The creators of a 3-½-minute YouTube video filmed during Epilepsy Ontario’s screening of a documentary about seizure disorders were so taken by people’s stories about living with epilepsy that they’ve volunteered to take on another project centred on one of the people who spoke at the event.
Editorial director Todd Phillips says he and his crew from Universus Media Group Inc. were touched by 17-year-old Lia Turner’s story about living with a seizure disorder and how she has not let her condition dictate her life.
Lia and her mother Tina were panelists in a discussion that followed the Oct. 23 screening of On the Edge: Living with Epilepsy. During the discussion, Lia explained how she has never allowed her condition to prevent her from her passion — riding horses — or from pursuing her educational aspirations (she’s planning to attend university in Ottawa when she completes high school next year).
“(Lia) is not afraid to share her experiences in a very personal way,” Phillips tells Voices of Epilepsy, adding Lia’s personality was endearing to the filmmakers.
“We found her very courageous and very mature.”
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.
Phillips says the experience of watching the documentary, listening to the panel discussion, and interviewing those living with epilepsy and experts following the event opened the filmmakers’ eyes to the realities of epilepsy — and gave them ideas about what they could do to help.
“Both myself and the members of my team were really enlightened by what we saw; both in the film and in the panel discussion, and certainly in the interviews we did with the participants after,” Phillips says, adding the prejudice people with epilepsy face was “eye-opening” for the crew.
“What we saw was a lot of people striving to lead ordinary lives and to not be bound by the limitations of what other people may put on them,” Phillips says.
“It was eye-opening to hear just how many people live with the fear that the prejudice and the stigma that’s out there with this particular disease is something that drives them to want to remain silent.”
By making a video focused on Lia and how she lives with a seizure disorder, Phillips says he hopes viewers will have the same experience he and his crew had by hearing her story and that a ripple effect of awareness of epilepsy will transpire.
“Because this is such a personal story, we really want to have people meet Lia and get to know her,” Phillips says. “She really has a very elegant and honest approach to (discussing her condition); she’s very likeable and she’s charismatic and we’re really hoping that that will radiate through.”
The YouTube video includes highlights from the event and interviews with people affected by epilepsy and their families. Click here to watch.
Writer: Deron Hamel
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