My journey with epilepsy

Hello all.  This is a post I originally wrote back in Sept. 2014. In celebration of epilepsy awareness, I’d like to share it with you once again.

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I’ve chosen to deviate from my normal chat about romance today to discuss an issue dear to my heart. As some of you may know, I live with epilepsy. Since I was 10, I’ve had seizures and have taken various medications for it.

We’ve all made seizure jokes, right? I might even have done so myself, it’s become so acceptable. However, whenever I hear one, I do feel a slight sting. Epilepsy has been my cross to bear for over thirty years now, the majority of my life. I do acknowledge in this life there are those with more ponderous crosses. I can honestly say my life is a good one, and my condition is under control.

That doesn’t mean I haven’t had a few interesting moments here and there. A couple were life-threatening.

My first seizure hit when I was 10. I was standing in a crowded movie theater with my mom and younger brother. The lineups were long, we all carried big winter coats and popcorn. Suddenly, I dropped all the things I was carrying and then promptly dropped as well. I soon began having seizures at school, which generally gave my friends and teachers a start.

I don’t suffer from grand mal seizures, the kinds they show you in movies. My condition is known as temporal lobe or complex partial epilepsy and my seizures look different. My eyes glaze over. I lose focus. I may stand or sit or wave my arms around. I may speak gibberish or out-of-context. They last about 30 seconds and then I snap out of it. I know I’ve seized because a chunk of time is missing. To me, it’s as if I’ve had a brief nap, and I have no recollection of what I’ve done during that period. I can assure you it’s a scary sensation to “wake up” and not know what you’ve done.

I’ve had seizures while giving presentations, while watching movies, while riding a bike and in numerous other situations. I once almost wandered out of a bowling alley on my own, my friends in pursuit. During my teen years, the worst period, it wasn’t unusual for me to seize 4 times/day. Those were the days I stayed home from school.

The most frightening moment occurred when I was about 20. I had gone shopping at a local mall and went home on the subway. I seized while standing on the subway platform, waiting for the train. Just as the train approached, I seized and began to walk toward the edge of the platform. If it hadn’t been for a Good Samaritan, I am sure I would have died that day.

Because of epilepsy, I couldn’t drive when all my friends did. Only after many years (in my 30’s) did I finally get my license. I waited until I’d found the best medication possible and until I was seizure-free. For many years, no doctor would actually diagnose my condition. And once they did, I began taking every medication under the sun: barbiturates that made me drowsy, herbal medicines that did nothing and I even tried acupuncture. I now take a drug called Tegretol and it has allowed me to remain seizure-free. I am often tempted to stop taking it, to see if the seizures have gone away, but I can’t ever take that chance. I know I will be on drugs for the rest of my life.

In my new book Vice, coming Sept. 22 from Samhain Publishing, the heroine has epilepsy. It’s the first book in which I’ve explored the topic and it means a great deal to me. Why have I shared all this today? To shine a light on this mysterious condition. So many suffer from it, many of whom can’t rid themselves of the seizures as I have with medication. And yet a lot of people still find it humorous to joke about it. I would never censor anyone, but I would like to share my experience. Hopefully in doing so, it’ll become a little less mysterious and a lot less funny.

Thank you.

Rosanna