Talking with Marc Palmieri about “She danced with lightning”
From November 2006 to June 2018, Marc Palmieri didn’t get much sleep. The playwright, who grew up in Melville, spent most nights on the hardwood floor next to his daughter Anna’s bed, sleeping lightly at best to find out if she was having an epileptic seizure.
In her new book, “She Danced With Lightning” (Post Hill Press, $18), Palmieri describes — in often excruciating detail — how Anna’s illness ruled every aspect of her family’s life. “We had ended up in the wrong room,” he wrote, “hoping every day that the curtain would fall on it.”
Palmieri, 51, is a former college baseball player who discovered his love of theater when he saw a production of “The Night of the Iguana.” He had television roles in several TV productions and wrote the screenplay for “Telling You” with Jennifer Love Hewitt as well as a trilogy of plays about growing up on Long Island. He is an assistant professor in the Communication Studies program at Mercy College in Dobbs Ferry, New York.
In a phone conversation from his home in Bayside, Palmieri, who will speak at Barnes and Noble in Carle Place on September 16, spoke about living with this medical nightmare and coming out the other side.
WHAT Marc Palmieri will talk about his book “She Danced With Lightning”.
WHEN | WHERE 7 p.m. Sept. 16, Barnes & Noble, 91 Old Country Rd., Carle Place and 2 p.m. Oct. 16, Barnes & Noble, 4000 Jericho Tpke., East Northport
After spending most of the night reading your book, my first question has to be, “How is Anna?”
Anna is doing very well. She continues to dance competitively and she begins her freshman year in high school playing college football. We’re going to 3.5 years without seizures, so it’s a very different existence. It looks like the operation worked. As I say at the end of the book, even after seizure control is established, either through medicine or something more drastic like surgery, you never really know. The brain continues to grow and change, growth spurts occur. But in this case, it’s such a drastic difference, from thousands of seizures to zero.
From the first diagnosis, when she was 5 months old, you and your wife, Kristen, were forced down the rabbit hole of medical bureaucracy. What was the most frustrating?
It was frustrating that each drug only worked best temporarily. The majority of epileptic patients are able to control their seizures with one or two medications. But that other 25%…can’t be completely controlled with medication. … Over the years, Anna mainly took one drug at a time. We would try one, it would work for a while, then seizures would occur and we would start another. We were down to six or seven meds when things got bad.
The decision to have potentially life-saving brain surgery must have been so terrifying.
We never thought about surgery, she lived an ordinary life during the day. The night was very difficult, but in the morning she was ready to go. Making the decision to go ahead with surgery was the ultimate terror. … Anna’s case was very difficult and trying. These few desperate months really forced our hand. We never thought we would get to this point; we had hope that he would go away. There are many cases where epilepsy is only in childhood. Things got so bad that the unthinkable choice really wasn’t a choice at all.
Many of your family arguments revolved around Anna’s love of dancing and her insistence on performing in the recital. Do you still have any regrets about not wanting it to happen – and being rejected by your wife?
I am happy to have learned so much from this conflict. I’m glad I lost, but it felt like an irrational choice. …I was trying to protect her. I just wanted her to survive the operation and told her she would have to wait until next year. She thought she might not be here next year. My wife sided with Anna and she danced. It’s the only day in three months that she hasn’t had a seizure.
When 10-year-old Gregg LaPenna, who also suffered from epilepsy, died during a Little League game at Lido Beach in April, you wrote in an essay that his parents were heroes. Do you feel heroic?
No, not at all, I feel very lucky and grateful. The LaPennas lived the other side of the story. I hoped they could see that he was on the ground, that they were giving him the life he wanted and deserved. There are many heroes in everyone’s life – in this story, the surgeons, our parents, Anna, of course. I never really dared imagine it was something we could fix. And it fixed itself.