My name is Ian, and when I was diagnosed with epilepsy I honestly didn’t know what to think. The question floating around in my head was “why me?”. Though it was burdensome, I learned that perseverance is necessary for taking on the unknown. Sometimes in life, we aren’t dealt the cards we want, but what matters most is how you play them. My diagnosis, which came in my freshman year of high school, felt like it would derail my dreams. It was hard in the beginning and I do still have my moments, but it has taught me to adapt to life’s ups and downs. I believe it’s because of epilepsy that I began to connect to community service work during my high school years. The city I grew up in is a bit of a forgotten place with its share of struggles. A position I could relate to when my diagnosis came. Learning to accept my circumstance inspired me to join my school’s Interact Club and advocate for positive change in my community. I started by volunteering…

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…

Our son was born full-term with no complications, 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 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)–categorized as a “catastrophic” childhood epilepsy. But what are the chances he would have that? The next morning, we managed to get a same-day neurologist 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 shouldn’t worry too much, when our 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.…

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