In the spirit of Epilepsy Awareness Month, we are presenting a story of how awareness about epilepsy in written form created increased awareness through the music of Cynthia Folio, PhD, a musician and assistant professor of music theory at Temple University. She first discovered the Brainstorm Series by Dr. Steven Schachter while at camp with her daughter, Lydia, who has tuberous sclerosis.
After contacting Dr. Schachter, she learned of a book he was doing to depict the art and writings of artists with epilepsy. The synergy took on a life of its own when she decided to include selections of art to enhance her musical score. “When the Spirit Catches You” is a multi-media presentation -- music, art work, and readings from Dr. Schachter’s books, with voice-overs by her daughter, Lydia. This is Cynthia’s story.
What is the story behind “When the Spirit Catches You” and your daughter’s involvement?
My daughter, Lydia Thompson, will be 15 and attends the Bala Cynwyd Middle School, where she is receiving special education. I was commissioned to write a musical piece, a big piece that was dramatic, theatrical and story like. I was at an epilepsy camp when Lydia was a preteen and I was reading the Brainstorms books. After living with a child who has had seizures all of her life, suddenly I said, “Wow, so this is what it is like!”
My daughter could never express what seizures felt like and I often wondered: What does she feel? What does she see? She talks, but she is not verbal enough to explain what is happening. These books made such an impression on me that I decided to write a composition that expresses what it feels like to have a seizure and captures the emotions of epilepsy.
How do you feel that the composition captures the feelings of a seizure?
The composition is in three parts: the aura, the seizure, and the post-ictal period.
When I decided to do this I contacted Dr. Schachter and he told me that he was doing a book of art work by people with epilepsy. That is when I postponed the premiere and turned the composition into a multimedia piece. It premiered the following year. I chose four artists from the book whose art was clearly influenced by their seizures and that would go with my music. I had to change a lot of the music to go with the art – to make them work together. That’s when I decided to do the voiceovers. And we recorded Lydia’s voice saying little phrases such as: “It feels like a roller coaster. I feel a tingling feeling in my feet. I get butterflies in my stomach. I feel confusion and shame.”
How has epilepsy affected your daughter?
She was having seizures from the time she was 5 months old. We took her to the pediatrician who said she was probably having gas pains. We asked about the white spots below her belly button and he dismissed them. Then when she was 18 months, she was having seizures again all of a sudden. It took a whole month to get the right diagnosis. The first doctor we went to didn’t believe she had seizures because they didn’t show up on the EEG. We went to a neurologist, who also did not give us a proper diagnosis.
Finally we found a neurologist who instantly recognized the white spots and understood that the diagnosis was tuberous sclerosis. It’s sad, because if we had been given a correct diagnosis sooner, we would have begun treating her with medications earlier.
She was able to attend school and developed normally but has had some developmental problems once the seizures began. We are fortunate to be in an area that provides a medical assistance plan that has paid for almost all of her bills.
What is your biggest worry?
For us so much of the worry comes about in thinking of her safety. Sometimes she gets stuck in a seizure and requires intervention. She has cracked her head open. Now she needs a helmet all of the time and she can never be alone.
She has almost never been seizure free. We also worry about sudden unexplained death in epilepsy (SUDEP). We saw a physician who was honest with us and told us that she was possibly at risk for SUDEP. She has had many tests—MRI, PET, EEG—and we even flew to Detroit for an experimental test to see which of the 26 tubers in her brain was causing epilepsy. After all of the tests none could be correlated with her seizures. The bad news was that we were not able to do the surgery. The alternative was cutting the corpus callosum so that the two parts of the brain are split or try a special diet for seizures. We decided on the diet. She’s now on the Atkins for Seizures diet, which is like the ketogenic diet. While she is still not seizure-free, she is much improved, to the point that we are taking her off one of her four seizure medications.
How do you describe her attitude through all of this?
I am sending you a self-portrait and we are impressed that she is expressing hope of overcoming epilepsy, which is why she is attracted to powerful figures. She takes Karate. Last Halloween she was a Ninja, and this year she wants to be Cat Woman. She is so wonderful, friendly, and sociable. She says that listening to her voice on the CD, makes her feels like a rock star. *
Have you had to alter your life to meet her needs?
Oh yes, for Lydia, it is time consuming finding and getting all the assistance we need for Lydia, filling out financial forms, and making certain that she is always accompanied by an adult. We need sitters all of the time and sometimes we need to take her to school with us and to concerts as well when I am performing.
This is life-changing. We had to determine how to treat her behavioral problems and how to draw the line and discipline her. In many ways, I have learned a lot. It has enriched me when I have students with disabilities. And you learn to change your expectations. I wanted a child who would go to Yale or Harvard and now I would be happy if she could live independently until she is at least 30 years old. But my immediate wish is that she can get through one day seizure-free.
Edited by Steven C. Schachter, MD
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