Thorns into feathers

...Paradoxically, the way to take control of time is to let it go altogether...

...But I found that Eros can be a healing power, assertive of life's wonder and surviving force...

...Two Adirondack chairs scream "Spring will come...

...The situation was alarming enough that King James's own physician was dispatched to Donne's bedside...

...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...

...Music was for singing along with the phonograph, or with headphones when I jogged through downtown Portland...

...His recent work has appeared in the American Scholar, Harvard Review, and The Best American Essays of 1993...

...This is not the way I used to be...

...Or take time...

...It implies activity, not passivity, engagement rather than withdrawal...

...Not that I could suddenly run a marathon again, or spell and do math reliably...

...Solitude became a kind of chamber in which my separation from time and the world of measured change made sense...

...Time turns out to be a truly inner phenomenon...

...but it continued long, and threatened him with death, which he dreaded not...

...It is like calling polio Chronic Stiffness Syndrome...

...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...

...he wrote...

...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...

...Then there is love...

...So is touch...

...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...

...Donne, at age fifty-two, suddenly found himself feverish, tormented by headaches, covered with spots...

...while rakishly tilting back toward a winter sun that has not yet burned through the fog...

...John Donne, Devotions HI In the winter of 1623, the great English poet and preacher John Donne was stricken with epidemic typhus...

...Time was a matter of being where I had to be when I had to be there...

...And I am slow now...

...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...

...As background to dinner, or when company arrived, there was light jazz to show my extreme sophistication...

...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...

...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...

...In my illness, I did not need the Wall of Sound...

...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...

...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...

...I am talking about passionate, intense love, the kind of connection that seems impossible when someone is seriously and chronically ill...

...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...

...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...

...Typhus, a louse-borne bacterial disease, killed hundreds of thousands throughout Jacobean England...

...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...

...The great challenge is to cope, but coping may not mean what people initially think it means...

...Of course I could not miraculously function as though my central nervous system and immune system were normal again...

...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...

...The infection, which probably targeted my brain, triggered an immune system cascade that my brain has never been able to turn off...

...it was a matter of pace and records to beat...

...None of this should have been surprising to me...

...I found myself approaching sleep the same way...

...Nothing heavy," he said...

...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...

...In his seventeenth devotion, Donne says "affliction is a treasure, and scarce any man hath enough of it...

...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...

...Not that I was a philis-tine...

...A viral infection I had in December 1988 started it all...

...But music has taught me my being could still contain harmony, if I could only hear the whole thing through...

...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...

...I found that I did not have to eat three meals a day, or eat at fixed times...

...But music helped me understand that my body's score had been completely revised...

...Some of it is style, of course, or style reflecting substance...

...Classical music was by definition complicated and heavy, I thought, which was why it was discussed in hushed tones and pompous accents...

...I used to move through my world like a halfback, zigging and zagging, always trying for that extra yard, very difficult to bring down...

...I have learned to honor them...

...We were never intimate in the sense of being lovers then...

...Once, Eric called to say he would take me to buy a book on music appreciation...

...Finally, I weaned myself from the constant measuring of slow change that accompanies chronic illness...

...It often seems to those who live there that passion has been banished from the land...

...The word "cope" comes from the Latin for "strike" or "blow...

...Not only were those sheets transformed into iron doors, but the feathers of his bed had become thorns...

...Good runners, the books and magazines said, listened to their bodies...

...But, while I have not turned the thorns of my illness to feathers, I have nonetheless found ways to soften their spikes...

...Cannot run anymore, so I have hand-carved hazelwood and cocobolo canes in place of running gear...

...Take music...

...I did not know what he was talking about...

...Curiously, I found it locked in the Emperor's own dungeon and together with Beverly set it free...

...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...

...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...

...My secret is that I have found the places within me that illness could not touch...

...Now I conserve, I loiter, I move as in a dream...

...He took to his bed, where he felt "my slack sinews are iron fetters, and those thin sheets iron doors upon me...

...Though it is no heavier, the lean and hard body that I worked so diligently to sculpt is much softer now...

...finding it is beyond imagining if they are single and ill...

...Calling it Chronic Fatigue Syndrome is like calling Beethoven's Ninth Symphony a little music recital...

...He brought Schumann and Schubert, a Beethoven piano sonata, Bach...

...But of this necessity has come a whole new way of being in my life...

...I was one of those listeners...

...As he said, nothing complicated...

