The army was made of War Boys, lumpy with tumors, bald and pale as anyone in chemotherapy, many of them dependent on the terrifying medicine of another (captive) person’s blood. They looked like an army of the ill, aspiring to the state of machine, and given this, they had a hilarious lack of respect for being alive. One of them, gilding his mouth with spray paint (as was the custom of the War Boys when they were about to hurl themselves into something fiery or wrecking) said that he would “rather die historic on fury road.” Mad Max: Fury Road, the movie with the War Boys, took place in what looked like the kingdom of the mutated, the cancerous: that is industrial capitalism’s future kingdom.
I was coming up with categories of death, including one about the artist using, as material, their own. A type of death that wasn’t heroic, exactly, but perhaps was still historic—death as art as a death that means. But meaning may not be all that. Lots of things mean. And arguments against turning one’s sickness and/or dying into art include some convincing ones, like the effect it will have on those who will grieve especially the death of the dying or those who provide intimate care for the sick person who is always thinking she needs to make art out of it.
Serious, disabling illness often transfers responsibility for a body from the person who inhabits that body to the people around that person. It seems to transfer the weight of subjectivity, too, or maybe more precisely, “will.” The sick person has enforced upon them a diminishment of their will. Processes in their body they once controlled they often can no longer control. Choices they once could make about what to do, how to behave, vanish, when illness (or “cure”) itself seems to have greater agency than the sick person. It could be the very material of illness is not the sick person’s own.
Caregivers act as a kind of external will to the increasingly sick person whose own will obsolesces. One effect of this is that when there is art—and particularly literature (that petri dish of subjectivity)—about serious or fatal illness, it is more often made from a person who observes, rather than by the person who experiences. This might also have to do with the kind of visual prejudice of the world as it is, that what is seen is often more real than what is felt.
Think of a sickbed scene, and then think how rarely it is painted from the point of view of the person who is in it. It would be of the ceiling, the wall, of concerned faces in rotation, of pain and its resistance to representation, or Emily Dickinson’s
Pain—has an Element of Blank—
It cannot recollect
When it begun—or if there were
A time when it was not—It has no Future—but itself—
Its Infinite Contain
Its Past—enlightened to perceive
New Periods—of Pain.
The sickbed scene as painted by the sick herself would have to 1) be on a canvas with no edges 2) be too small to measure 3) be too large to contain 4) happen outside of time 4) happen inside of history 5) grant a genius of looped future perception 6) exempt the present from the linear 7) rearrange substance so that “blank” is an element 8) rearrange aesthetics so that the negative is what mostly is. That kind of painting would be difficult.
The sick person who insists on retaining a lot of subjectivity, especially through art (that petri dish of self-objectification) is near perverse, and to make an art of it is often in conflict with their caregivers, the ones who say “rest.” The carers maybe need that transference of will, of agency, that comes with the sick person’s diminishment. Maybe they need that room to develop their own subjective accounts with the sick person as an object. To increase in one’s own will, one’s own subjectivity, is a modest stipend for the work of caring, and maybe a carer’s necessary preparation for grief. The least carers deserve for all that work, perhaps, is the chance to frame the painting.
“To look these things squarely in the face would need the courage of a lion tamer; a robust philosophy; a reason rooted in the bowels of the earth,” wrote Virginia Woolf in “On Illness,” about why there was no great literature made of being ill.
A friend said I was making death too interesting in all these thinking, that I needed to be a conceptual poet about it. I think he was suggesting that I needed to cultivate an aesthetic of tedium about death: to approach death as a typer of records, a collator of scripts. Death—the ultimate data processor, and so on, or death as one of those big computers that used to fill up entire floors, barely as functional as a calculator—to be so contemporary about death that I would never be attracted to it and would stay, this time, on the side of life, with its social media forums and paychecks and fossil fuels.
This was a good suggestion. He was probably right, but imagine the banality of dying with a stubborn devotion to the contemporary like that—a pastel and antiseptic surrender to data and medical aesthetics. And to die as information?—I’d rather spraypaint my mouth.
I stayed with the living, despite all my fascinated thinking about the aesthetic and ethical problem I was presented by being so sick in a way it was possible to die from. Later I read in a book about the leper revolt, how lepers planned for two years—not just for their revolt, but also the world after it. They planned for who would get what and how. The wells, streams, and fountains would be simultaneously polluted with a kind of poison—a mix of urine and blood and four different herbs and a sanctified body—and 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. I didn’t know before this when there had been times when the struggle between the sick and well had been so clearly drawn. 1321 might be the only year in history in which the infirm, infectious, and disfigured organized collectively to rearrange their world.
This leper France never actualized: the plot was found out, the lepers were rounded up and brutalized, the lepers and some of their suspected accomplices were 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. Or, as Woolf wrote: “how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our head and wake thinking we are in the presence of angels.”
Poet and essayist Anne Boyer was born and raised in Kansas. She earned a BA from Kansas State University...
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