Are you sure you want to read this?

A friend from work recently accused me of running “a secret blog." She was joking (I assume). It was a conversation via IM so I guess she could have been serious.

I told her that I need a place to curse and act out, but the blog isn't really secret. I would not mind if everyone read it. It would give me a bully pulpit.

I am not real sure how to bring it up, for one thing. But to be honest, I can't imagine that my co-workers all want to read about the crap that goes into having Friedreich's ataxia.

Take this week, for instance: At least 35% of the times that I have gone to a men's room at work, the wheelchair stall has been either occupied by a non-wheelchair user or dirty. The dirty in question include bodily fluids and newspapers covering the floor and hanging on the goddamn grab bars that I need to grab to keep from falling.

I see the folks I work with, so I know they are intelligent adults, but in the bathroom some apparently revert to childhood.

As least I am getting better at reacting. I went into the men's room today, saw six empty stalls that I cannot use and one wheelchair stall that was occupied by a non-wheelchair user. I turned around and said to Claren as we were leaving “Un-fucking-believable.” I am sure the abuser did not hear me, but one of these days, he will.

Better yet, take last night, as another for instance: I woke up about 2, had to go to the bathroom and did not get everything lined up with the urinal. I tried several alternatives: pulling up the covers, putting on sleeping pants, going commando in said sleeping pants, but in the end I had to take a shower. I figured I better alert Mom and Dad or they'd hear the water and be freaked out.

I got into the shower OK, wrestled with the nozzle, lost, shot myself in the face twice, then washed and reached for my towel. It wasn't there, and towels are not a convinient thing to reach, so I got out of the shower soaking and managed to grab a few washcloths, which dried the brunt of me, and then I got a towel.

I finally managed not to leap out of my chair when I heard Mom outside the door. She had gotten up to clean my bed so I could go back to sleep, which I did.

See! I mean, sure I have plenty of hilarious escapades and humorous asides, but I am not sure I want to read about the crap that goes into having Friedreich's ataxia.

I have to write about it, though.

All through the shit of last night, I didn't despair or cry or even want to. I just thought: OK, here is what I will write ...

Why write something public (even if it is sort of secret)? Maybe it'll help someone. Maybe they'll see that their experiences with FA aren't unique. Maybe Mrs. Gates will read it and say, "Oh, that Matt, he deserves millions of dollars. Write him a check, Bill dear."

In the end, that doesn't matter. I write because that is what I do. It keeps me sane and alive, and hopefully not too bitter, in the face off a really awful disease.