Beckers

 

Muscular Dystrophy.

It’s not something I’d necessarily recommend as a defining characteristic of a person, but when you have it it’s not like you can ignore it either. I’m not my disease and it’s not me but...

It’s like rolling a 5 on your out of 18 strength stat in a role playing game, knowing that it’s only going to get lower as time wears on. It’s not something you can simply ignore when going toe to toe with life’s problems.

One, out of necessity, has to rely on intelligence instead, or wisdom, or charisma. Dexterity is there just to keep you from falling on your face too many times, which kind of happens anyway. It just means that mostly your falls aren’t directly onto your face. Which hurts. Ask me how I know.

Even when I was little my parents noticed I fell down a lot more than other kids. When I went to a specialist on neuromuscular afflictions and they said I had a particular technique to getting up off the floor that was unique to my strength level. I don’t remember what they called it, but I remember the conversation. Not because it was particularly devastating or anything, but because I tend to remember a lot of stuff.

Like timing a race instead of running in one, because I wasn’t going to go for another participation trophy. Especially not at recess. Dodging out of the way the same direction as the runner and going down hard. Heading back to class cradling my arm, only to have a teacher stop me as I’d obviously (to them) broken my arm.

I tend to have a high tolerance to pain. At least internal pain. My appendix nearly exploded and, once again, had to be lead to hospital before anything really bad happened.

Usually I’ve been fairly fortunate. Not lucky, since I don’t believe in that. But given all that could happen, I’ve weathered my storms fairly well and not too much worse for wear.

Granted I’ve been suicidal before. Not depression directly about the situation but more chemical imbalance makes you want to die because your wiring is messed up. Like ‘pull out the panel and redo the whole thing’ not simply a few reds and blues crossed. I survived that. But mostly by being in the right place at the right time and still having a will to live even when everything in my brain was screaming the opposite. It’s a hard thing to explain to people who haven’t been there, but I’d liken it to fighting for air underwater, but the opposite.

Another fortunate thing that happened to me was Drama class. In grade 9 I had a free period on my schedule and got signed up for the class at the last moment. Until that point I was quite shy. Now. Not so much. I’m still quiet but I don’t mind speaking up in a group or saying things in a public setting. Something I’d recommend for most people.

Back to the Muscular Dystrophy, which of course, never actually went away. Some things get harder. Like getting off the floor without help. Then they get tiring. Then they get really difficult. Then they’re basically impossible. Now imagine the same thing with stairs. Heavy doors. Driving Safely. Getting into and out of a vehicle. Getting up from a chair. Walking on uneven terrain. Walking on slippery terrain. Getting dressed. Standing for long periods of time. Standing at all.

I’m at the point now where I haven’t stood up for six months. That’s not something that most people can probably wrap their brain around. I’m either in bed, in one of three chairs – computer room, living room or wheel chair or in transition in a sling or a shower chair.

I can push a wheelchair but not very far. Maybe enough to get around a house, or a section of a larger store, but that’s it. Mostly it’s just a way to burn out very quickly rather than something I make a point of doing.

Besides, I’d need help to get into the wheelchair from anything else, so it’s a kind of situational mobility at best.

Now this is probably where most people would think that I have some desire to walk again or run or do cartwheels. But honestly I don’t. It just doesn’t interest me. Sports were never my thing and running around getting tired doesn’t seem like a thrilling use of energy for me. With a bit more mobility I’d want to cook and clean again, but other than that it’s hard to want something you’ve never really done.