by Laurie Sheck
1.
In her 1925 essay, On Being Ill, written when she was 42 years old, Virginia Woolf speaks of the spiritual change that illness often brings, how it can lead one into areas of extremity, wonder, isolation. “How astonishing, when the lights of health go down, the undisclosed countries that are then disclosed, what wastes and deserts of the soul….”
The body is no longer a site of comfort and familiarity but “this monster…this miracle.” Overwhelming, weird, intense, mysterious. And with this sense of estrangement from one’s familiar, healthy self, there often comes a profound isolation that colors the whole world, “Human beings do not go hand in hand the whole stretch of the way. There is a virgin forest in each; a snowfield where even the print of birds’ feet is unknown.” It is a stark and desolate image. A cold whiteness without the barest trace of interruption. It is a world stripped to its core.
In illness “we cease to be soldiers in the army of the upright; we become deserters.”
Daily life becomes a strange, exotic place. Longed for, various, remote. The unreachable land of ordinary habits, activities, frustrations, pleasures.
2.
Particularly since the pandemic, I have thought often of Woolf’s essay, and of Elaine Scarry’s seminal work, The Body in Pain, where she writes of the way “physical pain has no voice.” “Whatever pain achieves, it achieves in part through its unsharability.” This opacity to others outside oneself is a significant part of its cruelty. This applies, too, to the often relative invisibility of certain maladies, like Long Covid. And in that gulf between appearance and reality, between the self and others, a terrible knowledge arises. “One aspect of great pain…is that it is to the individual experiencing it overwhelmingly present, more emphatically real than any other human experience, and yet is almost invisible to anyone else, unfelt, unknown.” What Scarry writes about pain can also apply to many other aspects of bodily unwellness.
She compares the experience to a human being “making a sound that cannot be heard.”
She includes in her discussion an account by W.K. Livingston, a leading researcher of the physiology of pain, in which he recounts his bafflement regarding a colleague who “suffered nauseating pain each day for years as a result of an amputation.” When the colleague tries to explain what torments him as a feeling of “tenseness” his explanation leaves Livington feeling at sea, unable to truly comprehend what his colleague is trying to convey. In the face of physical unwellness, it seems words are often inadequate, feeble, imprecise.
Finally, in an effort to help Livingston understand, the colleague asks him to take a series of actions: “He asked me to clench my fingers over my thumb, flex my wrist, and raise my arm into a hammer lock position and hold it there. He kept me in this position for as long as I could stand it. At the end of five minutes I was perspiring freely, my hand and arm felt unbearably cramped, and I quit. ‘But you can take your hand down’, he said.” In contrast, the colleague had no such relief.
In that moment Livingston got just the barest glimpse of his colleague’s most pressing, relentless reality.
3.
Recently I read about axons, the long nerve fibers that conduct impulses away from the body of a nerve cell. How it’s said that if all the axons in one human brain were unwound and stretched end to end, they would equal 50 million miles and encircle the earth 2000 times. Or if aimed directly skyward, they could reach 100 times to the moon and back.
Giorgio Ascoli, founding Director of the Center for Neural Informatics, Structures and Plasticity at the Krasnow Institute for Advanced Study, points out that it would take ten years of continuous flying for a Boeing 747 to cover that much distance.
How mysterious the body is. How little we understand of it even now.
4.
Simone Weil: “The love of our neighbor in all of its fullness simply means being able to say to him: What are you going through?”
Even in the estrangements of illness, its wordlessness, and its too-frequent unreachability, where “being ill is before all alienation from the world”, that question matters.
“The sick person may hear the sounds of the street from the window as others go about their business. However, this world, which the patient had until recently inhabited, now echoes as though from an inaccessible distance.” (J.H. van den Berg)
5.
In illness, the body becomes a site of bafflement and interrogation, an “ongoing project of interpretation and repair.” “I no longer ‘am’ my body….Now I ‘have’ a body.” (Drew Leder).
In my own life, I have felt, during prolonged times of unwellness, an unsettling and painful sense of shame which infused every hour of my days and yet I barely spoke of it, as if the shame itself were a further wrongness and failure on my part. Looking back, I think I felt that on some deep, essential, even fateful level I had done something wrong, that it was up to me to right the body that had gone awry, that if only I could ask the right question or take the right action, I could put things right once again. Mostly I knew this wasn’t so, and yet I felt it. And all along I realized this sense of shame and blame was not something I ever applied to the illnesses of others, only to myself.
