Friedreich's ataxia: The ataxia to the max-ia

I just saw on TV that Ben Affleck has some kind of bond with ataxia-telangiectasia. Apparently, this is nothing new -- it's on Wikipedia, with a Falls Church reference even. And I don't want to criticize, A-T is a totally sucky disease. But, Ben, Booby, have you read about FA?

Wil E Coyote was a super-genius

Sometimes, I do not shower on Mondays.

Now before everyone screams UNCLEAN! I shower Sunday afternoon, go swim, eat dinner, cogitate, vegetate, watch The Walking Dead and go to bed. Plus, I wash up even if I do not shower.

This morning I did shower. And my brother-in-law is totally to blame.

I have a hard time flushing my toilet. I have to lean over the bowl to reach the flusher, and while I am not a germ-a-phobe who worries that a flush shoots up all kinds of bacteria, it still is a little gross to flush a toilet with your face in the bowl. It is also just hard to bend all the way over to reach the handle.

I came up with a brilliant and inexpensive solution involving a C-clamp, fishing line and an eyelet that would have solved all my problems. It also involved a sinker, just for kicks.

I decided to run my plan by my brother-in-law the builder. I didn't even get to the sinker. He just started staring at me like I was insane. Then he started calling it a Wil E Coyote plan and suggested I find another idea.

As I was going to the bathroom last night I thought about Wil E and the Roadrunner, and I laughed. This was bad because I was standing up, lost my balance, peed on my leg and realized I'd still have to shower.

I am totally ordering a C-clamp on Amazon.

This concludes our test of the Emergency Claren System

I just finished getting Claren to speak. Treats were involved, so it was not a problem.

It was a problem 20 minutes earlier when I was on the floor of the bathroom. I don't carry treats with me into the bathroom, and she would not speak at all. It's been a long time since I have been that mad at Claren.

As I have recovered my breath, I have calmed down. She isn't used to obeying me when I am on the floor. I am almost always in a chair. Even with treats I had to give her some encouragement to speak when I was in the out-of-the-ordinary location of the chaise. She was probably a little scared, too.

But she is my service dog, and she utterly failed me for the first time in a long while.

Claren didn't speak readily when I got her almost nine years ago, but since she has shown a willingness to bark when I have her ball and she wants it, when she wants attention, when it's dinner time. In short, when she wants something.

Unfortunately, she did not see any need for me to get off the floor this morning. That was something I wanted.

I was just transferring back to my chair from the toilet, and my legs got tangled up under the shower chair. I called for help, but my sister and brother-in-law were outside, and the little goofs did not hear me. We have good sound-proofing in the house, and my door was shut.

I called Claren and asked her to speak numerous times. Silence. I finally yelled at her and shouted "BED" to get her to go to her bed and out of my sight. She did. I called her back and asked her to speak. Nothing.

I could hear the little goofs, so I called out a few more times.   But no one heard me.

Finally, I slid on my butt over to open the door and called for help. My sister and brother-in-law came and helped me. They are now out running "errands." I won't be surprised if that involves getting some device so I can signal them, maybe an air horn. They felt really guilty about not hearing. But it wasn't their fault. I eon't even blame my dumb dog.

Fucking Friedreich's ataxia.

Enough February

I guess it is a good thing February is so short. I am so tired of its cold. I realize the cold won't end next week when February does, but with March you can start waiting for it to go out like a lamb.

And the Uggs are getting tired of the cold, too. At least that is my thinking because my feet are getting cold almost every day again.  Not as bad as before, but ...

Sickness sucks

I am surrounded by sick people, it seems, and it really makes me sad.

Not cold and flu sick -- although my officemate was coughing more than me today -- things no one likes to talk about: masses and ruptures and failures and lesions.

I'm confident God did nothing to cause any of these. And while I suppose good may come with a disease, I am sure it is despite the disease. God doesn't people to be sick. But ...

I still don't get why God doesn't do more to help people who are sick or prevent illness altogether (just spitballing here).

Illness in others about kills me. I can't do anything. And I hate that more. And most of me wants to remain healthy (except for the massive disease I already have), but a small part of me wishes I was sick and others weren't. As I have said I don't want to be sick, but I think I could handle it better. I also have no one depending on me. Others do.

So until God wakes the f up and gets rid of disease, I guess I'll just be sad.

Use a chair, Gabby Giffords

Gram hated the idea of herself in a wheelchair.

It was good for me or my brother or his wife. But not for her, no sir.

That drove me batty, but she was 95 when she died, and I figure anyone over 85 is entitled to stupid ideas.

