All the Difference

by Patricia Horvath

  Even without these cues, I knew that this appointment was different, more serious, than any of my previous ones at the Bridgeport clinic. Dr. Wayne Southwick, whom we were scheduled to see, was a renowned orthopedic surgeon, “tops in his field,” Dr. Mangieri had said. Getting an appointment wasn’t easy, both for insurance reasons and because of Dr. Southwick’s schedule. My mother recalls that Dr. Mangieri had first needed to make a presentation, detailing to a number of other physicians, Dr. Southwick among them, the history of my case. This presentation had taken place at the Bridgeport clinic. I have no memory of that event whatsoever, yet my mother insists that I was there.

  The presentation was so clinical and cold. It was like you were a specimen, as though you weren’t even in the room. You weren’t a patient, you weren’t a young teenage girl, you were “the case” with “the deformity.” I thought, Oh, my God, this is so hard to hear. I just wanted to scream at him: “Shut up, don’t say these things in front of her—she’s human!”

  A nurse showed us to Dr. Southwick’s office, where I changed into the hospital gown, tying it as tightly as I could. I shivered, not just from the cold November day or the flimsy gown, but from all that a hospital gown entails—vulnerability, the transformation from person to patient, the ceding of self. The office was spacious and light, so different from Bridgeport, with a large polished desk, family photos, and a nautical theme dominated by pictures and sculptures of whales. I hoisted myself onto the examining table. My mother sat in a small chair. To while away our long afternoons at the Bridgeport clinic, she’d taken up needlepoint and was working now on a complicated piece depicting a fire-breathing Chinese dragon. If we spoke about anything, it was mundane. I was too frightened, I know, to focus on what might come next.

  Soon a tall, white-haired man entered the room and, nervous, I stood up from the table. He walked over to us, shook first my mother’s hand then mine. Even from a distance of thirty years I can recall how he spoke to me directly, using language a teenager could understand. I was more than a body gone awry, he seemed to say; I was a person, someone about to endure a lengthy ordeal. It was important that I understand what he needed to do and why.

  Dr. Southwick explained that the spine is the supporting column for the entire body. Mine was twisted from mid-spine to base, unable to do its job. A mild curvature was considered to be less than thirty degrees; severe curvatures were greater than sixty degrees. I fell somewhere in between, a bit closer to “severe” than “mild,” but the brace clearly wasn’t working. Without surgery, Dr. Southwick continued, I could become stooped, my lungs compressed, weighing on my heart, damaging it. Breathing could become difficult; there was risk of long-term pain, pneumonia, even a shortened lifespan.

  I had just turned fifteen and was still growing—crookedly. The time for surgery was now.

  Calmly and with great precision, Dr. Southwick spoke to me, his words revealing my future. Two metal rods, one to support each curve, would hold my spine in place and keep the curvature from worsening. My vertebrae would be fused from mid-spine to base with bone grafted from my hip. The operation would take five or six hours, and I would remain in the hospital for about three weeks. At first I would be in a plaster “shell,” a kind of holding cast for my torso. A week or so after surgery, once I had sufficiently healed, I would be set into a chin-to-hip plaster cast. This cast would extend to the knee on one leg; I could choose which leg. I would spend three months in this cast, flat on my back, able to move both arms and bend one leg, unable to sit up, raise my head, roll over.

  After three months, I would be cut free and placed into a lightweight fiberglass cast. I would have to relearn how to walk. My spine, Dr. Southwick explained, would be permanently fused, unable to bend. If all went well, he could remove the fiberglass cast in another four months, after which I would begin to gradually wean myself from the brace. The entire procedure would take about a year.

  All of the springs and straps, the rashes, lesions, and sleepless nights had not sufficed to keep my spine in place. Now we would use steel rods, implanted in my body. I tried not to dwell on the details, the girl on the table, anesthetized, swaddled in plaster, immobile. Step on a crack and you break your mother’s back.

