Levin says he's grateful to be able to share the film.
PHOTOGRAPHY BY CHRIS PROTOS
Miles Levin admits he never set out to teach the world about the day-to-day challenges of living with epilepsy. Initially, it seemed easier to distance himself from the condition rather than confront it. “Because why would I want to spend another moment thinking about the thing that I like the least about myself?” he says.
Diagnosed at age 4, it took Levin years to better understand the challenges of growing up with epilepsy, a condition that, to him, felt largely invisible to the outside world.
That all changed one summer when Levin, who grew up in Santa Rosa, California, became a counselor at a camp for children with epilepsy. “When a 14-year-old tells you that they’ve never made a friend before, you don’t leave the same,” says Levin.
Years later, he’s sharing what he’s learned about fear and acceptance with an audience that’s far wider than the kids he met that summer.
This year, a Hollywood cast was announced for the feature-length Under the Lights, directed by Levin. He hopes this larger project—and, really, movement—will further push the realities of living with epilepsy into the spotlight. After all, many of the themes in the film—be it fitting in or facing health challenges—are universal.
“As soon as we think about disabilities, suddenly it’s alien and people immediately assume that they have no connection to it.”
“As soon as we think about disabilities, suddenly it’s alien and people immediately assume that they have no connection to it,” says Levin. He doesn’t expect audiences to fully understand life with epilepsy after they’ve watched the film. “You don’t have to live in my shoes,” he says, “but you have felt these feelings and that’s enough.”
The film crew who worked on the original Under the Lights short are continuing to cheer him on in this next phase. In line with the mission, the crew was provided seizure first aid training to carry with them on future sets.
Those involved say that the story resonates far beyond one medical condition.
“One of the things that we love about this story is that yes, it’s about epilepsy, but it’s really a bigger story—it’s about this universal truth of wanting to fit in,” says the film’s producer Natalie Metzger, who continues to collaborate with Levin.
Others shared that it has helped them understand the condition from a more intimate point of view. “I didn’t understand what epilepsy was, until I started working with Miles,” says production supervisor Kelton Arcado.
Production Designer Evan Black also knows how special it is to be a part of this project. “I really hope it just starts a conversation.”
Levin believes representation in the media can start that conversation. And he wants audiences to see a medically accurate portrayal of people living with epilepsy. By showing reality rather than stereotypes, he’s creating a new path to acceptance.
