You Are Not Alone on Your Journey

Joshua felt alone during his journey with epilepsy and seizures so he is sharing his story to help others not feel so isolated

By Joshua Greenwald , New York

Person with Epilepsy

Thursday, September 21, 2023

A brain hemorrhage at six weeks of age caused me to have seizures as a child. I was on an anti-seizure medication until I hit adolescence. When I was in my 20s, I was living overseas, and I would occasionally experience brief episodes of temporary amnesia. I kept it to myself, thinking nobody would understand it. 

When I was 34, my wife first witnessed such an event, but we chalked it up to just a funny thing that would happen. We didn't think I needed any specific medical attention. I have had five more episodes in the ensuing ten years. The most recent was in November of 2022. When I described it to an acquaintance, she said it sounded like a seizure. Due to my medical history, this made sense, and so I started talking to doctors. I was finally diagnosed with focal onset impaired awareness seizures on July 13, 2023.
When I got my diagnosis, I felt a sense of relief because it was the end of a long, lonely journey. I had felt so alone for years, not being able to share these events that were happening to me and not knowing what was happening. Now that I know, I can embrace my condition and work toward a healthier future.
Having had brain seizures as a child, I know it can be a frightening experience, and there can be negative responses from peers. I was bullied because of my epilepsy. I want to let kids know they are not alone and are good people who can make wonderful, amazing contributions to society. I would encourage parents to tell their kids they are unique and loved. Parents of children with epilepsy should educate themselves as much as possible. As adults, we should embrace our uniqueness and learn to love ourselves.

I want to share my experiences of loneliness so that other people may recognize their own experiences and seek proper professional care. We all deserve to find a loving and supportive community and to know we are not alone in our journey. The public should have more awareness so that our friends, family, and coworkers can recognize a compromising situation, like a seizure, and know how to offer assistance.

Reviewed By: Sara Wyen

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