It wouldn’t be hard to write my way into myself, back to some uncompromised heart, that despite its years being held hostage to various detours, has evolved and matured and could possibly have some beautiful things to say. If our emotions form an intricate labyrinth between our hearts and our actions, and intentions are like so many false starts ending in cul-de-sacs, then the voice might be the thread that leads us home, should we ever be able to find it again and pick it up. Sometimes the arrival is uneasy; we don’t recognize where we are, that we are where we should be. I never thought I’d find myself standing at 13,000 feet, in tundra grass and flowers on the shore of a crystal lake, with nothing but fields of scree, deep, ice filled crevices and falling stones between me and the meaning of my life.
Many years ago I was told that I would never walk again. I have never known what to make of my body. Quite separate from my mind and from my voice, it has always seemed like this very plastic thing that I could stretch and mold and pound into something pleasing and acceptable in society. As a child, I was small and spindly and frightened of everything, except the earth beneath me. I loved to run on this earth, being a horse or a deer as I ran, and I remember playing and rolling on the ground until dusk and exhaustion closed in. I was easily bullied, and I avoided the company of other children, except when gently coerced by my mother to play with the neighbors. One day, a big neighbor boy made me play near the hedge by the highway, where I crouched like a rabbit and trembled when the cars roared by, and walked my little toy Bambi figure back and forth among the slender trunks of the bushes. The boy took my Bambi away from me and, to my amazement, like a magician, put it inside of a brick, and I could only see parts of its pink, plastic forlegs sticking out. I was outraged to some kind of marvelous courage, and I pummeled this big boy with my fists and my cries until he released my Bambi, and I went home and never played there again. At times like this I had no body; but something obviously carried my widened, furious eyes around, and anger spat out of me like the flame of booster rockets.
In such a manner, in patterns of play, earthlove, and outrage, I reached puberty and was pulled into my body, horrified by widening hips and emerging breasts, and bleeding. Running turned into gymnastics, dance, and finally, running away from home. My parents trumped me in this by sending me off to Italy to live with Italians and finish high school. Body was an easy thing in Italy; Italians feed it, rest it, exercise it, honor it, admire it in all of its myriad expressions. Away from the relentless tyranny of American advertising — be skinny, be sexual, be a face, be beautiful hair, be the latest clothes, be a success — body and soul hostage to the image of Madison Avenue — I relaxed, gained weight, hiked and skied, read philosophy, danced on high mountain roads under stars with schoolmates, learned Italian and history and literature. Coming home to America, to college, was the undoing of my new body-mind, and I returned to my disembodied state, my newly deepened mind floating over this estranged and separate thing. I became thin again, and mysterious, alienated from my American classmates like a romantic intellectual, involved with my professors, with older men and women. I put my body through all kinds of abuses — starvation, drugs, hitchhiking, bad encounters. By the time I was 21 I felt like a refugee, battle-scarred and lucky to be alive.
When I married and became a graduate student, this was my commitment to stay alive, to ground my being and body once and for all into this life. I felt secure in intellectual surroundings, superior in our chic and intelligent poverty. I admired myself, thin and mysterious, my husband, tall and mysterious, and our life as part of the mystique of the intelligentsia. When I became pregnant, it was astonishing, and to the shock of my friends in academe, I dropped out to be a housewife and mother. I reveled in babies. I only had two, but I could have had twenty, like Tolstoy’s wife, or like his characters, Natasha, and Kitty — baby after baby, year after year, belly after belly, mouth after mouth. A field of children, like some great earth mother. I became everything that I had planned — raising my children, finishing a Ph.D., writing manuscripts of serious, intellectual works, and of poetry.
Divorce came, and suddenly, on its heels, came a meteor of disease, whizzing out of the sky of my ambition to leave a hole in the earth of my body. And for years I was sick with multiple sclerosis, bound to a wheelchair, legs withered, limp and unresponsive, the rest of me pulled into the abyss after them.
What a betrayal it is when the body goes crippled, not by accident, but by design, somehow programmed into one’s very own nature. An immune system that attacks itself, that interprets the body that it is part of, that it is supposed to protect, as ‘enemy,’ sprays cluster bombs throughout the nervous system, targeting the myelin sheaths in a search and destroy mission with nothing to deter it; the conflagration is absolute. I awoke one Saturday morning feeling as if I had been buried under piles of rubble. I had to claw and fight my way up and out, and when I emerged, I found I could barely walk. I lurched to the kitchen, thinking how badly I must need a cup of coffee. Then I made my way to the phone, legs collapsing like bad springs with every step.
