Please help me raise money for EPI 20 Miles 20 Days Challenge!
Your support will help fund epilepsy programs and services such as support groups, education, youth conferences and the only week-long overnight camp in New York State for kids with epilepsy.
Want to get in on the fun? Join my team (Carpe Diem!) and run/walk/bike 20 miles in 20 days!
My Story
When I was young, my sister complained that I often ‘left’ while we were playing. This confused my mother since I was always physically present. I did well in school, but sometimes I’d raise my hand to answer a question, blink and smack my lips, and then say I forgot the answer. I needed a lot of sleep, and occasionally I’d wake up sore or with unexplained bruises. Despite this, everyone thought I was a normal kid, if not a little clumsy, absent-minded, and lazy.
When I was 17 I participated in a school exchange program where I lived with a family in France for 2 weeks. On the last day, when I should have been on a bus to the airport, I found myself in an ambulance instead. While I had no memory of the last 24 hours, I was able to understand and communicate with the EMTs and doctors (thank you Mr. Ham, Ms. Moosbrugger, and Mrs. Brown!) I eventually learned that while putting on my shoes I fell onto a bed and started shaking. This was my first tonic clonic (grand mal) seizure. In the interest of catching my flight, the doctors said I had low blood sugar and discharged me.
When I got home, it was difficult to convince my doctor - or anyone - that my episode was not drug related. I’m sure my lapsed memory didn’t help my cause. It wasn’t until a few months later and another seizure that I was referred to a neurologist. After some testing I was diagnosed with generalized idiopathic epilepsy, which basically means my condition is hereditary, not a result of a traumatic brain injury. Those absent minded moments in my childhood were actually absence (petit mal) seizures, and the sore muscles and bruises were likely from nocturnal myoclonic seizures. I was given medication and left for college a few weeks later.
Over the next several years I navigated an epilepsy diagnosis alongside my transition into adulthood. I changed medications when the side effects were unbearable. I graduated college. I changed doctors when they wouldn’t listen to me. I got my first teaching job and moved to a new town. With every seizure I lost my license for 6 months. I walked to work and to the grocery store. I got married. I had countless EEGs. I found a lifestyle and medicine that seemed to work. I got my license back. Slowly, I stopped worrying that an everyday activity might be too dangerous. When I turned 30, I went swimming for the first time since my diagnosis.
My life with epilepsy is one of success. I had a normal childhood and never worried about the embarrassment and fear that can go along with a seizure. Not every kid has that. For some, the opportunity to attend a summer camp just for kids with epilepsy and free from any stigma would be an empowering, life-changing experience. At my worst, I had 7 tonic clonic seizures in a year, and since 2007 I’ve only had 1. Some people never find a treatment that works for them, or they can’t afford it. This fundraiser is for them. Thank you for your support!
