I was really fortunate in my early years that I rarely felt ostracized for my epilepsy. I was lucky enough to have protective friends and naive enough not to notice the mimicking or rude comments I’d hear about later. I remember one friend on the playground in a game of tag saying, “He’s having a seizure! Run!” and having to confront that. I came to notice that years of my childhood and teens were stolen by the fact that I was, and remain, a medical anomaly. One neurologist had the gall to tell my parents I was faking it for attention, AFTER having seen a scan that showed I was having seizures in my sleep. I feel unsafe in hospitals because nurses never believe just how sensitive I am to medication. I lost years to doctors’ offices; my mother, who had largely given up her own social life to become medically literate, explaining an eight pound binder of records to professionals that would not take the time to read any of it themselves. The ego of the first wave kept my family from knowing of the existence of epilepsy specialists for years.…

Our son was born full-term with no complications, weighing 8.5 lbs. He was very healthy and developed on track during his early months. One evening, he dropped his head abruptly about 4 times, crying. Then, he burped. Maybe it was just painful gas. But the next evening, it happened again…and then a third night, around the same time every night. Something didn’t feel right. After some online research, we found Infantile Spasms (IS)–a catastrophic childhood epilepsy: 90% severe developmental disability, 31% fatality rate. But what are the chances he would have that…right? We called a neurologist the next morning and managed to get a same-day appointment due to a cancellation. The check-up yielded very little, and the doctor was just sending us on our way, telling us that we should not worry too much, when my son went into his first ever seizure cluster. We were promptly admitted to a hospital. What started as a 30-minute appointment to relieve our greatest fears turned into a week-long hospital stay that confirmed it instead. His EEG showed modified hypsarrhythmia. Our 5 month old baby was diagnosed with Infantile Spasms and our world changed forever.…

Share your experience:
-Tell us a story, under 400 words.
-Any particular story or moment in your life, related to epilepsy, that taught you an important lesson based in hope, fulfillment, or living meaningfully.

SUBMIT YOUR STORY HERE