I lay in a hospital bed for two weeks, hooked up to intravenous steroids. At intervals a nurse would gather me and pile me into a wheelchair, to steer me off to physical therapy, or to occupational therapy, where they taught me how to make a bed from a wheelchair, as if suddenly that were the pinnacle of my life’s ambition. The diagnosis of multiple sclerosis felt like banishment to another planet, with no time to say goodbye, or to pack. Darkness closed around; my young children — six and nine — were whisked off to their grandparents, five hours away by car. People in white said, “Get used to life in a wheelchair. Don’t get your hopes up. You will most likely never walk again. Learn to adapt. There is no cure.” I wanted to die. A being in white, radiant and shaped like an arrow, came to me and lay down inside me, and said, “it is not your time to die. You must go on living.” Visiting friends commented that I looked poured into the bed, and I lay there in a pool, like something dissolved into a vast solution of particles hanging everywhere, that just a little while ago, solid and formed, had been my life.
From the time I was six years old, it has been my ambition to be a writer. I can remember the intensity at six years, learning to write, to string words together, to make pretty sounds and intense meaning — meaning that set all things right and seared the world with truth and love. But always I have found ways to thwart my true desires, to muffle my own voice, to amputate my dreams. The gods have thrown so many gifts at me — a father who framed my poems and watercolors and hung them on the wall; prizes for poetry in college; a Watson Fellowship after college for poetry and mime; places to read my poetry throughout college and grad school, packed with appreciative audiences; more prizes for writing. Somehow I managed to pour sand down my own throat, and not just once, but over and over again, dousing the flame of the six-year-old.
When my body went crippled, it felt like a terrible punishment; society affirms the feeling of punishment because after a while your friends, who knew an energetic, spirited woman, abandon the little frightened heap in the wheelchair, and others shun you, look at you with curiosity and turn away, just as I had once done every time I saw someone in a wheelchair. “Rejects from the factory of God” I called us, the sub-group of the handicapped. What a surprising number of us there are, lurking around just under the surface of so-called normal life. I was shocked and stunned and angry and embarrassed and chagrined to find myself in a wheelchair at the age of thirty-six, still so young and “so pretty you could find another husband,” said the surprised driver of the Metro-Mobility bus that picked me up to transport me around the city. I remember feeling that if I had to be in a wheelchair, I was going to dress well and emit sparks, surprising the drivers, who expected something else.
But I fell silent. Where I had been outspoken and active before, now I remained inactive and mute. Crippled people are far less assertive than able-bodied people, fearing, I suppose, to draw even more attention to themselves than the wheelchair already draws. Crippled people are not even assertive with themselves; they may be whining and demanding — who wouldn’t be? A wheelchair is a very scary place. But where it counts, in uttering truths to themselves and to the world, they are quiet people. And sometimes we look up with anger at the people who stare, but most often we look up with shame. For to be crippled in our society is sinister; it is an ill-starred thing, a bad sign. If, as I have heard, Aristotle really did say, “Luck is when the guy next to you gets hit with the arrow,” then we are the unlucky; and under fire, most people run away and take cover. When I was able-bodied, running around like a madwoman, half-crazed with too much mobility, I glanced at those in wheelchairs and looked away again quickly, unless there was some remarkable irregularity in legs or body, and then I looked a little longer. But I never approached and smiled and said hello, how are you. I remember now that, in a most extraordinary way, I would get a sickening ping in the pit of my stomach when I beheld a wheelchair, as if my body had known far in advance what was coming.
