Stephanie’s Story

I remember when I was a little kid, I would be watching television and there would be this commercial that would frequently play about these kids on the playground. The little boy started having a seizure, and it was all about how to properly help someone in that position, and I remember thinking “wow, that would be really scary”. I was right. It is.

At the age of 15, I woke up in the emergency room. I was pinned to the bed with a five-point restraint, my parents standing over me, and having no recollection of how I got there. To this day, it is one of the most terrifying moments of my life. I listened as I was told that when I was baking a cake at home, I started spinning around in circles. My mom laughed at me and asked what I was doing, and that’s when I dropped to the floor. I don’t remember the ambulance ride, I don’t remember getting to the hospital, and I don’t remember being so combative that I ended up biting the nurse (thus the five-point restraint). Exactly one week later, I had my second tonic-clonic seizure and after an EEG, I was officially diagnosed as epileptic. Suddenly I went from this typical teenager who was trying to fit in at a new school, to someone who needed constant supervision, was being put on multiple medications, and who was just trying to play it off as no big deal.

My experience in high school drastically changed. My seizures weren’t under control, so I was frequently having them at school. Being carried out of your classroom by paramedics isn’t exactly a shameless event. I have smacked my head on the corner of a table, bounced my head off the pavement, and woken up with more bruises than I can count. People started treating me differently, I couldn’t go to the bathroom by myself, and even my friends started treating me like a ticking time bomb. Still, I tried to convince myself and everyone around me that it was no big deal.

Fast forward 12 years later. I am happily married with an adorable 4-year-old son, I am a university student, and just this year, I was finally able to get my driver’s license. I have been seizure free since June 2019, and my familiarity with my epilepsy has skyrocketed. After years of hard work, and learning to listen to my brain, I am lucky enough to be able to detect an oncoming seizure hours in advance and take the proper precautions. Not only that, but my husband is able to detect them as well, sometimes before I catch them. I am so incredibly fortunate to be able to have my epilepsy under control, but it was by no means an easy road, both physically and emotionally.

I have been told many things throughout my journey. I’ve had people say, “you’re a freak”, “you’re just a bum”, “you’re stupid”, and the one that hurt the most, “you could never be a good mother”, which was accompanied with a threat to have my son taken from me out of fear. All because I’m epileptic. I proved them wrong.

But look at me now.

I’m not a freak, I’m a retired break-dancing champion. I’m not a bum, I’m extremely hard-working and one of the most determined people I know. I’m not stupid, I have accomplished academic successes that I never thought I could. I am not a bad mother. My son and I have a great relationship and he’s the most bubbly, empathetic, and bright kid I know. I still face a lot of misconceptions, and I still wait to tell my employer that I am epileptic until after I am hired, but I will never stop proving people wrong, not just for myself, but for anyone else who faces these same misconceptions.

To all those reading this, I am fighting for you, I am here for you, and it will get easier. Whether that means it is getting easier to manage, or you are learning to adjust to a different way of life, you are truly stronger than you believe.

The courage of those living with epilepsy,

inspires us and fuels our journey.

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