What inspired you to start writing?
My first book, Can't and Able, was published initially in Able magazine as an article. It was all about my struggles to feel my self-worth. It is significant because so many people feel a kinship with my book. I still read it to kids, and they identify with Can't.
Why did you want to write stories about epilepsy and other conditions?
When I started teaching, I realized many children with medical conditions struggled to cope. My idea was to help them by creating characters they could relate to. Every writer shares a piece of themselves in their books; my stories were no different. My experiences helped me cope, and my empathy also helped others cope. I just hope that children find their path and realize that a condition does not define [them]. I have many beautiful letters stating how my books have made a difference in the lives of young and old.
How does it feel to use your writing to raise awareness about epilepsy?
I am retired, and I continue to help debunk myths about epilepsy. New York City, my hometown, has a more accepting attitude toward conditions. When I moved to Florida, it seemed I would get basic questions from people who did not understand epilepsy. I was at a gym when a woman had a seizure; they tried to move her, but she was rigid and tense. I helped with first aid and making her more comfortable until help arrived. I had them film it for the EMT so they could know what type of seizure it was. People, unaware, can discriminate instead of understanding another person's plight.
What made you want to become an advocate?
For most of my life, I have been an unofficial advocate, but there have been a few instances where I was able to assist organizations with my experiences. I worked briefly with the Northeast Regional Epilepsy Group, where I shared my experiences with attendees. The doctors were all compassionate, and the experiences were helpful. I love the Josh Provides Epilepsy Assistance Foundation. I believe in its complex and honest work in offering help and hope to people with epilepsy. I donate to it as much as possible, even offering proceeds from my books when I can. I also appreciate the talks by experts and their dedication to helping members. I have given a few Zoom presentations, including one about journaling, a favorite way to cope and discover oneself.
Do you have any projects in the works?
I will continue to do podcasts and help others find their happiness. I have numerous speaking engagements throughout the year, during which I aim to raise awareness about epilepsy and other conditions.
What is living with epilepsy like for you today?
I still have nocturnal seizures [which occur during sleep]. The medication that has given me my life back is Depakote [valproic acid]. I have a love/hate relationship with it. It slows down my metabolism, [but] it gave me a sense of normalcy I had never experienced, and it was worth it. I live with a weight problem, but I do my best to feel grateful each day.
Josh Provides Epilepsy Assistance Foundation
Founded in memory of Joshua David Chapnick, who was diagnosed with epilepsy at 16 and died in 2008 when he was 28, the Florida-based foundation aims to help people through community education and awareness programs; support groups; and financial aid for medical services, seizure detection devices, and transportation. Learn more at JoshProvides.org.
