Wednesday, December 31, 2008

I was looking for sinks, I swear

I don't think it will come as a surprise to anyone when I say that I am not the most experienced fellow in the world. But google's image search just showed me how naive I am and perhaps opened unexplored but icky avenues for me.

I was looking for photos of wheelchair-accessible sinks. In fact, I was going to write all about my search. I found a few ones I like, especially this one.

Then, keeping in mind that I was searching for wheelchair-accessible sinks, I came across a picture of two scantily clad ladies engaged in some behavior that their mothers probably would not approve of.

I was intrigued -- they didn't look like plumbers to me -- so I clicked on the photo and was transported to a hyper-disturbing world, where one can see, for a price, photos of many things that mothers do not approve of. One category of such things is for people with a wheelchair fetish.

I just read a blog post from a woman in a chair about this and learned that people fake being in a chair or dream about being in a chair to float their boats or others' boats.

Eeewwwwwwwwwwwwwww.

If Dad hadn't just taken a shower and depleted the hot water, I think I'd take a shower. Oh God, now these freaks are probably turned on by that image. Ick, ick, ick.

It isn't that women in chairs are objects of attraction -- I know plenty of hotties in chairs. But speaking as a guy in a chair, I would like nothing better than to take a sledgehammer to my chair, except than I could not get anywhere. It doesn't seem that you could build much of a relationship when the thing one person likes is merely a tool the other person uses because they must. Plus, it's just a piece of metal.

I also learned from my one-hour crash course in wheelchair fetishes that it is mostly men liking women in chairs. I feel a little safer, just a little disappointed

Monday, December 29, 2008

Trapper Matt, MD

My brother who also has Friedreich's ataxia once wrote that he wanted, early in life, to be a surgeon because of the doctors of MASH. The FA made him change career choices more than once and now he is an ass-kicking peer counselor.

I liked MASH, too, but never once thought about being a surgeon. Sticking my hands in someone? Gross! I just wanted to be a wise-cracking skirt-chaser.

I do think I crack plenty wise; I crack myself up. The skirt-chasing? Not so much, damn FA.

I have rarely thought that the medical field might be a good one for me. I am pretty sure that hypochondriacs should not be doctors. Imagine this conversation:

    Patient: Doctor, I have had this weird cough.
    Me: Does it sound like this? [Coughs] Because I have had that cough for weeks. What do you think I should do? I am thinking it might be a bronchial embolism. Any advice?

I could not be a disease specialist either. Bad news makes me sad and you can't make jokes about cancer ... Well, you aren't supposed to; some people don't appreciate my talent there.

And if I specialized in a body part or system, that would be trouble, too. I am uncomfortable around way too many body parts. I could be just looking in someone's nose and I would just start to giggle and not tell my patients they were OK.

Even in research there would be trouble. I'd likely cause the resurgence of typhoid by accidentally dropping a sealed sample.

The worst might be Matt as a nurse or a technician. I am thinking of me about to administer a local anesthetic and I sneeze and the local goes in my skull but I can't feel it because I am anesthetized. The patient just looks horrified and I am like: "What? Where is it?"

I think we can all agree I am not cut out for medicine, but this does not stop me from feeling guilty I have shunned a medical career. Whenever someone I love is sick, I start thinking I could cure that. If I had gone into medicine, instead of wasting it in liberal arts, we would have no cancer, no paralysis, no late-night calls that someone is in surgery.

Yes, I am cocky and unrealistic. I am not that smart. But at least I'd be doing something. And who knows, maybe an MD could out-duel FA to make skirt-chasing possible.

Friday, December 26, 2008

Goddamn geese, you have made the list

I have been meaning to start an enemies list. I don't think I have any actual enemies, though.

I did tell someone at work that she could tell people she was on my enemies list if I ever become infamous like Nixon, but that was just because people seem to be so proud of being on Nixon's list.

At the top of my list, at least today: Wild geese.

They overrun work ever winter. Normally, the company hires the Geese Police to "get the flock out." They chase the geese with border collies, who really excite Claren. They haven't been around in a while, though. I am afraid the Geese Police may have fallen under the budget axe.

I pointed out to a guard at work that it was only a matter of time before people start saying I smell. It won't be me. It'll be my wheels because they are covered in goose poop.

This morning I wheeled up the driveway to give me more space to avoid the nasty green landmines. I could tell the sidewalk was an impasseable mine field.

It didn't help. When I wheeled away from my desk, I saw Claren start to sniff at the little green streaks.

