Medicine has not conquered pain, though it has developed the means to control pain during much of critical illness. Pain is experienced most at the beginning of illness, before physicians understand what is happening, and at the end, when the body becomes unpredictable. Since my experience happily did not reach that end, pain belongs at the beginning of my story.
Pain is the body's response to illness; it is the first thing many people associate with illness and what they fear most. Whether or not pain is the most difficult part of cancer to live through, it is probably the hardest to describe. We have plenty of words to describe specific pains: sharp, throbbing, piercing, burning, even dull. But these words do not describe the experience of pain. We lack terms to express what it means to live "in" such pain. Unable to express pain, we come to believe there is nothing to say. Silenced, we become isolated in pain, and the isolation increases the pain. Like the sick feeling that comes with the recognition of yourself as ill, there is a pain attached to being in pain.
My pain was the result of pressure exerted by the secondary tumors in my back, a pressure that became more acute when I lay down for some time. In the mornings I would wake up feeling a viselike pressure on my lower back around the kidneys. Soon the pain began to wake me at night, preventing me from sleeping. After several nights I was too tired to shake off sleep entirely, even though rest was impossible. I spent those nights in a kind of limbo between waking and dozing, always inside the pain.
My disease connected pain with night. As the tumors took over my body, pain took over my mind. Darkness compounds the isolation and loneliness of pain, for the sufferers are separated from those whose bodies lie quiet. In darkness the world of those in pain becomes unglued, incoherent.
In writing about the incoherence of pain, one risks becoming incoherent all over again. Language easily goes wrong. I could write that at night in pain I came to know illness face to face. But this metaphor distorts the experience. However much I wanted to give illness a face --- to give it any kind of coherence --- it is not a presence. Giving illness a face, a temptation enhanced by the dark, only muddles things further. At night I faced only myself.
When we feel ourselves being taken over by something we do not understand, the human response is to create a mythology of what threatens us. We turn pain into "it," a god, an enemy to be fought. We think pain is victimizing us, either because "it" is malevolent or because we have done something to deserve its wrath. We curse it and pray for mercy from it. But pain has no face because it is not alien. It is from myself. Pain is my body signaling that something is wrong. It is the body talking to itself, not the rumblings of an external god. Dealing with pain is not war with something outside the body; it is the body coming back to itself.
But taking pain entirely into my own body, making it too much my own, carries the danger of becoming isolated in that body. Isolation is the beginning of incoherence. When the body is healthy, it coheres, its parts work in concert, and it fits into its environment. Lying down, the body finds comfort and rest. Waking, it is ready for activity. In pain the natural rhythm of rest and activity is lost, and that loss leads to further losses of plans and expectations, of a life that makes sense as a fitting together of past and future. Order breaks down, and incoherence takes its place.
At night, while others are sleeping, it is coherent to sleep, to share that rest. To be summoned out of that rest is an incoherence, a loss of the wholeness that is the natural cycle of life among others. But again my language slips. No thing summoned me from sleep. Bodily pain woke me, and the consciousness of this pain turned into the incoherence of being awake, isolated from those who slept.
Pain is thus one of the first experiences an ill person has of being cast out. To regain a sense of coherence, in which pain may have to remain a part, the ill person has to find a way back in among those he has become separated from. When I was awake at night in pain, I could have woken Cathie [his wife]. I could have called her to witness the pain and to break the loneliness, but waking her would have violated the coherence of her natural cycle of daily life. She still worked during the day and slept at night. Her life retained the coherence mine had lost. I was outside that natural cycle. During the day I was too tired to work, during the night the hammering in my back prevented me from sleeping. I was neither daily nor nocturnal, but suspended outside the limits of either existence. I was neither functionally present nor accountably absent. I lived my life out of place...
I fantasized that this pain was "just for tonight," that it was muscular stress and would be gone tomorrow. This fantasy was fueled by my fear of what might truly be wrong with me, but it was also supported by what my doctor was telling me. One night he prescribed a strong sedative, and when I awoke even from that, the nightmares that accompanied me out of sleep did give incoherence a form and a face. After that night I could no longer sustain my part of what had been my doctor's and my mutual fantasy.
But I have only half-answered the question of why I did not wake my wife. The other reason is that her sleep was the only coherence left. Although I could no longer share in others' rest, I cared for it all the more. If I could not sleep, I could still love her sleep. Disturbing it would have been the most painful thing I could do. Later, when I was very ill, I watched people out running and loved their capacity for movement, their freedom within their bodies. My hope was that they also valued what they were able to be.
I wish I could finish my story about pain with some formula I learned for dealing with it. But I never learned one. By the time I entered the hospital, the tumors had shifted or somehow changed, allowing me to lie in bed comfortably. There is probably some medical explanation for this change, but it does not interest me much. What counts is that the pain did its proper work: it forced me to get another medical opinion. By the date of the urology appointment made by my family physician, I had already had surgery and one chemotherapy treatment. Pain was the ally it is designed to be, my body's way of insisting that something must change.
Although I never discovered a formula for dealing with pain, I did manage to break through its incoherence one night before it abated. Making my way upstairs, I was stopped on the landing by the sight --- the vision really --- of a window. Outside the window I saw a tree, and the streetlight just beyond was casting the tree's reflection on the frosted glass. Here suddenly was beauty, found in the middle of a night that seemed to be only darkness and pain. Where we see the face of beauty, we are in our proper place, and all becomes coherent. As I looked at the window it formed a kind of haiku for me:
The streetlight behind the branches
On a misted window
Do not wipe the glass
Lest others wake.
I realized that if illness has a face, it could be the beauty of that light. But I did not see the face of illness in that window any more than I had seen it in the nightmares caused by pain breaking through the sedative. The window was no myth, no metaphor. It was exactly what it was, and seeing it completely absorbed my attention. I was still in pain, but the pain had brought me to that landing, which was the only place I could be to see the beauty of that window. Coherence was restored.
But coherence does not go without saying; it requires expression. However poor my verse was, I was once again expressing myself. Pain that is inexpressible isolates us; to be mute is to be cast out from others. Whatever form our expression takes, we offer that expression to others, whether or not anyone else is there. Expression implies the presence of others, and we begin again to share in humanity. Others slept their orderly sleep, and I, in my place as they were in theirs, saw something of beauty. I remained alone, but my words put me in the presence of those others.
It is just as hard to write about the coherence I felt as it is to write about incoherence. But it does not matter if my words are not coherent. For the ill person, the attempt to communicate creates an experience of coherence. The particular words in my verse did not matter; it was my attempt at expression that created coherence. I needed the window to see the verse, and I needed the verse to place my seeing in the world of others and thus regain my place in that world.
It is easier to write of caring. I knew that others were sleeping, and I cared for their sleep; I knew there were things of beauty in the night that I cared for. These feelings made pain something I could live with. At the moment when the incoherence of illness and pain makes it seem that all you have lived for has been taken away or is about to be lost, you can find another coherence in which to live. That night the pain mattered less, not because I dissociated myself from my body, but rather because I associated myself beyond my body. Caring for Cathie's sleep or for that window gave me the coherence I needed to go on caring for myself. I had not yet been sick enough to understand all I saw in that window; only later would language catch up to experience. But at least that night I knew I was in a place I could care for.--- At the Will of the Body:
Reflections on Illness
Arthur W. Frank
©2002 Mariner Books