JUNE 2023: Featured Artist
Author Discusses Family's Harrowing Experience
with Daughter's Life-Threatening Illness
Author, Playwright & Screenwriter
Marc Palmieri
Marc Palmieri
Photo Credit: John Painz |
Marc Palmieri’s memoir, She Danced with Lightning, about life with his daughter’s journey with epilepsy, was recently published by Post Hill Press. His plays have been produced across the country and internationally, are all published by Dramatists Play Service, and include The New York Times’ “Critic’s Pick” Levittown as well as The Groundling, Carl the Second, and Waiting for the Host. He has published prose in Fiction, The Global City Review and (Re) An Ideas Journal. Screenplays include Miramax Films’ Telling You. Marc has also acted in many Off-Broadway plays, national television commercials, and played the lead role in the Spirit-Award nominated feature film, Too Much Sleep. Marc is an assistant professor in the School of Liberal Arts at Mercy College in Dobbs Ferry, New York, where he is the recipient of the 2023 Outstanding Research Award as well as the 2022 Faculty Innovation Award. He has been a guest faculty member for The City College of New York’s MFA program in creative writing since 2010. He played baseball for Wake Forest University, where he graduated in 1993 as the 2nd all-time winning pitcher in program history. Marc was drafted by The Toronto Blue Jays, and still gets to coach high schoolers. |
Myrna Beth Haskell, executive editor, asked Marc about navigating the trials and tribulations of raising a child with a life-threatening illness and his thoughts on writing for the stage and screen.
In your book She Danced with Lightning, you chronicle your daughter’s struggles with severe epilepsy, conflicting diagnoses, and ever-changing medications. How did Anna’s long-term illness affect the family dynamic? Your marriage?
In your book She Danced with Lightning, you chronicle your daughter’s struggles with severe epilepsy, conflicting diagnoses, and ever-changing medications. How did Anna’s long-term illness affect the family dynamic? Your marriage?
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Kristen and I were married for four years before we had our first child, Anna. There’s no doubt that new parents find that their priorities, routines, and general sense of self changes radically with this awesome new responsibility, and we were no different. We only had five months of this new and amazing phase of our lives before Anna’s diagnosis. So, in many ways, aspects of our marriage and family (we had Nora two years later) were formed by living with epilepsy.
There was constant worry about her safety, both in the immediate and long-term - and of course, the sadness. Our situation came with lifestyle adjustments that we knew were relatively unique. For instance, for those ten years of Anna’s epilepsy, one of us, if not both of us, had to be within arm's reach of her as she slept. We had to navigate the medication trials, failures, weanings and introductions. Then, there were the many hospital stays, blood tests, wrangling over school accommodations, etc. I have to say, however, that in writing this book, this ‘looking back’ at it all, that I'm learning the answer. Now that we are a few years 'after' what seemed like the worst, the impact it had on all of us is becoming steadily clearer, and in ways, more meaningful. |
Find an excerpt from Marc's memoir by clicking the book cover.
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How important is it to try to keep things as normal as possible? Did you and your wife struggle with allowing your daughter Anna to continue dancing and doing other things she loved, even though you worried about her having a life-threatening seizure?
We were told very early – pretty much upon first diagnosis – that pushing a patient with epilepsy to live as ‘normally’ as possible would be essential. By the time Anna was three or so, we did have a quirk of a blessing in that her seizures were primarily nocturnal. This meant that by day, while commonly exhausted from the seizures and the heavy meds, Anna was able to do the things a child wants to do, should do, can do. As I write in the book, it was strange to hate this condition yet hope it didn’t change, because we were aware that it could, and the seizures might begin to attack her during her waking hours. That is eventually what happened, and the spiral was fast and furious. It was at that point, in those couple of months before the surgery, that I insisted she shut her dancing down. She could barely walk straight at that point – but alas, she insisted.
How did you prepare her for the life-saving surgery?
We were told very early – pretty much upon first diagnosis – that pushing a patient with epilepsy to live as ‘normally’ as possible would be essential. By the time Anna was three or so, we did have a quirk of a blessing in that her seizures were primarily nocturnal. This meant that by day, while commonly exhausted from the seizures and the heavy meds, Anna was able to do the things a child wants to do, should do, can do. As I write in the book, it was strange to hate this condition yet hope it didn’t change, because we were aware that it could, and the seizures might begin to attack her during her waking hours. That is eventually what happened, and the spiral was fast and furious. It was at that point, in those couple of months before the surgery, that I insisted she shut her dancing down. She could barely walk straight at that point – but alas, she insisted.
