Wednesday, August 29, 2018

My Life in my Wheelchair

I realized that I've never talked about my wheelchair here, which is a little bit crazy considering that I spend 90% of my waking hours in it! I know that I spend a lot of time and energy focusing on how I'm more than my wheelchair, and more than my disability, and none of that has changed. But my life would be very different without my wheelchair, so I wanted to tell you all more about it.

I don't think people realize how incredibly customized power wheelchairs like mine are. Driving a wheelchair isn't like driving a car - I can't just sit in any power chair and be able to get around. My chair has to be sized to fit me exactly. As I get older and require more physical support, too, the amount of customization that I need gets even greater. If I just sit in a regular wheelchair, I wouldn't be able to support my torso without a lot of effort. And then that makes doing everything else harder - or even impossible. And my wheelchair only lasts about five years or so, because it gets difficult to replace broken parts after that. So every five years (give or take), I have to go through the whole process again... getting measurements and ordering a new chair, waiting for insurance approval, taking the time to go through the customizations, and just getting adjusted to the driving and feel of a new chair.

That's why a broken wheelchair is such a hassle to deal with - I can't just rent a new wheelchair for the day. Customized power chairs are not only extremely expensive (think over $20,000), but also just not easily available. And that's why every time I fly with my family, we have to cross our fingers and just hope that the airlines take good care of our chairs, because a damaged wheelchair on vacation could derail the whole trip.

But the funny thing is - when my wheelchair is working correctly, and fits me well... I honestly don't even think about it. It's such a part of my life that it's just there, a given, something that doesn't even cross my mind. That's how my wheelchair can be such a large part of my day-to-day life, and yet such a small part of my identity at the same time.

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