Tuesday, April 30, 2013

Mustn't ... Squish ... Puppy

Claren is not a huge KennyD fan.
A few days before my sister and her family picked up their new puppy, Kenny, one of my nieces told her not to let me run over him.

I thought she was kidding. But holy cow, it is a challenge.

He seems drawn to moving wheels and is definitely drawn to Claren, who is usually near me.

And he is so tiny. One false roll, and it's bye-bye, Kenny. And as my sister told him tonight, don't get run over; we'd be mad at both you and Uncle Matt.

When my awesome goddaughter was a baby, she too liked to explore around my chair.She got trapped under my chair once, but it was a manual. I would not have squished her.

I am counting on a growth spurt soon to solve the issue. I cannot be trusted to drive safely.

Sunday, April 28, 2013

New rule

Everyone knows that breaking a mirror means seven years of bad luck, but I have it on good authority that it is good luck to break a two-sided mirror by pulling a super pole into it.

As proof, I point to the fact that I am writing this and not dead or in the hospital.

As I was getting ready to shower last night, I tried to adjust the bar on my super pole. Instead I pulled it over. Really.

I have been wondering what the lifespan of super poles is. Apparently, about five years or so.

Shattered mirror flew everywhere. Something, maybe the pole (I can't quite remember), rested on my hand and pushed the joystick so I headed into my toilet. I was worried I was going to knock the toilet off its foundations, but I managed to stop in time.

I was totally fine. I was still buckled into my chair and the pole missed my head. But the noise.

It may have shaved a few years off my sister's life. She was in my room at the time, and rushed into the bathroom, grabbed me and kept asking if I was OK. My brother-in-law appeared quickly, too.

I have a new pole on order, and the only problem now is I can't see how beautiful I am.

Thursday, April 25, 2013

I'm Batman

I came to this realization today as my little sister was dealing with a swollen knee she didn't remember hurting.

Yes, I have tons of injuries, many I don't remember doing. And yes, I do have Friedreich's ataxia.

But my body is remarkably resilient. I twist my neck, my knee, my wrist almost daily, yet I wake up the next day ready to go.

And that's with FA.

Without it, I am certain I'd almost be a superhero. I mean, not Superman, of course. He is an alien. But Batman? Getting the most out of a human body. That's me.

Tuesday, April 23, 2013

Properly equipped, but I too have penis envy

I was watching a rerun of The Big Bang Theory, and in it Amy (she'll always be Blossom to me)  asks Penny if she believes in penis envy. As Penny hems and haws, Amy admits she'd like a penis. She hastens to say that she wants a penis for convenience, adding "You can't deny that, by comparison, our internal plumbing is extremely high maintenance."

I have zero experience with the internal plumbing of the ladies, but as I understand it, they sit down to relieve themselves. I should, too.

Should, of course, is the operative word.

But it takes so much longer. Double the standing time, I timed it.

And it isn't really that much safer. Sure, my legs won't buckle, causing me to fall midstream if I am sitting. So from a laundry standpoint, sitting is better.

But I have to transfer to the toilet and then back to the chair. Those can be tricky transfers. They have foiled me more than once, usually on the return to the chair.

I guess I really have balance-envy, but who's heard of that? Is that really even a thing?

Saturday, April 20, 2013

Wheels on the ground

I really should have worn a belt.

That was the thought pounding through my head as I began my day of testing tricycles.

Mom, Dad, Claren and I drove down to Lynchburg, Va., to meet the wonderful folks with Wheels on the James who work with a company called Ambucs to provide trikes for people like me.

Well, OK, younger people like me, usually way younger.

Everyone there looking at trikes was looking for their kids. But there was one guy with a trike who was 31. I am actually getting his (more on that later.)

It was pretty awesome. Everyone there was great and kind and interested. The only bad thing is that the day convinced me that I need to give up the idea of riding a foot-cycle. I had hoped that Ambucs had enough adaptions to make a foot-cycle possible, and we tried most of the adaptions. But it just didn't work.

First, my feet don't push on the pedal. My feet wind up almost straight as my ankles extend completely. We tried a pedal that was a platform not a pedal, but my ankle still bent straight down.

We also tried to solve my floppy knees. They had a strap to keep them from flopping out. They also had a knee separator to prevent flopping in.

I also tried a trike with pedals below me not in front, but that had what was called a tractor seat that I felt unsafe on.

So I tried hand-cycles. They were better than mine but similar. Then I tried the one the son of the founder rides.    

Instead of sitting, your legs stick out in front next to the front wheel, similar to this.

It felt good, I told them, so they gave it to me. If we had room to bring it home, I'd have it now. Instead they are going to dissemble it and ship it to me.

Awesome.


Wednesday, April 17, 2013

I'll take a lump on the head

I turned off my shower this morning, and almost died.

OK, that wasn't quite what happened, but knowing me it could have. And I'm sticking to the "almost died" part.

I have two shower faucets and two shower heads. I was originally using the shower mounted high on the wall. But I noticed water was splashing off me and getting the wood floor outside the bathroom  wet. So I switched to the shower mounted on the side wall that is low down and removable. That works well, but on cool mornings I get chilly. So I changed the pressure on the high head and started using that again. It no longer splashed the wood, but a stray stream shoots straight in my face now. So all that is to explain that I use both showers.

This morning was a side-shower day. That faucet is above the other one. Without thinking I turned the lower faucet off (on actually).

A blast of cold water shot down all over me.

My rockin' nerves responded to the chill by rocketing forward.

I still had on my seat belt, so the result was I bent forward quickly.

