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.

Each year from 2011 to 2017, Levin had returned to Camp Coelho in Occidental as a counselor, where he helped care for the 40 or so children who would come to play capture the flag, learn tie-dyeing and have all kinds of typical camp fun. He also made a video to raise money for the foundation each year.

The camp often involved guest speakers who would talk about topics such as seizure management and stigma. And Levin noticed something.

“We’d have all these wonderful speakers and people would just continue to eat,” he said “But when the video played, when you told these kids’ stories, the forks dropped and the room went silent.”

Levin had been interested in filmmaking and acting from a young age. As he progressed through his high school years at Sonoma Academy, he worked with his friends to create a number of short films.

After graduating in 2013, Levin attended Santa Rosa Junior College, participating in the school’s Digital Filmmaking Program under instructor Brian Antonson, who was newly arrived.

Antonson said Levin has always been talkative and personable, which are good characteristics for a director to have.

“His biggest strength might be the fact that he gets along well with a lot of people,” Antonson said. “To make a film, you have to involve so many people on the crew and cast side. You have to have a bit of a car salesman streak to you.”

Levin dove into the program. He wanted to learn as much as he could about directing, as well as the technical side of making movies. Caught up in his filmmaking projects, which he was consistently entering into local film festivals, he decided not to finish up the final credits that would have completed his associate degree.

Levin returned to the filmmaking program in 2020, though, so he could apply for Vanishing Angle’s student internship, which is when he got his first chance to work with the company that would later step in to produce the feature-length version of “Under the Lights.”

“Miles very quickly became one of our best interns we’ve ever had,” Metzger said. “He was so on top of everything, had so many great ideas and he was really engaged.”

Levin and his cast and crew had already shot the “Under the Lights” short in 2018, and a hype had grown well before it was released. The Epilepsy Foundation of Northern California and other chapters of the organization around the country had taken notice and were sharing information about the film in development.

People made fan art and sent Levin videos what it meant to them that a story like theirs was going to be shared. This year, at the Untold Stories contest, Levin shared some of those videos with the judges.

Levin had been determined to get the best talent he could for the cast and crew. Pearce Joza and Alyssa Jirrels, who star in the short film, were established actors with roles on popular Disney Channel shows and film roles.

“Their agents didn't want them to do this. They were like, ‘You don’t do short films. You’re a movie star, like, this is silly, right?’” Levin recalled. But Jirrels and Joza, both excited by the project and committed to the mission, signed on nevertheless.

Levin directed “Under the Lights” on a schedule that worked for him, so he could best manage his health. Now, as he and Metzger collaborate on planning for the feature film, that is a top priority again.

The film industry is notorious for grueling hours during production. But Levin and Metzger see an opportunity to push the industry toward greater inclusivity and overall health by keeping a more manageable schedule.

“I think what’s so exciting about working with Miles on this is creating a blueprint of a filmmaking process that is supportive and conducive to a disabled filmmaker and can still be done successfully and economically,” Metzger said.

Sometimes, Levin said, he looks back at the old mindset he had toward speaking publicly about epilepsy and thinks about how much has changed.

“The reason I became a filmmaker was I wanted to put someone in someone else’s shoes, and this ignoring my story, and not telling my story … I’m ignoring the reason I became a filmmaker,” he said. “And I’m also not making what I’ve been through matter.

“If it’s private, and I don’t talk about it, then it’s just a bunch of sad,” he said. “But what I came to realize was that every time I talk about it, it’s useful to someone.”

You can reach Staff Writer Kaylee Tornay at 707-521-5250 or kaylee.tornay@pressdemocrat.com. On Twitter @ka_tornay.