“Medicine still contains an oral tradition, passed down in stories: the stories patients tell us, the ones we tell them, and the ones we tell ourselves,” writes contributor Madaline Harrison. Bodies of Truth continues this tradition through a variety of narrative approaches by writers representing all facets of health care. And, since all of us have been or will be touched by illness or disability—our own or that of a loved one—at some point in our lives, any reader of this anthology can relate to the challenges, frustrations, and pain—both physical and emotional—that the contributors have experienced.Bodies of Truth offers perspectives on a wide array of issues, from food allergies, cancer, and neurology to mental health, autoimmune disorders, and therapeutic music. These experiences are recounted by patients, nurses, doctors, parents, children, caregivers, and others who attempt to articulate the intangible human and emotional factors that surround life when it intersects with the medical field.
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About the Author
Dinty W. Moore is a professor and director of creative writing at Ohio University. He is the author of numerous books, including Crafting the Personal Essay: A Guide for Writing and Publishing Creative Nonfiction. Erin Murphy is a professor of English and creative writing at Pennsylvania State University, Altoona College. She is the author of seven collections of poetry and coeditor of Creating Nonfiction: Twenty Essays and Interviews with the Writers. Renée K. Nicholson is an assistant professor in the programs for multi- and interdisciplinary studies at West Virginia University.Jacek L. Mostwin is a professor of urology and the director of the Division of Neurological and Reconstructive Urology at Johns Hopkins School of Medicine, where he also serves as faculty affiliate of the Berman Institute of Bioethics.
Read an Excerpt
Some months ago my wife delivered twin sons one minute apart. The older is Joseph and the younger is Liam. Joseph is dark and Liam is light. Joseph is healthy and Liam is not. Joseph has a whole heart and Liam has half. This means that Liam will have two major surgeries before he is three years old. The first surgery — during which a doctor will slice open my son's chest with a razor, saw his breastbone in half, and reconstruct the flawed plumbing of his heart — is imminent.
I have read many pamphlets about Liam's problem. I have watched many doctors' hands drawing red and blue lines on pieces of white paper. They are trying to show me why Liam's heart doesn't work properly. Blue lines are for blood that needs oxygen. Red lines are for blood that needs to be pumped out of the heart. I watch the markers in the doctors' hands. Here comes red, there goes blue. The heart is a railroad station where the trains are switched to different tracks. A normal heart switches trains flawlessly two billion times in a life; in an abnormal heart, like Liam's, the trains crash and the station crumbles to dust.
There are many nights just now when I tuck Liam and his wheezing train station under my beard in the blue hours of the night and think about his Maker. I would kill the god who sentenced him to such awful pain, I would stab Him in the heart like He stabbed my son, I would shove my fury in His face like a fist, but I know in my own broken heart that this same god made my magic boys, shaped their apple faces and coyote eyes, put joy in the eager suck of their mouths. So it is that my hands are not clenched in anger but clasped in confused and merry and bitter prayer.
I talk to God more than I admit. Why did you break my boy? I ask. I gave you that boy, He says, and his lean brown brother, and the elfin daughter you love so. But you wrote death on his heart, I say. I write death on all hearts, He says, just as I write life. This is where our conversation always ends, and I am left holding the extraordinary awful perfect prayer of my second son, who snores like a seal, who might die tomorrow, who did not die today.CHAPTER 2
My mother falls in the bath, falls in the kitchen, falls on a sidewalk, so Dad tells a secret to me and my sister, Merry — nine and five — "Mummy is sick, you'll have to be big girls now," and I'm not sure why we need to get big so fast, not that I won't obey, it's just that Mummy doesn't look sick, because we can't see fatigue more severe than tired, an exhaustion that sleep doesn't cure, and we can't see that stealthy MS plaque, creeping along the spine, or breaking into the brain, robbing a person of sight or balance or breath, which in the end, Mum can't catch her breath, but I know there are people worse off than me, me who loses a mother at eighteen, after all, Mum is the one whose art will never be expressed, while I am left to dream on.