Thursday, December 25, 2008

Don't you think I want to stand?

Mass promised to become quite interesting this morning when the priest walked up to the altar with two hand crutches.

He, however, made a long explanation that he had just injured it skiing, and Mass quickly seemed inaccessible once more. The four steps up to the altar, the very words at the start "Let us stand."

This is part of the reason I am a Christmas and Easter Catholic.

There is also my poor hearing and my need for sleep.

It is not that I don't believe in God. I am certain God exists. It is just that I am not always sure God cares for me and I am even less certain that I care for God. We talk, or I rage. God is not too loquacious.

I wish I was certain about God and me, or even pretty sure. It seems to provide an overwhelming sense of peace in a maddening world, one where we went to church and my sister-in-law was OK, we came and she was in surgery, and by evening she seemed to be improving.

Mom told me years ago that she would believe God loves me until I was able to. When will that be?

Wednesday, December 24, 2008

A Christmas story

I was on the family room couch after dinner listening to Mom talk to my brother who is still in an Atlanta hospital with his wife who seems to riccochet between good and bad and leave of us those who love her dizzy.

This brother has Friedreich's ataxia, and his heareing is worse than mine. Mom's hearing is not great either. The point being: Mom needed to concentrate for this call.

I had other ideas.

I had to get up, so she noticed and took the dinner plate off my lap. I did not need her to do that or any of what followed. I am 99% sure I'd have been fine.

I then stood to get in my chair and slipped. I didn't fall and was recovering OK but Mom got up to help me while still on the phone. I then was up and pushed against the couch to go back into my chair. This would have worked except my arm slid past the cushions of the couch and I was stuck in the couch. Finally, I managed to free my arm and sat back in my chair with Mom's help. But I came into the chair at too low an angle so the cushion folded in half under me. I didn't want to stand back up so I put both feet on the couch and lifted myself up to get the cushion to unfold. It finally did, with Mom's help.

Then I left her to talk to my brother, whose wife is better today.

Sunday, December 21, 2008

Oh Holey night (for any bad guys)


In what can only be called a stunning PR gambit of galactic proportions, Darth Vader and the Empire have donated an AT-AT Walker to watch over the nativity this year. By helping defend against Herod's slaughter of the innocents, perhaps the Empire is hoping to put a kinder face on Darth Vader, who had his own slaughter-of-the-innocents issue with the little Jedi.

This is the fourth year of Matt's nativity, I believe, when toys fill in for the Nativity figures I don't have, which is everyone but the Big Three. (Here is last year's.) This year, though, most of my toys are in storage awaiting the new home next Christmas. So this year there'll be no Borg or Buffy, no Superman or Spirit. The AT-AT was too big to store easily. For various reasons a few other toys are at Mom and Dad's to choose from so without further ado, here is my nativity:

Obviously, there is the AT-AT, which provides firepower as well as shelter if it turns rainy. Joseph will probably need to keep an eye on it, though, to make sure it doesn't turn bad. If it does, it should not be too hard to trip. Those things are really cool-looking but look wobblier than I ... almost.

The Big Three are obvious but new to my nativity since mine is also in storage. I realize they are a little big and perhaps render the whole thing a little unlikely. I mean Joseph is almost as tall as the AT-AT, so I apologize for asking you to suspend your idea of reality.

Starting from the far right, there is Strongheart the Paladin and his trusty but wingless bronze dragon, among the last characters to avoid storage. We needed to glue the dragon's paw so he came to Mom and Dad's. My only fear hear is if the dragon eats some of the farm animals. Bronze dragons are, as everyone knows, lawful good, but they are carnivores. And a dragon dinner would cast a pall over things. "Hey, baby Jesus, nice swaddling clothes; don't mind the dead cow. Bronzey got hungry."

Professor X, in front, is almost a staple in my nativity, being the coolest guy in a wheelchair (sorry, Stephen Hawking but he is played by Patrick Stewart). I figure if some shepherd starts belly-aching because he had too much mead and wants to see some miracles, Prof. X can mind-smack him. The tiny version is the only one I kept out for the time at Mom and Dad's.

One of the few new-to-me toys is Iron Man, who came to me when a friend was getting rid of things. If the shepherds are too much trouble for Prof. X, he'll do some mind-smacking of his own ... with a repulsor blast or two.

