TORONTO – Epilepsy is a reminder that none of us has complete control over our bodies. That’s one of the powerful messages driven home during the Canadian premiere of On the Edge: Living with Epilepsy, a documentary about the neurological condition, told by people who are living with it.
Think about it: we have all caught colds, had headaches or some other malady that was beyond our control. In that sense, epilepsy is no different. People living with epilepsy have no more control over the condition than anyone else has when they, for example, catch a seasonal virus.
Despite this, there’s a stigma attached to epilepsy. It frightens people who are unfamiliar with the condition, and this has a detrimental trickle-down effect on those living with epilepsy.
This stigma can cost people their jobs and friendships, which can lead to other conditions, most notably depression and anxiety, the film explains.
On the Edge was written and directed by Louis Stanislaw, a U.S. filmmaker who has coped with epilepsy his whole life. The film tells the painful truths, misunderstandings and difficulties of living with epilepsy at every turn; from family life to school, to leaving home, and starting a career and forming lasting bonds.
Perhaps most importantly, the film puts faces to the condition, which is meant to inject a better sense of empathy into those listening to the many personal stories unfold.
While Stanislaw was unable to attend the Oct. 23 screening of his film at the Li Ka Shing Knowledge Institute in downtown Toronto, his father, Joe, was on hand.
Joe Stanislaw said the most important aspect of the documentary is that it encourages people to talk about the condition. Being transparent and educating others about epilepsy is a major step in eliminating stigma, he said.
“Transparency makes a difference; it creates understanding. If you don’t have transparency, you don’t have understanding — instead, you have suspicion and you have fear,” he told Voices of Epilepsy, following the screening.
Joe Stanislaw noted that many people living with epilepsy hide their condition from others. The reluctance people with epilepsy have about disclosing their condition is also explored in On the Edge.
In fact, 40 per cent of people interviewed for the documentary shared a story about epilepsy they had never told anyone before, Joe Stanislaw said.
During his address to the audience following the screening, Joe Stanislaw underscored the importance of people sharing their personal stories about epilepsy to others. It was through people’s willingness to discuss the condition openly that made the film possible.
He also commends his son for his strength in making the film to help erase preconceived notions about epilepsy.
“His strength is your strength; you helped him do this.”
Epilepsy Ontario hosted the screening and panel discussion that followed the event.
Writer: Deron Hamel
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