She Danced with Lightning: My Daughter's Struggle with Epilepsy and Her Boundless Will to Live

by Marc Palmieri

Part family memoir, part medical mystery involving severe epilepsy, She Danced with Lightning follows one girl’s battle to persevere as a competitive dancer, culminating in a terrifying decline, a courageous performance, and an eleventh hour, life-saving brain surgery.

Eleven-year-old Anna has lived all her life with severe epilepsy. Despite the ravage of thousands of violent seizures and heavy medications, she has thrived at school, athletics, and her greatest passion—dance. As she approaches her twelfth birthday, Anna’s condition takes a dire turn. Her health declines quickly and a new diagnosis is revealed, leaving the family only one excruciating choice. A parent’s memoir about the medical mysteries of epilepsy and the personal suffering of raising a child with a deadly health condition, She Danced with Lightning is told from the perspective of Anna’s dream-chasing father, who comes to learn from her a strength and courage he never imagined possible.

Genres: Nonfiction

272 pages, Paperback

Published August 9, 2022

Reviews

[Andrew Brown · Rating 3 out of 5]

Epilepsy can be a somewhat lonely diagnosis, so I appreciated hearing someone else's story. I have my critiques of the book but they aren't worth airing.

[Elena Rose (The Bookish Queen) · Rating 5 out of 5]

This is probably the best memoir I've read all year.

Telling the real-life story of his oldest daughter, Ana, who had been diagnosed with a severe form of epilepsy as a baby, her determination to live life at its fullest makes this novel one of the most inspirational memoirs I’ve read.

Told from her dad Marc’s point of view, it vividly illustrates the struggles in his family’s life. The tension between him and his wife throughout the book are raw, honest, and real. It’s not hard at all to put yourself in their shoes.

Epilepsy is a condition that is not portrayed or seen as much as it should be in modern literature.

What shocks me is that one in twenty-six people experience an epilepsy diagnosis, whether mild or severe, in their life. It’s one of the most common diagnoses among neurology, and for some reason many people still are not familiar with it.

Ana’s passion was dance. Dance was what she loved to do, and it was so awesome to see her pursue that passion even in a time when many thought she should give it up. At times she was also humorous, and that brought a sort of light into this read.

This book is important. It’s a fantastic, inspirational read for anyone. If you’re in a dark spot, looking for the light, Marc Palmieri completely paints that picture for the world.


Content/trigger warning- medical trauma, drugs, severe language (including F-words).


(My name is Elena Rose, and I'm the person behind the Bookish Queen book blog! You can visit my blog here: thebookishqueen4.wordpress.com or view the post for this specific book here: https://thebookishqueen4.wordpress.co... )

[Nick Holmberg · Rating 5 out of 5]

A grad school pal from my ’03-’04 CCNY days is having a fantastic time doing a bit of a book tour. As an actor and college instructor, he is perfectly suited to engage and teach the public about his experiences caring for someone with a severe illness. And he’s a hell of a writer, too. She Danced with Lightning is a memoir of Marc Palmieri and his family navigating their daughter Anna’s epilepsy over the course of about a decade and a half.

Since the book’s recent publication, I’ve seen many people posting on social media how they could not put Marc’s book down. They must be of stronger stuff then me. Marc, a playwright of several produced dramas, writes with the dramatic tension that one would expect of, well, a dramatist. The ebbs and flows of terror and helplessness that Marc depicts in his narrative were so evocative that I had to pace myself: death of a child and ruined marriage a definite possibility at every turned page. I could only read one chapter per sitting, experiencing Marc’s anxiety and helplessness in the face of the medical mystery that was Anna’s disability. This isn’t to say there aren’t moments of levity in this story (e.g. Marc’s concerns about being illegally in possession of medical marijuana; adolescent Anna’s mild Tourette-like symptoms brought on by the lesion buried in her brain). And there are moments in the story that are truly relatable: the life of the artist needing to juggle jobs while finding time to work on the next piece of writing.

Marc helps the reader understand that all things worth caring about take a hell of a lot of hard work, endurance, and faith. And for Marc to keep pressing forward in the face of such uncertainty would have been a far more daunting trial without his multitude of friends and family supporting him.

