I Have Epilepsy, but It Doesn’t Have Me

I was diagnosed with epilepsy when I was 25 years old. I had a new job in a new city and my own apartment. I was hospitalized and experienced an anoxic brain injury and I was given two hours to live on March 20, 2012. My injury was so severe that my brain lost the oxygen and blood flow it needed to function. I survived, but I lost my mobility, speech, and sight.

As a result of my brain injury, I was diagnosed with refractory focal epilepsy. As I got better over the years, my vision returned and so did my speech and motor skills, however, being diagnosed with epilepsy throughout all of this was devastating. My recovery from the injury soared, but my seizures held me back, especially emotionally. It reduced my confidence, and I always found myself thinking, "what if I have a seizure?"

For a while, my seizures went away, but then they returned with no clear reason why. When this happened, I was hurt. My recovery was progressing so well that I didn't expect a setback. I eventually found the strength to discover the new me and find my purpose with a life of seizures. I still have moments of sadness, but I understand that my journey is bigger than me, and I must confidently stay empowered to encourage other people. Even though I am susceptible to having a seizure at any moment, I have learned that fatigue is a trigger for me. Getting an adequate amount of rest is important. Even when I'm not tired, I try to rest.

I don't let having epilepsy limit me, but at the same time, I have learned that I have limits. I have faced challenges and had successes. Talking to my doctor, reading the stories of other people, and paying attention to myself have helped me to navigate my life with epilepsy. I count each moment and day that goes by when I don't have a seizure as a success.

Having epilepsy has introduced me to an entirely different world. It's a new world, but it's my world! Despite my seizures, I try to have as full of a life as I can. I make it a point to be joyful and appreciate every moment. Having epilepsy is still hard for me, and I shy away from some activities, so I've tried to find new hobbies and interests.

If you or anyone you know lives with epilepsy, be encouraged to open communication with your doctors and loved ones for new things to try and positive feedback. I have epilepsy, but it doesn't have me.