How did you prepare her for the life-saving surgery?
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Physically, there were many tests, scans and appointments, all within just a few weeks, to prepare Anna for the operation. In the moment, because her condition was worsening every day, it was constant vigilance – making sure she didn’t fall and injure her head and ensuring that the six or so medications she was on were delivered on time and in correct measure.
How we prepared mentally and emotionally, I suppose, is what the book is mostly about and much of what I’ve now had some time to reflect on. It was one of those stretches of life where one finds oneself totally unprepared, sees no way to be prepared, but somehow gets through because of necessity. |
"How we prepared mentally and emotionally, I suppose, is what the book is mostly about and much of what I’ve now had some time to reflect on. It was one of those stretches of life where one finds oneself totally unprepared, sees no way to be prepared, but somehow gets through because of necessity." ~ Marc Palmieri |
Did you learn anything from your daughter in terms of how she handled her illness?
I learned a great deal. Most of all, as a person with the unearned privilege of perfect health, I had no business deciding for her what was enough in life, what she could do or not do, what she should wait for, or not. Her insistence on life at its fullest in the face of enormous challenge taught me never to think I can truly understand another person’s battles, another person’s obstacles. It was humbling, to say the least.
How difficult was it to write this book and relive everything you went through? Was it cathartic in any way?
I needed to fit a decade of experience, plus details of my own background, into 265 or so pages, which takes some crafting and shaping. Plays are limited in length (an audience can’t sit there forever); so, as a playwright, I naturally think in terms of beginning-middle-end as a general habit. I also have a terrific literary agent whom I was able to bounce drafts and ideas off of. So artistically, I felt I had a good plan.
Personally, it was difficult. It was difficult to relive certain moments, what was said, what was seen, and revisiting that terrifying state we were in. I suppose that doing my best to get all the details right helped me through. Discharge papers, private journal writing, and countless email records helped with that responsibility.
The catharsis is there, for sure. I’m delighted you used this word because it’s the word Aristotle used to describe the whole purpose of an audience seeing a play. I make that connection in the book – how my own journey through this was not unlike that of some of those ancient characters who move from not knowing something to realizing something was true all along about themselves.
How is Anna today?
Anna is doing well! She is a junior in high school, has lots of friends she loves, plays three sports and…yikes…is looking at colleges. She also does some acting, and last fall shot a principal role in a movie with some recognizable Hollywood faces. She continues to dance competitively – primarily hip hop.
I learned a great deal. Most of all, as a person with the unearned privilege of perfect health, I had no business deciding for her what was enough in life, what she could do or not do, what she should wait for, or not. Her insistence on life at its fullest in the face of enormous challenge taught me never to think I can truly understand another person’s battles, another person’s obstacles. It was humbling, to say the least.
How difficult was it to write this book and relive everything you went through? Was it cathartic in any way?
I needed to fit a decade of experience, plus details of my own background, into 265 or so pages, which takes some crafting and shaping. Plays are limited in length (an audience can’t sit there forever); so, as a playwright, I naturally think in terms of beginning-middle-end as a general habit. I also have a terrific literary agent whom I was able to bounce drafts and ideas off of. So artistically, I felt I had a good plan.
Personally, it was difficult. It was difficult to relive certain moments, what was said, what was seen, and revisiting that terrifying state we were in. I suppose that doing my best to get all the details right helped me through. Discharge papers, private journal writing, and countless email records helped with that responsibility.
The catharsis is there, for sure. I’m delighted you used this word because it’s the word Aristotle used to describe the whole purpose of an audience seeing a play. I make that connection in the book – how my own journey through this was not unlike that of some of those ancient characters who move from not knowing something to realizing something was true all along about themselves.
How is Anna today?
Anna is doing well! She is a junior in high school, has lots of friends she loves, plays three sports and…yikes…is looking at colleges. She also does some acting, and last fall shot a principal role in a movie with some recognizable Hollywood faces. She continues to dance competitively – primarily hip hop.
What does she think of the book?
She listened to the audio version of the book soon after the release and told me it was hard at times to hear, particularly because it’s me doing the narration (a job I had to audition for, by the way!) She is proud and glad it’s out there. She has been part of some of the appearances, panels, etc. that I’ve been invited to do with medical schools and epilepsy awareness organizations.
Do you have one piece of advice you’d like to share with other parents who are experiencing extreme stress and exhaustion due to a child’s life-threatening illness?