The Penguin, also new to me, is there in case of rain. He has the umbrella anyway. Mom questioned his place in the nativity because he is so mean-looking. There is that, but he is obviously symbolic that the kingdom of God is open to all, even sinners. i guess the symbolism would work better if I had a prostitute action figure. HINT HINT.

The Shogun Warrior will shoot of his fist at the sign of any trouble. It might not be the most effective offensive tactic, but I doubt Herod, muggers or wise guys will stand a chance this year.

Wednesday, December 17, 2008

I need to be worried about

My sister-in-law is sick, and I am not happy about it.

I like when my family can mainly worry about me. God knows, I give them enough fuel.

Despite my physical problems and enormous load of emotional issues, I suspect I can survive. I can fall and laugh thinking about how it will freak my family out to tell them. And if I do die, why the hell should I care about that? I'll be dead.

But when somebody else is sick or in some kind of distress, I am robbed of the certainty that my family's worries are nothing to worry about.

Now I admit that it is a bit cocky to assert that under normal circumstances I am the one my family worries about, but it's kind of true. Even when things are unusual, I am screwed up enough that people worry about me worrying about the other issue. In fact I just got a call from a sister asking if I was all right.

I am rotten, I told her. I am sad, scared, worried and mad. I am listening to Handel's Messiah and about "the good tidings to Zion," and my brother's wife is on a ventilator.

She needs to get better and fast. Falling is less funny when people have other, legitimate worries.

Monday, December 15, 2008

lf I had a set of wings, man, I knew she could fly

Now I am not in the habit of referring to either of my chairs as a she. Not unless "goddammn piece of crap" is feminine. But today at lunch it was so windy, we were ready to take off, so the title seemed appropriate.

I had to bring my manual chair today because the van's muffler needed fixing. Personally, I liked the throaty growl that escaped from the Dodge Grand Caravan, but no one asked me.

I realized what I hate about the manual chair is not that I can't move cars or break elevators or the exercise. It is the slooowwwwwwwwwnessssssss.


I feel like it takes a year just to go downstairs at work.

Despite the slowness, it was worth it to use the manual today and feel the wind blow me along.

Sunday, December 14, 2008

Back in the driver's seat

I have my latest wheelchair project for oldest nephew.

This is the same nephew who helped me rig up a sail on my manual wheelchair so I could glide effortlessly across the deck at a rented beach-house.

We attached the sail (a towel) at the top of the chair to get the most wind. Unfortunately, some idea of physics eluded us, and we neglected to consider that this would make the chair real top heavy, which it did. It did glide a few feet, then it flipped me over backward right in front of the big window where most of my family was sitting.

I say physics eluded us, but to be fair it eluded just me. He was like 10. I was near 30.

I can't say physics is on my side this time either but I just read about someone doing this: I want to move a vehicle with my power chair.

In the classification of rare diseases with familiar ones, Friedreich's ataxia is Muscular Dystrophy's cousin, and I could not ask for a more generous relative. Well, I could but that would be ungrateful. The Muscular Dystrophy Association gives me money to refurbish my chair annually, it holds clinics and they send me a magazine.

I generally just flip through the magazine, make sure some medical miracle has not been discovered (it never has, slacker doctors). But I always make sure to read the first-person columns they run by people in chairs. I admit that mostly I read them so I can think "dummy. I am so much more clever, cooler and less sappy than that."

That probably is not true in general, but it definitely is not true of the last column's author. In fact, I may have a new crush: Angela Wrigglesworth, the writer and, I just learned, a former Ms. Wheelchair Texas. She has spinal muscular atrophy, which isn't relevant, but one of my sisters has a friend whose daughter has SMA, so I had to give another sucky disease a shout-out.

I'd link to her story, but the magazine, Quest, doesn't post its stories in a linkable way. But it is here, on p. 64, the "Rolling with Laughter" column.

In the story, Ms. Wrigglesworth sees a broken-down car at rush hour, persuades the dubious and obnoxious driver that she can push his car with her chair, and then does - all the way to a service station.

I guess the only question now is: What kind of car to start my pushing career with?

Thursday, December 11, 2008

When you gotta go ...

Fortunately, this is not about me.

I took Claren for a walk last night because when I had the chance to take her out in the morning and at lunch it was raining.

In this neighborhood of unfriendly or absent sidewalks, I just walk in the street and that's fine.

The problem is picking up after Claren. If she goes near the curb, no problem. But farther into the grass can be an issue. I have a few spots where I can reach or there are workable curb cuts nearby so I can get into the grass easily.

