I don’t ordinarily post memoir pieces but I have written a lot of first-person material as writing exercises. I’m posting one such piece now to share a little bit about being a very young disabled child.
Because my memories go back to the age of three and no farther, it seems as if I came into existence as I was (just barely) walking with my mother, and occasionally my father, through the long hallways of Rochester’s Strong Memorial Hospital around 1969.
In the confusion about what was wrong with me — cerebral palsy atypical was their best guess and a misdiagnosis until I was 11 — it must have been a strange relief to the neurologists and orthopedists to come upon scoliosis, a particular problem, discrete and treatable.
Milwaukee back-brace used to treat scoliosis, or curvature of the spine. Photo courtesy of the Smithsonian, National Museum of American History.
Scoliosis, the name for curvature of the spine, gave them the opportunity to bring a small sense of order to an unwieldy whole. Dr. Borkstadt, the neurologist who knew me best, and my parents finally decided it was time to treat the worsening condition with a contraption called a Milwaukee back brace. They knew, though I didn’t until later, that I would wear it possibly until my twenties.
Clinic visits from that time always included me bending forward from the waist as doctors, residents, and medical students ran their index fingers down the length of my bare back. Their diagnostic procedure spoke in a simple declarative sentence: “Her spine has two major curves that will need to be braced.”
Orthopedists are carpenters and gardeners; they revere the symmetrical and stake the drooping stalk. The fingers on my back never found the vertical line of a straight spine. Their fingers waved this way and that, slowly sometimes as a medical student hesitated and an instructor said, Yes, follow the line, it’s right in front of you.
I was always x-rayed front and back, and side to side. The x-ray table, cold linoleum, had tape marking where exactly to stand. The camera was heavy-looking but so well-mounted and mobile it might have been a dragon swooping in gracefully to take a closer look at me. I stared it in the eye as the light flashed.
Standing still and holding my breath for 3 seconds was easy. The lead apron was no bother. When I saw the film the hazy crocodilic sway of my vertebrae explained what was wrong with me better than anything.
Dr. Borkstadt said that scoliosis as severe as mine would lead to deformity and pain. Untreated, in time I wouldn’t be able to breathe because my spine would curve so far inward it would invade the space my lungs needed.
Most scoliosis patients are girls in an adolescent growth spurt; the muscles that anchor the spine on either side are unequally matched for a time and one side pulls the spinal column into a curve. Muscle-strengthening exercises were the first level of treatment, then bracing and, as a last resort, fusing the spinal vertebrae together, preventing any curvature – and ordinary bending.
This took us from the upper floors of the hospital down to the maintenance level where orthopedic diagnoses met orthopedic devices.
The first brace shop that I remember was dusty and loud with the sound of saws. The floors were cement and dark, marred linoleum. The lights were like those in garages. Scraps of leather punched with holes for buckles in this pre-Velcro age lay scattered on work benches. The room was filled with the presence of metal, for braces, for tools, for the grab bars a patient grabs to stand still and straight during the plaster casting.
Making a brace that extends from the neck to the hips took time, multiple fittings, and a variety of materials including metal, leather, plastic, and a lightweight fiberglass-based foam.
The process began with two body stockings and orthopedists marking strategic pressure points on the outer stocking with thick black pens. They bickered: “She needs a lateral – “ “No. A cervical collar will attend –“ and poked regions of my back where, apparently, the curves were most severe.
My mother stood watching, arms crossed, a pucker of concern on her face that made me determined not to be bothered by anything.
She was flanked by several men in white coats and work shoes who were perhaps interested in the sight of an unusually young scoliosis patient. The wrapping of wet plaster gauze felt warm and comforting at first. The caster had a kind face the same squared shape of my father’s. It was no hardship to stand very still, holding the metal grab bars overhead as he did his work.
By the time the plaster became uncomfortably hot, I liked him well enough to impress him by staying utterly calm while he sawed the cast in half with a round surgical saw, making it vibrate.
Unlike my older brother, I didn’t have many opportunities to show physical courage; I wasn’t going to miss it. He cut through the inner layer with a pair of blunt-nosed scissors, cracked the shell in half and slipped it off me, taking the marked-up body stocking that was stuck to it.
I stood alone for a minute with my hands still gripping the bar above me, blinking in the bright light. My mother swooped forward to cover the chill of my near nakedness before the men. It was a mix of chill and relief to be so exposed after the stiff wrapping of plaster.
We were in my mother’s bedroom, she and I, one afternoon after her lie-down and before supper took over. She said I needed to try wearing the brace now that it was finished and the fittings were done. It was home with us, in her closet on the floor next to her shoe rack.
I wasn’t worried. I had been through so many fittings while men with thick, rough fingers pushed a pressure pad here and told my mother bluntly it had to be tight – “Tighter, sorry, it’s really gotta squeeze her,” – that I had a quiet, waiting calm for whatever was next. The thing wasn’t comfortable, that was for sure, but it didn’t hurt. All those fittings had been about making it not hurt.
The contraption in the closet was called a Milwaukee back brace and looked like the offspring of football hip pads and a frame for body armor. Every brace was different of course, as each person’s spine was different. It worked on the support-and-contain principle. Flat, vinyl-covered pads were attached to a metal frame extending from the neck to the waist. The pads pushed the back muscles at strategic spots to counter whatever weakness was allowing the spine to curve. Those pads had to push hard to make a difference.
