Thorns into feathers: coping with chronic illness.

As thou hast made these feathers thorns, in the sharpness of this sickness, so, Lord, make these throns feathers again.

John Donne, Devotions III

In the winter of 1623, the great English poet and preacher 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. Donne, at age fifty-two, suddenly found himself feverish, tormented by headaches, covered with spots. He took to his bed, where he felt "my slack sinews are iron fetters, and those thin sheets iron doors upon me." Not only were those sheets transformed into iron doors, but the feathers of his bed had become thorns. The situation was alarming enough that King James's own physician was dispatched to Donne's bedside.

The course of Donne's illness was summarized in 1640 by his biographer, Sir Izaak Walton: "God preserved his spirit, and kept his intellectuals as clear and perfect as when that sickness first seized his body; but it continued long, and threatened him with death, which he dreaded not." One enduring outcome of Donne's typhus episode was the writing of a brilliant book, Devotions upon Emergent Occasions, a seventeenth-century best seller in which he mused passionately on the condition of his stricken body and soul. In what is perhaps the mother of all blurbs, Izaak Walton said the Devotions was "a book that may not unfitly be called a Sacred Picture of Spiritual Ecstasies."

Thinking about coping with my own long-term illness, I find myself drawn in particular to Donne's third devotion. Lying in his feather bed, which fever and pain transform into a bed of thorns, he asks God to reverse the alchemy and turn his bed back to feathers. In my own illness, I am sorry to say, God has not seen fit to keep my intellectuals as clear and perfect as when sickness first seized me--my brain has been scarred by lesions and I have lost approximately thirty IQ points. But, while I have not turned the thorns of my illness to feathers, I have nonetheless found ways to soften their spikes.

If you knew me five years ago, before I got sick, you would not know me now. Some of it is style, of course, or style reflecting substance. Cannot run anymore, so I have hand-carved hazelwood and cocobolo canes in place of running gear. Cannot work, so there is a wardrobe of baggy sweats or wildly patterned, floppy pants instead of the trim three-piece suits and shirts with snug collars. Look down and there are clogs instead of wing-tips, since for years it was a challenge just to tie my shoelaces. I wear a small hematite ball in my left earlobe now and use fingers instead of a brush to manage my hair, which--like my beard--is shot with gray. Though it is no heavier, the lean and hard body that I worked so diligently to sculpt is much softer now. As my wife Beverly says, it seems like my armor is gone.

But it is more than style. A lifelong city boy, I now live in the country and love it, despite the spiders and carpenter ants, despite skunks and the occasional porcupine, despite poison oak or a well that threatens to go dry and its iron-rich water that stains me amber. And I am slow now. I used to move through my world like a halfback, zigging and zagging, always trying for that extra yard, very difficult to bring down. Now I conserve, I loiter, I move as in a dream; because if I don't, I will either fall or smack into something. But of this necessity has come a whole new way of being in my life. This goes for talking too, which I do at a more leisurely pace, interspersed now with actual listening. Something different and vital has emerged. My secret is that I have found the places within me that illness could not touch. I have learned to honor them.

Take music. Before I got sick, music to me was late fifties and early sixties rock 'n' roll. Give me doowop and Top 40 AM, Elvis and the Everly Brothers and Fats Domino. Music was for singing along with the phonograph, or with headphones when I jogged through downtown Portland. As background to dinner, or when company arrived, there was light jazz to show my extreme sophistication.

Obviously, this music was not for listening to all day while lying in bed or on a recliner month after month. This was not the proper stuff for a brain riddled with anatomic holes, for a mind so easily confused by stimuli that I could not sit in a restaurant unless I faced the wall, for a body that needed to rest and heal. In my illness, I did not need the Wall of Sound.

One day my best friend and running partner, Eric Hosticka, showed up with some Mozart. He brought Schumann and Schubert, a Beethoven piano sonata, Bach. Who?

