True Life: Growing Up With Epilepsy


I grew up being terrified to fall asleep. “Que duermas bien (sleep well) more” (short for amore) my mom would say, as she would close the door to our shared bedroom. I'll pray in English tonight, and not in Spanish, I thought as I would feel fear creep up my spine. My earliest memory of seizures was when I was four years old. While kids looked forward to catching up on rest or being tucked in by their parents, I was terrified. Ever since epilepsy came into my life, sleep was never the same. At the time, I was too young to really understand what was happening to me, all I knew was that my grandma called it calambre and my doctor called it seizures.

The twitching always felt surreal. During the first few seconds of my seizures I didn't know if there was a earthquake that was happening or if I was being possessed by a bad spirit--as grandma would say. When it was all over, and I regained consciousness, the left side of my body was always numb and my speech was gone. I couldn't call my mom for help, I couldn't even move my tongue. Confused, to say the least. I would wait in tears for my mom to miraculously come and check up on me to realize that it happened, AGAIN.


For a long time I didn't feel like a normal kid. I didn't know any other kids that were going through seizures; I couldn't share what was happening to me with any of my friends at school because I feared that they would see me different or label me as the weird girl. The one time that I met another kid my age with the same issue was when I was hospitalized at the NYU Langone Children's Hospital for EEG testing. But she was only my friend for the time I spent there, so that doesn't really count right? It wasn't until I made it to college, that I realized how resilient I was during the years that I had benign seizures.


Today, I care more than ever to understand what was happening to me, because just as life made me resilient, I too can help someone else going through the motions of epilepsy. Earlier this year, I was able to attend the FACES Epilepsy Conference.  During my time there, I traveled to the little girl that Ghislaine was back then and I was able to share my experiences with an audience of patients that still have seizures. Most of these patients were working professionals in their mid 30's. Then I thought, my storm wasn't that bad after all.

If you are epileptic or know someone that is, feel free to reach out to me personally. You're never the only one.

P.S. REM sleep protects you from seizures, so next time you complain about your deep sleep, appreciate it.

BLOGGhislaine Leon6 Comments