[Stuart Brynien · Rating 4 out of 5]

Anna Palmieri was only five months old when she began to suffer seizures. As she got older, her parents, Marc and Kristen, became all too aware that at any moment of the typical school day a call might come in, informing them that something had happened to their little girl in class. They took her to hospitals, sped her off to one specialist after another; maybe it's epilepsy, they were told, maybe it's not; maybe she's suffering from nothing worse than acute anxiety, and is being plagued by panic attacks. They tried medicating her, changing her diet. Sometimes days would go by uneventfully, and nights too, but then the seizures would strike again, and back to the ER they'd go. Then one day, as Anna was about to turn twelve, somebody came up with a new diagnosis, and suddenly there was hope--if Marc and Kristen were willing to take the biggest chance of all... "She Danced With Lightning"is a tough read but a good one. Palmieri--a playwright, actor and teacher--has a fine sense of drama, a keen ear for dialogue, and a storyteller's eye for detail. It's brutally honest and heartbreakingly real, and through it all we witness the courage and determination of everyone involved, but especially Anna, an athletic young lady of unconquerable spirit and remarkable strength. It's part medical mystery, part family drama, and--thanks to all the misdiagnoses the Palmieris were expected to accept--part horror story, too. Bottom line: "She Danced With Lightning" is more than just an evocative title. It's also a terrific story. Read it.

[Gregory Allen · Rating 5 out of 5]

I pick up the book a little after 11pm thinking I’ll just read one chapter & then it’s 1:48am & I’m finishing the book in tears & just want to hug this entire family. Yes it’s a story of a young girl dealing with epilepsy on a daily basis. Yes it’s a memoir of a family coping on this journey. But it is the writing, the exceptional writing of this playwright/screenwriter that makes the reader feel as if they are going through it with the family in this powerful tale.

Mr. Palmieiri is a gifted storyteller as well as an amazing father who grapples with decisions of what is best for his child. I am not a dad, but I can only hope I would be half the man he is as he so bluntly shares of his feelings. Thank you to him for sharing such a personal story that is bound to help so many other families.

I have been reading memoirs all summer and this moves to the top of my list. I can’t recommend it enough and really hopes that Hollywood comes knocking at his door for this story.

[Peg (Marianna) DeMott · Rating 5 out of 5]

Such a good book! More meaningful for me than for most since I’m an epilepsy sufferer. This is a tale of what it’s like to have a child who suffers from epilepsy and it reminded me with every minute spent listening of the fact there are things worse than having epilepsy and one of them is most certainly having a child who has uncontrollable epilepsy. Oh my goodness, this book was so well written. The book ended two years ago and I need an update. Marc Palmieri has written a real page turner and I will likely return for a second reading. Best of all it has a happy ending. Lesson learned don’t stop seeking solutions and the right doctor can make a huge difference.

[Will Garvin · Rating 5 out of 5]

Great book about a parents struggle with a child with epilepsy.

[Melissa · Rating 5 out of 5]

My review ⭐️⭐️⭐️⭐️⭐️

I will say I might be a bit biased since I personally know the author. That said, this book was gut wrenching. How many people do you know who are willing to share their raw, authentic story with the world? I am not a parent but I cannot imagine how difficult it must be to watch one's daughter suffer with epilepsy. It is not something, one can but a band-aid on. As Marc and his family traversed this unfamiliar territory we see a range of emotions. He shows us how important is to have a strong support system. He also shows us the imperfections of being a parent, not always getting it right and being scared and a range of so many emotions. With humor and wit, we get to see the journey through Marc's lense. Wonderfully written and beautifully raw. Thank you Marc for sharing your story and your family's story as you traveled the road of epilepsy with your daughter.

[Claire Audibert · Rating 5 out of 5]

An emotional and gripping story. Marc is a talented storyteller, and I’m grateful he has shared their journey with the world.

As a mum of a child living with epilepsy, and an author myself, I was very much looking forward to reading She Danced with Lightning (also, brilliant title!). This story is very different from ours, first and foremost because it is a miracle story. Anna, Marc’s daughter is a bit older than our son is, and epilepsy has had a very different impact on their lives.

But as a medical mum, I recognised so much of the pain, suffering, and agony that Marc shares in the book. I felt the pit in my stomach when Marc aptly takes us on this incredible journey to literally save their daughter’s life. The sibling dynamic, the struggle to manage it all, the hours spent searching for answers online, then researching medication side effects, reading doctors’ bios, the sleepless nights, the fear that one day they may never wake up.

Everyone should read She Danced with Lightning. If you are a parent of a child with complex medical needs, you will no doubt recognise parts of your own journey. And if you love, support, work with, or even just know children with disabilities, you will have a much deeper understanding of what their life can be like.

Last but not least, it is a beautiful story of how our children can teach us to be brave, and how passion and hope can have incredible powers on the mind. The anguish of this devoted dad trying to protect his family while reconciling everything makes for a heartbreaking read, and you will find yourself rooting for him and his family.

Thank you Marc, and wishing you all all the best.

