November: Thanksgiving and National Epilepsy Awareness Month. A great time to express gratitude to the artists breaking glass ceilings around epilepsy stigmas.
First some history. Many famous artists have had epilepsy. Acclaimed American poet Emily Dickinson was a recluse, refusing to leave her father’s house. Dickinson had a passionate romance with a widower who wanted to marry her, but she turned him down, regarding herself as unfit for marriage. This was during a time when it was illegal for people with epilepsy to get married in many states. Dickinson never openly admitted to the diagnosis, but historians speculate that she’s alluded to it. In her poem, My first well Day, she writes My loss, by sickness—Was it Loss? Or that Ethereal Gain One earns by measuring the Grave—Then measuring the Sun. Dickinson’s biographer, Lyndall Gordon speculates that “She’s being ambivalent and truthful about what she calls her sickness because she both suffers [and] she feels a certain kind of death, but at the same time, there are spiritual gains…
Other famous nineteenth century artists thought to have epilepsy include painter Vincent Van Gogh, pianist/composer George Gershwin, and writer Edgar Allen Poe, who were alive during a time when there was far less known about epilepsy. People were so uncomfortable by its mystery that patients who had severe seizures were often confined to asylums. So, it’s understandable that these artists tried to hide their condition.
In more recent times, although society doesn’t forcibly institutionalize those with epilepsy, the condition still wasn’t something famous people readily disclose about themselves. The musician Prince was diagnosed at age nine, but didn’t speak publicly about his epilepsy until he was fifty. “I used to have seizures when I was young and my mother and father didn’t know what to do and how to handle it, but they did the best they could with what little they had,” he said in a 2009 interview, where he noted his epilepsy helped shape his over-the-top persona.
Rapper Lil Wayne had his first seizures as a child but wasn’t diagnosed until he was in his twenties and didn’t speak publicly about it until he was thirty years old. In 2012, he had several seizures in a short time span. Initially, his publicists tried to hide his epilepsy, claiming that he was treated for “a severe migraine and dehydration.” But when multiple seizures required hospitalization, he could no longer hide his condition. In a November 2012 interview with MTV, Lil Wayne revealed that he was taking seizure medication, on doctors’ orders
Fast forward to November 2024, it’s National Epilepsy Awareness Month, a perfect time to showcase some current day artists who are not only open about epilepsy but use it to create art.
Denver-based author Sue Seserman was diagnosed with adult-onset epilepsy in 2013, a condition she described as “scary.” One thing that helped her get past her fears was the creation of Seserman’s Epilectra graphic novel superhero series. Heroine, Epilectra has epilepsy and a newfound superpower: The ability to channel her seizure-triggering brain electricity through her fingertips, where it’s transformed into lightning. Epilectra uses that lightning energy to accomplish heroic acts, like metamorphosing her electrified fingers into a defibrillator when her principal suffers a heart attack. Ms. Seserman says Epilectra’s two big missions are disability empowerment and stigma elimination.
Film director Miles Levin received the Polish Film Institute Award at the American Film Festival’s industry event, U.S. in Progress for his short film Under the Lights. Mr. Levin has had drug-resistant epilepsy since he was four years-old. He created this 11-minute short about Sam, a boy with photosensitive epilepsy who was afraid to go to his high school prom, because he feared the lighting might trigger seizures. Sam refuses to be defined by his epilepsy and goes to the prom, despite his overprotective mother’s protests. Mr. Levin’s short film provides viewers with an accurate image of people with epilepsy that instills empathy and increases knowledge. Mr. Levin believes cinema is a great medium for this, as audience members are simultaneously getting educated and entertained. The full-length version of Under the Lights will be released in 2025.
Award-winning music composer and songwriter, Ben Decter’s daughter, Addie had severe seizures as an infant and toddler. Her seizures were so difficult to control that in 1998 Mr. Decter drove from Southern California to Tiajuana, Mexico to find an antiseizure medication, then unavailable in the U.S. At age four, Addie was diagnosed with Lennox-Gastaut syndrome, a severe form of epilepsy that causes seizures, developmental delays, and behavioral problems. Initially Mr. Decter was so angry and grief-stricken about Addie’s condition he couldn’t talk about it. Decter took solace in songwriting, composing piano songs about Addie’s condition, and its impact on the whole family, some of them from his children’s point of view. In 2007, he partnered with director Kristin Hanggi, and they used his songs to create a musical, “It’s All Your Fault, Tyler Price!” Released earlier this month, the play tells the story about Addie’s condition and its impact on her family members. Interweaving facts about epilepsy into songs, the play uses music and humor to tell a sometimes painful but hopeful story, while giving the audience an empathetic view of epilepsy.
“This [show] really bloomed into advocating for… destigmatization of what epilepsy is,” said Addie Decter. “I hope that anyone who sees this, whether they have seizures, are seizure-free, or know somebody who has seizures, feels seen and knows that they’re not alone.” Now 28 years old, Addie is seizure-free. She works as an instructor for a ranch that offers therapeutic animal care-taking programs for youth of all abilities and circumstances.
In addition to National Epilepsy Awareness Month, November 2024 is also the first anniversary of my memoir release, Seizing Control. I am proud to include myself in this cohort of artists who use our creative talents to elevate epilepsy awareness. Thanksgiving gratitude to all Epilepsy Warriors, including the Epilepsy Awareness Month organizers who keep epilepsy on the radar. In part thanks to them, we can use our artistic abilities to creatively highlight epilepsy’s challenges, rather than hiding it or writing between the lines, like Emily Dickinson.
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