It’s there. A silent shadow, tailing me wherever I go. Always at the back of my mind, the disability is branded onto the MedicAlert bracelet I wear around my wrist like a shackle: Epilepsy. Around the word is a series of numbers, a code that someone could use to find out my medical history and medications were there to be an emergency.
I suppose I should be grateful. There won’t always be people around who know what I go through every day, who understand what to do when something happens. It’s more of a tag than a shackle, I tell myself. Really only a means of identification. But if it’s a tag, then what does that make me? An animal, tethered forever to a condition that has almost killed me before?
No. My name is Megan, and I am much more than that. Perhaps you, reader, have once been in my position-maybe not with epilepsy but with anxiety or depression or diabetes. Maybe you have also felt the strange sense of isolation, the weird feeling like everyone is looking at you, talking about you. Maybe you’ve been on the receiving end of some measure of pity wherein the giver didn’t know how to act so they just said “I’m sorry” and walked away. And you, in response, have thought-”I’m sorry, too, but telling me that you’re sorry won’t help. I’ll still dream about a life in which I don’t deal with this”.
If this is you, and you are still dreaming or feeling alone-I’ve been there too. Felt the repercussions of life’s changes. You aren’t alone, but there is something holding you back from enjoying all that is around. Like me, you bear a tag. But you know what? You can stop seeing it that way. You can choose freedom over prison. Our disorders do not define us, own us, or tell us how we have to live our lives. Here’s the cheat key-find something you love, something that you always have loved, and grab hold of it. Don’t let go. And let that thing that you love define you instead.
For me, that thing was music. When I was diagnosed, I went through periods of anxiety and suffered from social isolation. But after a few years I decided that I was done-being diagnosed had changed me in the way that the hammer can change the burning iron, and I was in no way completely forged. Instead of becoming ‘Megan the Epileptic’, I chose to become ‘Megan the Musician’, and dove after something I loved. Epilepsy sucks, but it gave me music. Through this, I found my way of coping. Sure, I have to take daily medications and I tend to avoid dances and laser tag because I’m very photosensitive, but I am also a very successful French Hornist and choose to define myself through my hobby rather than my disorder. Through music, I found solace and peace-balance, I think.
Because of this balance, I still walk the halls with a secret sense of pride. Okay, maybe it’s not so secret because I’ll happily talk about music with you if you get me started, but I have broken the tag-I’m happy. I push epilepsy out of my mind because it can’t touch me while I have my protective shield up.
So find that thing that you love, reader. Don’t allow the diagnosis to define you. Find something to re-forge yourself with, and embrace life through it. That is how you own your disorder. You know what? Let me rephrase that:
That is how you own who you are.