In the early days, after being unable to will myself to die in the hospital, I studied my symptoms closely, noticing everything in terms of deficit and disability, and kept a running log of bowel dysfunction, arm weakness, leg pain, insomnia. I had a terrible constant patch of nerve pain in my left side, which I called my “wolf bite,” which stayed with me for years. My legs felt as if they were plugged into electrical sockets, with waves of tingly-numbness running up and down. I couldn’t move them, couldn’t even wiggle my toes. In this time, people would pick me up to take me grocery shopping or Christmas shopping or something-shopping. Shopping seems to be a safe thing to do with a freak, or so I felt. My ex-husband would come by to walk me around my neighborhood in the chair, which, being so self-conscious and so mortified over my affliction, I hated. He said it was good for me. But mostly I lay on the sofa in the living room and stared out the glass doors of the balcony at the big maple tree just outside, and at the sky beyond. Occasionally joggers would run by, and I would rouse myself to yell at them — who did they think they were with their big fat muscular legs, smarty-pants show-offs of their energy and stamina, ugly-butt health and well being. I invested a great deal of scarce energy in this kind of behavior, much to the dismay of my children when they happened to see. I would look at my own legs and curse them. Fewer friends came by, less and less often, finally ceasing altogether, all except two. My personality had changed, my body had changed, my life had changed. I wasn’t recovering, as one is supposed to do in our society. To fall sick with a terrible illness and not get better, especially when you are still young, is a social faux pas. It’s like being delinquent, a malingerer. To the bitter end. And gradually, people dissociate. To call it abandonment is too harsh a truth. One has fallen out of the race, and must, perforce, be left behind. I would do the same. Especially if the bright, assertive leader I had known had transformed into stricken, frightened silly putty. Whenever I heard about another suicide, assisted by Dr. Kervorkian, I applauded the released soul with all my heart and blessed the physician-midwife. I yearned for the same, to bring an end to my pain and torment, to be reborn in some other sphere. In the meantime, I dragged my shriveled legs around the house, threw them into the wheelchair now and then to go out, bombarded them with hate, and scowled at the world.
Whatever happened that I recovered so well, to the point where I found myself standing at 13,000 feet at the lip of a glassy, fishless lake, where land ends sharply, thrust up into the sky in sharp, jagged, immobilized gestures, where sky bends gently to receive everything? Perhaps it was sky himself who called me, through all those limitless days that I lay staring up through the changing seasons. After many months had leaked away, cloud after cloud, snow after rain after sun, day after day after day, suddenly, all in an instant, I realized that by cursing and hating my legs and my body continuously I was not helping them at all, I was annihilating myself. As I lay on the sofa and studied the leaves of the maple tree, I began to see when photosynthesis stopped as the temperature dropped, how the green ceased to pulse, and the leaf darkened. Browns, oranges, reds began to take the rim and spines. Death creeps into our bodies, had crept into my legs, was cradling my heart. As season after season passed, I had dug myself in and held myself hostage to my own despair and self-loathing.
We say about disease “she was stricken suddenly,” and it does seem often that this is indeed the case. We don’t say “the soil was prepared in her for the growth of germ or disorder;” or that “she found refuge from the overpowering complexities of her life in illness.” What if the doctor had said, “Well, this is a serious case, but with much rest, proper diet and exercise and ease of mind, it will clear up. It may take a few years, but you’ll be all right.” What if he had used these words, and not “incurable,” “unpredictable,” “don’t get your hopes up”? Imagine being optimistic from the start, rather than pessimistic, depressed, and bewildered — so much valuable healing time lost! So much real convalescence as good as forbidden.
Luciano Pavarotti was coming to town. Ticket prices ranged from $150 to $35. I studied the ad in the newspaper, knowing that I wanted intensely to be in the front row, thinking I could afford $35, which would have me so far back that Pavarotti would be a little dot in the distance, and I would be in my wheelchair on the fringe, as usual. So I held back, wanting, and stymied. You can tell, if you are paying attention, when you are denying a desire which is vital, which is entirely possible if only you rearrange your thinking a bit: you get a feeling in your gut which harkens perhaps all the way back to childhood, when certain disappointments were great enough to put out the first row of lights, never to be lit again. How much do we extinguish in this life by continuing to mute what we most want?
I created a slight stir among the Minneapolis wealthy in the front rows when the usher wheeled me to my place. No one knew who I was, a stranger in a wheelchair with a $150 ticket, whom they had never seen before, would never see again. I wasn’t in the front row because I hadn’t got my ticket as soon as they went on sale. But I was so close I could see the texture of his skin, I could see the spit as he sang, the sweat that welled up on his face, the lines, the curling lips, the substance of his great, shaking flesh. Listening to him in rapture, I felt physically as though something was implanted deep within me which radiated light, and love, and healing. My soul, which had begun opening, was flung wide, and I moved outside of myself into a truly ecstatic experience. Every breath that he expelled on stage was moved by love — every note, every vibration in total control, as if, like the god Aeolus, he had the winds of the universe contained in his chest. Pavarotti is an ecstatic man. He moves beyond the boundaries of our limits, and with him, by him, if we let him carry us, somehow we escape the accustomed delineations of our bodies and venture into love and beauty, and are not betrayed.
