My Life with Epilepsy
By Marie-Claire Rose
Hi, I’m Marie-Claire and I am seizure free now. Generally, I don’t like talking about myself, but I felt this is an opportunity to let people know they are not alone suffering with the daily challenges of epilepsy.
I’ve had epilepsy all my life. From Infancy to Adulthood, I have suffered with seizures. My seizures were in a “cluster pattern” and nocturnal (often occurring during sleep).
For the most part, I was afraid of sleeping and dreaded bedtime because that meant the seizures were likely to come. Flash forward to 2009, when I tried a new released medication which gave me some freedom from the shackles of seizures. But if there are medications to stop seizures, why focus on epilepsy? Because medications do not always stop seizures and even when they do, they come with powerful side effects. Then there is the stigma that goes along with it.
“More people live with Epilepsy then with Autism Spectrum Disorder, Parkinson’s Disease, Multiple Sclerosis, and Cerebral Palsy combined” (Epilepsy Foundation)
Growing up in the 90’s, I was very lonely. There was no social media, yet. Nobody was ready to talk about it as openly as today. I was faced with discrimination and fear, followed by false beliefs (stigma). That made friendships hard. Here are a few examples:
Parents did not want me over for sleepovers because they were afraid I would scare the other children. I once heard a girl tell me she did not want to be around me because she thought I was contagious (stigma). But that is nothing compared what I was faced with during the early onset of my teenage years and young adulthood.
My life had taken a turn at 12. At the suggestion of a specialist, I was a candidate for brain surgery which would remove the seizure focus. I was thrilled. “That’s it! A solution!”, “Everything will be fixed....", all of these ideas crossed my mind hoping they would all go away only to discover that my life would become a descending roller-coaster with more challenges.
All the subsequent problems from the surgery resulted in what is called “brain injury” , in addition to even more seizures, migraines, back pain, and body aches from being on bed rest. Daily living chores became harder, including taking care of myself. School was very hard. Yet, through willpower and determination I finished High School and College. The only thing that kept me fueled through all the turmoil was my faith. There I found peace and quiet away from my stressful daily life.
Happily, after College, I got the proper care I needed to recuperate. I took time off to focus on my health. Along the way, I found friends. I started communicating better and felt connected to others. During my time getting help, I relearned many things that make me who I am today: a person with a disability but not defined by my epilepsy. Epilepsy is part of my life but cannot take control over my life. I learned that people have many differences. Yet, isn’t that the beauty of friendships? It brings different capacities and ways of thinking together.
At present, I am living independently, taking many medications daily to control the seizures. My daily life is livable, and I finally feel free. Even though I could be partying all night as any woman my age would do, I would rather go to bed early than risk getting thrown off by staying up late. I am happy. Sleeping is now something I love. I can dream. I have so much to be thankful for. Back in my childhood, I would struggle for dear life to find peace of mind. Now, I am among the lucky ones.
Epilepsy Foundation of America. 2017. Web. 2 April 2, 2018.