With a new book, this dad wants to normalize epilepsy and honor his daughter's fierce will to live
With more than two decades of experience in the entertainment industry, Marc Palmieri has made his mark as a playwright, screenwriter, and actor.
Some of his works have been staged in major theaters across the U.S. and Europe, but now he is sharing a real-life drama involving his daughter, Anna.
For the first 12 years of her life, Anna suffered from epileptic seizures that became increasingly severe. At first, they only happened during the night. Marc or his wife, Kristen, kept vigil at Anna's bedside to make sure she didn't fall and hurt herself during the sometimes violent episodes.
They were also terrified about the rare but horrifying possibility of SUDEP, or sudden unexplained death of epilepsy.
"That mostly happens during sleep, so we were really half-awake for a decade,” he said.
Palmieri wrote a memoir about their story called "She Danced With Lightning: My Daughter's Struggle with Epilepsy and Her Boundless Will to Live."
He did this, in part, to raise awareness, saying while epilepsy has been documented for thousands of years, it remains invisible to many.
"You know, I can't name, really, one major film, major novel, major television character that features someone with epilepsy, that really brings it into the mainstream awareness or conversation like we have with autism, like we have with addiction, like we have with even diabetes,” Palmieri said.
Having a seizure in public can be traumatic both for the person experiencing it and for those who witness it.
And there is a stigma. Awareness, to Palmieri, means epilepsy would be normalized so people with the diagnosis would not be afraid that people will find them strange or scary.
“Or not know what to do for them,” he added.
He had a revelation during one of the most challenging times of Anna's life, when she was 12 years old and her seizures became much more frequent and severe.
All of the many medications she was taking had stopped working. Doctors said brain surgery was probably her only hope. About a week before the scheduled surgery, Anna was determined to perform in a dance recital she had been practicing for.
Her father was insistent that it was too dangerous. A lifelong baseball player, he explained to her that he hurt his shoulder one season and had to sit out for a lot of it. But it enabled him to heal and come back to the game he loves.
"And she said to me, 'Well, it wasn't epilepsy. You knew you'd be back. I don't know if I'll be alive next recital.'"
As devastating as it was to hear that, Palmieri still refused to allow Anna perform with her competitive dance company. But his wife overruled him. Anna went on the stage that day and performed flawlessly.
Through 10 to 12 dances, she remained seizure-free for the first time in 70 days.
"And that was the moment I realized I had no business, as a person with the privilege of perfect health, to know what was sufficient for Anna,” Palmieri said. “That's something I can't really ever understand — that desire and that absolute will to live and to live fully."
Anna went on to have the surgery, which removed a lesion from her brain, and she has not had a seizure in nearly four years. She is now a three-sport high school varsity athlete.
Marc Palmieri will be in Rochester next week to speak at a fundraising event for the nonprofit Empowering People's Independence, which provides personalized care, education, training, advocacy, and support solutions for people with developmental disabilities, epilepsy, and brain injury.
EPI's annual Chocolate Ball is April 29 at the Hyatt Regency in downtown Rochester.