  Three or four times we made the trip to New Haven to consult with Dr. Southwick. The hospital was almost an hour away, and on these days I did not go to school. After each visit, my mother would take me to lunch at the Rathskeller, a nearby German restaurant that I liked because it was wood-panelled and dark, full of Yale students, people whose age I could imagine being. They laughed and were loud and confident-seeming in their bodies. I’d order a Reuben, and my mother would let me have one of the dark beers that arrived all frothy in a cold-beaded stein. On the drive home, feeling drowsy, I’d shut my eyes and sleep. The next day was a school day, one more in an endless stream that would eventually lead to my life.

  I resisted surgery in a way I had not resisted bracing. The thought of being helpless terrified me. Sentenced to bed for months, able to use only my arms, unable to bathe, feed myself, use the bathroom—I told my mother I would gladly forgo surgery in exchange for a few years at the end of my life. My father’s mother was stooped, yet she drove and painted and played shuffleboard and no one had fused her spine. I resented my mother, my brother, their big compliant bodies, my mother’s ability to press her palms flat to the floor, Chipper’s baseball mitt, hockey stick, football helmet, and bike.

  I threatened to run away. My father lived in Manhattan; occasionally Chipper and I visited him for weekends of Chinese food and HBO movies. I harbored fantasies of moving in, knowing he was far too negligent to ever concern himself with my health. I’d sleep on the pullout couch, stay up late, never wear my brace or go to school.

  I proposed alternative treatments. Chiropractors could straighten spines. Acupuncture—why not? A girl at school told me about a faith healer who had sent someone’s cancer into remission. Crackpots, Tom said. This was not medicine—sanctified, insured. My mother had been told my condition was life-threatening, and that was that. We would get a second opinion, but only from another surgeon.

  Late in the year we drove to Hartford, to the Newington Children’s Hospital, formerly the “Hospital for Crippled Children.” The waiting area, with its stuffed animals and children’s magazines, exuded a feeling of clinical well-being, if not actual safety. I was hopeful. Nothing this doctor told me could be worse than what I had learned at Yale; logic dictated it must be better. He would take a wait and see attitude, counsel patience, more exercise. I’d bring up chiropracty and he would stroke his chin and say Hmmm . . . yes . . . let’s discuss that.

  Instead he told us, quite brusquely, that surgery was in order. He recommended a longer convalescent period in a shorter cast, but the details were more or less the same. He had, he assured us, done many such operations and had never botched a single one. Of course spinal surgery was extremely complicated. Even a slight mistake could result in the patient’s paralysis. If, however, he were to paralyze me—and there was a two percent chance of this—I would hang up my shingle for good.

  My mother stared him down. I knew that look. In all the years of dealing with orthopedic doctors, therapists, x-ray technicians, receptionists, insurance companies, of driving to strange and seedy places, waiting for hours, absorbing my anger and fears, she had never lost her composure, but I could tell she was on the edge, her lips pressed together, her eyes small. Curtly, she thanked the doctor and told me we were leaving—Now!

  All the way home I cried. The doctor’s words had not been a balm. Fewer than five percent of adolescent women have scoliosis, a statistic I had learned. Of those, most do not require bracing. Of those who do, I had been told that ninety percent respond favorably to treatment. I was already a percentage of a percentage. If I underwent surgery, why wouldn’t I be paralyzed?

  This time we did not stop for lunch. My mother gripped the steering wheel so hard her knuckles turned white. Arrogant bastard! she muttere
d.

  My mother spent the weeks before my surgery on the phone—arranging for tutors, time off from work, insurance coverage for a day nurse, a rented hospital bed. She brought out the sewing machine and made bed jackets: a reversible quilted one, red and blue, a floral cotton short robe; she splurged on a sheer white jacket with bell sleeves from Bloomingdale’s. These were all I would wear for the next three months.

  Tom wisely did not engage me in conversation, but he no longer complained about my loud music, my bad table manners, and my general hostility. Chipper lent me albums and even offered to let me borrow his portable eight-track player. But he was always nice to everyone, even Tom, even when he was being yelled at for running the dryer or leaving on a light. What I wanted was someone to share my anger. I felt duped. For three years I had had the false solace of believing my condition temporary. I would exercise until my back grew strong enough to change the course of my spine. I would wear a brace until I stopped growing. I would have surgery, but eventually walk again, unencumbered. Now a new possibility had arisen—I would be crippled. I would never drive, dance, swim, have sex, marry, no one would want me. Chipper would move out and I’d be stuck living with my mother and her miserable husband until they died and then . . . what? Thinking this, I could make myself cry, and crying felt good.