Merry rides a bike with both hands in the air, flies through the woods on monkey vines, and the time she breaks an arm, she doesn't cry, but I can see fear in her eyes — fear of the dark, fear of falling and getting sick like Mum, that is the scariest for my sister, who swears she will, but I refuse to listen, cheering her on as she swims to the furthest raft at the beach, cheering her on until I watch her drag one leg down the hospital corridor, whispering, "I want to die," as I try luring her into living with hopes of a medical miracle, promises of a life different from Mum's, and she says, "If one of us has to get sick, it should be me — the physically stronger one, the one who doesn't back down from a fight," and after she's gone, I wish I'd said, "You were the biggest girl," but I know there are people worse off than me, after all, Merry leaves Autumn, her seventeen-year-old daughter behind, while I am left to dream on.
And I do dream on, create a daughter, Amber — Amber with a mane of red curls, porcelain skin, a beauty full of dance and music and laughter, who starts to see spots before her eyes just before her wedding day, who finds she carries not only our woman lineage but the gene scientists seek, though she doesn't look sick, she sleeps and sleeps and sleeps, her memory fails, migraines pound in her head, and when she falls on the sidewalk I fall with her, clawing at that gene, trying to take it from her, wash it down my throat, and swallow it for the whole world — so it never falls into another body, so there is never anyone left worse off.CHAPTER 3
A Measure of Acceptance
The psychiatrist's office was in a run-down industrial section at the northern edge of Oregon's capital, Salem. It shared space with a chiropractic health center, separated from it by a temporary divider that wobbled in the current created by opening the door. When I arrived, a man sitting with his gaze trained on the spot I suddenly filled began kneading his left knee, his suit pants hopelessly wrinkled in that one spot. Another man, standing beside the door and dressed in overalls, studied the empty wall and muttered as he slowly rose on his toes and sank back on his heels. Like me, neither seemed happy to be visiting Dr. Peter Avilov.
Dr. Avilov specialized in the psychodiagnostic examination of disability claimants for the Social Security Administration. He made a career of weeding out hypochondriacs, malingerers, fakers, people who were ill without organic causes. There may be many such scam artists working the disability angle, but there are also many legitimate claimants. Avilov worked as a kind of hired gun, paid by an agency whose financial interests were best served when he determined that claimants were not disabled. It was like having your house appraised by the father-in-law of your prospective buyer, like being stopped by a traffic cop several tickets shy of his monthly quota, like facing a part-time judge who works for the construction company you're suing. Avilov's incentives were not encouraging to me.
I understood why I was there. After a virus I contracted in December of 1988 targeted my brain, I became totally disabled. When the Social Security Administration had decided to re-evaluate my medical condition eight years later, they exercised their right to send me to a doctor of their own choosing. This seemed fair enough. But after receiving records, test results, and reports of brain scans, and statements from my own internal medicine and infectious diseases physicians, all attesting to my ongoing disability, and after requiring twenty-five pages of handwritten questionnaires from me and my wife, they scheduled an appointment for me with Avilov. Not with an independent internal medicine or infectious diseases specialist, not with a neurologist, but with a shrink.
Now, twelve years after first getting sick, I've become adept at being brain-damaged. It's not that my symptoms have gone away: I still try to dice a stalk of celery with a carrot instead of a knife, still reverse p and b when I write, or draw a primitive hourglass when I mean to draw a star. I call our bird feeder a bread winner and place newly purchased packages of frozen corn in the dishwasher instead of the freezer. I put crumpled newspaper and dry pine into our wood stove, strike a match and attempt to light the metal door. Preparing to cross the main street in Carlton, Oregon, I looked both ways, saw a pickup truck a quarter-mile south, took one step off the curb, and landed flat on my face, cane pointing due east.
So I'm still much as I was in December of 1988, when I first got sick. I spent most of a year confined to bed. I couldn't write and had trouble reading anything more complicated than People magazine or the newspaper's sports page. The functioning of memory was shattered, bits of the past clumped like a partly assembled jigsaw puzzle, the present a flicker of discontinuous images. Without memory it was impossible for me to learn how to operate the new music system that was meant to help me pass the time, or figure out why I felt so confused, or take my medications without support.
