Saturday, February 16, 2008

Oh say can you wobble ...

I am thinking of asking my congressman to propose that Friedreich's ataxia be made the national disease.

It does not discriminate by race or sex, although I read that is rare among Africans and Asians. As long as you get two bad genes from your parents, though, you still win the effed-up life contest.

But I am not even thinking about FA's accessibility to everyone.

It is the way FA allows, encourages even, all your body parts to try to kill you. If that isn't a democratic disease worth celebrating like we do the bald eagle, I don't know what is.

If you name a body part, I will tell you of a nefarious plot to do me in, all of which so far have failed. Elbows: They get banged up on my chair and then I touch one somehow and wince. Wincing, of course, could unbalance me. But the Elbow Plot has been disarmed (HEE) by my seatbelt and tough-as-nails exterior, which allows me to ignore pain. (It's the interior that is as soft and vulnerable as a baby sea turtle just hatching.)

Last night my swallowing system made a run at me – twice; two of my shirts proudly gave their lives so I could live. It wasn't the coughing fits, I am used to them. So is everyone who knows me. Yesterday I started coughing so hard I spit a bunch of water on my desk. None of my nearby co-workers even bothered to look up. One who sits across the way did ask if I was OK. My 5-year-old niece also keeps a close eye when I cough. Well, unless her eyes are closed because she is laughing too hard. I really hope it is a nervous reaction or something; otherwise she is just mean.

I was on the floor brushing Claren and watching Psych last night when I took a sip of regular water (One of my rehab doctors recommended Thick-it, but c'mon! That just looks nasty). The coughing unbalanced me, and I fell, first on Claren, then on the cup of water. I squirmed to get out of the puddle of water and mostly succeeded. My shirtsleeve was wet, so I took my sweatshirt off and wiped up the rest of the water. Then I had Claren bring me a bottle of water using the Velma command – I keep the water right near my Velma action figure – and got resettled. I took a sip and was knocked over by more coughing, this time my long-sleeve T-shirt took the brunt, falling right into the pile of Claren hair that I had just brushed off her. Even after I got off as much hair as possible, I was still grizzly-esque (I tried to find someone to complete the phrase "I was still as hairy as …," but googling "hairy arms" gives you info on whether guys like gals with hairy arms).

My hope, then after all that, is to hear the National Anthem wind up like this: " O’er the land of the free, and the home of the FA."

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