  In Hospital

  I could walk and then I could not.

  I walked into the hospital; three weeks later I was wheeled out on a stretcher, loaded into an ambulance, and driven home. Between these two events, there is much I do not remember. For nearly a week I was sedated on morphine. My recollection of the days immediately following my surgery is sporadic, deeply synesthetic. Clammy blue hospital slipper socks, odors of ammonia and overcooked vegetables, bursts of flowers—carnations, roses, lilies—their browned petals spilling onto the windowsill in the overheated room. Wheezing from the bed across the aisle, a bed around which the curtains remained steadfastly closed. This raspy sound was all I heard late at night when the adolescent ward, so noisy during the day, was distilled to eerie silence and my need for morphine had wakened me again. For narrative details I rely on my mother, who understandably does not wish to dwell here. Already she had lost one child, her first, to sudden, inexplicable disease. The next one was about to undergo potentially crippling surgery. I can’t begin to imagine the anger and helplessness she must have felt. When asked about it, she pushes at the air, pushing that time back into the past where she wishes it would remain.

  Just before your surgery, I was lying in bed one morning and I felt I would never be able to get up. I felt this tremendous weight on my chest—real weight, not symbolic. I thought, I can’t do this, I can’t make her suffer any more. You were so scared. Remember that sonofabitch doctor who told us you might be crippled and how he’d stop practicing if that ever happened? All he cared about was his reputation. And I thought how can I make her go through with this? But here were these doctors—experts—saying we had to operate. So I just lay there, angry at everything—at God, fate, the universe—whatever had put you in this situation. And I didn’t know what to do.

  Then a thought came to me, out of nowhere. All you can really do is show your kids how to live with adversity. That was it. That’s what I had to do. Deal with it and get you through. And the weight lifted.

  In telling me this, she begins to cry. Why do you want to know? she asks. Why go back there? It’s a good question. Writing, especially memoirs, is a perverse inclination. All of that dredging up of unpleasant memories. Implicating others in one’s own narrative. Why go back indeed? Yet the past refuses to remain in its neat little coffin; one may as well push at air. Our histories haunt us. I am still the Girl in the Brace, still relearning how to walk. Though no longer visibly disabled, my self-perception has been irremediably altered by my experiences.

  For thirty years I did not speak of this. Like my mother, I wished to bury the past. Bone disease changed that—forcing me to confront my own complicity in my decay. Let loose from my cage at age seventeen, I began to starve myself. It was not difficult to do. I had coffee for breakfast, spent my lunch money on yogurt and weed. We were a household of two working adults and two teenagers. My mother worked longer hours once my recuperation was complete, woke at dawn on Sundays to drive Chipper to hockey practice, ran errands for her bedridden mother who called several times a day demanding booze, cigarettes, ice cream, emphysema medicine. She enrolled in night courses at the local university. Meals were on the fly, and sometimes my mother did not have time to eat. Rather than have us sit at the table with Tom, who didn’t want our company in any event, she permitted Chipper and me to eat on TV trays in the den. I picked at my food, filled up on salad, said I’d had a big lunch.

  I wanted, I think, to punish the body that had caused me so much trouble. Doubtless vanity figured as well. For three years I’d been encased in metal, plaster and fiberglass. I’d been poked at, prodded, ridiculed, ignored, had suffered insomnia, welts, heat rashes, and for nearly four months I’d been unable to move. Set free, I wanted to physically break with my past, to be noticed for the shape I imposed upon my body rather than the other way around. At 5' 8" and 103 pounds, I was the thinnest girl in the room. Meanwhile my bones, starved of nutrients, were beginning their slow erosion.

