TORONTO – In the documentary On the Edge: Living with Epilepsy, Bill Maier shares his story about having a seizure at school and then being reprimanded by his teacher for his “behaviour.” For people who have the neurological condition and those working for epilepsy support agencies, Maier’s story is a common theme.
During a panel discussion following the Oct. 23 Canadian premiere of the documentary, Epilepsy Ontario epilepsy information specialist Suzanne Nurse said Maier’s story is typical of the anecdotes she hears from people affected by seizure disorders.
“The themes that were highlighted in the film are exactly the same circumstances that we hear at Epilepsy Ontario when we speak with people who have epilepsy,” she said.
“There was a lot of emotion in his description of what his experiences were like, and we hear that same sort of story from a lot of people that we speak to; there was a lot of pain there.”
Fear of epilepsy and fear of those who are living with the condition is a root cause of negative stigmas people with seizure disorders face, Nurse said. However, she offers a solution to overcoming fear: education.
And On the Edge is precisely the type of tool that can be used to educate people about epilepsy, Nurse said. Because the film delves into people’s personal experiences with seizure disorders in a heartfelt way, those watching the film garner a strong sense of empathy for the people interviewed.
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.
Another panelist, Dr. Elizabeth Donner, a neurologist at Toronto’s Hospital for Sick Children, agrees that educating people about epilepsy is crucial to eliminating stigmas. For her, listening to people’s experiences in the film was a reminder of how much work there is to be done.
“I know there are a lot of people trying to reduce the stigma of epilepsy, but then when I watch the film I see that we may not be making the impact that we need to make with regards to (eliminating) stigma,” she said.
For people who are affected by epilepsy, the film sends the message that there is a large community of people dealing with the same issues as themselves — and that’s a good thing, says Epilepsy Ontario executive director Rozalyn Werner-Arcé.
“By knowing that there is a community of people with epilepsy out there, and that support is available through local epilepsy agencies, it helps build strength and resilience for those facing difficult challenges and isolation,” she said. “(The film will also help) bring voices together around advocacy and break down stigma.”
Writer: Deron Hamel
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