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

...For each person, surely, the details will vary, the untouched places will be different...

...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...

...As my wife Beverly says, it seems like my armor is gone...

...Despite clocks, agendas, and appointments, regardless of records, goals, and setting aside calendars, time measured how I experienced my self moving through my life...

...For all they take away, chronic pain and illness also bring opportunity...

...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...

...My illness had not stolen time from me after all...

...Obviously, this music was not for listening to all day while lying in bed or on a recliner month after month...

...Eric sat with me and we listened to the music, mostly solo piano, or piano with violin, and one or two chamber pieces...

...Look down and there are clogs instead of wing-tips, since for years it was a challenge just to tie my shoelaces...

...I felt as removed from it as from the rest of my old life's defining activities...

...if I did not like it, I could just go back to flute and harp...

...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...

...But it is more than style...

...Blood flow to the brain stem is reduced...

...No symphonies or anything complicated...

...I think it is among our signal responsibilities to accept the opportunities illness brings us and do something with them...

...But sometimes it took me outside myself altogether, into a realm of pure sound where there could be peace...

...The man certainly had a point...

...He pointed out a few things, but mostly just sat there across the room from me with his eyes closed and listened...

...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...

...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 have lost approximately thirty IQ points...

...Thinking about coping with my own long-term illness, I find myself drawn in particular to Donne's third devotion...

...The disease hath established a kingdom," Donne writes in his tenth devotion, "an empire in me...

...It was written by people without first names, most of whom were cranky and tubercular and had wild hair...

...Soon I learned to eat when I was hungry and sleep when I was tired...

...Without music, I would still have survived...

...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 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...

...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...

...For years before we married, Beverly was my massage therapist, bringing me the healing power of touch...

...Beverly would never compromise her professional ethics...

...So time, and the way my body functioned in time, turned out to be something I did not understand until getting sick...

...after all, I had read all of Thomas Hardy, even The Hand of Ethelberta...

...This minute I was well, and am ill, this minute...

...it had instead placed time in my own hands...

...Variable, and therefore miserable condition of man...

...Give me doo-wop and Top 40 AM, Elvis and the Everly Brothers and Fats Domino...

...Before getting sick, I would have said that as a competitive runner I knew my body and its needs...

...Unless people were coming over to visit or I had a doctor's appointment, it hardly mattered what time it was...

...A few days later, he brought something he said was a little more complex...

...Or worse, poisoned by it...

...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...

...But classical music had remained outside my experience...

...I did not know much about classical music, but I knew the music of illness when I heard it...

...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 FLOYD SKLOOT, an author and poet, lives in Amity, Oregon...

...Something different and vital has emerged...

...It seems so difficult to sustain if they are married and ill...

...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...

...That is how we cope, fighting back at the diseases which challenge us...

...One day my best friend and running partner, Eric Hosticka, showed up with some Mozart...

...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...

...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...

...If you knew me five years ago, before I got sick, you would not know me now...

...The kind that comes from so deep inside, the place seems to have been closed off by 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...

...Time changes when a person is chronically ill...

...This goes for talking too, which I do at a more leisurely pace, interspersed now with actual listening...

...I stopped weighing myself every morning...

...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...

...Beverly bought and painted them magenta over two years ago, on that first weekend she brought me out here from Portland...

...I averaged four-hours-a-day supine and surrounded by classical music during the first two years of my illness...

...I could graze all day long if I wanted to...

...When I heard the first melancholy notes of the cello in Schumann's A-minor Concerto, my world changed...

...I think we built a connection based on shared openness, on the sonorousness of intimate conversation...

...Before I got sick, music to me was late fifties and early sixties rock 'n' roll...

...Spring will come...

...Days dragged by...

...I look away from people when I talk to them because their physical responses make me forget what I am saying...

...not that I could remember birthdates, or walk without a cane, or get through a day without at least one long nap...

...because if I don't, I will either fall or smack into something...

...Ill and weakened, I was no longer the person who knew himself capable of passion's true eloquence...

...Baloney...

...But finding the places within that illness cannot reach, and learning to honor them, can help transform the bed of thorns that is illness.nsform the bed of thorns that is illness...

...I gave up the thricedaily graphing of body temperature (mine was sub-normal) and the compilation of sleep totals...

...People who are sick frequently despair of loving like this...

...Balance, memory, abstract reasoning, concentration, coordination, and stamina are damaged...

...Oddly enough, all these changes did was provide a sense of greater control...