Santa Rosa man’s award-winning short film ‘Under the Lights’ spreads awareness about epilepsy
There’s a common film sequence that Miles Levin can recite with almost laserlike precision. It starts with a change in the background music. A character in the scene starts convulsing wildly. Others around them leap into action, calling out something about a seizure in strained voices.
This is the portrayal of epilepsy that Levin, born and raised in Santa Rosa, has seen repeated almost universally throughout his life. As a filmmaker who also lives with epilepsy, it has bothered him on both fronts.
“The only time I've seen a seizure in a movie, it's a narrative device to scare people,” Levin said. “It's a possession scene. Or it’s in a hospital show.
“Over time, we have trained people to fear us, because their only point of reference for a seizure is that time they saw it in a show or in a movie,” he continued, adding that many portrayals are far from medically accurate.
Several years ago, Levin, now 27, decided to push back in the most effective way he knew how: by creating a clarifying, contextual film amid a dearth of medically accurate and diverse depictions of people living with epilepsy.
The result was “Under the Lights,” a 10-minute short film Levin wrote and directed, released on March 26, 2020. It tells the story of Sam, a high school student with epilepsy so desperate to experience normal adolescence he sneaks off to prom, even though he knows the lights will cause him to have seizures.
The short film has been a breakout success well beyond the epilepsy community.
The script placed in the top 1% of entries for the prestigious Academy of Motion Picture Arts and Sciences Nicholl Fellowship in September 2021. And this year on June 10, “Under the Lights” received the Fan Favorite Award in the Untold Stories contest at the Tribeca Film Festival in New York.
The honor includes a $50,000 prize, which Levin will use to develop “Under the Lights” into a feature-length film.
“Filmmaking a very isolating process,” he said. “You write alone, edit alone, storyboard alone. Very briefly, you shoot with other people, but largely it’s pretty isolating. So, to feel like so many people believe in me is a pretty beautiful thing.”
Levin is working with Altadena-based production company Vanishing Angle to develop the film. It is, he said, a dream realized.
“My dream producer and dream production company is making this movie,” Levin said.
Producer Natalie Metzger, vice president of development and production with Vanishing Angle, said “Under the Lights” got a lot of attention at the film festival and has galvanized the industry.
“There’s so much interest now in the project,” she said. ‘We’re now in the process of meeting different financiers and getting it up and running.”
Levin and Vanishing Angle are working, with signal-boosting support from epilepsy advocacy organizations, to raise additional funds to support the feature production of “Under the Lights.”
They’re looking to raise $1 million, Levin said.
“People have said, ‘Don’t tell an epilepsy story. It's not sexy … it’s not universal.’ And I fundamentally disagree,” he said. “Underneath that title is a wealth of things that everyone has felt. Everyone knows what it’s like to feel doubt. Everyone has felt lonely. Everyone has felt shame. Everyone has watched someone else do the thing that you want to do, and watched them take it for granted.”
Despite its limited portrayals in popular media, epilepsy is not an uncommon disease. One in 26 people in the United States will be diagnosed during their lifetime and, as of 2015, 3.4 million people were living with the disease in this country.
Levin was diagnosed when he was 4. His epilepsy is considered drug-resistant, and he continues to deal with seizures.
He wants more people to understand, though, that those scenes in the TV shows and movies only tell a tiny fraction of the experience of managing epilepsy.
“In the story of epilepsy, seizures are the punctuation,” he said. “The rest is the time in between … it’s the 99% of the time that you’re not having a seizure that you live with epilepsy.”
When he was a teenager, watching his friends go on to get their driver’s licenses and head off to four-year colleges, Levin felt like his epilepsy was swallowing his future. He never wanted to talk about it or identify publicly with it then, he said.
But Levin wasn’t alone, having formed connections with others with epilepsy through the Epilepsy Foundation of Northern California. He now sits on its board of directors.