For former Wake Forest pitcher Marc Palmieri, team's epilepsy awareness effort is personal

Wake Forest University’s baseball team is ranked number one after a series against Boston College. But the team is doing more than just winning games. They’re raising awareness for epilepsy.

Over the weekend players donned lavender jerseys for the effort. Earlier this year they invited Marc Palmieri to throw out the first pitch. Palmieri had a stellar career as a pitcher for the Deacons, but while here discovered a passion for the arts. He’s now an actor, playwright, and author. His latest work, “She Danced with Lightning: My Daughter’s Struggle with Epilepsy and Her Boundless Will to Live,” chronicles the life of his daughter, Anna, who began having seizures as an infant. Wake Forest University student Braden Bock interviewed the author for WFDD. 

Palmieri begins with a description of Anna's condition:

"I think I was 29 or 30. I got married about four years, five years later, we had our first child, my daughter, Anna. A perfectly healthy, natural birth. Lively, happy kid. And when she was about five months old, she went into what we would call a cluster, meaning multiple seizures, that lasted about 30 seconds to two a minute ... She had about 25 to 30, initially. So it was really terrifying.

"She was diagnosed with epilepsy and put on medication. But of course, when your child, your baby is diagnosed with this, and in this case, it was a pretty deadly condition, because she was vulnerable to having these clusters. And that can be very dangerous, [that could] lead to cardiac arrest, that could lead to damage to the brain, etc. So it was really super important that we get this right. And that was a decade of dealing with medications that didn't work, dealing with side effects of medications, dealing with seizures almost every night. She had, you know, thousands of these short seizures. And they didn't feel short, they were half a minute or longer. But we've tried medical marijuana, we tried medicine after medicine. I think we were up to six or seven medications. When things took a turn for the worse, her seizures kind of changed, her seizure patterns changed from being only nocturnal to seizures during the day, just you know, interrupting her life. And they were getting worse, they were getting more violent and longer ... She went from taking one medication to two at a time, to three at a time. And nothing was working. And so finally, a team of doctors got it one hundred percent right. And they saw that, you know, if she didn't have brain surgery, this probably wouldn't ever get better ... So our hand was kind of forced when she was 11. She had a pretty radical brain surgery. It removed the lesion that was causing seizures, and it was a craniotomy. They had to remove a large part of her skull for the operation. And it was successful."

On how Anna is doing now:

"She's 16. She's a junior. Hasn't had a seizure in four years and just loved the whole experience coming back down to beautiful Winston and getting to throw that pitch ... Couldn't have been a better launch to a beautiful spring."

On what Wake Forest's baseball team's epilepsy awareness efforts mean to him:

"I think awareness campaigns for so many challenges have brought so much hope and progress. When we talk about awareness, a lot of times we're talking about a person's relationship to living a full life. Just like my daughter was insisting on. The 'invisible disability.' It's often referred to that because, well, for a lot of times, you know of someone with epilepsy for a large portion of their everyday life, it is invisible. People may not know that this could happen, you know, that a seizure could strike. And people tend to be mystified and even frightened by epilepsy. It can be a pretty spectacular and theatrical event to see a seizure. You know, it's just a setting it looks like a heart attack. And so even though this thing has been documented for thousands of years, it still tends not to be sort of a mainstream discussion. I can't think of a movie or a television character, a novel that has brought epilepsy into the mainstream conversation."