For the past several years I have had an illness which is now called Chronic Fatigue Immune Dysfunctional Syndrome or CFIDS. CFIDS is most probably caused by a virus, as recent experiments indicate, possibly a retrovirus. Although many of those who have it also have environmental sensitivity, CFIDS is not caused directly by environmental pollution. However pollution and radiation are know to damage the immune system and a weakened immune system provides a good host for disease.
In 1988 I suffered a severe attack of CFIDS which left me unable to care for myself and disabled for the better part of a year. During that time I felt a powerful resonance with our planet which is besieged by ecological damage. It was in that state of mind that I wrote the following.
It is early in the morning. Perhaps five o’clock. I don’t want to sit to see the clock. Any unnecessary move may mean I will never get back to sleep. For anyone with my illness, to lose sleep is disastrous. Yet, insomnia is one of the symptoms. I am almost always awake at this hour. I fall back to sleep at six or seven. And in between I think. The wind is dashing the trees into the windows. Banging. Creating a feeling of great crisis. Clamor. Trouble. Like a character from Wuthering Heights, I feel comforted by this. The wind echoes my feelings. Though I have learned to detach myself. I say, summoning up all my nerve, this is just biochemistry, this desperation, a simple storm in my brain. This is just the mood of the night.
To become interested in the physical states and the states of mind created by this illness has become one of my saving graces. Now I am trying to remember an old literary term I learned in school years ago. It refers to a concept critical of the Romantic identification with nature, and suggests that any resemblance between human emotions and the weather is a mere conceit, pure fantasy, unscientific. The raging wind, so goes the argument, does not feel rage. Wind cannot feel.
A few weeks later the words sympathetic fallacy return to my mind, like prodigal or misplaced children. Even on the best days, there are things I cannot remember. This is, I say with trepidation and relief, just a temporary lapse. The word, name or object will eventually return. Just not when asked for, not by me or anyone.
At this hour this vanishing feels more ominous. The more weak or in pain I feel the more I want a sense of control of language. I want to meet these terrors with a brilliance of words. But it is in the worst moments that words fail me. In dialogue I encounter a disadvantage. When I am asked, Where did you read that? or How do you know that? I cannot remember. An argument I have made in my own mind many times hovers just beyond my capacity for speech, like some kind of intellectual Tantalus. But it is not dialogue I mourn the most so much as the loss of texture itself, a texture which allows language to move beyond mere reference and enter experience, the subtle shades of being.
And then of course I know immediately I am grieving a quite literal loss. Before this last and most severe attack, while sitting in a chair talking with a student, I realized that whole parts of myself were disappearing. At first I could no longer feel my hands and feet. They were muffled in a semi-numbness, screened by an odd tingling. Then, over time, legs, arms, parts of my face, the back of my head, shoulders vanished, replaced by the sensation of needles which grew strong as the rest of me grew weak. I became conscious of the enormous effort I seemed to be making to keep myself from fading like a faint signal on a screen into oblivion.
One night in Germany after I finally collapsed I dream that I am put to bed in a room with a brick wall. I try to sleep. But the wall is crumbling. Just outside the wall a couple of menacing skinheads stand, listening to hard rock. I can’t bear this music, especially now. The crumbling wall is an accurate symbol for my bodily state. It is as if I have no skin. Loud music, loud noises pass right into me. There is no protection. The illness affects the nervous system, at times causing spasms, little seizures. Ghostly white shapes imprinted in the results of those tested suggest that the outer layer that protects the nerves is being stripped.
In my dream, no one else seems to notice the crumbling wall. Certainly those around me in my present life know that I am ill. I am treated with kindness. But the inner state that this virus produces is nearly impossible for others to grasp. What a relief when a few of us among the afflicted gather. As each of us tries to bend language around and through this strange experience, the look of recognition passes through the room. We elude the awful paradoxes, entrapments that would do well in Dante’s Inferno—a ceaselessly restless feeling that accompanies the worst exhaustion; the fear that one is dying; the experience of isolation, and yet at the same time an intolerance for too much conversation, too many people, too much presence; the magnification of every sound, every movement, together with a sense of approaching the world behind reams of gauze, so that reality is oddly muffled. The other symptoms, migraine, aching muscles, the intense pain of arthritis in every joint, nausea, dizziness, vertigo, heart palpitations, debilitating weakness, these are all easier to name. But how can one describe the feeling of being under attack from many of these symptoms at once, or the fear as what we call the virus seems to move to yet another location.
