In the winter of 1623, English poet John Donne was stricken with epidemic typhus. “Variable, and therefore miserable condition of man!” he wrote. “This minute I was well, and am ill, this minute.” Typhus, a louse-borne bacterial disease, killed hundreds of thousands throughout Jacobean England. At age fifty-two, Donne suddenly found himself feverish, tormented by headaches, covered with spots, and forced to take to his bed. But at least one admirable outcome of his bout with typhus was his book Devotions upon Emergent Occasions, in which he mused passionately on the condition of his stricken body and soul.
Coping with my own long-term illness, Chronic Fatigue Syndrome, I find myself drawn particularly to Donne’s third devotion. Lying in his feather bed, which fever and pain have transformed into a bed of thorns, he prays, “As thou hast made these feathers thorns, in the sharpness of this sickness, so, Lord, make these thorns feathers again.”
Since I became sick, I have often longed for the same.
I once moved through my world like a halfback, always trying for that extra yard. Now I conserve, I loiter, I move as in a dream. . . .
If you knew me five years ago, before I got sick, you would not know me now. I used to run, but now there are hand-carved hazel and cocobolo canes in my closet where running gear used to be. I can no longer work, so a wardrobe of baggy sweats and wildly patterned, floppy pants has replaced the trim three-piece suits and snug-collared shirts of days past. I wear clogs instead of wingtips, since for years it’s been a challenge just to tie my shoelaces. I use my fingers instead of a brush to manage my hair, which — like my beard — is shot with gray. The lean and hard body I worked so diligently for years to sculpt is much softer now. As my wife, Beverly, says, it seems like my armor is gone.
A lifelong city boy, I now live in the country and love it, despite the spiders and carpenter ants, the skunks and porcupines, the poison oak. And I have slowed down. I once moved through my world like a halfback, always trying for that extra yard. Now I conserve, I loiter, I move as in a dream — otherwise I’d fall or run into something. But out of this necessity has come a new way of being for me.
To begin with, there’s music. Before I got sick, I loved late-fifties and early-sixties rock-and-roll: Elvis and the Everly Brothers, Buddy and Fats and Chuck and Jerry Lee. Throw in a few show tunes for variety — Guys and Dolls, Camelot, South Pacific. Music was for singing along with — on the phonograph, or on my headphones as I jogged through downtown Portland on dark winter mornings. And for those special dinners, there was light jazz to show my sophistication.
This was music I knew and loved, but it was not something I could listen to all day while lying ill in a recliner. It was not soothing for a brain riddled with lesions, a mind overwhelmed by stimuli, a body that needed to rest and heal.
One day my best friend and running partner Eric showed up with some Mozart. He’d also brought Schumann, Schubert, Beethoven, and Bach. “Nothing heavy,” he said. “No symphonies or anything complicated.”
I didn’t know what he was talking about. I thought classical music was, by definition, complicated and heavy and only to be discussed in hushed tones and pompous accents. It was written by people without first names, most of whom were cranky and tubercular and had wild hair. Although I considered myself well educated, somehow classical music had remained outside my experience.
Eric sat with me and listened to the music — solo piano, piano with violin, one or two chamber pieces. He pointed out a few things, but mostly he just sat there with his eyes closed. A few days later he brought over something he said was a little more complex. When I heard the first melancholy notes of the cello in Schumann’s A Minor Concerto, my world changed. I knew the music of illness when I heard it.
For the next two years, I probably averaged four hours a day supine and surrounded by classical music. Sometimes the music took me to the dark center of what I was experiencing, to my conflicting emotions about all that had changed in my life. But sometimes it took me outside myself altogether, into a realm of pure sound where there could be peace. Once, Eric called to say he would take me to buy a book on music appreciation. By the time he arrived at my door half an hour later, I had not only forgotten he was coming, I did not even recognize him at first. He nodded and we sat down to listen to Chopin (who was a lot sicker than I for much of his life) before heading to the store.
It’s not that I wouldn’t have survived without music. But without what music taught me I might not have been able to grasp that the score my body had followed for so long had been totally rewritten. I wouldn’t have understood that my body’s symphony now included a long movement of pure chaos: somber and discordant in itself, but leading somewhere worth going if I learned to listen.
Here was a deep, intuitive way to understand what Chronic Fatigue Syndrome was doing to my body, throwing its intricately balanced, complex systems into disarray so that nothing works as expected anymore, resulting in a cacophony of symptoms. A viral infection I had in December of 1988 started it all. The infection, which probably targeted my brain, triggered an immune-system reaction that my brain has never been able to turn off. Since then, my immune system has remained stuck in overdrive, endlessly trying to combat a virus that may no longer even be there. Meanwhile, other viruses dormant in my body for years have reactivated and my system teems with them. My balance, memory, abstract reasoning, concentration, coordination, and stamina are all damaged. I must look away from people periodically when I talk to them because their physical responses make me forget what I’m saying. I put newspapers in the refrigerator instead of the recycling sack, and I walk into walls I see clearly. In conversation and when I write, I often cannot think of words that are in my vocabulary. Consequently I either pause interminably to search for a word or else I utter such mystical pronouncements as “the charms are burning” when I mean “the leaves are turning.”
This is not the way I used to be. But music has taught me that I may still contain harmony, if only I can hear the whole thing through.
