I submitted my story for the Epilepsy Foundation last week. I was going to wait until they shared it on their website and Facebook but, since that hasn’t happened yet, I guess I’ll have to post it myself:
I didn’t understand what they were telling me when my family told me I had epilepsy. How? I didn’t remember having any seizures, but then again, I didn’t remember much at that time. That was about two month after being run over and having a Traumatic Brain Injury. I had already had several seizures while I was in the hospital, but I didn’t and still don’t remember anything that happened during that time.
My family immediately found a neurologist, who would help me take care of this. I took my medication religiously as my doctor directed, but I still didn’t remember anything. I didn’t feel an aura, a warning that a seizure is coming, I just remember people around me getting nervous and then blacking out. Next thing I remembered is waking up feeling tired, my mom was always next to me, every time this happened. Sometimes there were a lot of people, others just my mom and stepdad, depending on when and where I had the seizure, but those two were always there and my mom was always sitting next to me, making sure I was ok and letting me know I wasn’t alone.
I was always very tired, like I had just been running or working out, but it wasn’t just tired from a short run around the block, it was like I ran a marathon tired. The weirdest thing was, I never remembered what happened, why I was laying down, why people were looking at me or why they were worried. All I knew was I never wanted that to happen again, I hated that feeling of being lost, feeling so weak and making people that worried.
On April 8, 2015 I had a seizure in my bedroom. This time I had an aura, I knew something weird was happening to me so I called my mom. I laid down on my bed and that’s when the seizure started. My leg started moving by itself and I tried to stop it but I had no control over it. My arms would shake too but I couldn’t do anything about that either. I just had to wait until it stopped. A couple of minutes later it did.
That feeling of not having control over my own body was so frustrating and infuriating. At that moment, that was the worst part about it for me. I was in my bed and my mother was with me so I was safe. I knew I wasn’t going to fall or hit my head, but I wanted it to be over. I wanted my arms and legs to stop moving but they just wouldn’t. That is such a horrible feeling, not having control over my own body. When it stopped, I was exhausted but this time I knew why, because for the first time I remembered and still remember the seizure.
The next time I saw my neurologist he increased the dose of my medication a little bit, which was enough to control my epilepsy up to this day. It has been eight years and seven months since that seizure and I haven’t had another one since then.
I really didn’t think it was possible to live a seizure free life again, but there I am, doing my best every day to continue to make that possible. I don’t think I’ll ever live without some fear of a possible seizure, but it’s not a constant fear. I feel safe enough to have tried to drive, get on a roller coaster, and gone to sleep a little later sometimes, but I don’t let it become a habit.
In these eleven years since my accident I have learned to work hard and be stronger than I ever thought I could be to get back on my feet and that strength is what has helped and made me successful in my fight with epilepsy.
Unstoppable María 