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.
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 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.
Alice’s schoolteacher handwriting greeted Gretchen when she flipped through the mail that evening. It was a floridly pious Mother’s Day card with a letter enclosed. Her mother must have sent it right after Gretchen had called about the board meeting fiasco. Oh Alice, Gretchen snorted pleasurably. I couldn’t have picked a better card myself.
Underneath the card’s summary appreciation for maternal sacrifices, physical and emotional, Alice had written, “Thought you might like to see the enclosed item right now. I think it confirms that we are related. I cannot take credit for why you are who you are but I did have a hand in it. Then again, you were always a rotten child. Not that I had anything to do with that. Love, Mom.
The letter was her mother’s same handwriting. Cheered, Gretchen set to reading it. It was dated from May 1970 and addressed to a Desmond Wallace, Chair of Fundraising Operations for the National Cerebral Palsy Association. Oh dear.
The question of whether early gluttony for, say, corn on the cob is an innate or acquired trait is just the sort of debate that misses the point entirely. To paraphrase the elegant MFK Fisher: When I write about gluttony, I am writing about a gluttony for joy, a gluttony for excellence, and — frequently — a gluttony for any foodstuff bathed with melted butter.
FuckAbility™ Research Council to Speechless: You Had Us At “Trash Ramp”
Matt Damon calls on Speechless producers to be more inclusive of nondisabled white male actors
Frankly, the Speechless pilot could end with Minnie Driver’s character pulling a Divine and it would simply convey the amount of shit people with disabilities and their families are expected to eat every day.
(Highway, Heaven) After a cruel, cruel summer that included When Khaleesi Met Romanticide and a profoundly fucked up little number called Don’t Breathe, the autumn winds are blowing our sad, tragic little skirts right up with Speechless.