Epilepsy Ontario :: How Epilepsy Has Affected Me

How Epilepsy Has Affected Me
Jacquelin Chatterpaul

There are many hurdles that one must overcome in life. From that first bully in second grade to the death of a loved one to your first breakup, everyone struggles. I have gone through many of these and more. I am also living with epilepsy.

Most of my struggle was internal. I never thought much of my epilepsy as a child. I never actually saw anything. A seizure to me was a blackout and then a major headache and then a long nap. When I was a baby, my seizures were the result of a high fever. The doctor told my family that I would grow out of it, and after seven, it seemed like I had.

Around ten years old, my brain went back into relapse—the seizures came back. This time, however, they would come unsuspected at the most inconvenient times. These were Grand Mal seizures that I had no control over. I would collapse in the school yard, in my uncle's pool, in the classroom, on the way down the stairs and many other inopportune places.

At this time, I had plans for my future. I planned on swimming. It was the only sport I was ever good at and I loved the water. I planned to become a lifeguard, which would give me some medical experience. I wanted to be a doctor. But with my seizures coming monthly and without warning, my parents took me out of swimming lessons—my plans were shattered.

I took some babysitting lessons and CPR because I still wanted to be a doctor. I had few babysitting jobs before coming to the realization that I had no control of my seizures. Was it really right for me to attempt keeping children safe, when I couldn't keep myself safe? I stopped babysitting. The thought germinated in my mind for years, and soon it developed into a mild depression. Yes, epilepsy entailed a personal struggle. I am thankful there was no lasting physical toll on me. But the emotional scarring seemed to always outweigh any positives. My marks began to slip and my social life was at an all-time low.

I could have collapsed at any time. Everywhere I went I felt uneasy, insecure. I could not get my driver's license, join the workforce, or really do anything that involved people. I had many seizures in class and it was embarrassing for me. I tried to laugh it off the next day, but I was crying inside. I had tried several medications in the hope of a cure: Fena Barbatol, Epi-Val, Frissium, you name it. There were months that I went seizure-free, which gave me false hope of a cure. Every time I had an episode, I felt more and more hopeless. There was so much I could do, and so much I wanted to do, but every possibility I explored ended in a possible seizure.

Epilepsy was a hindrance to my success. It was not a tangible enemy that I could fight, but an emotional demon that I needed to purge.

So what did I do? I let it out.

Much of my work as an author was inspired by my epilepsy. I would never come right out and say I was living with epilepsy, or even write about characters that were living with epilepsy, but there was always a major personal hindrance that the character would have to overcome. And in the end, even if they died, their personal conflict was solved. I mentioned the themes of hopelessness and depression in my stories and essays.
I was also an artist. I loved to paint idealistically, but after this melancholy epiphany that I was not in control, I had begun to use darker colours. The more emotion I let out, the better I felt. I didn't need to speak about this to anyone directly. I learned to indirectly implement any internal struggle through artistic means.

I was also a singer. I sang my heart out in church as a dedicated member for years on end. I did not set out to prove anything. I just wanted to sing. Since joining St. Padre Pio Choir, I have done more than developed my own voice as a singer. I made friends too at church. I was a church friend that gave me my first job doing secretarial and organizational services. With the increasing activity in my social life came the increasing activity in my spiritual life. I have never been so close to God.

I received writing awards for one of my short stories and one of my essays in High School. For my artwork, I have had several of my paintings and sketches in my school's many art shows. I never won any awards for my singing in church, but since the cashier at No Frills recognized me, I consider myself a celebrity in my own right. I always thought that my epilepsy would stifle me, but in the search of absolution, it has also inspired me to be the person I am today.

Epilepsy humbled me, I think, and maybe even put me on the path I was meant to tread. I think back now and realize that if I was not blessed with epilepsy, I would be a very different person. I initially planned on becoming a doctor, because that's what everyone told me I'd be good at. Learning to live with epilepsy has taught me about myself. I learned about what I was good at. I have since decided to develop my artistic talent further by pursuing a career in professional writing or art therapy—and of course, I will always sing.

To date, I am still on medication. I take about 250mg of Tegratol twice daily and haven't had a seizure since last January. Some would conclude that I had finally found my cure from pharmaceuticals, but I'd still say that expression was the best medicine for this condition.