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Sunday, February 11, 2007

"You're the clumsiest paraplegic I ever met"...

....he said, leaning down and handing me the item I just dropped.

We met, eye to eye. He, the paraplegic, was in his titanium wheelchair and I, the quadriplegic, was in my titanium wheelchair. And, in that moment, I had to make the decision again, the one that I make over and over again since my spinal cord injury worsened a few years ago.

Do I tell the truth and say I'm a quad? Or do I laugh my hand and arm impairment off as clumsiness?

The decision is different depending on the context. Some people freak if I tell them I'm a quad. Others listen quietly. Some hotly deny it's permanent or insist that it's a matter of willpower for me to be a paraplegic, even walk again.

But this guy is another person with a disability, so I decide to tell the truth.

"I'm a quad," I say.

"I know. My best friend's a quad," he replied. "So what the heck - want me to put that on the counter for you?" And he took my items and put them on the counter at the wheelchair tennis tournament. When he asked my level, he whistled. "You do great."

"I'm a jock," I replied. "I muscle through everything. But I'm clumsy-"

"Yeah, a real clumsy para," he said, winking at me. "But you could look at it this way. Maybe you'd be better off being a really graceful quad."

Now, in a fairy tale, that would be the end of it. From this incident six months ago I'd accept that I'm a quad and take that as a compliment from a Paraplegic Prince and move on.

But that's not what happened. On Friday, Meredith comes over and I say something about my "clumsiness". She looks me in the eye and says "You're not clumsy. You're a quadriplegic." I roll around a bit, mulling that over. Then she repeats it. (It can really put a kink in denial having someone around who has a PhD in Sociology.)

"OK, OK," I say.

She rolls her eyes. I can understand that. She has the disadvantage of not having a wheelchair to roll around in.

"OK, I won't say that I'm clumsy anymore," I say.

"Good. Because you're not clumsy. You're a -"

"Quadriplegic," I say. "Incomplete. And I might get function back."

She rolls her eyes.

"Or not. It's not like I'm sitting around waiting for that to happen," I say.

But after she leaves, I look at the pictures of myself from my ski trip back in 2001. I can see the difference, feel the difference. My fingers don't move. My wrists don't move. Everything below my elbows is like a trout - I can slap my arms around, train them to work from the elbows, like synchronized swimmers trying to pull off a trick. And there is a mourning and grieving that is still going on.

And the questions remain every time I try to do something I used to. Can I ski? I don't know - we didn't have enough snow on the trip to try. Can I cook? Not yet. Can I turn a page? No. Can I get in and out of bed? Thankfully, yes, with the right equipment.

In fact, I have alot of function that I take for granted that other people do not have. And I don't deny being a quad because I think being a quad makes me inferior. It's because I don't want to be any more dependent than I have to be. My life has become like a ballet, where people dance in and out, helping here, helping there with things that need doing and trying not to trip over each other or me as I try to work and live a life. And I want to tell them all to go home, get their own show. Go pirouette over there!

But I need the help. So there's this delicate balance between accepting help and accepting the limits of my disablity as it now is and it's different than it was a few years ago. Thankfully it won't change again. That's the good news. But the bad news is that I'm done with the rehab and all of the "windows" and "time frames" and now the show must go on. Perhaps there will be more improvement. I'll continue to work toward that. But in the meantime, I have a choice to make.

Only I can decide. Will I be a clumsy paraplegic or a graceful quad?

4 comments:

Anonymous said...

Thanks for sharing.
Janet

Anonymous said...

I'm a quadriplegic too. People don't understand how often we're taken to be paras. I tell people right out that I'm a quad and show them my paralyzed fingers. If they can't handle it, too bad. I have to live with it and it just makes it harder when there's misunderstanding. Do what makes you comfortable.

Al

Rosemary said...

Every once in awhile I read a post of yours that just blows me away. This is one of them. I don't care what you call yourself. You're rougher on your body than I've ever had the nerve to be, and from what I can tell you are one tough lady!!!

I thought sure this was going to turn into a love story ... any possibility??

Ruth said...

LOL you never know - I love men in titanium wheelchairs...