Sometimes the desire to fit in is so overwhelming that even engaging in reckless behavior doesn’t override the quest to feel normal.
In the new feature film “Under the Lights,” Sam (Pearce Joza of Disney’s “Zombies” franchise) has epilepsy and is willing to risk the strobing lights that bring on his seizures, just so he can attend his high school prom.
One in 26 people develops epilepsy in their lifetime, and for most, the disease itself isn’t nearly as bad as the stigma attached to it. In fact, many people who have been diagnosed don’t discuss it, fearing it will cost them a job or make others around them anxious and uncomfortable.
Well-known folks like Elton John, Melanie Griffith, Danny Glover, Chief Justice John Roberts and even Socrates have all been afflicted with this neurological disorder, which produces petit mal (small) and grand mal (large) seizures.
“Under the Lights” was originally a short film by writer and director Miles Levin, who knows firsthand what it’s like to experience seizures. He wanted to tell this story from the human perspective of living with something that has the potential to ostracize you from others, not as a dry documentary littered with statistics.
His driving force behind making both the short- and the full-length feature was the same — informing and educating people, while entertaining them.
“I never wanted to get on a soapbox about epilepsy, nor did I want to be a voice for it, until I began to work at a camp for kids who had seizures,” Levin explained. “It really floored me to meet kids who were ultimately just like me, but they never made friends, weren’t treated with the basic kindnesses, not just by kids, but by teachers and adults. They thought they had this super-rare condition, when of course, it’s extraordinarily common, just not talked about.”
But, as Levin understood, most of the things that affect those with seizure disorders are not medical, but rather social, which ultimately can damage their health, as any stressful situation would. He believed this could be solved immediately if we stopped using the wrong tools. He realized that while many of the misconceptions created by cinema and television had caused a lot of damage, it could also be reversed with good storytelling.
The short film, which he completed years ago, has become somewhat of a cult classic amongst the disability community, but Levin wanted to reach a broader audience. With a campaign on Seed & Spark (a crowdfunding website for filmmakers), he raised money to put a feature film together and hire well-known actors, to boot, making the film both engaging and compelling.
The story of Sam, his protective mother (Lake Bell of “In A World”), and his friend (Tanzyn Crawford of “Tiny Beautiful Things”) whose mother (Marin Hinkle of “The Marvelous Mrs. Maisel”) has mental health issues, is all interwoven around Sam’s desire to be a normal kid who can drive, swim and go to prom.
“All of the actors in this film have some connection or other, not always to epilepsy, but to something that’s in line with the theme of the film, which is that you may not share these unique conditions, but ultimately the feelings behind them are universal,” Levin said.
Levin is taking the film around the country, buoyed by organizations that advocate for those with epilepsy. In the case of New Orleans, he reached out to Terri Pajares, president of Epilepsy Awareness of America and a survivor of the disorder.
Pajares was originally on medications to stop her seizures, but they stopped working, leaving her with only one option to regain her independence — surgery. Ultimately, it would take two surgeries on both sides of her brain and one corrective surgery. Since then, she’s only had two seizures.
“And I think my doctors and I have figured out the triggers, which are over-exertion and heat,” recalled Pajares. “It started to become evident that on the Friday nights when I would have a Zumba class, I would come home and have a seizure. Triggers can be different for different people, but that’s apparently mine.”
When it comes to the film, don’t expect to find a preachy movie that plays like a serious documentary. This is pure drama, with all the twists and turns of a feature. Other recognizable stars in the film are Mark Duplass (“The Morning Show”), Nick Offerman (“The Last of Us”) and Randall Park (“Fresh Off the Boat”).
Epilepsy Awareness of America is presenting the theatrical event at 6 p.m. June 18 and will screen “Under the Lights” at the AMC Clearview Palace, 4486 Veterans Memorial Blvd. Tickets are available at Eventbrite.com.
There is also a screening in Baton Rouge at the Perkins Rowe Cinemark Theater at 6 p.m. Tuesday, June 16.
Email Leslie Cardé at [email protected].
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