Go, FA mice

This has been a crazy year. I turned 40, quit a job where I was loved, took a job that is good and is evolving into something more fun, and moved into a new house with my sister and her family.

My Friedreich's ataxia got worse, too.

I know I am not supposed to think I will get better, but how am I supposed to read things like this from the MDA and think it is just a matter of time before I am running.

Do I maintain hope that I might not need a chair forever? Or do I assume science and medicine will never get it?

And even if they did cure FA, would it help me? Or am I too old to benefit from any cure?

Here's to the future ... I guess.

It's not my Wii skills my nephew likes

In his own odd little way, my nephew is looking out for me.

Last night, he, his dad and I left a family party at Mom and Dad's early and came home. He and I were playing Wii while my brother-in-law was downstairs in the basement.

I was drinking tea and all of a sudden had to go to the bathroom rather urgently. I made it to the bathroom but just to the bathroom, not the toilet.

With no one in the house but my 7-year-old nephew and brother-in-law, I decided to change my clothes myself. I transferred to my shower chair, got undressed and wheeled to my clothes bins to get some clean clothes.

I am not sure how long he was there, but at that point I heard my nephew from my open doorway if I had taken a shower. I told him no, and he asked, well, why don't you have pants on? I told him I had a little accident and needed to change but was OK.

I then heard him giving my brother-in-law a quick recap and telling him I didn't need help.

At that point my sister came in and helped with the cleanup, so I still didn't do anything on my own.

I want to say my nephew came hunting for me because he needed my Wii skills, but I am the worst Wii player in history. He must like me.

Nicked up

It was inevitable, I know. Maybe I should be glad it finally happened. I put a big gouge in a visible door frame. I wanted to throw up.

It's not that I thought my brother-in-law would hit me. He actually spent the day putting up a flat screen TV in my room.

It's just I have tried so hard to be careful and I made it less than three months. Even less if you count the nicks in my door frame.

Bruce should be played in church

I went to Mass tonight, and while I love the carols, this is the song that got stuck in my head. Not that I heard it at church.

I am amazing, but Claren deserves the credit

Claren got two gold stars for yesterday.

First, I went into the restroom, and the door to the wheelchair stall was closed. I went closer, though, and noticed that it wasn't locked or anything, so I figured it was unoccupied. I opened it and waited for Claren to go in, like she always does. She didn't, and only then did I hear the voice saying, "I'll be out in a minute."

I almost walked in on a co-worker!

At lunch, I went for a walk and after Claren did her business, I bent over to get it.

I heard this voice but didn't see anyone. Then this woman appeared -- she must have been across the street when she saw me -- and asked me if I wanted her to pick up the poop. I said no but thanks. She replied, I guess you do this a lot.

When I admitted I do pick up after Claren regularly, she said, "You are amazing." So just SUCK IT, low esteem.

Anyway, she then told me how she is always so happy when people help her. I agreed, but told her I didn't want to make anyone else pick up poop. Again she said, "You are amazing."

Let me point out here that she was quite a cutie.

She also told me that people in her neighborhood did not pick up after their dogs, and they weren't in chairs.

I considered asking if she lives in my neighborhood because I see the the guy across the street walk his dog but have never seen him with a bag. But I didn't.

I remembered this scene from Spider-Man that includes the line "You are amazing." My encounter did not end as well.

Stander pole: Awesome if you like playing Russian roulette

Dancing with death is never a good way to start the day. Your whole day is tainted.

I did not actually nearly die.

I was holding on to the locking curved grab bar that is on the pole by my bed to transfer. I was just getting to my chair when the lock gave out and I flew into the back of my chair.

What is most disturbing about the incident is that the folks who make the Stander pole are so blase about it.

We called to figure out, you know, WTF, and both times they just gave instructions to reset the locks. It worked but for how long? And who's to say next time I won't fall onto the floor and sue their asses? It has happened before.

Also, it was apparently Opposite Day at Stander. The people said clockwise when it should have been countercockwise and vice versa.

The shit of the real world

I have read testimonials from people who say Bruce Springsteen kept them from killing themselves.

I can't say this has happened to me -- never having been that close to suicide -- but it makes sense.

