes, and money to this illness, so I am stubbornly opposed to losing anything else to which I am attached. My nails fall off despite my opposition.

  My nerves begin to die, disintegrating into a sizzling sensation from their ends in my fingers, toes, and genitals. Then my fingers are the most annoying solipsists: numb to the world, outraged in their interiors. Your Oncology Journey says the solution to this condition, neuropathy, is to ask others to button my shirt, but it doesn’t explain who. I’m made clumsy by altered proprioception, too. I can no longer trust my feet to tell me where I stand.

  A woman I know tells me that she, as she had once known herself, has never really returned from the cancer she had thirty years ago. Now in her seventies, she says that she goes to work and comes home each day to spend her hours in disassociated blankness, and because she has to work for a living, must go there once more in the morning and pretend that she exists again. Some of us who survive the worst survive it into bare inexistence. Aelius Aristides described this, too: “Thus I was conscious of myself as if I were another person, and I perceived my body ever slipping away, until I was nearly dead.”

  I think of the medieval Islamic philosopher Avicenna’s floating man, who, denied all sensation, still knows, as proof of the soul, that he exists.1 I am not sure I believe him. A better answer is found in the Roman poet Lucretius’s argument in his epic poem, De rerum natura, that we can die inch by inch. Every cell is a kingdom of both substance and spirit, and any kingdom can be overthrown. Our life force, like our flesh, never seems to issue away from us all at once. Anyone who has been half dead can attest to this. What we call our soul can die in small quantities, just as our bodies can be worn, amputated, and poisoned away, bit by bit.2 The lost parts of our souls are no more replaceable than the lost parts of our bodies, life incrementally lifting from life, just like that. And there we are, mostly dead, but still required to go to work.

  All that’s left from before is the vague term “myself,” which I now can compare with cancer’s impersonal irreality. For a long time once it all gets going, I feel as if I am probably dead, haunting the earth’s slightly familiar territory, a postbiological traveler to an afterlife in which for whatever reason I am sometimes allowed to believe that I am alive and achieving modest success. If I were still alive, I thought, I’d have at least visited California. If this were really life, I thought, there’s no way that many people would have read my book of poetry. If I am dead, I am at least pleased that the administrators of eternity have assigned me a morally complex and moderately pleasurable afterworld.

  It is awkward, over dinner, when I admit to people that I might not be alive. There is, too, a difficulty in trying to prove to yourself that you exist. It would take a newsfeed the duration of the cosmos to remind you of what you actually are, the constant insistent scrolling of that proof, the friends you once had, the mistakes you made, the feelings you hurt, all the beds you slept in, all the books you read, the enemies who consider you now too pitiable to be a rival, the way you looked in those days versus the way you now appear. Memory is that newsfeed for those who have been allowed to keep their minds intact, but I am not so lucky, having had to exchange mine for my life. Real literature would be Proust in Bed, about an affluent man who is deeply interested in his mother. My book should be called The Medically Induced Failure of the Remembrance of Things Past.

  I read later that feeling like you are dead can have its mechanical cause in certain kinds of brain damage, such as the kind I’ve endured from chemotherapy. I’m a ghost, but my loss of me isn’t even metaphysical—it’s mechanical. Yet the rational explanation of why I feel dead half the time does little to mediate the irrational horror of existing in a way that I feel I don’t exist. Here we are, here I am, alone and myself, half of me fallen off, half of us gone, and all of us as ghosts or the undying ones, half of us dead and half of myself nowhere to be remembered or to be found.

  2.

  In 1974, the year the FDA approved the chemo drug Adriamycin, the British novelist D. G. Compton published The Continuous Katherine Mortenhoe, a novel about, among other things, a woman who has been told that she is about to die. Mortenhoe is diagnosed with a fatal case of Gordon’s syndrome, a disease half caused by information overload, the “inherent physical limits to the amounts and speeds of image processing possible in the human brain.”3 But a person with Gordon’s syndrome isn’t only dying of information: she is dying of her outraged response to it. What Mortenhoe is told she is dying of is the kind of outrage that comes after a person has been inundated with data, screen after screen of it. It’s a perpetual state of outrage ove
r information that has caused Mortenhoe’s mind, her doctor explains, to fatally resist the structures of the world, creating, as he says, “a pattern of rebellion.”4 He says nothing can be done—she’s been too sick and too relentlessly oppositional. A computer has measured out the rest of her life for her: she has a month to live. Katherine Mortenhoe has to die because in response to the world and all the information in it, her brain is in the constant state of wanting to throw up.

  Mortenhoe works at a publishing house called Computabook. As she waits for news of her illness, she enters plots into a computer program, named Barbara, that writes novels. Upon finding out that she herself is dying of “burned out circuits,” Mortenhoe begins to pity the computer program she works with, whose circuits are also overworked—“Poor Barbara,” she repeats. Mortenhoe begins to imagine a literature written in the old-fashioned way, without the intervention of the machines. She would write a book that would include people as they really are, she thinks, “each one simply chemistry, simply a bundle of neurons, each bundle equipped with an internal communications system built up down life’s millennia for reasons mostly obsolete.”5

  Mortenhoe works in the Romance division—she is the Romance division, Romance’s sole manager and employee—so it is no surprise that despite her cybernetic positivism she goes on to think, “My story will contain the only reality, that there is no reality, and it will make me famous. I shall write it possibly in the hospital, possibly dictating the last chapters as I die.”6

  Mortenhoe is dying of disease in a world where almost everyone now dies of old age, and for this reason, she becomes a minor celebrity. To satisfy a “pain-starved public,” the media has begun to follow her, hoping for photo opportunities. To keep them at bay, Mortenhoe fills out the paperwork to get a permit for three days of “private grief.”