cerebral palsy
I Remember This: I See a Disabled Person
I remember this:
I am eight. I am waiting alone for the little bus inside the doors of my school, White Sulphur Springs Elementary, in the Catskills. I glimpse a small girl not far away – tired, leaning against the wall like it was holding her up. Seeing her, I feel a sorrow for her. The sorrow is bigger than me, it blooms out of my stomach and swallows me whole like a monstrous flower. In the next instant, I see that I’m looking at myself in the reflection of a display cabinet’s glass doors. I am angry at myself – first, for letting myself look like that – then, for looking like that. Then I know that I will never be faster than seeing is. It can get even me. This means that while I’ll empathize with strangers who feel sorry for me in decades to come – having done it myself – I’ll want them to snap out of it, too – as I did.
I’ve been the only (identified) disabled student in my classes in five schools since first grade, I see children “like me” at this clinic and on tv once a year during a telethon that makes me cringe. That’s it. I have a pronounced lack of images to work with and an inability to decipher the ones I do see.
I Remember This: My Cerebral Palsy Is Cured By Muscular Dystrophy
My question seemed to make everyone relax. That made me, at 10, the person I wanted to be: In control, competent, helpful. This was difficult for them. It was a good thing for me to recognize and care about. But it was also an ability that helped me avoid feeling much of anything about the word “degenerative.”
By the time I was ten in early 1976, my father finally found a job he seemed likely to keep and we settled into our second tiny Connecticut town. I’d been to three public schools during fifth grade and was wearing the Milwaukee back-brace 23 hours a day.
The only picture of Newington Children’s Hospital I could find that resembles the building as I saw it in the 1970s after its renovation in 1968. This is a color rendering from eBay.
I’d started being seen in the pediatric neurology clinic at Newington Children’s Hospital, up by Hartford. (It had been formerly known by the delightful names Newington Home and Hospital for Crippled Children, as well as The Newington Home for Incurables.) Dr. Russman and Dr. Drennan, my neurologist and orthopedist, respectively, questioned my diagnosis of cerebral palsy atypical but continued the familiar routine of x-rays and exams every 3 months to monitor my always-worsening scoliosis.
After growing the tissue from two nerve and muscle biopsies taken from my upper arm and calf (an experience that included my first overnight in a hospital, my first pre-procedure Valium, and hearing the words, “Skin stretcher, please,” uttered in connection with my own personal calf), they scheduled an appointment for the verdict. I was interested in a detached way; I was comfortable with not really being one thing or the other, medically.
I Remember This: What Getting My First Milwaukee Backbrace Was Like
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.
Tales From the Crip 