"Nothing heavy," he said. "No symphonies or anything complicated."

I did not know what he was talking about. Classical music was by definition complicated and heavy, I thought, which was why it was 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. Not that I was a philistine; after all, I had read all of Thomas Hardy, even The Hand of Ethelberta. But classical music had remained outside my experience.

Eric sat with me and we listened to the music, mostly solo piano, or piano with violin, and one or two chamber pieces. As he said, nothing complicated. He pointed out a few things, but mostly just sat there across the room from me with his eyes closed and listened. A few days later, he brought something he said was a little more complex; if I did not like it, I could just go back to flute and harp. When I heard the first melancholy notes of the cello in Schumann's A-minor Concerto, my world changed. I did not know much about classical music, but I knew the music of illness when I heard it.

I averaged four-hours-a-day supine and surrounded by classical music during the first two years of my illness. It was not all sweetness and light: sometimes music took me to the very center of my experience, to the conflicts I was feeling about all that had changed in my life, to the vortex of emotions. 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. He nodded and we sat down to listen to Chopin, who was a lot sicker than me for much of his life, before we headed to the store.

Without music, I would still have survived. But music helped me understand that my body's score had been completely revised. The symphony now included an extended movement of deep discord, a dark and confusing interlude that would, however, end up in a place worth knowing, provided that I listened well.

This was a deep, intuitive way to understand what my illness--Chronic Fatigue Syndrome--does to the body, throwing its intricately balanced, complex systems into disarray so that nothing works as expected any more, a cacophony of symptoms. Calling it Chronic Fatigue Syndrome is like calling Beethoven's Ninth Symphony a little music recital. It is like calling polio Chronic Stiffness Syndrome. A viral infection I had in December 1988 started it all. The infection, which probably targeted my brain, triggered an immune system cascade that my brain has never been able to turn off. Blood flow to the brain stem is reduced. Balance, memory, abstract reasoning, concentration, coordination, and stamina are damaged. I look away from people when I talk to them because their physical responses make me forget what I am saying. I often cannot find words that are in my vocabulary, so there are either long pauses while I search for them or I become a chorus of malapropisms, given to such pronouncements as "the charms are burning" instead of "the leaves are turning," or to saying over the dinner table, for reasons I still cannot figure out, "cross the bristle."

This is not the way I used to be. But music has taught me my being could still contain harmony, if I could only hear the whole thing through.

Or take time. I have come to see that it is entirely possible to do just that, to take time, to seize control of it rather than be controlled by it. Paradoxically, the way to take control of time is to let it go altogether.

Time changes when a person is chronically ill. Often alone, I experienced the timelessness of solitude, the way everything slows down long enough to speed up while a person is immersed in illness. Though John 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 became a kind of chamber in which my separation from time and the world of measured change made sense. Because I was removed from the world of work--meetings, lunches, schedules, deadlines--and outside the rhythm of a traditional day--I found that a week's very shape was lost. Days dragged by. 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 that I did not have to eat three meals a day, or eat at fixed times; I could graze all day long if I wanted to. I found myself approaching sleep the same way. I napped a couple of hours in the morning and again in the afternoon because that was when I was too tired to be awake.

Finally, I weaned myself from the constant measuring of slow change that accompanies chronic illness. I gave up the thricedaily graphing of body temperature (mine was sub-normal) and the compilation of sleep totals. I stopped weighing myself every morning. Oddly enough, all these changes did was provide a sense of greater control. "What poor elements are our happinesses made of," Donne writes in his fourteenth devotion, "if time, time which we can scarce consider to be any thing, be an essential part of our happiness!" The man certainly had a point.

None of this should have been surprising to me. Before getting sick, I would have said that as a competitive runner I knew my body and its needs. That was why I was running, to help body and soul deal with working full-time, being a parent to my children and the family's chief cook, and writing for a couple of hours every night. Time was a matter of being where I had to be when I had to be there; it was a matter of pace and records to beat. Good runners, the books and magazines said, listened to their bodies; I was one of those listeners.

