Living with Epilepsy: Accepting the Monster

My first Grand Mal seizure was in 1998. This was roughly four years after I was involved in a car accident where my brother, mother, and I were hit by a drunk driver, taking my mother from my brother and me and leaving me with a traumatic head injury.

I still remember the feeling of my first seizure. At the time, I did not know what was happening. It felt like my head was being shook like a snow globe. I was 14.  Later, I would have seizures here and there, but I would also go extended periods of time seizure free. My seizures were a nuisance, but part of my life whether I liked it or not: epilepsy was the monster I had to deal with.

Last year, I was living alone, cleaning my apartment, when I had a seizure mid-day instead of the nocturnal ones I’d been having. It was very stressful and anxiety-provoking.  I didn’t know what this meant for the future. I couldn’t drive for three months. How would I get to work if I couldn’t drive? Could I still live by myself? Would I start having day seizures now? I didn’t have the answers to any of these questions. No one did. And that made me extremely anxious and upset.

At that time, my neurologist recommended a device called a Vagal Nerve Stimulator (VNS) to help control my seizures (coupled with medication). Simply put, this is a device that looks like a thin pocket watch with a cord coming out of it. The pocket watch is placed on the left side of my chest and the cord is wrapped around my Vagas Nerve, and this helps to control seizure activity. The VNS is constantly sending little electric jolts to the cord around my Vagas Nerve. These aren’t painful. I carry a magnet with me at all times, and if I feel the aura of a seizure coming on, I swipe the magnet over the part of my chest where the VNS is and this activates the “system” and can block a seizure.

While I was adjusting to the VNS, I still had a slew of nocturnal seizures and one more seizure during the day. Because the seizures continued, my anxiety was very high, and I was not able to live on my own. I still had my apartment, but was staying with my parents for extended periods of time. Every time I got back to the apartment and I had another seizure, I would go back to my parents’ house. I had spoken with my parents about the possibility of me giving up the apartment if my seizures got out of hand. After my second “day” seizure, I gave up the apartment and moved in with my parents. At the time I was disappointed that I had to give up my place (I’d lived there for four years), but I could also recognize I needed help, and I’m fortunate enough that my parents were able to provide this help.

My seizures did decrease over time and I’m happy to say that I’ve been seizure free for eight months now. Thanks to a strong support system of family and friends, I was able to regain my normal activities (commuting to work, running errands, etc.) 

Having epilepsy has been and will continue to be one of the biggest challenges in my life. The fear of having a seizure produced a lot of anxiety in me that continues to this day. The thought of being fine one minute and then losing complete control of your body the next is one of the scariest things I can think of.  How do I manage it? How do I keep the fear and anxiety from running my life? Talking with family, friends or a counselor helps. Also, I tell myself that while epilepsy is not something I have 100% control over, I can do things to remove triggers, like avoid alcohol and flashing lights and like getting plenty of sleep.

Living with epilepsy is really hard, especially when it interferes with you try to live a normal life. Epilepsy stinks, but, unfortunately, it isn’t going anywhere. The best I can do is tell myself I’ve dealt with seizures before, and I can deal with them again. It’s not fair that anyone with epilepsy has to worry about seizures, but we all have monsters to deal with, and you can choose to live in fear of that monster, or you can recognize that epilepsy is a part of your life and roll with the punches. It’s easier said than done, but I am getting there!