But in time I learned to manage my encounters with the world in new ways. I shed what no longer fit the life: training shoes and road-racing flats, three-piece suits and ties, a car. I bought a cane. I seeded my home with pads and pens so that I could write reminders before forgetting what I'd thought. I festooned my room with color-coded post-it notes telling me what to do, whom to call, where to locate important items. I remarried, finding love when I imagined it no longer possible. Eventually I moved to the country, slowing my external life to match its internal pace, simplifying, stripping away layers of distraction and demands.
Expecting the unexpected now, I can, like an improvisational actor, incorporate it into my performance. For instance, my tendency to use words that are close to — but not exactly — the words I'm trying to say has led to some surprising discoveries in the composition of sentences. A freshness emerges when the mind is unshackled from its habitual ways. In the past I never would have described the effect of a viral attack on my brain as being "geezered" overnight if I hadn't first confused the words seizure and geezer. It is as though my word-finding capacity has developed an associative function to compensate for its failures of precision, so I end up with shellac instead of plaque when trying to describe the gunk on my teeth. Who knows, maybe James Joyce was brain-damaged when he wrote Finnegan's Wake and built a whole novel on puns and neologisms that were actually symptoms of disease.
It's possible to see such domination of the unexpected in a positive light. So getting lost in the familiar woods around our house and finding my way home again adds a twist of excitement to days that might seem circumscribed or routine because of my disability. When the natural food grocery where we shop rearranged its entire stock, I was one of the few customers who didn't mind, since I could never remember where things were anyway. I am less hurried and more deliberate than I was; being attentive, purposeful in movement, lends my life an intensity of awareness that was not always present before. My senses are heightened, their fine-tuning mechanism busted: spicy food, stargazer lilies in bloom, birdsong, heat, my wife's vivid palette when she paints, have all become more intense and stimulating. Because it threatens my balance, a sudden breeze is something to stop for, to let its strength and motion register. That may not guarantee success, as my pratfall in Carlton indicates, but it does allow me to appreciate detail and nuance.
One way of spinning this is to say that my daily experience is often spontaneous and exciting. Not fragmented and intimidating, but unpredictable, continuously new. I may lose track of things, or of myself in space, my line of thought, but instead of getting frustrated I try to see this as the perfect time to stop and figure out what I want or where I am. I accept my role in the harlequinade. It's not so much a matter of making lemonade out of life's lemons, but rather of learning to savor the shock, taste, texture, and aftereffects of a mouthful of unadulterated citrus.
Acceptance is a deceptive word. It suggests compliance, a consenting to my condition and to who I have become. This form of acceptance is often seen as weakness, submission. We say I accept my punishment. Or I accept your decision. But such assent, while passive in essence, does provide the stable, rocklike foundation for coping with a condition that will not go away. It is a powerful passivity, the Zen of Illness, that allows for endurance.
There is, however, more than endurance at stake. A year in bed, another year spent primarily in my recliner — these were times when endurance was the main issue. But over time I began to recognize the possibilities for transformation. I saw another kind of acceptance as being viable, the kind espoused by Robert Frost when he said "Take what is given, and make it over your own way." That is, after all, the root meaning of the verb "to accept," which comes from the Latin accipere, or "take to oneself." It implies an embrace. Not a giving up but a welcoming. People encourage the sick to resist, to fight back; we say that our resistance is down when we contract a virus. But it wasn't possible to resist the effects of brain damage. Fighting to speak rapidly and clearly, as I always had in the past, only leads to more garbling of meaning; willing myself to walk without a cane or climb a ladder only leads to more falls; demanding that I not forget something only makes me angrier when all I can remember is the effort not to forget. I began to realize that the most aggressive act I could perform on my own behalf was to stop struggling and discover what I could really do.
This, I believe, is what the Austrian psychotherapist Viktor E. Frankl refers to in his classic book, The Doctor and the Soul, as "spiritual elasticity." He says, speaking of his severely damaged patients, that "man must cultivate the flexibility to swing over to another value-group if that group and that alone offers the possibility of actualizing values." Man must, Frankl believes, "temper his efforts to the chances that are offered."
