Sunday, January 29, 2012
Epilepsy Awareness Nails
In case you can't tell, the ribbons on my nails are purple, and purple represents epilepsy. Today my nails have a very special meaning, and I'd like to tell the story of my personal journey with epilepsy. So here we go...
I was diagnosed with Juvenile Myoclonic Epilepsy in April of last year after I had a grand-mal (big) seizure for the first time. What I didn't know was that I'd been having seizures for years before that. I was scared to find out that there are over 40 different types of seizures, and I have three different kinds.
The main type that I have are myoclonic, which means 'jerking' and they effect the top part of my body. I used to have them every morning in sixth grade, and they continued all the way up until my diagnosis. Each individual seizure lasts a couple seconds, but I was having them for up to a half an hour everyday. I had always thought they were normal; everyone has those jerks when they're tired, right? I guess not.
The worst part about the myoclonic episodes are that I'm conscious and I know what's going on. I can feel them coming because I have 'auras' (something that warns me when a seizure is about to happen), but by the time the aura comes it's too late to do anything. Part of my seizures are that I feel extreme fear throughout the episode, and it makes me scream, whimper, and cry sometimes when they happen. I've never seen myself have one, but when I have a serious one I can feel my eyes roll back and my arms and chin come into my chest and twitch. It's painful and scary, but once it's over, it's over, and I can go on with the rest of my day.
Something that surprises people is that I am not triggered by flashing lights. In fact, flashing lights are one of the least common triggers for people with epilepsy. I am triggered by sleep deprivation, air deprivation, and strong emotions.
I am now on medication and the seizures are much more controlled, but I still feel handicapped by the stereotypes that society has given me. There are days that I feel like it's holding me back, but I've learned that this disorder is a gift. Who's to tell me that I can't be the next da Vinci of nail art? Or that I can't light the world on fire like Alfred Noble? Who knows, maybe I'll rule the world like Caesar and they'll make a statue of me like Alexander the Great. There's no reason that I can't because all of the people above have made history and done incredible things, even though they all had epilepsy, too. Over the course of the year, I've learned that I am Hailey, and I have epilepsy. But epilepsy does not have me. I am living day by day, seizing each one as I go.