5:30 a.m. Is it a sympathetic fallacy to imagine that I am experiencing the morbidity of biology itself, the end of the life cycle on earth, thrown into confusion by a matrix in opposition to itself, disharmonized by all the strange phenomena human beings have created: plutonium, tritium, carbon fuel, DDT?
A series of intense dreams began just before I left for Germany. Over time they grew more dramatic. One day a friend read me a story from a German newspaper. Thousands of seals were dying in the North Sea, perhaps from an immune disorder. A photograph showed their bodies stacked high on the beach. That night I dreamt I was on a beach. I stood in front of the dead seals, delivering an oration to the sunbathers, laying with their sun tan lotion, on the sand. Don’t you see, I pleaded with them, if you don’t do something, this is your future.
Now, at this early hour, I have the same feeling again. It is not a feeling I have had with any other illness. Others with immune disorders have also spoken of it. One feels the world dying within one’s own skin. Afflicted with AIDS, Lupus, CFIDS, we are like the canaries brought into the mine to test the safety of the air for the miners. Am I indulging in apocalyptic thinking, layering environmental disaster over my bodily state as a kind of coincidental metaphor? No, the feeling is too insistent, the symbolism too elegantly fitting. It is not only that the immune systems of many other mammals are also under assault now (not only the seals, but whales in the St. Lawrence Seaway, dolphins in Santa Monica, koala bears in Australia). There is also the eerie experience of the illness itself. The slow disappearance of capacities, sensations, energy, which is often, until one is desperately ill, invisible to others. A sense of grief which seems to well up from the very materia of cells. Not only the clinical fact of toxicity, but a feeling of having been poisoned. I am not alone in these feelings; they are as if part of the inner life of this illness.
In my journal I begin a series of meditations on these various states of feeling. I do not always ascribe symbolic meaning to them. Often I simply record them. I note both physical and mental states, since the illness affects brain chemistry. To lend these phenomena attention brings about a profound reconciliation with my body. Poised on the edge of survival, I have been forced to pay these symptoms respect. Turning my gaze in this direction, I enter the world of physical being.
A state of irreconciliation and disrespect toward the body is not mine alone. It is a habit born of a culture that denigrates all that is “mundane.” The mind shaped thus learns not to value material existence for itself, and prefers not to dwell there for too long. Out of new respect for the material of my own existence, I do not immediately subject my body to analysis. Rather I allow the terrain to become familiar. Like a peasant who has lived and worked on the same land for a life time, I know there is a meaning here unto itself, and mysteries. When I begin to measure, it is not with a ruler but with footsteps, odors and chills, hungers and angles of light.
At the end of August, after reading John Berger’s account of peasant life in Alpine France, I write in my journal,
To be reduced, the conventional thinking goes, to the mere tasks of survival is a kind of degradation. Part and parcel of this thought is the mistaken idea that life’s meaning transcends physical survival and is not derived from it. But a peasant derives meaning from the tasks themselves. Our “holy days” come from these tasks—the harvest, the sowing—but we forget.
Submerged entirely in the body, or the body of the earth, through intense suffering, or through the intense and unremitting intimacy with the stuff of life that is part of physical labor, one can grasp the immanent meaning. The connection is not abstract. Because there is swelling of the brain, one is sensitive to the least fluctuations in barometric pressure. My friend Jan experiences the Alaskan cold front as a seizure. One is aware then of how the wind howling outside this night is part of oneself.
Perhaps this is why denial can be so excruciating. If there is any dignity in pain it is in the simple recognition that it exists. Up half the night with a sudden and unexpected bout of pain, the next day, in a state of near exhaustion, I go out anyway. A passing acquaintance asks me how I am. Better, but still ill, I say. Well, you look very good, she says. How I understand the impulse. I have said the same words to others, hoping to encourage them, to say something positive, to make words perform miracles of transformation. But now I am left isolated, oddly disconnected from this dialogue, in this body on its weak legs, with its failing balance and the sudden blankness in my mind as I try for two infinite minutes to remember where I am and why.
Why should this console me: the howling wind and then silence, as if the planet itself were in a fluctuating state, looking so lovely in the near spring, pollution making an exquisite display at sunset over the bay, small deaths occurring at the edges, in peripheral vision, or out of sight? If only for this reason, that to know is a form of intimacy in sickness and in health, a form of love. A conversation takes place, a call and response, as earth speaks and listens within me.
For further information about CFIDS, visit the CFIDS Foundation at www.ncf-net.org.