By Deron Hamel
It wasn’t long after Sarah Hysenaj had her first seizure that she became an epilepsy awareness advocate.
Sarah was 11 years old and on a school field trip when she had her first seizure in front of her classmates. Fortunately for Sarah, her teacher knew exactly what was happening and what to do.
“My teacher had a brother with epilepsy and immediately recognized my symptoms and knew what was occurring and how to take care of me,” Sarah recalls. “My teacher called my parents and explained everything, and my mom was able to provide this information to my paediatrician, who made the referral to a neurologist.”
That was seven years ago.
After her diagnosis, Sarah, who recently graduated from Rosedale Heights School of the Arts in Toronto, began raising awareness of epilepsy. She launched a unique initiative called Strings For Life, which sees noted musicians donate their used guitar strings to Sarah who uses them to make beaded jewelry that she auctions off at the Epilepsy Toronto Busker Ball.
Celebrities who have donated their guitar strings include record producer Daniel Lanois, Blue Rodeo guitarist Jim Cuddy, American country singer Iris DeMent and members of the Late Show with David Letterman band.
One day after an appointment with her neurologist, Sarah was with her mother and they were passing the CN Tower, which was lit up red in honour of Remembrance Day. She recalls wondering if there was a day to mark epilepsy awareness. This was before March 26 was designated as Purple Day in 2008.
Remembering her experience looking at the CN Tower a few years earlier, Sarah helped with the effort to have Toronto’s most famous landmark lit up purple on Purple Day in 2009.
In September, Sarah will be attending Ryerson University’s photography studies program. To help with her educational pursuits, Sarah has received an OBCL Epilepsy Scholarship Award. She is one of four students to receive the award this year. The scholarships were presented to recipients June 17 during Epilepsy Ontario’s Summerfest: Sail Away cruise in Toronto.
OBCL has been supporting students with epilepsy through the scholarship awards since 2006. Every year, up to 10 Ontario students win a $1,000 scholarship for post-secondary education. As part of their application package, students must submit a personal essay under that year’s theme.
For Sarah, living with epilepsy is all about maintaining a positive state of mind. She notes that she has faced several other challenges, including a learning disability and anxiety, but she approaches them as opportunities rather than difficulties.
“Choosing to consider them as opportunities helped me to have a sense of control over challenge,” Sarah says. “These opportunities, in turn, helped me to improve myself, gain confidence and independence, and therefore because of these challenges I don’t believe I would have become the person I am today and for that I am grateful.”
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