Using a wheelchair should be no different than using any other tool. A carpenter who uses a nail gun is not weak because he doesn't hammer nail with a hammer. A person going on a 10 mile trip is not mocked as weak for using a car instead of a bike.

But for some reason, using a chair means you  are not strong, not tough, deserving of pity not a fair hearing.

At least this is what I took away from this story about Gabby Giffords. It's probably not fair. And how can you not love Giffords? Shot in the head and forced to leave Congress, and now back lobbying for gun control. What a story.

But these lines from the story:

“Gabby, do you want the wheelchair?” Kelly asked her.
 “No,” she said. “I’ll walk."

Maybe she wanted to walk for another reason. Maybe the chair is uncomfortable or she stiffens up in a chair.

Maybe.

But I bet that she wanted  to be taken seriously, and people in  wheelchairs often aren't.

What a waste

My current comic book store is a little odd. They are the only shop I have been to that puts aside for you just the comics you subscribe to.

This may sound like a good thing, but other shops will say, "Matt reads Green Lantern; he probably will want this Flash book with Green Arrow in it." Or "Matt reads Avengers comics; I bet he'd like this spinoff." I liked it because the extra books were good reads; it pays off for the store because they aren't giving me these extras for free. I did not have to take them but if I did I had to buy them.

But not my current store. Only what I order. I suspect they order very few comics beyond what are ordered so they don't have extras to tempt folks with.

When I saw my latest purchases, I was reminded of this policy and kind of annoyed. I got Amazing Spider-Man 700, the last Amazing issue but not the first issue of the next series.

My annoyance quickly disappeared, though, thanks to bad art (or at least a style I hate) and the stupidest plot twist I have ever read, and that includes the Spider-Man where he made a deal with the devil so no one knew he was Spidey and MJ and he weren't married.

I feel pretty OK saying what the twist was because the issue came out in December, but just in case: SPOILER ALERT







They kill off Peter Parker. I saw a headline about it in December. I ignored it, thinking it couldn't be really true. But yes. Doc Ock, who was dying, managed to swap brains with Peter. And there was no swap-back. Doc Ock, with Peter's mind, died. Peter, with Doc Ock's mind, lived. The new Peter has all the old Peter's memories and his feelings. But am I really supposed to read the Adventures of Doc Ock?

So stupid.

Swim fan

I have started swimming again.

It'll be fun when it gets warmer; now it is kind of like my own little purgatory.

Being active in the water is OK, but I stop to get my breath and I get cold. The worst is when I start shivering, more from being tired than cold.

But I am sure I have plenty to atone for so I will keep it up.

Work intrudes

My job remains awesome, but ...

I am worried that the writing at work means I am not writing in this blog enough.

 It's not like I am happy or healed or not bitter. Hell yes, I am still bitter. Why shouldn't I be? There has been urine on my hardwood floors the last two days (urinal malfunctions both times).

So what's up with me? Either the work writing or the fact that I am sleeping too much. I am always tired, though. Must be work.

Napping is ...

I teleworked today, finished at 3 and napped for the next three hours. And I am still tired.

I wish I knew when being tired was a function of working hard, which I did this week, or of just being depressed, which I always am.

Doing something would be fun, but who has the energy?

I'm walking

I don't embarrass easily, but this week isn't over and already I have survived several events that I just can't write about.

Work is really busy and each day seems to add a new project to my list. That's not bad, and my bosses all appreciate me and today was the hardest day.

I mentioned years ago that in the "Born Again" story, my favorite comic book ever, a bruised and battered Daredevil says: "I keep walking ... just because it's hard to ..."

That's what I am doing this week, well, not walking but ...

No falls

A few nights ago, I said to Mom while we we're walking with Claren that I hadn't fallen in a while. She responded by rapping me on the head and saying we needed to knock on wood. (She is so funny!)

I didn't count last weekend, when I was using my manual chair, and I went to transfer from chaise to chair and it moved and I slipped to the floor. Everyone had gone to bed, so I slid over to my bed and pulled the chair over, thinking I could use the pole to stand. I tried four or five times and I succeeded only in tiring me out. I finally called my little sister for help on the theory that the longer I waited the later it would be. UGH.

I also do not count today when I went to pull up my pants in the bathroom and slipped. Dad helped me that time.

A fall has to be violent to count.

It is kind of a wonder I haven't fallen recently, I thought this morning.

Every morning, I pull up boxers, then pants, which requires me to stand and hold onto a bar or pole with one hand and pull things up with the other. Every single day, a struggle.