Such shifts of value, made possible by active acceptance of life as it is, can only be achieved alone. Doctors, therapists, rehabilitation professionals, family members, friends, lovers cannot reconcile a person to the changes wrought by illness or injury, though they can ease the way. Acceptance is a private act, achieved gradually and with little outward evidence. It also seems never to be complete; I still get furious with myself for forgetting what I'm trying to tell my daughter during a phone call, humiliated when I blithely walk away with another shopper's cart of groceries or fall in someone's path while examining the lower shelves at Powell's Bookstore.
But for all its private essence, acceptance cannot be expressed purely in private terms. My experience did not happen to me alone; family, colleagues and friends, acquaintances were all involved. I had a new relationship with my employer and its insurance company, with federal and state government, with people who read my work. There is a social dimension to the experience of illness and to its acceptance, a kind of reciprocity between self and world that goes beyond the enactment of laws governing handicapped access to buildings or rules prohibiting discrimination in the workplace. It is in this social dimension that, for all my private adjustment, I remain a grave cripple and, apparently, a figure of contempt.
At least the parties involved agreed that what was wrong with me was all in my head. However, mine was disability arising from organic damage to the brain caused by a viral attack, not from psychiatric illness. The distinction matters; my disability status would not continue if my condition were psychiatric. It was in the best interests of the Social Security Administration for Dr. Avilov to say my symptoms were caused by the mind, were psychosomatic rather than organic in nature. And what was in their interests was also in Avilov's.
On hi-tech scans, tiny holes in my brain make visually apparent what is clear enough to anyone who observes me in action over time: I no longer have "brains." A brain, yes, with many functions intact; but I'm not as smart or as quick or as steady as I was. Though I may not look sick and I don't shake or froth or talk to myself, after a few minutes it becomes clear that something fundamental is wrong. My losses of cognitive capability have been fully measured and recorded. They were used by the Social Security Administration and the insurance company to establish my total disability, by various physicians to establish treatment and therapy programs, by a pharmaceutical company to establish my eligibility for participation in the clinical field trial of a drug that didn't work. I have a handicapped parking placard on the dashboard of my car; I can get a free return-trip token from the New York City subway system by flashing my Medicaid card. In this sense I have a public profile as someone who is disabled. I have met the requirements.
Further, as someone with quantifiable diminishment in IQ levels, impaired abstract reasoning and learning facility, scattered recall capacities and aptitudes which decrease as fatigue or distraction increases, I am of scientific use. When it serves their purposes various institutions welcome me. Indeed they pursue me. I have been actively recruited for three experimental protocols run by Oregon Health Sciences University. One of these, a series of treatments using DMSO, made me smell so rancid that I turned heads just by walking into a room. But when it does not serve their purpose, these same institutions dismiss me. Or challenge me. No matter how well I may have adjusted to living with brain damage, the world I often deal with has not. When money or status are involved, I am positioned as a pariah.(Continues…)
Excerpted from "Bodies of Truth"
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Table of Contents
Contents Foreword by Jacek L. Mostwin Preface Two Hearts Brian Doyle Spared Deborah Burghardt A Measure of Acceptance Floyd Skloot One Little Mind, Our Lie, Dr. Lie Matthew S. Smith Locked into Life Mark Brazaitis Rendered Mute Teresa Blankmeyer Burke Jamie’s Place Michael Bérubé A Day in the Grammar of Disease Sonya Huber Marked William Bradley 750 Words about Cancer Rebecca Housel The Power of a Handshake Hugh Silk Submerged Tenley Lozano Where Do You Go from Alston Street? Kat Moore Confession Diane Kraynak This Moment Adriana Páramo Sit Still and Uncover Your Eyes Elizabeth Brady Overtones Meredith Davies Hadaway The Way of the Spring Patrick Donnelly Type One Riley Passmore The Bad Patient Sandra Beasley A Tribute to the Pharmacist Taison Bell Flying into Jerusalem Katherine Macfarlane Reluctant Reliance Erin M. Kelly An Interview with My Mom Belinda Waller-Peterson Days of the Giants Madaline Harrison Source Acknowledgments List of Contributors