Later, as I mulled over the experience, I wondered what chemical valve is turned on in the brain when we allow ourselves to be transported beyond the boundaries of what we think of as the self. We shy away from true union, so afraid to let things under our skin, unless via some medicinal needle. I had turned myself inside out; I had reached toward a dream. And the strange new feeling of power that I had, that welled up from my solar plexus, into my heart, into my arms and legs and mind, has never left me.
It seems a lifetime ago now that I decided to disobey my prognosis. First, I got myself off the steroids, with which I had been bombarding my disease at regular intervals of offense and counter-offense. It took so long, it took forever to bring back my shriveled adrenal glands. It took so many books on alternative medicine, it took so many new thoughts. I could never measure progress except by looking back, after months, over setbacks and cul-de-sacs. I learned to think of standing differently — that it was something I did with my head rather than with my feet. Held up by invisible threads — threads of love, of voice, of light, attached to sky. I invented many different kinds of visualizations for myself. I listened to Mozart, imagining myself rising with all the high notes. I drove my children crazy with tapes of Pavarotti. I began to stand on my nothing legs, falling down onto my good friend, the sofa; I sat on the floor with them for long periods of time, gently stretching them, speaking to them, stroking the fire-ant pain that ran up and down. It had been so long since I had been able to tolerate the feel of any but the softest cloth against my skin. I banished the words “never again” from my mind and saved my blue jeans for the day that I would wear them once more. I practiced standing, and with a brace on my leg and a cane, I practiced lurching around the living room, resting, lurching to the kitchen, resting, lurching to the bathroom, resting, crawling to bed, exhausted. On many days I couldn’t move at all, couldn’t see, couldn’t stand. And I battled a tremendous sense of agoraphobia, compounded by my acute sense of being defective.
To eclipse years of effort, effort which never really ends — and why should it? after all, to make as one’s life’s goal the quest for healing is a noble cause — to eclipse the years into a faint outline of description of what I did to get better, is daunting. I could say that I read everything having to do with alternative healing that I could get my hands on, and this built into a considerable library, at least as expensive as regular intervals of methyl prednisolone. I read as I have never read before, poring over sentences with my heart. A few phrases that stand out across the wide fields of new thought that opened might be these: from Deepak Chopra, “...you can change the message encoded in your RNA to re-create healthy cells, rather than replicate disease cells”; from Oliver Sacks, “you can learn to borrow the will” of movement, of things that move; from Isaac Newton, “thought can move the body as heartbeat moves the blood”; from Jacob Needleman, “illness begins with a wound to the soul.” I turned everything around me into an opportunity for healing — snatches of music, patches of light, moments of beauty as they fell around the ugly. For long months I would be stymied and immobilized by the snow and ice of Minneapolis. I read and wrote, practiced new habits of perception and thought. My children grew up beside me. One day I wiggled my toes. Time passed. One day I stood up for good from the wheelchair. Time passed. One day I took the brace off my leg. Time passed. One day, I lay the cane aside. Time passed. Life’s vicissitudes brought me to Colorado. I looked at the mountains. I wanted to hike; I wanted to ski, and eventually, these too came to pass. Walking again has been like one long continuous prayer for me; the spectacular blue sky of Colorado holds me up. My “wolf bite” has let go of me, and little pain remains in my legs. I wear jeans. This past year I gave away my faithful car with hand-controls, named Sally because she enabled me to sally forth; now, on most days, I can drive my partner’s Toyota truck with manual shift. This past year I loaned my wheelchair to an elderly friend who, at 88, no longer gets around so easily. I watch the chair from a distance like a lover, and when it gets a scratch or a mark, I cringe. It still holds the stickers my children pasted on it. I have come to love the wheelchair as I would love a part of myself. I will never get rid of it.
Over the years, my friends with MS have both admired and admonished what I was doing: “don’t speak so much of curing yourself, don’t build your hopes so, because if you relapse and get sicker, than you will feel that you have failed.”
But no, I say, you don’t understand. When it comes to this, there is
no such thing as failure. Success is the light that shines inside you and
says it’s not yet your time to die; success is the voice that sings you
open, that leads you through the labyrinth back to who you intended to
be; success is the breath that lifts in you what has collapsed, always
bringing another chance in the shadow of each passing minute. Cure is an
infinite thing of myriad form that grows from the soul. Why shouldn’t I
hope? Miracles lie in what we look for, and pile up around us, like the
sky, which comes all the way down to our feet, sitting or standing, every
day — at any altitude.
© Katherine Ellis, 2004