Then there’s time. In my illness, I have come to see that the way to take control of time is to let it go.
Time changes when a person is chronically ill. Alone for long periods when I first got sick, I experienced the timelessness of solitude. Though Donne says in his fifth devotion that “as sickness is the greatest misery, so the greatest misery of sickness is solitude,” I did not find this to be true for me. Solitude was a kind of chamber in which my separation from the world of measured time made sense. Because I was removed from the familiar rhythms of a traditional day — the meetings, lunches, schedules, and deadlines — I soon discovered that the week’s shape was lost. Days dragged. It was impossible to believe how long they lasted. But then all of a sudden it was autumn. Where had the time gone?
Unless people were coming over to visit or I had a doctor’s appointment, it hardly mattered what time it was. Soon I learned to eat when I was hungry and sleep when I was tired. I found I didn’t have to eat three meals a day or only at fixed times; I could graze all day long if I wanted or eat twice a day, have waffles in the evening or a chicken potpie in the morning. I began to approach sleep the same way, napping a couple of hours in the morning and again in the afternoon.
And ultimately I weaned myself from the constant measuring of slow change that accompanies chronic illness. I gave up graphing my body temperature three times a day (mine was subnormal) and compiling data on the number of hours I slept. I stopped weighing myself every morning. Oddly enough, relinquishing these measurements gave me a sense of greater control. “What poor elements are our happinesses made of,” Donne wrote in his fourteenth devotion, “if time, time which we can scarce consider to be any thing, be an essential part of our happiness!”
None of these revelations about time, my body, and my appetites should have surprised me, but they did. Before getting sick, I would have said that as a serious competitive runner I was a person who knew my body and its needs. That was precisely why I ran: to help body and soul deal with working full time and parenting my children and cooking for my family and writing for a couple of hours every night. For me, time was a matter of being where I had to be when I had to be there, a matter of pace and records to beat. Before a race, we runners would babble incessantly about the condition of every tendon, every muscle. Good runners listened to their bodies. Baloney. After getting sick, I saw that I might have listened to my body before but did not really hear it. If I had, I might have understood its message before it was too late.
So time, and the way my body functions in time, was something I did not comprehend until I got sick, when I discovered that it is a truly inner phenomenon. I realized that despite all the clocks and agendas and appointments, regardless of the records and goals, time is always in fact a measure of how I experience my self moving through my life. I began to look at my illness in a new way: it had not taken time away from me but had given it back.
Finally, there is love. Passionate, intense love — the kind of connection that seems impossible to someone who is seriously and chronically ill. The kind that comes from a place so deep inside that surely illness must close it off.
Sick people often feel that such love is simply no longer possible for them. If they have a partner when they become ill, romantic love seems difficult to sustain. If they are single, finding it is beyond imagining. At best they might hope for something else: a supportive, nurturing love, familiar and comfortable, that becomes a place to rest, to convalesce, to take care.
Being sick, feeling weakened and removed from the possibility of love’s embrace, I was simply astonished when passion found its way to the dry places inside me and anointed them. Suddenly I knew myself touched where I had given up hope of ever being touched again. Then astonishment gave way to the understanding that I must act on what I felt, that I not only could but must respond to these erotic feelings. Not that this made me suddenly able to run a marathon again, or spell and do math reliably, or walk without a cane, or get through a day without a nap. I still could not function as though my central nervous system and immune system were normal. But I found that eros is a remarkably restorative force, life-affirming and optimistic.
For all it takes away, chronic illness also brings opportunity. The great challenge it presents is to cope, but coping may not mean what we initially think. The word cope comes from the Latin for strike or blow and implies activity, not passivity, engagement rather than withdrawal. We cope by fighting back at the diseases that challenge us. In his great seventeenth devotion, Donne says, “No man hath affliction enough that is not matured and ripened by it.”
I was living in Portland when I got sick. Today I live in a round house in the middle of twenty hilly acres above a small town called Amity. How appropriate that the word amity means peaceful relations, since this is the place where I have found peace. From the room where I write (for the one or two hours a day that I feel well enough to write), I see the pond that Beverly dug amid Douglas firs, maples, wild cherries, and scrub oaks. The pond’s edge is ringed with brush to keep away deer, who otherwise would eat all our water lilies and hyacinths — fifty-dollar snacks. One of the cats — plump, queenly Zola, who looks far too equable to be the fierce hunter — has just sashayed past the window, a mouse dangling from her mouth. Two Adirondack chairs tilt rakishly back toward a sun that has not yet burned through the winter fog. Beverly bought them and painted them magenta eighteen months ago, on that first weekend she brought me out here from Portland.
I’m not saying that listening to music, modifying eating and sleeping habits, loving passionately, and moving to the country will give anyone else control of a life taken over by illness and pain. For each person surely the details will vary, the untouched places will be different. But finding those places within that illness cannot reach, and learning to honor them, can help transform the bed of thorns.
We’ve published two other essays by Floyd Skloot, who suffers from Chronic Fatigue Syndrome (CFS). In “An Unbelievable Illness” [September 1992], he wryly describes his symptoms and misadventures in getting a diagnosis for his then-unknown sickness. “Double Blind: When Healing Is a Gamble” [November 1993] is an account of his participation in the clinical trial of a new drug to treat CFS.
— Pamela Tarr Penick