Umm, hi?

You know those scooters that you see in the supermarket? Stereotypically, either an obese or elderly person rides them. But picture a 21 year old with orange-brown dyed hair wearing black winged eyeliner racing by on one. That’s me.

I got a scooter four years ago, but I lost track after two. People assume that I’ve been using the scooter all my life, so they never ask me when I first got it. The thing is, I’ve been fighting all my life not to get one. I wasn’t in a horrible car accident, but rather I was born with something called Charcot Marie Tooth – a disease that weakens my muscles over time. Even I’m not completely sure as to understanding what it exactly is, but basically your body works like this: your brain tells your nerves what to do, and they kick your muscles into gear. But have something wrong with your nerves, and your muscles are left to decay. Nothing good sounds about this, plus the fact that the disease shares the same acronym with Country Music Television. Seriously, try Googling CMT and that’s what you’ll find. (I have nothing against country music lovers by the way; it’s just that I’m not heavily fond of country music.)

CMT also affects my lower arms and hands, so my fingers are curled and my forearms look super skinny as if I’m an anorexic supermodel. But take a look at my childhood photos, and you’ll see me standing, walking, and doing the piece sign – everything that I can’t do anymore. Wait. Well, not exactly. My disease is weird in that I use a scooter to get around, but I can walk. It’s more like taking a maximum of five steps as I’m heavily breathing and clutching onto the walls for support, but yeah, I can do it. It sounds so complicated and I’m bewildered by it as much as you are – I haven’t met anyone like me who’s in between the stark line that separates the disabled from the able-bodied.

I know “orange-brown dyed hair and black winged eyeliner” generally screams feminine, but in case anyone was wondering if I’m a man, since I suppose, yes, a man could also have those characteristics, I’m not. I guess you could’ve also guessed that I’m a girl from my name, Ellie, too. So that’s the first thing I should mention about me: my name. And as to why I’m writing about this, I don’t know, really. I’m not exactly an incredibly positive and optimistic person, but I find humor in my life. Some awkward things definitely come up, and maybe it’s funny for me to share them. I love writing and who knows, maybe I’ll find another 21 year old with orange-brown dyed hair and black winged eyeliner on a cherry red scooter through this. That’d be hilarious.

7 thoughts on “Umm, hi?

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