[Jessica · Rating 5 out of 5]

It took me a while to get thru this book only for the simple fact it was hard to read at times because this IS our life. The struggle as a parent of a daughter with epilepsy and the reality that this is now my family’s way of life is sometimes hard to swallow. The constant struggle with prioritizing work, appointments and seizures and the hopeless feeling constantly in the pit of your stomach…the fear knowing your daughters life and future is in the hands of doctors and the one thing you were meant to do as a parent to keep your child safe is out of your control. The multiple meds, titrating and weaning to only find out it’s another that does not work and the seizures persist. The frequent testing and hospital visits, the upcoming pre-surgical work up hoping that this could be the answer to our prayers. we can only hope our daughter Charlotte will be as lucky as Anna in the end. Thank you to this author for being brave enough to put your family’s story and struggle out there to share with others, and know that reading your story has given me some strength and hope that there could be a light at the end of the tunnel for us as well ❤️

[Michelle Tuite · Rating 4 out of 5]

Reading 2025
Book 67: She Danced with Lightning: My Daughter's Struggle with Epilepsy and Her Boundless Will to Live by Marc Palmieri

A book that was recommended to me after I read Judith Heumann’s memoir. I read this one on my Kindle.

Synopsis: Part family memoir, part medical mystery involving severe epilepsy, She Danced with Lightning follows one girl’s battle to persevere as a competitive dancer, culminating in a terrifying decline, a courageous performance, and an eleventh hour, life-saving brain surgery.

Review: This heart-rending story about a family managing hour to hour with Epilepsy. The parents' strength was on display on every page as they struggled with their oldest daughter’s seizures, that she had from 5 months old, their second child, full time jobs, and maybe squeezed in some semblance of a marriage. I could see our own Epilepsy story in these pages, especially the fear of our child dying in his sleep. Marc takes a bunch of pages to detail his back story, as he is a writer and professor. These parts detracted from why I was drawn to the book in the first place. While his story is interesting, it is not the reason I picked up the book. Definitely recommend the book. My rating 4⭐️.

[Lauren Ross · Rating 4 out of 5]

Read this book for a health professions class. I normally don’t read non fiction and enjoy it, but I actually really loved this. I go to the school that Marc teaches at and I actually almost had him for one of my classes so the book felt very personal. There were some parts where he went on tangents abt random stuff, but most of the time I didn’t mind because it was interesting.

Such a heartfelt book and truly inspiring. It’s not too long so it’s a pretty quick read and definitely worth it in my opinion. I felt like I could connect to so many areas in the book, even just by mentioning moments like the day Cameron Boyce died. I can also remember the morning I saw the news of his death while I was on vacation and to think that not too far away, Anna had also discovered the news some time after her successful surgery.

[Shivanna Ram · Rating 5 out of 5]

The major reason that I loved this book, is because I have Epilepsy. I was diagnosed in 2022, and this is new to me. I’ve had a massive amount of tests to really understand my brain. My last (hopefully) Craniotomy on the left side and frontal lobes was last March. I am having huge side effects because it was the left side. I try to talk to people, but no one cares to talk to me about Epilepsy. No one understands. This book finally made me feel like I wasn’t crazy 🥲

[Sandy James · Rating 5 out of 5]

An exhilarating read from beginning to end. Palmieri's account of his daughter's journey with Epilepsy is raw and honest. An emotional roller-coaster that continues right until the final words. A true story of courage, fear, hope beyond hope and a father's unswerving commitment and love for his daughter.

[Debbie · Rating 5 out of 5]

Bless this Child & Family

I’m so glad that I finished this right before the winter holiday season; while it tears at your heart all the way through it’s worth it and. Was a gift to myself.

[Louis Franci · Rating 5 out of 5]

Deeply affecting personal narrative about a man’s life with a daughter stricken with a severe epilepsy, but who seems clearer on her place in her life than he is. Some great NYC, Hollywood and showbiz adventure too. A brutal but ultimately uplifting story. Glad I found this.

[Kris Valencia · Rating 5 out of 5]

Memoir skillfully structured present action is tense with a sense of terrifying inevitability, but the book also takes an intellectual and literary perspective on a man who’s identity is torn in pieces a by a health crisis of a child and his responsibility in it. A great parenting memoir.

[Colleen · Rating 5 out of 5]

This was a beautifully written and eye-opening piece. The author's sincerity and vulnerability allowed the readers to gain a true understanding of the situation.

[Rene Peters · Rating 5 out of 5]

Love the honesty and openness in this book. As someone with epilepsy, parts are relatable

[Mckinley · Rating 2 out of 5]

Father's perspective here.