One of the reasons I like Springsteen so much is that he is steeped in reality. The people in his songs -- with a few signifiant exceptions like Born to Run -- don't talk about escape. They are more about finding a way to survive the hard parts of life so they can live the joyous ones.

There's Night, where after-hours keeps the singer alive. "Hell all day they're busting you up on the outside; But tonight you're gonna break on through to the inside."

Out on the Street is the same theme. Friends and fun make work survivable. "All day you've been working that hard line; now tonight you're gonna have a good time."

In Badlands he sings about "Workin' in the fields till you get your back burned," but then asserts, "We'll keep pushin' till it's understood and these badlands start treating us good."

And you know you're not alone in struggling.

Surviving in the real world is a theme that runs throughout his music, and I love him for it.

All that said, today I wanted nothing more than Tracy Chapman's Fast Car to carry me away from my life.

I fell when I was getting on the toilet. Not badly. I actually didn't touch the ground except my feet, but I missed the toilet.

The problem was I was sitting down hurriedly because I had to go to the bathroom urgently, and when I missed and struggled I did on the floor. And no, it wasn't that kind of urgency. What came out on the floor was the real gross kind. Oh shit! That's right.

I knew I needed help so I shouted for my sister. She came in and immediately called for her husband to help with the lifting. We got me up and she cleaned the floor.

Neither should have to deal with my shit. I can and do, but they should not have to.

I am not sure what else to do.

I don't have a driver's license, let alone a fast car so even though it was really cold and gloomy, I went for a slow ride on my handcycle, trying to figure out how to survive in this real world.

More changes

I knew i was I for some adjustment when I turned 40 and started a new job within a few days over the summer and moved few months later. But months later, the changes keep coming.

The biggest one is work. I am becoming the speech-writer for our group, which is quite exciting and cool. But it is a bit more nerve-wracking.

The house is a work in progress. I just ordered a new grab bar after some occupational therapists came over to see the bathroom. I am having some issues getting off the toilet so they helped us find something to help.

I just wouldn't mind boring.

Go, Montana, cut that disabled hunter program

Montana is trying to scale back its program for hunters with disabilities, and the disabled hunters are in favor of it.

It seems that people without disabilities are claiming a disability to get into the program, which allows hunters to use vehicle, shoot elk cow and hunt in places others can't.

The authorities say they see hunters dragging a shot elk over mountain terrain but saying they are disabled.

The program requires a doctor's certification, so the law officers do not feel qualified to question a doctor's note even when they see a person who in no way, shape or form appears disabled.

This does not surprise me. I am confident that not all those with handicapped parking permits have a disability.

I do not blame doctors, who are overworked and want to help their patients.

The problem is people who feel that they are owed everything and are entitled to bend the rules to get what they want. Not just of the disabled hunter program but with almost everything -- the economic problems, executive compensation, terrorism, etc.

Riding an elevator does not require a doctor's note, but I am certain that if it did, I would still run into situations like today.

I pulled up to a packed elevator. No one paid me any mind, so I said loudly: "I'm the one who's supposed to be using the elevator." Still nothing. The people at the front of the elevator just looked at me as the doors shut.

Part of me wants this sort of person to become the prey of a disabled-hunter program. But that would be like snapping the rules in half. So I guess they get away with it. Jerks!

Christmas for superheroes

It's Christmas time, and I finally have my own toys again! Well, some of them. Others, like Buffy the Vampire Slayer and First Appearance Batman remain hidden in a big box I still need to unpack. I have plenty to fill out Matty's Nativity.

The Big Three are back, in original wooden form. This year, though, they are backed up by the Charlie Brown folks. Should Jesus, Mary or Joseph prove unable or unwilling to perform any required duties, Woodstock, Lucy or Charlie Brown are authorized to step in.

On the far left is Teenage Mutant Ninja Turtle Michelangelo. I figured Michelangelo needed a chance to paint the nativity, less depressing than the Pieta.

Next is Space Ghost from talk show Space Ghost Coast to Coast. who will help provide needed publicity for the savior. As Judas tells Jesus in Jesus Christ Superstar, "If you'd come today, you could have reached the whole nation. Israel in 4 B.C. had no mass communication." Space Ghost answers that need.

