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Shaking the Stigma of Epilepsy
Thanks to brain surgery, Cassandra POTICHNYJ’07 is two years free of epileptic seizures. But she recalls every detail. How they start: the sudden aura, the pleasant tingling, the exhilaration. Then how, as she describes in her new children’s book, My Shaky World:
“Like an electrical zap, my brain lights up so bright,
I shake and fall and my muscles get very tight.”
In My Shaky World, co-authored with Elley Ray Hennessey, Cassandra turns the experience into fun, finger-snapping rhymes. Her goal with the rhymes, and accompanying jokes and activities, is to increase understanding about epilepsy—because, as with any disease, when understanding grows, stigma fades.
Cassandra wants every kid with epilepsy to have what she didn’t: a life like other kids. “It wasn’t so much that I was bullied as dis-included. Kids and their parents would worry about inviting me, for example, to their cottage: ‘What if she has a seizure while swimming in the lake, or walking in the forest?’
“It was sometimes the same with teachers. Concerned that I’d have a seizure while on a class trip, they’d suggest I stay at school while everyone else went.”
Epilepsy wasn’t Cassandra. Epilepsy was Cassandra’s neurological disorder. But few got the distinction. “It was a misunderstanding that shaped how others saw me. It was isolating, heart-breaking.”
The inspiration to write, to share, came after her second surgery. She’d had sections of her left temporal lobe, the ones causing the seizures, removed. Recovering, Cassandra remembered reading picture books and watching cartoons. “I always wished there’d be a character like me, with epilepsy. Now I decided to create my own character, in a story that would appeal to all kids, while reassuring kids going through what I did. A silly story, but at the same time helpful.”
Cassandra invented the nutty character who’d turn out to be her protagonist:
“Knock-knock.
Who’s there?
Cashew.
Cashew who?
Cashew with a little brain boo-boo!
My shaky world has many names, you see,
But the doctors all call it ‘epilepsy.’”
With such buddies as Serenity the unicorn and Zee the bumblebee, Cashew takes the reader on a learning tour of the disorder.
Meanwhile, with real-life buddy Elley, who’s also a coach and actor, Cassandra is creating an animated series of My Shaky World. On Elley’s urging, Cassandra will voice the lead. Turns out Cassandra’s high-pitched voice makes her a natural cartoon star.
To find out more about and order My Shaky World and also Cassandra’s second book, The Z, Y, X, W, V of Epilepsy, visit .
Quotations from My Shaky World by permission of the author.
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LAND ACKNOWLEDGMENT
We wish to acknowledge this land on which Branksome operates. For thousands of years, it has been the traditional land of the Wendat, the Seneca, and most recently, the Mississaugas of the Credit River. Today, this meeting place is still the home to many Indigenous peoples from across Turtle Island and we are grateful to have the opportunity to work and go to school on this land.*
*The Land Acknowledgement may evolve as we honour our commitment to Truth and Reconciliation in partnership with Indigenous communities.
*The Land Acknowledgement may evolve as we honour our commitment to Truth and Reconciliation in partnership with Indigenous communities.
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