Napping

I can't decide if this makes me real pathetic or not

I got up a bit earlier than normal for a Saturday, had breakfast, went for a ride on my handcycle, oversaw the washing of Claren, had lunch, then napped till 5, watched TV and played Wii until now.

The three-hour nap is what I am not sure about.

Don't squeeze the Matty

When the elevator at the West Falls Church Metro station breaks between when I get a message telling me the elevator is OK and when I get there, I ride to the next station. The elevator at the Dunn Loring station is ridiculously out of the way. You have to go to the front of the platform, beyond where the train stops, right next to a caution sign. ...

And I love it!

No one just hops on that elevator to save a few seconds. The only people who use it are ones who actually need it. ...

Unlike, say, the other day at West Falls Church, when I got to an elevator almost packed with ambulatory people. They made room for me and I got on. Then another guy squeezed on behind me.

I again learned that it is not cool to be in a chair with a service dog and be squished into an elevator.

For one thing, no matter how good your service dog is, if her head is jammed into someone's crotch, she's gonna sniff. And if you forcibly remove her head from said crotch and point her nose to the ground, she might then start to sniff the person's toes that are sticking out of sandals.

For another thing, people's sports coats can get tangled on wheelchair controls and cause problems.

Maybe I should go to the farther station all the time.

Really?

My life looks nothing like what I imagined when I was young and did not know I had genes that would go on to F--- me up.

I always assumed I'd be married with kids, not living with my little sister (whom I never imagined I'd get along with).

I aso never thought I'd have to worry about sitting on my hand.

But there I was this afternoon, on my chaise, trying to make a fist and wondering if I had just broken my hand by sitting on it. (I didn't.)

Not my bag, baby

We had a block party yesterday.

I stayed long enough to have a hot dog and a cookie.

So many things are aligned against me as far as block parties go, I guess I am glad I made it 45 minutes.

First things first: I hear poorly. And with noise in the background, I hear worse than poorly. Few people are at my level either.

But perhaps, worst of all: I am not a parent.

So I went home and watched Doctor Who.

The floor isn't so bad

I fell this morning, but that's not what worries me.

It was an easy fall. My feet just slid out from under me when I was transferring to the shower chair. I was holding on securely so I just sort of floated down to the floor.

I made a few half-hearted attempts to stand, but my feet kept slipping.  And honestly, I didn't really care that I was on the floor. Maybe I was still half-asleep, but I just had no desire to recover.

I called my sister. She didn't answer -- she was in the shower. I figured my brother-in-law was downstairs, but could not work up the effort to call him. I tried again to stand and grabbed my slipper, planning to put it on. That didn't pan out.

Finally, I called Claren over and was getting ready to have her bark when my sister appeared. She saw I called and was checking on me. She got my brother-in-law and he helped me up.

Otherwise I might still be on the floor, and I might not care.

The Mattman's utility belt

When I decided I needed something to prevent me from coughing and chipping furniture, I had a few options on hand.

I quickly discarded the Darth Vader and Boba Fett masks because I could not wear my glasses. This raises the question: Is everyone's eyesight perfect in the Star Wars universe? Or perhaps they all wear contacts? Or maybe, all the helmets have eye pieces personalized for the wearer? That would be cool.

I also had to put aside the 970s' Washington Redskins helmet. As you can see, it did not fit too well. It also did not go on my head easily.

My decision to go with a Batman seatbelt may have been met with ridicule, but as you can see here: It is awesome! And it does the job quite well. Thanks to my nephew for taking the photos.

Seatbelt on order

I told my sister tonight that I ordered a seatbelt and talked with Dad about how we can attach it so it holds the top of me in place.

I thought she'd be happy -- she's a big fan of a shoulder restraint.

Instead, she was all, What do you mean ordered? From where?

I said Amazon, and she replied, That's what worries me.

And then when she found out that the seatbelt has the emblem of a certain Caped Crusader, she yelled: Matthew, you're 42.

Leaving aside the fact that I am just 41, I'm still confused.

I am acquiescing to a restraint I have resisted for years. I see no way to make a seatbelt across my chest unnoticeable or not obvious. Why not have some fun with it?

Can you keep a secret?

I don't really want to tell my brother-in-law the builder about the gash I put in my desk (at left).

I don't really want to tell my dentist either. But if my tooth doesn't stop hurting where I banged it into the desk, I will have to.

I also don't want to tell the therapist and wheelchair salesman because they would likely suggest some type of chest restraint. I suppose that might be a wise idea, but it just seems so restricting.

My family will also support the restraint, so I don't want to tell them.

So don't tell.

Exuberant I have not been

I have decided I am going to live vicariously through my 9-year-old niece.

This may sound a little odd, but I think she will try every extracurricular activity she finds. It is so exciting ... for me at least. Her parents are probably run ragged.