For many years my worst malady had no official name, and so like many maladies, often felt like a kind of shapeshifting, alien invader, or an uncanny, brilliant terrorist. Though it also felt like a languageless infant, one I longed to reach but couldn’t. If only I could find the words or thoughts to reach it, if only I could understand its particular needs, its origin, what it required. The philosopher, Hari Carel, who was diagnosed with a rare, incurable lung disease at the age of 35, writes of how, in tandem to her bodily struggles, “my mind still aches in its desire for freedom.”
But as the mind turns inward, trying to understand what has happened to the transformed and ailing physical self, such freedom is often illusive. And yet when achieved, how much more beautiful that freedom is than ever before could be imagined.
During the worst of my illness, what seemed most beautiful, what I longed for most, was the freedom of simple daily life. Getting up and putting on my clothes, reading, seeing friends.
6.
I have watched over the years your face and body transformed by illness. How even taking a few steps or carrying a book is an effort, the outside world a strange country, a place mostly of remembrance. Only your voice hasn’t changed. Several times a week I look at the apartment door and can almost see you entering as you did so many thousand times before, strong and with groceries in your arms, and news of where you were and what you did.
“It is precisely because our bodies are not tools that their dysfunction is so intimately linked to our well-being. Whereas my malfunctioning car can be sold and a new one bought, my body is me….Illness is an abrupt, violent way of revealing the intimately bodily nature of our being.” (Havi Carel).
“The change in illness is not local but global, not external but strikes at the heart of subjectivity.” (Havi Carel).
7.
In the dream I am trying to knit a woolen blanket. I look up from my effort to see other women around me—their blankets are of all different colors, greens and blues like the sea, large and beautifully made. But the blanket I am trying hard to knit— the small scrap I hold in my hands—is blood-red and ragged. No matter how hard I try I can’t make it beautiful like theirs.
8.
Affliction is an uprooting of life. (Simone Weil).
9.
At the height of my illness, which by then had gone on for several years, I took a microdose of LSD. Because the dose was small, I expected it to have little impact and assumed I would teach my graduate class later that day, as usual. I’m not sure what I was hoping for when I took it, maybe some glimpse of understanding into what had befallen me. But what happened shocked me—I was overcome with an almost unbearable and boundless grief and the certain, absolute knowledge that my ailment (which I found tormenting) would be with me for the rest of my life. When the tears came, I cried deeply for hours, unable to stop. I couldn’t go to my class.
I will never forget that feeling of absolute certainty. And yet, about five years later, I came across a newly-developed medicine that, when I tried it, helped a little, and a few years after that I found yet another medicine to try. What I was convinced was absolute was not.
“When the body is rendered opaque, we become aware of it as an alien presence.” And yet that body was myself—vulnerable, transformed, baffled, extreme, incoherent.
10.
Lewis Thomas: “If I were informed tomorrow that I was in direct communication with my liver, and could now take over, I would become deeply depressed. I’d sooner be told, forty thousand feet over Denver, that the 747 jet in which I had a coach seat was now mine to operate as I pleased; at least I would have the hope of bailing out, if I could find a parachute and discover quickly how to open the door. Nothing would save me and my liver, if I were in charge. For I am, to face the facts squarely, considerably less intelligent than my liver. I am, moreover, constitutionally unable to make hepatic decisions, and I prefer not be obliged to, ever. I would not be able to think of the first thing to do.”
Often I think of how strange it is to be this body I cannot possibly understand. How it functions basically without my knowledge, and, despite what goes wrong, how much goes right and well. How in its ongoing conversation with the world, it often feels like a form of goodness, and of love.
11.
Illness is a stranger that “continues to come, and does not stop intruding… a disturbance, a trouble in the midst of intimacy.”
When the philosopher Jean Luc Nancy was told he needed a heart transplant, he felt, “…the physical sensation of a void already opened up in the chest, a sort of apnea where nothing, absolutely nothing, even today, could help me disentangle the organic from the symbolic and imaginary, or disentangle what was continuous from what was interrupted…”
“…my heart, my body,” he wrote, “are reaching me from somewhere else, are a somewhere else ‘within’ me.”
Illness changes the sensation of time and space, of the organic and the symbolic, of the very feeling of the “I.”
12.
And yet for all it changes, is there something illness doesn’t touch? That survives it even so? I think of what Rilke wrote in the ninth Duino Elegy,
Once for each thing. Just once, no more. And we too,
Just once. And never again. But to have been
this once, completely, even if only once:
to have been at one with the earth, seems beyond
undoing.