It took me a long time to understand why epilepsy entered my world after being seizure-free for the first 19 years of my life. Truthfully, I spent a lot of years asking myself, why me? I was bitter at first about my epilepsy for quite some time. My bitterness was due in part to the loneliness I was experiencing. I didn’t have the same resources back then that are available today. I felt so misunderstood; however, I went on as if everything was ok. Frankly, I didn’t want to talk about it. The narrative was, ‘Jen has epilepsy, but we don’t talk about it.’ Honestly, that was my fault. I was embarrassed. I didn’t understand the first thing about epilepsy or even know the basics of seizure first aid. It silenced me. It was not until I hit rock bottom in 2017 while attempting to manage my epilepsy on my own that it forced me to reach out. I needed more support beyond my family and friends. It was the best decision of my life. Not only…

  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…

  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…