The Scary Moment That Made Me Stop Hiding My Epilepsy
Dear Juvenile Myoclonic Epilepsy (JME),
I don’t know where to start when I begin our story. It’s so personal that sometimes I feel like I’m talking about an old friend more than I’m talking about… well, you.
It took me so long to talk about you at all, that there are still times I don’t even know how to talk about you at all. When you first came to visit me, I didn’t know you were there at all. I just remember the feelings of frustration and extreme irritation, which were completely normal for a 14-year-old girl.
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All the doctor’s appointments that were confusing to me, but seemed so completely necessary to everyone else in my life, I tried to keep them a secret. Just like I tried to hide you. I was a child still, not ready to accept that I was changing in yet another way. I only wanted to focus on what I could control, and I definitely had zero control over you and what you were doing with my mind and my body. I ached for some type of normalcy in my life, but you were just not going to allow that to happen.
The doctors diagnosed me with you, but they didn’t know the type until much later. Sleep studies, EEGs, and more tests. Different medications when one didn’t work the right way and my life began to seem like an upside-down merry-go-round. My high school was notified about you and I looked for a hole to crawl into, hiding you from my friends, hoping that my teachers were unaware.
In 2005, long after being diagnosed with you and finally given the type for quite a few years, I was on my way to the hospital in an ambulance in a state far from my family. They didn’t know I was on my way there and they wouldn’t know until I was out and back to where I was staying.
That woke me up: being far from my family, and having one of your appearances. I hated you for so long; I hid you from the world. Then I realized if I kept on like I was, that you could do far more than just “embarrass” me a little to someone who was uneducated about you. I finally found a better doctor, moved back to where my family was, and got medication that would help me properly. Since then, I haven’t had but a few minor appearances from you. But I know you’re still there.
You’ve been with me for 22 years now, almost 23, and I’ve learned a lot about you and from you.
Thank you for allowing me to do all I have with you. While I could do a lot without you, I do plenty with you as a part of who I am. Let’s keep our relationship just the way it is now. I’ll do my part, and you stay just how you have been.
No rearing up to remind me you’re there… I can feel you there.
Sincerely,
Suzi
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My name is Suzi and I’m 35 years old. I’m married, I have a 4-year-old little girl, and I’m currently working at an elementary school. In the fall I’ll be starting my teacher certification courses so I can teach K-2. For now, I’m enjoying time with my family and friends, and working with the children.
suzette-gorrell