My brace had several pads positioned near the shoulder blades and the lower rib-cage. A metal collar would surround my neck, stopping me from looking down easily unless my whole self from the waist up dipped forward. One long bar in the front and two in the back that spoke of erector sets traveled from my shoulders down my torso to where they fixed onto the molded plastic girdle cinched in at my waist.
This hard plastic skirtlet came down to cover my groin and behind, stopping just short of where my thigh began. The lower edge had been painstakingly trimmed and smoothed – too long and it cut into my legs when I sat.
There wasn’t a lot of actual coverage above the girdle but it still kept me from moving freely. A metal screw held the collar together at my neck; a leather belt buckled the girdle together. It would have been impossible to put it on myself even if I had been old enough since all the fastenings were in the back.
The orthopedic craftsmen had shown my mother how to put it on me. This was her first attempt at doing it at home.
Kneeling and concentrating, she held the back bars and opened the brace like a particularly stiff book as I stood with my back to her. I slipped my arms through empty space between the pads but stopped because the girdle pieces was still too close for me to slip between. She creaked the thing wider and I was in.
“How’s it feel?” she asked, taking a puff on her cigarette. It was a warm, humid day and it didn’t feel good but it didn’t hurt.
“Okay,” I said.
“Well, let’s see if we can fasten it right,” she muttered. The neck screw took a minute but spun easily once she had the pieces in place. “One down,” she said.
I stood still, balancing myself by keeping one hand on her bed. I was wearing the new long undershirt they said I would need to wear to keep my skin from being rubbed raw at the waist, and to absorb sweat. The plastic of the girdle had hard foam padding on the inside and was dotted with air-holes but my skin had to be protected.
My hair was already snagged in the collar. Tears prickled my eyes as innumerable small hairs pulled out. “My hair,” I said, trying not to move my head but wanting to twist around to see her.
“Hold still, hold still,” she said. “What? Where does it –“
Her fingers delicately pulled most of it off the back of my neck and to the side, and she said thoughtfully, “We’ve got to cover….All right, let’s getting this on first.”
We both sighed.
She buckled the girdle tightly enough so that I was aware of wearing this enveloping thing but which my body slipped and slid against. She noticed. “That’s not tight enough,” she said regretfully.
She tightened it so much and so quickly I gasped. “No!” I blurted.
“Okay,” she sounded a little frightened, and loosened it. There, it felt more like it had at the hospital. Snug and it moved with me.
“How’s that feel, honey?” I tried to walk a little in it but that was too hard; I needed to see my feet.
The room had its usual late-afternoon light plus the lamp — the sky was darkening for rain – and the warm yellow glow was too much. It was suffocating. “Off! Take it off!” I had worn it, that was enough. It was too tight and I couldn’t get away from it.
My mother and I were facing each other. How did she know what to do? She was sitting on the white woven bedspread with the window behind her head. My parents had a nice low double bed even I could climb up on. I stood supported by her knees.
“We have to leave it on for a little while,” she said evenly. I must have looked panicked but I didn’t know what to say because I was half-grasping that, Of course, this was what it had all been leading to.
“Just a little while longer today,” she said.
I said, No.
I tried to wiggle around in the thing as if to shake it off. Which just left me breathless and more disturbed. “Just a few more minutes today,” she said, taking my hands in hers. I didn’t say anything.
“I know this is so hard,” she said.
I nodded. I couldn’t speak.
“I know it’s hard.”
I breathed. “It’s okay.”
She didn’t say anything for a minute. Shook her head. “No. It’s not.” She tried to bring me closer to her but I didn’t want to move and I couldn’t bend anyway. “Honey, please. Cry if you want to.”
“I’m okay.” The room was horrible, horrible in its drowning yellowness.
She nodded, looking at me. “All right.” She paused and stood up, propped me against the bed, opened the closet-door where the brace had been. “I want you to do one more thing today and then we’re done.”
She was looking down at me and walked back over to take my hand. “I want you to look in the mirror, see the brace on you.”
No. No. No.
“Come on,” she said quietly.
Next to my mother: a tiny, bent girl with my face, scared and sad, and skinny arms, skinny legs, sideways-looking flattish feet. All buried up to the neck in a hump-backed wide-hipped robotic disguise out of which my head, arms, legs and the rest seemed to extrude, ill-matched pieces, graceless in their own right but now inhuman as well.
I was ugly. Ugly as the Gennessee River bridge was ugly seen in winter on a tense ride home from my grandparents’. An outline against a gray sky of black iron spotted with dirty snow. Surrounded by smokestacks and tree branches. I remember all of this.
I moved my arm; inwardly I felt it a smooth glide of a sweeping gesture but I saw the same motion in the mirror and it was a jagged upward lurch. An ugly movement.
Now I was sobbing and the face was so sad I couldn’t bear to see the girl I looked to be, who wasn’t at all the girl I was. The pinching closeness of the brace, the weight, the pain on my mother’s face that came from me were bad, more than bad enough. The worst however was the betrayal of my own face. It was miserable-looking and wretched. I did not know what to do with my face. It had shocked me and given me away to everyone else at the same time. I could handle being me but not that face because that person was not me.
My mother was unfastening the belt and loosening the screw. When she slipped it off me, I nearly collapsed from the relief. I could feel her heart beating against my back and my arms could press against my stomach again, the world was briefly concentrated in the space of my body from neck to thigh. My mother hugged me and hugged me, the brace lying on its side next to my pants and shirt. I felt everything for a while that evening as if nothing had ever touched my skin before.