Fortunately, my head flew into the front wall of the shower. Sounds painful, and it was, but without the wall I'd have ended up on the floor as I have done before, and that is really bad. (I just searched for that post, and it is sad that I have two posts titled "Man down.")

Not that I still didn't almost end up on the floor.

After smacking the wall, my head began to slide down, forcing me to scramble to find a hold on something. Fortunately, I got hold of a nylon belt-like thing I use to hold my shampoo.

Then I just hung on till the water warmed up, sat up, turned off both showers and got ready for work.

I ignored the desire to throw up.

Monday, April 15, 2013

I hate terrorists

Not a day goes by that I do not feel helpless. Whether it is something simple like not being able to position Claren''s pillow or something more significant like falling and not being able to get off the floor, there is just an awful lot I can't do.

That's OK. (Well, not really. It FUCKING sucks.) I'm unfortunately used to it.

But it depends on others not feeling helpless and being willing to help me.

That is why I really hate terrorists who thrive on a culture of fear, striving to make everyone feel as helpless as I do.

I realize, of course, that I am not helpless. Asking for and accepting help is a staggering power. But if everyone feels helpless and fearful, why help the dude in the chair?

Bastard terrorists.

Friday, April 12, 2013

Bad thoughts

I am in trouble.

Early this week, I thought to myself, "Wow, my nephew and niece are never sick."

I didn't even say it out loud.

But yesterday my nephew came home from school and had a fever. Even worse, he snapped his lifelong streak of no barfing at eight years.

And even worser, my sister texted Mom that he vomited and Mom responded, "Poor Matt." Which, of course, was the right thing to say. Someone barfing within a mile of me makes me worried. (It turns out less cool. Mom was responding to a text that said, "I blame Matt.")

My nephew was better tonight, starting a new streak. Me? I'll never think again.

Wednesday, April 10, 2013

A good walk spoiled

It was such a great day out today that I went for a long walk at lunch. (The night is turning out less pleasant because somebody turned on the AC. HA I kid, sort of)

But the walk grew longer than expected because there was no curb cut. I thought I'd be rolling forever on the streets of Ballston as the man who never returned.

Another issue was that garbagemen, or whatever they are called, do not worry about putting the cans back on the edge of the sidewalk. They were fun obstacles, really.

Finally, did you know that stroller trumps wheelchair. I didn't. But this woman pushing a stroller came right at me and I had to move.

Monday, April 8, 2013

I need

I seem to be getting a bad reputation, and I am not sure it is deserved

I told the person working with me yesterday at swimming that I needed a break. He looked at and said, "You never pace yourself. Why start now?"

A few weeks my older sister was mocking me for doing things just to see if I can. I forget what she was talking about, but she is wrong. Everything I do is one very important cog in the existence that is Matt Trott.

I need to tilt my chair backward to see just how far it will go.

I need to fall to see how to get up.

I need to push myself in the pool.

I also need to buy lots more toys.

Saturday, April 6, 2013

I want to go to Machu Pichu

I am reading Turn Right at Machu Pichu, about an editor who at 41 decides he wants to do something adventurous.  He decides to follow the trails of some explorer who found Machu Pichu.

The book tell his story as well as that of the original adventurer. It is pretty fun. When telling is story, the author reminds me of A.J. Jacobs (although his wife's no Julie).

Of course, it also makes me a little sad that I can't have a super adventure.

I have been mulling a train trip out west to see some of our most amazing landmarks. I have the money, the vacation time. But ....


I'd have to take someone with me. Even assuming I can find  someone  (which I am sure I can), it doesn't seem so adventurous or like much of a vacation for some reason.


Thursday, April 4, 2013

So sad

Claren is 11 years old. I think she qualifies as geriatric on the  poster about age at the vet.

She not ready to retire, I don't think -- her job is pretty cushy -- but I do think about it and about getting a new dog.

A few weeks ago, I was thinking about it and a really sad and morbid thought popped into my head.

It scared me so much I had to tell Mom. I told her when we were walking Claren on the bike trail. She listened closely, stopped walking AND ... laughed. Totally cracked up and mocked me and  said she couldn't wait to tell the friends she was seeing that night.

My thought: My successor dog might outlive Mom and Dad.ser

Tuesday, April 2, 2013

Lift the seat!

I went to the restroom at work today and found three gents in there washing up. I didn't recognize them but  assumed they had come from the same meeting because they were all chatting.

A minute before, they must have monopolized the hardware because we have one urinal and two toilets, so my timing seemed solid.

I went to the wheelchair stall and was closing the door when I noticed one of them eyeing me.

I figured he was watching to make sure I got the door closed OK, and for that moment I was grateful. Like I have said, it is not needed but appreciated.

As I glanced at the toilet seat and saw the pee all over, my gratitude faded. The $#@!$% peed on the seat, and my entrance forced him to think about what he did, I am sure.

I wiped it off but could not bring myself to sit down. I told myself I should. But instead, I stood ... until my right knee buckled and I sat back on my chair and peed on my pants leg.

But really, bitch, as long as you peed quickly and didn't have to touch the seat, I'm good. Ass.

Monday, April 1, 2013

Do I look like I need help?

I find it interesting to watch how people respond to me.

Taking off my coat looks like a struggle. I am always surprised no one offers to help when they are in my office when I de-cloak.

Surprised but happy. I don't need help with my coat.

Or the bathroom at work: Sometimes when I am closing the stall door, I lose hold of the door and it swings all the way open. I have to stretch to grab it. This has happened several times when other guys are nearby, and they mostly swing it shut so it is easier to grab.

Mostly. Not always.The guy today just ignored it completely. Not a big deal but why.

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