But her exuberance is contagious. It was band tonight -- Mom said she wanted to try four instruments.

I'm not sure I was ever exuberant, but I am trying.

Crappiness pays off

I accept that I broke my wheelchair's controller arm and therefore deserve some blame, but who designs a wheelchair so the weakest part sticks way out alone in front of even your knees and even swung-away sticks out farther than the wheelchair seat?

If one loses one's balance and grabs for help to prevent a fall, one might be expected to grab the piece that sticks out. And if one had poor fine motor skills, the piece out front might get hit a bit more than usual. And if it tilts up, this out-alone piece might tend to ride up counters and other immoveable objects. But I am not a wheelchair designer ... at least not like the people at Pride.

I realize that all these potential problems should, of course, be of no consequence to most wheelchair users. Having the balance of an Olympic gymnast, they never fall. They have the fine motor skills of a concert  pianist so never have steering issues, either.

I do, though.

And my chair's controller arm has broken -- I have the pieces to prove it.

This has paid off several times when I or Dad has been able to fix a break by swapping parts out.

This time we had even more luck than normal.

The controller itself died a while back, and the repair shop switched the whole arm out. They also gave me the old arm.So Dad just swapped arms. Works again. Thank goodness, it has been so bad I have had to replace it often.

Another wheelchair fail

I noticed as I was sitting in my chaise tonight that the controller arm was swinging way to the outside.

Sure enough, it has broken. A screw sheered in half, with part still in the controller.

It is not too shocking really. This same thing has happened three or four times in the past. The person I am working with to get a new chair specifically ordered a controller that isn't this poorly designed.

But the new chair is a ways away still, and I am left with this POS. It is made by a company named Pride Mobility; I hope the designers are aren't proud.

Hanging in there

Coach Hayes from high school gym class was a big proponent of neck exercises. Every time he took the class to the weight room he made sure we used the neck machine.

I was more than happy to work my neck because it was one of the few muscles that was not obviously weak.

All the neck work paid off today in the bathroom, when I held myself aloft with my neck ... at least until I fell.

I have a moveable bar that is horizontal to the floor near my toilet. I use it to pull myself up, which I did smoothly, but I was unable to reach my pants so I sat down again and pulled my pants up around my knees. Then I stood up and pulled my boxers over my delicate parts. But when I grabbed my pants, my legs buckles or something and I fell over the horizontal bar.

I had a good grip with both hands on various bars, so I recovered and found my chin resting on the bar.

I needed my hands to try to stand, not just to grip the bars. I did not want to fall, though. So I let go off first one hand and then the other while I held myself with my neck and chin.

I did fall, but not hard and it wasn't my neck's fault. I pulled myself off the bar but couldn't make it to my chair.

After that I sat on the floor, exhausted myself trying to reach my chair, and then called my sister for help.

The problem is: These things do not happen in a vacuum. Actually, they seem to happen at the same time.

So this happened, then later when I was getting in my chair for dinner, my lose pant slid down. Then when I was taking my pills, I kept hiccuping when I brought the glass of water to my face so I wound up splattering myself with water.

All of which seem funny, especially now, but when things like that pile up, it is all I can do not to cry.

Where did my legs go?

I wrote last July about how my legs were apparently in love because at some point during the night one     always starts touching the other.

I figured this was a fling, of you will, that would end once I moved to a bigger bed.

It hasn't.

I mentioned in that post how I hated it because I can't tell where my legs are without seeing them. And when my legs move from side to side, it becomes harder to figure out if that lump on the left is my left leg or my right leg making a booty call.

I am beginning to wonder whether it is some subconscious thing to fight the loss of proprioception (that's the ability to tell where your limbs are in space).

Maybe I am subconsciously trying to find out where the hell things are.

It is really annoying not knowing where my legs are. What if they get lost?

I'm a loser, but it's not my nephew's fault

My nephew was playing a game with his sister when I came in this morning.

I am not sure it was the official rules or something they made up, but each player had five squat, gold figures that they set up near the opposite edges of the table. Then they took turns sliding one of the guys toward the opponent's team, trying to knock someone off the table.

My niece was explaining to my nephew that she was quitting, but that that did not mean she was forfeiting, as he was saying.

I didn't buy her explanation, and felt bad for my nephew, so when he asked me to play I agreed.

He picked the team, and we started setting up our guys. I was having some trouble with that, so he changed the rules.

Just leave them like that, he told me, pointing to the guys I had not stood up yet. He also knocked over his guys, so we'd be even.

He also kept making up rules to keep me from losing.

What made all this cooler than the usual cool is that my nephew often seems to take perverse pleasure in beating me at games on the Wii. A few weeks ago, he loaded a mini golf game, saying, oh, you'll be so bad at this.

I'd miss it if he didn't take advantage of me at Wii, but he made me feel pretty special today ... even if I did still lose.