I was diagnosed with epilepsy in 2012 after having what I now know to be focal impaired awareness seizures. I had no idea epilepsy was anything other than visual fits. Doctors kept telling me it was anxiety or depression. I pushed on to see a neurologist who finally diagnosed me with epilepsy. Even though I was diagnosed later in life, my epilepsy changed significantly. I would be nearly seizure-free, then have clusters of seizures, sometimes during the day and sometimes at night. My seizures are sporadic. They seem to happen whenever they want to.
I also had depression after my diagnosis. I was adamant that something was wrong for so long, and no one was listening. When I was finally diagnosed, the weight was lifted, and I was left with this big feeling I didn't know how to handle. I lost my driver's license and a sense of independence. I tried various medications to control my seizures like most people do.
It took me about two years to accept myself and my disability, and I entered my first triathlon in 2014 with my husband teaching me how to front crawl. I loved it, but it took a few years for me to pick it up again as my confidence in myself grew. As the years went by, I felt less embarrassed about having a seizure mid-conversation or during an activity.
I started pushing myself further. I loved triathlon, but could I do more? I have had seizures running before, but I know how to sort myself out. I finally understood my epilepsy and knew when I should and shouldn't race. I did 12 of 12 challenges with various activities to show how people with epilepsy could still have a full vibrant life. Escape From Alcatraz was a long course weekend that challenged me when I achieved my first 70.3 miles. I am even more active now than I was before my diagnosis.
Since I couldn't control what was happening to me, my confidence emerged. I started making YouTube videos about my experiences with epilepsy. Why should anyone else feel as lost as I did? I didn't know about focal impaired awareness seizures, so I wanted to help others.
Partial seizures are challenging to live with, even if you can't see them happening. The internal horror I experienced is something else, so just because you know it's invisible doesn't mean you aren't living with epilepsy. Epilepsy is a challenging condition to live with. People don't always understand this with an invisible disability, but it's constant life maintenance.
I don't want anyone newly diagnosed, going through a diagnosis, or people who want to learn more, to feel isolated. We have a community of others with focal impaired awareness seizures. We get it. We understand the brain fog, the confusion, and the big feelings.
Don't let seizures and epilepsy hold you back; don't be embarrassed. You can still achieve incredible things.