By Gail McCarthy
---- — A film about the complexities of life with epilepsy will be shown in a free screening of “On the Edge, Living with Epilepsy” to be presented next Tuesday at Rockport’s Shalin Liu Performance Center.
Tom Berger and Andree Robert of Gloucester are hosting the screening of the film by Louis Stanislaw to help spread understanding about this condition.
“Epilepsy, unlike more highly recognized diseases, is a subject that still remains shrouded in ignorance, confusion, fear and sometimes shame,” Berger and Robert wrote in the program notes for the event. “It is in this context that we are thrilled to welcome you inside the private world of epilepsy through Louis Stanislaw, a young filmmaker. From his film we can see, feel and understand what people with epilepsy cope with every single day,”
More than three million people are afflicted with epilepsy in the United States, and the worldwide total is estimated to be 65 million people. More than 50,000 people die each year in America due to seizure related causes.
In this film, people with epilepsy and their families share how the traumatic experiences of epilepsy impact their lives and dreams. The film also includes information from clinical and research specialists.
Stanislaw, who has worked nearly four years to produce this film, has lived with epilepsy since he was 3 years old, when he suffered his first seizure.
“It’s been a challenge,” he said in an interview earlier this week. “It was difficult finding out that there is such a huge stigma. One experience in school changed my entire childhood.”
He recalled that, when he was around 9 years old, he was sitting in class when suddenly everything went black. The next thing he knew was that he was being carried down the stairs to the nurse’s office, and later sent to the hospital.
“When I returned to school the next day, everyone was sort of backing away from me,” he said. “Clearly epilepsy or seizures hadn’t been explained very well to them, and a lot of people called me an ‘alien.’ It was like that for more than six months,” he recalled.
Another challenge for those with epilepsy is the daily uncertainty about when a seizure will strike.
Stanislaw, now 30, went on with his education, attending Oberlin College, and later taking up film studies at the International Film School of Paris. He was born in Paris of American parents, who now reside in Hamilton.
“I opened up about my seizures after going to film school. I decided to make this documentary, not from a medical perspective but from a social perspective to help people be able to talk about it,” he said.
Stanislaw, who lives in Cambridge, said the film has generated interest among viewers. In addition to the Rockport screening, there are others scheduled in the coming months, including at Pingree School, the Gene Siskel Film Center in Chicago, Oberlin College, the Frontier in Maine and the University of Washington Medical School in Seattle.
“It’s very encouraging how much viewers are asking about it. My goal is being accomplished because it is educating people as evidenced in the feedback. It’s been quite an adventure to make this film,” he said.
Berger said this film -- with its moving personal testimony -- is an important step toward removing the stigma around epilepsy.
The event is free, and a reception with the filmmaker will follow the screening. Reservations can be made at the Rockport Music box office at 978-546-7391.
Gail McCarthy can be reached at 978-283-7000, x3445, or at firstname.lastname@example.org.