Next is Green Lantern who will be the heavenly host. This particular Green Lantern came from a friend who reminded recently me of important things. Green Lantern will easily portray angels, and his oath gives me goosebumps: "In brightest day, in blackest night, no evil shall escape my sight; let those who worship evil's might, beware my power... Green Lantern's light!" I like the box, so I did not take him out. It has nothing to do with keeping in Mint Packaging.

Green Arrow is a fast friend of Green Lantern's so he is visiting the nativity, too. He could be a shepherd, I suppose: They both probably used bows. Mainly though, he is around for protection.

We know, thanks to Stargate and other shows, that aliens visited Egypt and built the Pyramids. I don't know if they stopped in Rome and Judea later. I, for one, am taking no chances. Luke Skywalker is there, manning the anti-aircraft weapons.

Plastic Man, in the rear, is mainly there for comic relief. Things get too tense, he can stretch his face into an amusing appearance and make folks laugh.

Wolverine and Beast, just behind Charlie Brown, can be just about all the animals in the stable, especially Beast who changes from monkey-like to feline to other, depending on the artist.

Between them, you can see the front of Professor X's wheelchair and an arm in his trademark blue suit. If Jesus turns out to be a mutant, Prof. X can help mentor him.

Finally, Superman makes his first appearance in my nativity. I just started this year to warm up to Big Blue. He is mainly here, though, in case Lex Luthor time travels back to wipe out Christmas. He can also make the Flight into Egypt a real flight.

Here are the ones from 2007,  2008, 2009 and 2010. These posts also have some background. And God must be amused by this because I have not been struck down yet.

A good day, I guess

Today was full off so many things that were good or bad depending on how you view them.

First, I breathed heavily and for some reason that launched me into the PC tower on my desk. I almost started crying it hurt so much and shocked me. I took the brunt on the tip of my nose and my upper lip. I tentatively reached my hand up, fearing it would come away bloody. Fortunately, it came away clean. The small nose bleed did not start till a few minutes later. And my nose still hurts and coughs up a little blood now and then.

But this injury could be taken as bad or good. Bad because it happened, but good because of the placement. Much higher and my nose and glasses would have broken. Much lower and I think my front teeth would have been at least chipped.

After that I had a good holiday party lunch. Nothing bad there, except I got wine for my gift and I don't drink. But it is a very cool label.

Then I went to the hand doctor. A long wait, but it turns out my finger is not broken. Unfortunately, the doctor wasn't sure what was wrong, but her hypothesis was good. She thinks that I strained the muscle between my pinky and ring finger and that it keeps getting re-strained because my finger is not very strong thanks to Friedreich's ataxia. She suggested I tape it to the next finger and wait a few months.

See? Good it wasn't broken. Not good that we don't know for sure what's wrong and that it'll take months.

I had dinner with someone else in a chair and it felt good to give her solid advice. But she joked about people whose instinct on seeing a problem is to curse. "Hey," I thought, "a little cursing never hurts"

I'm putting it in the good-day category but reserve the right to make changes as needed.

My stupid finger

A few months ago, I banged the pinky on my right hand.

I wondered at the time if I broke it, but it wasn't swollen and didn't hurt bad after it happened. So I forgot about it.

Or I tried to.

I am off to a hand doctor tomorrow. My pinky pain has reappeared a few months ago. I thought it was some repetitive stress injury from my wheelchair or computer, but the pain lingers. Today, I banged it again and for a second felt like throwing up.

We'll see what happens. At least I'll know whether my hand was broken.

Babysat

Last night my sister and brother-in-law went out for her birthday. This meant that I stayed home with the kids. Not that I was in charge. Another niece, who is a freshman at a nearby college, came over to babysit. I just had to not do anything stupid. Well, it worked for about five minutes.

On the way to Mom and Dad's for dinner, I got stuck in the yard. I ran into some stuff, and my wheels sank. I called my older niece but she couldn't pull it out. she had to go get Dad and my manual chair. I transferred into that and then Dad and my niece wrestled the power chair free.