The story goes that when I was born, the umbilical cord got caught around my neck cutting off oxygen for just enough seconds so that by the time I was three, I couldn’t hold a pencil or tie my shoes with my very shaky hands. I don’t remember when I started having a specialist at Sick Kids which in the 80s never amounted to far too many blood tests and the same exercises every six months – try to walk in a straight line without tipping over, hold your hands arms out straight and let’s watch you shake (I’d hold my muscles so tight so I wouldn’t) and let’s check your reaction time when I drag my car key up along the bottom of your foot. All followed by, yup, you have cerebral palsy and we’ll keep seeing you until you’re 16.
I don’t remember who first called it My Shaking, probably me? I dealt with it in two ways. First, denial. By the time I was in second grade my teacher said I would have to learn to type in order to be able to get through school. I simply couldn’t write, it was illegible not to mention painful but I still fought to be able to do it – to stay at my desk and not walk up the row to the huge, architect’s desk that had been made just for me, with a yolk to push my scrawny body and chair into, up close enough to be able to type on the brown and beige Smith Corona that was bigger than my bowl cut framed head. I’d flick the switch and it hummed and glowed like a mothership returning to its home planet. It was a massive gift and changed my life, all thanks to Easter Seals, but at the time, I wanted none of it. What would Ramona Quimby think and when would kids stop calling me Shake ‘n Bake?
The second way I deal with my shaking was (is) through humour. From an early age I would work my way through an array of jokes to distract from the soup I was spilling or when I couldn’t keep my colouring inside the lines or couldn’t zip up the front of my winter coat. I’d scoff at how I’d never be a brain surgeon or a watch repair person! Even yesterday I told my kids I should get hired to give Covid test, imagine how effective I would be! They laugh, my husband teasing, but I still remember the pitying looks I’d get from classmates and friend’s parents when I’d make jokes, “Oh Sarah, don’t say that, it’s awful.” I’ve always just wanted to shake, joke and move on.
The summer before grade 3 I had to learn to type, it was impossible for me to physically keep up and my skinny arms would be killing me at the end of each day from trying. My Nana sat with me every morning and taught me to type the way the other kids learned piano. For hours, propped up on pillows to be able to reach the typewriter keys, I practiced exercises and it didn’t take long before I could type a few words without looking, both hands on the keys, slow and steady the quick brown fox went.
I used the typewriter and the architect’s desk for three years, hating it everyday because it wasn’t safe and fun like my days practicing with Nana had been. When I had to type in class, I would walk from my seat at the back of the room (probably I’d asked to be seated that far away from the electronic beast) and the class would groan. I would pull out the fluorescent orange seat with SARAH written in bold Sharpie on the back and flick the switch meaning the teacher had to speak louder. Spelling dictations were impossible, I would type and blink back tears while kids yelled at me to shut up.
It was around grade four that one thing, the best thing, clicked. I was getting faster, I hated it but was smart enough by then to know there was no option. I had a desktop computer at home and spent hours each night writing my own stories. A novel about a goldfish, a short story about an old woman being evicted from her apartment that my mom actually sent to the Toronto Star. A local newspaper wrote a story about me, an eight year old who was fulfilling her dream of writing thanks to the help of Easter Seals. They were absolutely right. My hands could never have kept up with my stories, my thoughts, and these ideas pushed me daily to keep at it, typing faster and faster to keep up with the girls I was writing about. Girls mostly like me, but always without a shake.
I moved to a word processor in grade 6 and then to a laptop in high school and carried it around with me from room to room, locking it up in a classroom at the end of each day. My grade nine typing teacher agreed from the first week that since I was already typing more than 100 words a minute that he’d give me 100% in the course and made a joke of it to the class. I don’t remember being embarrassed. My love of writing and increased speed of typing made for longer than wanted essays the teachers had to mark and exams that ended up being double or triple in length. When I got to university, I was the only one typing in classes (I’m that old) and I’d have to explain my situation to each prof.
Outside of school, I never thought much about it. My family decided early on I wouldn’t be able to drive, but I can and I do, having finally gotten my license with two babies in the backseat. I’ve always had friends to carry my meal tray and now a loving husband to carry my tea, dice the onions, move my game piece around the board and rub my arms for me at the end of a long day when my neck and left arm aches.
These days, as I reach middle age, the pain is worse. What used to be chronic neck pain is now pain in my back that I experience most days. I can’t deny the connection any longer. After so many decades of ignoring and joking away my CP, these days it’s right up in my face.
I never owned my CP or being disabled because it never seemed ‘bad enough’. People usually just think I’m nervous or cold when they catch my hands and arms twitching. As a kid I’d pour over Jean Little novels about kids with ‘real’ disabilities and sob feeling such shame for ever feeling sorry for myself. My hands shook, big deal, on good days I could just imagine it away and for decades I pretty much did.
In a gorgeous essay, Amanda Leduc, who identifies as a disabled writer, speaks to my feelings. She writes,
“When I call myself disabled, I am saying that the disability community is wide and bright and beautiful, and welcoming of all, and that we become stronger with every person who joins us. I call myself disabled so that others with disabilities across a wide spectrum might one day feel comfortable doing the same. “
And for me things are starting to shift.
I still feel like I shouldn’t make a big deal out of this, maybe it’s easier? That my shaking is so small compared to everything in the world, but then on days when I can barely get out of bed because of the pain, the toll my shaking has taken on my body my entire life I know I need to accept it (honour it?) rather than keep fighting it. I’m not sure what that means, but it probably stars with writing this blog to figure it out.
My jokes are really good though, I don’t think I’ll quit those just yet.