I don’t want my disability to be what makes me memorable

I have a kilt. It’s just a simple, olive-colored utility kilt, and I don’t wear it because of family or cultural tradition. I wear it because it’s comfortable, looks right with my knee-high compression socks, is nearly perfect for wheelchair use, and quite frankly, makes me look even cooler than usual. It’s also a great conversation starter — or it would be, if anyone ever noticed me wearing it.

To be fair, if I have it on while in my wheelchair, it might just look like I’m using a lap blanket, but I don’t think that’s the entire reason. If I’d worn it when I was using a cane or a rollator, it might have gotten more attention, but maybe not much more. As my primary progressive multiple sclerosis has taken its toll on my ability to walk and introduced me to different mobility aids, I think those devices have ended up taking the spotlight. No one notices my kilt or quirky T-shirts because, as far as they’re concerned, I’m wearing a wheelchair.

OK, that was just the best example I could think of. I’m not actually very fashion-conscious, but I’m becoming conscious of how my disability and the devices I use to compensate for it are what people see when they look at me. I sometimes feel like a ghost in a movie or TV show when someone addresses me directly. I might find myself looking left and right before pointing at my own chest. “Wait, can you see me?”

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Finding a middle ground

A few months ago, I wrote that my disability sometimes acts like an amplifier, but it also seems to have an ability to mute. I don’t particularly like when someone speaks for me, or when I’m spoken about in third person, but I can see how people become resigned to it. I suppose there’s some comfort in being able to disappear behind multiple sclerosis (MS), but I don’t want to be either memorable or forgettable because of it.

I’m not sure where the middle ground is, either. I realize that just about anything I say can sound shocking if you didn’t expect me to speak, but it’s a goal of mine to not be remembered for being rude. I also don’t want to be muted into social isolation. I just want to be me, but the me I want to be doesn’t exist anymore. I’m me with MS now, and while that may be the middle ground, it can be some very shaky ground.

I might not like the fact that I have MS — and in case you were wondering, I don’t like it at all — but I do have to accept that I have it. That includes accepting that others may not know anything about it, and that I bear some of the responsibility for educating them. MS has taken so much from me, so it’s only right for it to give me something, too. Extra responsibility wasn’t exactly the “gift” I was hoping for, but I suppose it’s better than obscurity.

I don’t want to be memorable because of my disability or the devices I use to stay involved in my life. Maybe if I drove my wheelchair at its top speed into a breeze stiff enough to make my kilt fly up, then I’d be referred to as something other than “that guy in the wheelchair.” It would probably be “that guy in the wheelchair who was arrested for public indecency,” but who knows, that might raise more awareness than the usual methods.

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