I have lived more than half of my life with Epilepsy, but unlike most people I started having seizures later in life, for me they started at age 19. Even now that I am 41, I still remember my first seizure like it was yesterday. I was at a friend’s dorm room with a very bad headache. I started having debilitating migraines when I hit puberty, so I took my normal course of migraine medication and a Coca Cola to make it go away. The headache was particularly bad this night though so I knew something was different. I laid down on her bed and had my first grand mal seizure. I woke up in the emergency room after having 2 more seizures and with a very different type of headache. Physically, muscles hurt that I didn’t even know I had. I went through 3 days of grueling tests, including a spinal tap. I had to get several cat scans because I kept moving due to muscle spasms.

I learned so much from this experience, including that Dilantin makes me swell up like a tomato and break out in the full body rash, I also learned that I am a lot stronger than I ever imagined. While I was in the hospital, my parents were in India and my sister was running the family business 7 days a week, so I went through this experience by myself. I learned that all the epilepsy medications pretty much has the same function, but with different side effects and I learned that I have no triggers for seizures. I learned how to communicate with my brain and to check in often for an aura. I learned when to slow down and rest and that too much rest would drive me into a depression. I learned how to get up every day and get to school, hold down a job, and manage visits to the neurologists. I also learned that I had little patience for patronizing neurologists. I didn’t want a doctor who blamed me for having a seizure or talk me into taking a medication that had terrible side effects for me. I wanted quality of life still, after all.

My advice to anyone going through this experience for the first time is to seek out others who are going through seizures, as well. I wish I found the Epilepsy Foundation sooner. It would have saved me years of frustration with neurologists who didn’t match my personality nor specialize in grand mal seizures. The Epilepsy Foundation also offers an art therapy class, which pulled me out of a particularly bad time of depression. I will always be thankful for that. Most of all, I want others to learn that there is no shame in epilepsy. When I first started having seizures, I always felt so much shame and embarrassment after having a seizure. When I surrounded myself with fellow epilepsy survivors who all had adapted their lives to the disease and learned how to cope myself is when my healing began.

Adult living with epilepsy
Studio E Art Therapy Participant