Photographer Combines Portraits With Handwritten Letters to Change the Way We All See Epilepsy
James Smolka was photographing the effects of Hurricane Sandy in Lake Hopatcong, New Jersey, when he first met Scott*, a man whose home was severely damaged during the storm. Scott, pictured below with his wife, asked Smolka, 28, what else he photographed.
Smolka told him about his project, “Falling Sickness,” a series of portraits and letters from people who have epilepsy. He’d been diagnosed with grand mal seizures in the third grade and underwent brain surgery in high school; today, he takes medication to control seizures. He set out to show the faces of epilepsy — how the nervous system disorder doesn’t discriminate against age or sex, how someone you know may live with it without your realizing.
Scott stood shocked — not because of the project, but because Smolka so openly talked about his epilepsy. Scott rarely spoke about his own experience with it. His own diagnosis felt shameful, like something to hide. A lack of control over his own body wasn’t something he wanted people knowing about. Now, he stood before a person who could say, “I’m epileptic” without hesitancy. For a second it made him smile.
“Falling Sickness” has several purposes. For people with epilepsy, the photo series offers comfort — comfort in knowing others feel the same way about the disorder. Comfort in not being alone. It’s a chance for people, like Scott, to talk about their condition without embarrassment.
“There’s nothing wrong with having epilepsy. It’s not fun. It sucks,” Smolka tells The Mighty. “But, there’s nothing we can do. Each day we’re alive, we have something to be thankful for.”
One in 26 Americans will develop epilepsy in their lifetime, according to Citizens United for Research in Epilepsy (CURE). An estimated 3 million Americans and 65 million people worldwide currently live with the disorder.
“I want people to see how common it is,” Smolka says. “Most people just view someone with seizures as someone with problems. An everyday person could be epileptic.”
Below, you can view more photos and notes from people with epilepsy. Visit Smolka’s website for more.
*Scott’s last name is being withheld for privacy.