Baloney. After getting sick, I saw that I might have listened to my body before, but did not really hear it.

So time, and the way my body functioned in time, turned out to be something I did not understand until getting sick. Time turns out to be a truly inner phenomenon. Despite clocks, agendas, and appointments, regardless of records, goals, and setting aside calendars, time measured how I experienced my self moving through my life. My illness had not stolen time from me after all; it had instead placed time in my own hands.

Then there is love. I am talking about passionate, intense love, the kind of connection that seems impossible when someone is seriously and chronically ill. The kind that comes from so deep inside, the place seems to have been closed off by illness. Or worse, poisoned by it.

People who are sick frequently despair of loving like this. It seems so difficult to sustain if they are married and ill; finding it is beyond imagining if they are single and ill. If fortunate, they might have something else in their lives, a supportive, nurturing love, familiar and comfortable, that becomes romance's version of the sick-bed: a place to rest, to convalesce, to take care.

Ill and weakened, I was no longer the person who knew himself capable of passion's true eloquence. I felt as removed from it as from the rest of my old life's defining activities. It was astounding to feel passion touch the arid places within me and saturate them, reaching me where I had given up hope of ever being reached again. Then astonishment was replaced by the understanding that I must act on what I felt, that I could and must respond to the erotic feelings I was capable of having. Not that I could suddenly run a marathon again, or spell and do math reliably; not that I could remember birthdates, or walk without a cane, or get through a day without at least one long nap. Of course I could not miraculously function as though my central nervous system and immune system were normal again. But I found that Eros can be a healing power, assertive of life's wonder and surviving force.

So is touch. For years before we married, Beverly was my massage therapist, bringing me the healing power of touch. We were never intimate in the sense of being lovers then; Beverly would never compromise her professional ethics. But we became close friends through those years--me lying there with my eyes closed, the sheets smelling of sweet almond oil, Beverly moving around me for an hour with her powerful hands, her resonant voice becoming familiar as a recurring dream while we spoke softly to one another about our lives. In my illness there have been times when my joints and bones were so tender that her touch nearly jolted me from the table, but we found a way to manage that pain and bring ease to my body. I think we built a connection based on shared openness, on the sonorousness of intimate conversation.

"The disease hath established a kingdom," Donne writes in his tenth devotion, "an empire in me." It often seems to those who live there that passion has been banished from the land. Curiously, I found it locked in the Emperor's own dungeon and together with Beverly set it free.

For all they take away, chronic pain and illness also bring opportunity. The great challenge is to cope, but coping may not mean what people initially think it means.

The word "cope" comes from the Latin for "strike" or "blow." It implies activity, not passivity, engagement rather than withdrawal. I think it is among our signal responsibilities to accept the opportunities illness brings us and do something with them. That is how we cope, fighting back at the diseases which challenge us.

In his seventeenth devotion, Donne says "affliction is a treasure, and scarce any man hath enough of it." I cannot say that I agree with him there, but I am with him when he goes on to say "No man hath affliction enough that is not matured and ripened by it."

Now I live in a round house Beverly built in the middle of twenty hilly acres above a small town called Amity in the Willamette Valley. How appropriate that the word amity means "peaceful relations," since this is the place where I have found the peace that is part of converting the thorns of illness into feathers. From the room where I write for the one or two hours a day that I can write, I see the pond that Beverly dug amidst Douglas fir, maple, wild cherry, and scrub oak. 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 scream "Spring will come! Spring will come!" while rakishly tilting back toward a winter sun that has not yet burned through the fog. Beverly bought and painted them magenta over two years ago, on that first weekend she brought me out here from Portland.

I am not saying that listening to music, modifying eating and sleeping habits, loving, and moving to the country will give 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 the places within that illness cannot reach, and learning to honor them, can help transform the bed of thorns thatis illness.