Alysse Mengason has lived with epilepsy for nearly 8 years. She writes a blog, www.brainthunders.com, and lives in suburban Detroit with her husband and daughter.
My commitment to epilepsy advocacy and support sort of happened in the blink of an eye. It was almost as if I didn’t leave myself another choice in the matter.
Like so many people, prior to my diagnosis in early 2003, I had never even heard the word epilepsy, let alone witnessed someone having a seizure. I was a 33-year-old ex-TV news anchor who had just made the crossover to corporate public relations. I traveled, kept an enormous group of close friends, had a stellar relationship with my family and genuinely loved every day of my life. I was newly engaged to a fantastic guy and had just moved from Michigan to the East Coast, where I was planning our wedding.
When my mother and then-fiancé sat in the hospital room after I awoke from a coma, after doctors had treated me for meningitis and encephalitis, it began to sink in. My journey with epilepsy had begun and I had no idea how to take that first step.
I wasn’t just learning about seizures and how they affected my life or how the brutal side effects of the antiseizure medications would turn my world upside down. I had to learn how to live life in an entirely different way. Sure I could no longer drive, yes I had to remember to take my pills on time, but I was also sidelined when I had a tumultuous day of seizures, bedridden in a darkened room. To me, this was so new—and frightening.
I began to study and read. I was intense about my research into epilepsy and what was in store for me. I made phone calls to at least a hundred hospitals around the country to question them about their epilepsy programs. I grilled them on treatment options and the support they offered to people with epilepsy and their families. I always asked one question at the end: Do you offer anything that will cure my epilepsy?
The answer I got on every call was a resounding: no. Life went on. I married my fiancé. I learned how to compensate for my memory loss and language issues with the help of months of rehabilitation and therapy. I connected with a fantastic group of epileptologists in Baltimore at Johns Hopkins Hospital. And each month when my husband and I would make the drive to my appointment, I grilled my doctor, asking him what he could do to cure my epilepsy. Was I naïve? I like to think I was optimistic and, at the very least, full of hope.
The months turned into years. My husband and I were able to have a healthy child in the fall of 2005. I was able to keep my job, working from home, pushing myself each day despite the setbacks, which included memory difficulties, cognitive challenges and medication side effects. After a visit to my doctor, I questioned the future. Would there ever be something—maybe a drug or a treatment—that would cure me of these seizures?
I was evaluated for surgery twice, once in late 2006 and again in mid-2009. Each time I had depth electrodes and grids implanted in my brain and I was monitored in an epilepsy monitoring unit for 2 weeks. My hopes were incredibly high after my doctors gave me the statistics. I knew many people who had epilepsy surgery became seizure free.
But both times I learned that surgery was not an option. My seizures come from both sides of my brain, so the risk of a resection was too high. I decided to have a vagus nerve stimulator (VNS) implanted last year after I finally accepted the fact that I was never going to have surgery. As I told my doctor, if the device was something that could at least reduce the severity and frequency of my seizures, I wanted to try it.
I’m probably considered one of those epilepsy patients who has exhausted all of the treatment options. In some respects, I’m coasting on the seizure highway, maintaining the speed limit (I say this, but I can’t even drive!) I have no more options other than to try new medications. But, I have tremendous confidence in researchers and doctors that someday, perhaps not in my lifetime, there will be a cure. I believe we must remain positive and make sure we are advocates. If we continue to support organizations like the Epilepsy Foundation and their mission, perhaps fewer people will have to struggle the way I do with seizures.
Yes, I’m optimistic, but research and advocacy are keys to the future. I’m forever hopeful that someday a cure will happen.