Thursday, September 23, 2010

Friedreich's ataxia really kind of sucks

My little sister came into the dining room tonight after dinner to tell us how her son, after using my bathroom, was dancing a jig on the floor-to-ceiling Super Pole next to my toilet.

I am jealous. Not just of his dancing skills. Mostly, I am jealous because he had such a successful trip to the bathroom.

Last night, I had to use the bathroom. I slid my foot off my footrest -- also know as my wheelchair, and my shoe came off.

I did not really want to try to stand up without my shoe, so I tried to get it back on. But I really had to go, so I just left the shoe on real loose.

I managed to begin my transfer to my chair safely, but my butt kept getting hung up on the top part of the cushion.

I managed then to raise myself high enough to get in my chair. I lost my shoe and started toward the bathroom. I got in and decided to sit down on the toilet rather than try to stand up with one shoe off.

I managed next to stand up and turn around, slamming my big toe on the shoeless foot into the wall. But I could not get my right knee to bend properly.

Finally, I managed to sort of collapse onto the toilet. I was sort off only on one side, but, you guessed it, I managed to slide over onto the seat. And this is where my nephew again comes to mind.

Ask most people what the tuck rule means, and they will probably say something about football and the quarterback. Not me. I think of my nephew who often needs reminders to push his parts down so stuff goes into the toilet, not the floor.

I need to remember this rule. Actually, after sliding across the toilet, I did try to tuck myself down, but I had to go quite urgently.

And goddammit, after managing all the f-ng things I managed just to get there, my pee went all over my clothes and the floor. It is just so frustrating.

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