  I try to explain this to my mother. I tell her I’ve always seen myself as two selves—functional mind, dysfunctional body—one to be cultivated, the other endured. It is a self-conception that still holds. Yet by internalizing this identity—the disabled person who is no longer seen as such from outside—have I not caused myself harm? My inability to synthesize these selves, the privileging of mind over body, caused me to shun food, physical activity, and the outdoors long after my cast came off. I’ve even adopted a motto—“You’re always better off indoors”—that I use whenever some well meaning person (invariably male) suggests a hike in the woods, a jog through the park or, worst of all, a camping trip. The great craggy vistas of the American West do not inspire me, except as landscape to be imbibed discretely and at a remove—in the photos, say, of Ansel Adams or Lee Friedlander. I see their cacti, their plains and buttes, and no lyric strain of rugged individualism swells my heart. I feel no desire to hike the lonesome trail, pitch my tent beneath the stars, sing odes to the lonesome prairie. A walk around the Harlem Meer will do just fine. My friends attribute this antipathy to bookishness. But it’s more complicated than that. I’ve never learned to fully inhabit my body, to see myself as physically capable. My grappling with the past is more than a desire to piece together events; it is an attempt to forge an integrated self. To do this, I need to ask questions.

  For one entire day I did not have to wear my brace. I checked into the hospital the day before my surgery for preparatory x-rays and lab work. Between appointments, I wore jeans and a turtleneck, luxuriating in the softness of my clothes against my skin. That evening a nurse shaved me front and back. When she left I splayed my fingers against my stomach, still pink from the razor. I twisted in front of the bathroom mirror to glimpse my unscarred back. I showered, changed into my pajamas—no hospital gown! no brace!—and thought I am doing these things, I am brushing my teeth. The other girl in the room was, I’d been told, “a bad case.” She moaned and wheezed and her parents did not speak to anyone. They sat all day behind the curtain that encircled her bed. No one said to me, See how much worse, for which I was glad. It was not a comforting thought.

  Just before Lights Out I was given a sedative and another in the morning before the orderlies put me on the gurney and wheeled me to the operating room where, surrounded by strangers, I was alone. Beneath his green surgical cap and mask I recognized Dr. Southwick. He said good morning; he said relax. The anesthesiologist hooked me up to an IV. He said count backward from one hundred, and I began.

  Patient was brought to the operating room, placed under general anesthesia, and intubated. She was then turned in to the prone position on rolled towels and the back was prepped and draped in the usual fas
hion. A straight longitudinal incision was made from T10 down to the sacrum. . . . The first Harrington rod was placed from a sacral bar to L2 on the left side. The Harrington rod, the second, was placed from L4 up to T10 on the right side. . . . A large amount of cortical bone was then obtained from the right iliac crest through the same incision. . . . Prior to the placement of the bone graft, all wounds were debrided with a water-pik. The graft was laid down with care to place most of the graft on the concave side of all curves. . . . Hemovacs were inserted prior to closure. The wound was dressed.

  The patient was placed in a posterior plaster shell. She was then turned into the supine position, extubated, and was sent to the Recovery Room in satisfactory condition.

  —Dr. Wayne Southwick, Chief Orthopedic Surgeon

  Yale New Haven Hospital

  I do not know how long after surgery I regained consciousness, how much time elapsed before I again took note of my surroundings. The surgery took over six hours. Throughout that time, my mother and my father’s mother kept vigil. They sat together in my hospital room, my grandmother moving her lips in silent prayer, my mother embroidering a whale for Dr. Southwick’s office—a propitiatory gesture, appeasing fate via the almighty surgeon. They took turns at the pay phone, brought each other coffee, did not eat. Still doped up on anesthesia, I was wheeled into the Recovery Room, an event I do not recall.

  From my mother’s college English paper:

  The first thing Pat said after surgery was “I can wiggle my toes, I’m not paralyzed.” She thought she might be paralyzed because one of the many doctors we consulted before deciding on surgery kindly volunteered statistics to this teenage girl, citing the chance she would have of walking away from surgery. He remarked that if he ever paralyzed anyone he would hang up his shingle. We weren’t interested in his ego-trip, our concern was the impact of this news on an adolescent who knew she already fell into the ten percent of scoliosis patients who did not respond satisfactorily to bracing and therefore faced surgery or the risk of shortening her lifespan. The possibility of becoming a victim of another set of statistics terrified Pat.