No Hands

Warning: This post discusses some of the gory details of progressive MS. If you avoid support groups because it's scary to see people in wheelchairs (and I think that's a perfectly reasonable thing to do, myself), you might want to skip it.

You always read about how people who are diagnosed with MS are afraid  they'll wind up in a wheelchair. That's the symbol of disability, the point at which you go from being pretty much OK to being disabled. I realize it's a matter of perception, and everybody's different. But I've been unable to use my hands, and unable  to use my legs. I've tried it both ways. For my money, not being able to walk is not all that big a deal. Not being able to use my hands is far more disabling.

Not that it's a contest or anything. They both suck. And, unfortunately, they're not mutually exclusive.

Not being able to use my legs means I can't stand or walk, of course. Can't ride a bike (that hurts), can't dance (that really hurts). Hiking and backpacking are out. That's about it. Everything else I wanted or needed to do, I could still do. Pretty much. It might not have been easy, or pretty, but I could do it.

Not being able to use my hands is a whole 'nother thing. Not being able to use my hands not only means I can't do things I used to enjoy, like quilting and calligraphy, or things I did to earn a living, like using a keyboard or a pencil and paper. Not being able to use my hands exposed heretofore unimagined vistas of humiliation; not being able to take a shower or brush my hair or dress or eat or blow my nose or use the toilet without help. If your hands and arms don't work, you're pretty much screwed.

I had trouble getting doctors or therapists to take nonfunctional hands seriously, but show up with a mobility problem and they were all over it. Maybe because the mobility problem was one they could solve.

There are lots of solutions for legs that don't work. There are canes and walkers and crutches and wheelchairs and ramps and curb cuts and elevators and large toilet stalls with grab bars. People can see that you're disabled and, if they're so inclined, make accommodations. If your hands and arms don't work, you just look inept and clumsy.

Having scribbled all this, I'm having second thoughts about putting it up. My point, supposing I had one, was to compare the relative disability occasioned by loss of function in various limbs. I just thought it was interesting, in a bizarre and twisted kind of way. It wasn't what I would have expected.

I don't mean to scare anybody. (You'll notice the warning at the beginning of the post.) I realize there are people who find it scary to think about the possible consequences of MS. Who wouldn't? Having a progressive neurological disease is scary, for real, but not everybody with MS will wind up where I am. Not everybody will get the opportunity to compare life with no  hands to life with no legs.

I definitely don't want anybody to feel sorry for me. What would be the point of that? It doesn't help me, and would just make you feel bad. Don't do it. While I don't consider MS a gift and I'm not typically one to look for the silver lining in every cloud, I do realize that I'm lucky lucky lucky. As much as I would rather they didn't have to, I have an amazing family able and willing to take care of me. I have a place I can live, food on the table. Life is not what I expected it would be, for sure, but it's good. On the whole, all things considered, most days, it's good.

Oh what the heck.