In the almost nine years that I’ve lived with epilepsy, I have experienced thousands of seizures. Seizures in the comfort of my own home with my husband to protect me, seizures all alone with no way to cry out for help praying that when I wake, praying that I do wake, that I hadn’t injured myself in any way. Seizures at the grocery store, at the gym, during holiday gatherings and special events visiting family.
Dazed and confused, attempting to regain my bearings and my sight as vision is still a blurry smeared mess, I am able to make out the dead silence that surrounds me or muffled whispers among one another. Choosing to stand at least ten feet away from me, staring at me like I might explode or do something inhuman. I gather that those who aren’t used to witnessing someone having a seizure or who have never witnessed a seizure at all, are either extremely curious (we’re human, we’re curious by nature), terrified that a person is having this sort of reaction, or eager to want to help in any way that they can, unfazed.
Once a seizure has subsided, a feeling washes over me like a chilling heavy rainfall, not always, but on occasion. The feeling of embarrassment. Flashbacks of frightened faces, wide eyes as big as golf balls, feeling like a science project being studied as I sit up and the tears stream down my cheeks soon after, wanting more than anything to not be asked “Are you okay?” at minimum twenty times in a day, more if visiting family or in public. Wanting so bad to say, “Don’t be frightened. See me as I am. Not just my condition.”
I came to realize that this feeling of embarrassment, is a common symptom following a seizure. Rather than being swallowed up by the emotion of embarrassment following a seizure, I decided that it was a perfect opportunity to speak up and speak out about my personal journey with epilepsy and epilepsy as a whole. To let people know that, rather than giving up on living a full and productive life, I give my all to live a happy and healthy life despite having epilepsy. If I get knocked down, I get right back up and continue on.
In this way, it plants seeds of education, advocacy, compassion and strips away any stigmas and fears they may have. In addition, it empowers me to recognize the moments in which I feel embarrassed following a seizure and replace it with strength.
Having a seizure is nothing to be embarrassed about. Each of us have a battle we face. It’s how we face it that shapes and defines us.