Friday, November 28, 2008

It's my bathroom and I'll cry if I want to

If I was not so grossed out by my hemorrhoids or fissures or whatever is chafing my butt, you would have to agree that I am the toughest and baddest man in the whole damn town, no, the whole world.

Alas, I am too grossed to give the blow-by-blow of how I get medicine up in my cute little tushy. Suffice it to say it involves a lot of groaning, heroic grips, Plastic Man-like wrapping of the Super Pole and more.

I had to wait until after all the post-Thanksgiving party left before attempting this Herculean feat of medicating myself. For one thing, I didn't want to scare them off with the grunts and groans (I am reading a story about zombies and have decided that the chilling moans of the zombies probably sound like I do when I am doing anything.)

The other reason, and high on my list of why a house full of people can about knock me out: People close the bathroom door after leaving. It is hard enough for me to knock on a door. It is way too much to expect my deaf ears to hear a response. With just a handful of visitors, I can keep track of people and know when the bathroom is free by keeping an eye on everyone.

I suppose we could rig up something like plane restrooms have that would say "Occupied" in red above the door. But again if someone just left the door closed, I would see the "Occupied" sign for hours and finally rush outdoors to solve my issues.

But the medicine would be in the unoccupied "Occupied" bathroom.

Maybe sensors in the floor would work. Or we could hire a bathroom attendant for when we have parties. And the attendant could also help me put on the medicine. I am unsure whether we need to hire a supermodel for this task.

Monday, November 24, 2008

Where is the book teaching backward driving?

My brother is a librarian and I love books, but I haven't been to a library in close to 15 years.

I went a few times when I lived in North Carolina so I could satisfy my Alex Cross fetish without having to buy those big honking mystery thrillers. The thing I remember most about that library was that they did not charge fines for returning books late.

I went today to the local library here and soon realized why I am not a fan.

I found the first book I wasted easy enough. World War Z by Max Brooks was right where it should have been and I only had to kick out of the way one of those rolling step stools. I am pretty excited by it, not only because the author is Mel Brooks' son. I started it and it is neat.

It was the nonfiction books that presented the problems.

First of all, our supposedly superfunded library was without any titles by this author recommended to me. They did have several works by esteemed actor and star of TV's Wonder Years Fred Savage.

Instead, I decided to go with a book by Sarah Vowell, who makes me laugh. It was in the 932 area of the nonfiction. I rode the elevator down to the nonfiction and stopped.

The aisle numbers, which are at wheelchair height, do not correspond to the Dewey decimal system numbers. I found right aisles and by chance glanced up and saw at eye level for standing adult was the Dewey stuff.

I could not find my Sarah Vowell book. (Yes, Mom, I should have let you write down the numbers.) So I went to the end of two long aisles looking. On the way back out I took a book or two or five with me.

I am actually not proud of this. There was no room to turn around, and while I wish I could back up straight, the skill eludes me. And the odd-size books just hang off the shelves, asking for a smacking.

Bearing the brunt of my wheeled attack was a book about the Mayan ruins, IN COLOR, it shouted. I picked it up, saw the black-and-white photos and decided it deserved it.

I suppose I could find books via the Internet and have Mom pick them up, but that kind of defeats the purpose of browsing in a library. And perhaps worst of all: Getting caught in a library after it closes so it is just you and the books, that is kind of a dream of many book lovers. But now, being caught would really mean caught. I'd probably get trapped and the staff would find my withered corpse one day.

Knowing my luck, I'd have gotten stuck in an aisle about fashion or women's health issues.

In other news, I go back to work tomorrow. today my company announced coming layoffs.

Sunday, November 23, 2008

Give me a sign

I realized last night while watching the "World Famous" Lipizzaner Stallions (the quotes are theirs) that I am going to hell.

You can read about the horsey stuff here.

This next thing is not something I didn't know; it is just something I am finally admitting in public.

I am totally infatuated with sign-language interpreters at shows.

Is that wrong?

I could hardly turn away from them last night. Their faces are so expressive and they always look friendly and even if you don't know signs and can hear (sort of), you can sort of follow along.

It really helps if the interpreter is cute and into the show, as she was at Bruce Springsteen's Rising concert. I can't hear "Land of Hopes and Dreams" without thinking of her swaying back and forth signing "whores and gamblers." Yowza!

P.S.: If any family member thinks perhaps that this is more than you needed to know, think about me when my 19-year-old nephew was telling me how cute the new Bond girl is.

Saturday, November 22, 2008

Where's the intolerance when you need it?

I read email from the mailing list, INTERNAF, about ataxia, and I just wind up feeling wretched.

It is not that the list is bad or mean -- not like the good old days in the Wild, Wild West of the Internet 10 or 15 years ago when a simple "Merry Christmas" would elicit a two-week, red-hot flame war between atheists and religious people. But people have become more tolerant on email. SIGH. Those were good times.

Now, I read posts from people trying almost any new drug to find something that might cure them. I don't do any of that. I took Coenzyme Q10 for a while, but it made my stomach feel yucky, or it was at least a likely suspect, so I stopped. I took a multivitamin, too, but I read stuff that said they were pretty worthless so I gave up on them.

Or there are the posts from those who work out incessantly to preserve as much of their muscle as possible. Other than throwing a ball with a lacrosse stick to Claren, the only exercise I might do is bend over at my waist and slowly sit up. And that is a might.

Especially in the cold. Even thinking about riding my trike makes me want to take a nap under an afghan.

I suspect that I am less active in pursuing medical solutions is because I am in better shape than some people with Friedreich's ataxia. Maybe the exercisers, too, have more time to work out because they can't work. I can't shake the feeling, though, that I am just a lazy good-for-nothing.

I think I'll write a saccharine-sweet post about how God loves us all and the FA is just God's way of showing us we are special. See if we can't lower the level of discourse. I'll feel better.

Thursday, November 20, 2008

They shall be carried

I went to work about 4 today, a day off, so I could get a ride to a friend's goodbye party at 5:30. I was a little worried that if I just went from home at 5:30, i might bail on the whole thing because it would be dark out and because I am a big wuss.
e and got in. The first odd thing was the guy who drove me decided between the time he let me out and the time I got in to not come in himself.

The bar had a nice automatic door to get in but the gathering was up several steps. A guy I knew came in while I was thinking about what to do. He found the party and brought back some other guys to carry my chair up the steps.

I am conflicted, as always, about being carried. For the most part, it is freakin' awesome. But there is that nagging part of me that whines: "But you can't leave if you want easily; you are dependent; haha, you suck." My inner nag is a mean bastard, huh?

Actually, I could have used the easy way out.

Claren was acting real clingy and fawning. I was pretty sure she had to be excused, but we were kind of stuck. She held it like a trooper but did take the first opportunity when we left the bar to make her colon gladder.

It was, of course, wonderful to see my friend off, wonderful and sad to hear someone say they'll miss you, and even pretty cool to be carried.

Tuesday, November 18, 2008

Take that!

I just completed Day 2 of my week off. I could really get used to staying up late, sleeping, playing with Claren and goofing off.

Of courses, hassles intrude. The loose arm on my wheelchair finally got replaced today. Now it is sturdy. