My Life with Epilepsy
By Gayle Guynup
The first 16 years of my life were as normal as that of any teenager, growing up in a middle-class family on the Gulf Coast of Florida. But in my 17th year, just as I became involved in all of the excitement of graduating from high school and moving on to college, I began having seizures.
I had no idea what was happening to me until my mom and I made an appointment with a neurologist who gave us the news – I had epilepsy. Now, I knew very little about the disease at the time except that it included convulsions, and left me passed out on the floor when it was over. To this day, I remember very little about any of my seizures.
I do, however, remember one: I was staying at a hotel in Naples on a school-sponsored trip. It was late at night, and I decided to go for a swim to relax. And, yes, I knew I wasn’t supposed to do that. While I was in the pool, I had a seizure. Luckily for me, a good friend had followed me to the pool, jumped in and pulled me out. Had she not been there, I might not be writing this article today.
One of the first things I learned about my epilepsy was that the doctor had no idea why my seizures had suddenly started at age 17. He told me I probably would never know. And I also remember him telling me about the things I could no longer do – mainly driving. How was I going to go to college? How was I going to get a place of my own? How was I going to be able to do anything I had planned, if I couldn’t drive? I also couldn’t swim by myself anymore. I used to drive out to the beach and swim every day of my life and now that, too, had been snatched away.
It was a terrible time, and I dealt with it as best I could. I do know that my plans to attend USF in Tampa were put on hold, and, instead I went to Manatee Community College for two years so I could be closer to home, where I would have more help getting around. I parked my brand-new red mustang that I had worked so hard to buy, in my family’s driveway, and hitched rides wherever I could.
The doctor did give me one glimmer of hope: When I was seizure-free for six months, I would once again be able to drive.
I was put on a medication – Dilantin – which, honestly, made me feel worse than the seizures. I hated that medication, and I still had seizures while on it. I was exhausted every day, terribly forgetful, and felt like I had aged 20 years. Some days, I could barely recall my name or where I lived. My college classes were so much harder because I couldn’t think straight. It was a very difficult time.
I never had a lot of seizures, maybe three or four a year. But I never knew when they were coming, or what it was that would set them off. So, I was anxious about them all the time.
Somehow, I made it through community college and went on to attend USF in Tampa. I told very few people that I had epilepsy, really only my roommates at college, and a very few other close friends.
Once I graduated, I moved to Atlanta, where I lived for three years, and then went on to New York City. At least in New York, driving was not an issue, since I used the subways and taxis and didn’t even have a car there. And yes, I was still having occasional seizures.
When I moved back to Sarasota from New York, I decided to try a new neurologist, one whom I had read about online. I liked him right away, and he immediately took me off the Dilantin and put me on Tegretol. When I think of the best days of my life, that day is among the best. Since I started on the Tegretol (now Carbatrol), I have had no more seizures, and that was almost 40 years ago.
Still, I had told very few people in my life that I had epilepsy. And every time in the years since that I have had an EEG, the epilepsy is still there. And so, it remains a very real part of my life.
Why didn’t I tell my friends that I had epilepsy? It is all too true that there is a stigma that goes along with this disease. A lot of people believe it is a mental illness – which is not true. And a lot of people are afraid of the convulsions, or having to help someone through a convulsion, and so choose not to be your friend.
And so, for years, epilepsy remained my deep, dark secret.
Until, just a few years ago, when Andria Bilan introduced me to JoshProvides. I had known Andria for years through nonprofit circles, but I did not know about JoshProvides and its many services to those with epilepsy and other seizure disorders and their families.
With her encouragement, I decided it was time to get involved with JoshProvides, and share my story. I wrote about it, and spoke at several of the JoshProvides support group meetings, eventually becoming a member of the board.
Why did I do this?
In learning about JoshProvides, I was reminded of the many people who are not as lucky as I have been. People for whom the medications simply do not work; who, despite taking multiple medications each day, continue to have seizures; people who have had to have surgery to try to bring their seizures under control; and, of course, people such as Josh Chapnick, who lost their lives at an early age, resulting from a fall during a seizure.
I knew that keeping silent about epilepsy was not the answer. It is only by shining a light on epilepsy, that we can ever hope to find a cure and, in the meantime, give families the tools and resources they need to lead normal lives while dealing each day with this incredibly challenging disease.
In the almost 10 years that I did experience seizures, I kept one quotation in a prominent place so that I would see it every day: Epilepsy is something I have; It does not define who I am.
Forty years later, I still believe that.