Of course, she had no interest in going at the first two designated spots. Then halfway to the third, she jerks me into the grass. I jerked back but then saw she was clearly uncomfortable, so let her back in the grass, where she proceeded to poop between two and three feet from the curb.

No curb cuts nearby. I guess I could have gotten on the ground and crawled into the grass. How would explain that, though, to the people whose front yard I was crawling through. Plus, I would have gotten soaked.

Instead, I called Dad to come up a block and a half to pick up after my dog. He did. Pretty humiliating. Pretty loving, too.

Saturday, December 6, 2008

And another thing ...

Besides not having room to accommodate my dog, a twin bed has other liabilities.

I cannot easily take my shirt off in bed. For instance, if I were getting busy with Buffy the Vampire Slayer and tried to pull off my shirt, I might just tumble right out of bed and if it did not kill me, it would probably kill the mood.

In reality, I was just trying to pull off my long-sleeve shirt so I could snuggle deeply under the covers for a long winter's nap. And I fell into the wall, not off the bed. I don't like to brag but I am pretty good at aiming my falls. That's something, right?

And it was a long winter's nap. I slept till noon. I had wanted to go to a memorial service for a co-worker at 11, but the idea of getting up at 8:30, showering, dressing up was pretty overwhelming. The final straw was when I realized the service was in an auditorium with stadium seating and the only place for me, or any wheelchair user, is behind the first section. That would mean that unless there were enough people to fill the first section, I would be alone. Or someone would feel obligated to sit back with me. Or someone would try to bounce me down the steps into the first section. None of those ideas sounded good, so I slept in.

I hate giving in to my Friedreich's ataxia like that. I would have gone if not for the chair and crap, and I don't like to let them stop me. Not that I knew the guy well at all. But death bothers me, and so I wanted to go to show support, but I think it was a good call to sleep in.

I dreamed of the new house last night. It will be awesome, if my dream house is any indication. The only problems were that I did not have my shelves for toys and that the sinks were too high, I could roll under them fine, but they came up to my chest. Well, one of them did ... the first time. But when I tried to point it out to the architects, who were actually IT people form work, the sink was the right height.

And I really hope that the bidet in the real house is not blue, made of wood and about a foot in diameter.

Stranger in the same land

Surveyors are in the field working, the first step in the transfer of the fields to a builder. I guess signing the contract was really the first step, and Mom did that last week.

I am surprised at how rotten it made me feel. Not just because when I tried to play with Claren in an alternate spot, she rolled in poop.

I had tried to play in the ten we have for Claren and it was OK, but Claren just lay there chewing on her ball. We went to the side yard by the garden, and Claren found a tiny bit of poop that was big enough to smush all over her cheek.

We could have played in the field, I know, and I could have just thrown the ball into the garden, but I figured Claren would not really understand that and would want to run in the field. Maybe it would bother the surveyors. I don't know.

It would have felt like I was trespassing.

Thursday, December 4, 2008

Like the dog who thinking he is going to get tutored

I saw this guy on his way out of the cafeteria as I was on my way in. Not to eat, of course, just to reach the outdoors to take Claren out. I eat at my desk.

He said "Matt!" and started talking. I knew we knew each other, but I was blanking on who it was. And as usual I couldn't hear what he was saying. I think I smiled and said something like "yeah" or "wow."

He said thanks and then said he had a book coming out in August and his teaching gig, so he said he had a lot of irons in the fire.

I suddenly realized he was telling me he had been laid off and I was smiling at him like a moron.

As I was leaving work, I saw the desk of one of my co-workers was empty. Cleaned out empty, no pennant or other personal effects. He told me he was worried.

Layoffs just seem like such a horrendous proposition. Now the people who are left feel maybe lucky, maybe guilty for being lucky, definitely overworked.

And those of us who can't hear well live in dread: Did you say we're inspired or fired?

Monday, December 1, 2008

Let's spend the night together

I didn't sleep well last night. I was awake, it seemed, every hour. I was sure I was sick or something.

What made it bearable was that Claren slept most of the night with me.

I told Mom this morning that I didn't sleep, and she said that maybe it was because you had a big dog in your bed.

If it was, it was worth it.

Claren seemed dubious when I told her to get in the twin bed first and then got in and scootched her over. Actually, the hardest part was pulling up the covers because she was lying on them.

It really felt nice to have her there next to me, even if she did jump off at 4 a.m. and use my crotch as a takeoff point.

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