I hope that they reach out and communicate to their loved ones as well as seek the fellowship that is available in support groups, even if it’s just through social media. The isolation that can come with this kind of thing is very real and can creepingly and steadily change someone for the worse. No matter how brutal things can seem, having people who can relate to your situation firsthand can make an enormous difference – and that difference could lead to the energy and motivation to find more answers, to say nothing of helping to keep the parents from despair.
You’ve written for both the stage and the screen. Which do you prefer and why?
Amazing question! And it’s one I’ve been really thinking about lately, since I have now officially done both. But I can’t really choose. I’m so fortunate to continue to see all my plays get done at different levels. There is something I will always love about the togetherness of an audience experience and the connection between playwright and artistic team – whether the writer is present or not. On the other hand, there is a direct, full immersion of oneself in writing a book (at least for me – this is a first-person narrated memoir). I felt an intense intimacy communicating to readers. In some ways, I was freed by knowing that their experience would be their own private journey.
I can continue with a very lengthy response to this, so I’ll sum it up for you: I love both, and I am very fortunate to have had people believe that my stories, plays, short stories, and this book are worth publishing and producing.
Please tell us your thoughts about this quote by Paula Vogel, Pulitzer Prize-winning Playwright: “If I wanted everything to be exactly as it was in my head, exactly word for word, I should be writing novels. The play doesn’t belong to the playwright.”
She listened to the audio version of the book soon after the release and told me it was hard at times to hear, particularly because it’s me doing the narration (a job I had to audition for, by the way!) She is proud and glad it’s out there. She has been part of some of the appearances, panels, etc. that I’ve been invited to do with medical schools and epilepsy awareness organizations.
Do you have one piece of advice you’d like to share with other parents who are experiencing extreme stress and exhaustion due to a child’s life-threatening illness?
I hope that they reach out and communicate to their loved ones as well as seek the fellowship that is available in support groups, even if it’s just through social media. The isolation that can come with this kind of thing is very real and can creepingly and steadily change someone for the worse. No matter how brutal things can seem, having people who can relate to your situation firsthand can make an enormous difference – and that difference could lead to the energy and motivation to find more answers, to say nothing of helping to keep the parents from despair.
You’ve written for both the stage and the screen. Which do you prefer and why?
Amazing question! And it’s one I’ve been really thinking about lately, since I have now officially done both. But I can’t really choose. I’m so fortunate to continue to see all my plays get done at different levels. There is something I will always love about the togetherness of an audience experience and the connection between playwright and artistic team – whether the writer is present or not. On the other hand, there is a direct, full immersion of oneself in writing a book (at least for me – this is a first-person narrated memoir). I felt an intense intimacy communicating to readers. In some ways, I was freed by knowing that their experience would be their own private journey.
I can continue with a very lengthy response to this, so I’ll sum it up for you: I love both, and I am very fortunate to have had people believe that my stories, plays, short stories, and this book are worth publishing and producing.
Please tell us your thoughts about this quote by Paula Vogel, Pulitzer Prize-winning Playwright: “If I wanted everything to be exactly as it was in my head, exactly word for word, I should be writing novels. The play doesn’t belong to the playwright.”
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"Theatre is a collaborative art form. It starts with the playwright, who is merely blueprinting an ephemeral experience to be delivered by a team of human beings who will all bring their own humanity, creativity and skill to the final 'product.'" ~ Marc Palmieri |
I love this quote. Since I teach many theatre-related courses at the college, both undergraduate and graduate levels, I find myself referring to what I believe Paula is talking about here.
Theatre is a collaborative art form. It starts with the playwright, who is merely blueprinting an ephemeral experience to be delivered by a team of human beings who will all bring their own humanity, creativity and skill to the final 'product.' The director, the designers, and, of course, the actors are who the playwright is presenting the play to – the ones who bring it to life. Paula likely feels the way I do about such artists, which is that I feel honored anytime they are investing themselves in roles for a story I have imagined and plotted on the page. |
Anything new on the horizon that you’d like to share with our readers?
I wrote a play about baseball! (I was once drafted by the Toronto Blue Jays, played in college and, since then, coached teenagers). I love the play, but after this experience with the memoir, I’m toying with the concept of telling the story in novel form.
For now, though, I’m wrapping up nine months of many trips for appearances, signings, festivals, and most importantly, events with epilepsy awareness groups.
I wrote a play about baseball! (I was once drafted by the Toronto Blue Jays, played in college and, since then, coached teenagers). I love the play, but after this experience with the memoir, I’m toying with the concept of telling the story in novel form.
For now, though, I’m wrapping up nine months of many trips for appearances, signings, festivals, and most importantly, events with epilepsy awareness groups.
