Epilepsy Star: Marc Palmieri
For our March issue, we are excited to feature our Epilepsy Star, Marc Palmieri who is the author of "She Danced with Lightning, My Daughter’s Struggle with Epilepsy and her Boundless Will to Live." This exceptional book was selected as our March 2025 Epilepsy Book Club choice. The book club members had the pleasure of not only reading this fantastic non-fiction novel but will also have the honor of having Marc join us during our meeting on March 21! Marc is an exceptional epilepsy dad who published a book in honor of his daughter a few years back. The book illustrates beautifully the strength Marc’s daughter, Anna, his other daughter, Nora, his wife, Kristen, and Marc exhibited for nearly 12 years as they battled epilepsy yet managed to live and grow despite it all. Please read about Marc who undoubtedly deserves to be the Epilepsy Star of our March 2025 issue!
Tell us a little about yourself.
I'm 54, and I can't believe I'm 54. I live in New York City with my wife Kristen and our two daughters, Anna (18) and Nora (16). I am a university professor, writer, and baseball coach. I love birds and Shakespeare. I hate epilepsy.
How did epilepsy touch your life?
Well, I probably describe it like anyone else who knows about this thing. It broadsided my life. My daughter was five months old and we were playing the parts of young, first-time parents with our beautiful, lively energetic wonder. One day a cluster of dozens of partial-complex seizures struck. From that day on, not a day goes by - not often even a small part of a day - where epilepsy isn't a thought.
What led you to write "She danced with lightning?" When did you write it? What was the experience like to put these events down on paper? Has it been cathartic? What does your family think about it?
I wrote the book from about 2019 to 2021. I had been on the phone with my agent about a play that I had recently had produced in New York. "Did you ever think of writing about Anna's story?" was the question. Oddly, I had not. I had not even engaged this enormous element of my life, our lives, for the decade it had been by that time. I wasn't really sure why. I suppose because I was so engaged with it as a person, feeling like so many feel, with no real control over it, half trying to just wish it away, I never really felt I could sit and capture it the way I'd need to if I were seriously going to write something important. But the question stuck with me. A year or so after Anna's surgery, I had lunch with my agent and we discussed it, and he encouraged me to give it a go. As for the experience of it, I guess being a writer allowed me to think with some reasonably developed habits in terms of the shape of the reading experience - what lines of story and focus would be emphasized. Maybe that helped me keep a safe, professional distance, so to speak. Trying to get everything accurate, researching the long trail of journal entries, doctor notes, hospital records, emails and whatever memories I had was compelling as a a kind of research, even though it was into my own life experience. The desire to come out with something honest and detailed that honored anyone who lives with epilepsy certainly kept me driven, but sometimes, when there was no avoiding very painful memories, it was upsetting too. My family has been extremely supportive, and I think they are every bit as happy that this all worked out the way it did. They mostly have listened to the audiobook version (I had to audition for the role of myself to do the narration, which was funny - but I got the part) and I know some of it is difficult for them. So many positive things have come of the publication, though, that I think we all know it was a very good thing to have done.
Are you invited to speak about epilepsy more as a result of having authored the book?
Yes. I have been very honored to speak at many events. I've been a keynote speaker at major epilepsy awareness groups and network fundraisers, written op-eds, been a guest at medical school or program conferences and classrooms, and I connect with parents and patients, something I am asked to do occasionally by Anna's doctors. I was fortunate in that the book got major press like NPR and major newspapers, etc., which caught many people's attention. I have to say, it is surprising how few major titles are out there with epilepsy as their central focus. There are some, and they are important, but one just not encounter this condition in mainstream storytelling very often, or at least as often as one should. I think about how much creative treatment cancer, HIV, depression, autism, addiction, etc. have gotten, creating moving, memorable characters in books, movies, television, etc. - a profound means of creating awareness, but as we all know, there is something about epilepsy that just becomes so...invisible.
How do you work to raise epilepsy awareness and do you have any upcoming plans?
Aside from the book-related work, I raise awareness by constantly talking about it. I'm a professor and a baseball coach, and so I mix with young people every year - and I talk about it. Of course, individuals approach and tell me that they themselves have epilepsy, or have a dear one in their lives with it. Talking about it, somehow getting it out into the discourse, is the best thing I think I can do on an everyday basis. Recently, our baseball team at Mercy University (where I am a fulltime professor and one of the coaches) held an epilepsy awareness day. Our scoreboard was blazing with the purple ribbon - and it turned our team captain has epilepsy. We will be doing more of that for sure. Wake Forest University, where I played in college, had Anna and I throw out the first pitch at a game they also turned into an Epilepsy Awareness event, and even raised a ton of money for the North Carolina Epilepsy Alliance. Subsequently, they have made this an annual event - as only weeks before that event, we lost a Wake baseball alum, a father to young children, to epilepsy. As for future plans, I plan to say yes to anything awareness advocates ask me to do.
Any last words for parents who have a child living with epilepsy or a person living with epilepsy themselves.
Keep looking for new ideas, technology, medicines, doctors. Tell people. Networks of awareness bring new chances at answers. Find fellowship with people who know what this is like - because many do, and it can feel so alienating so often. Many hospitals have social networks available to people, Take advantage of those; they can make an enormous difference in helping a child have normality. Of course, and this is always easy to say, have hope, and treasure the peaceful moments. And remember, kids are tougher than us. I sure learned that.
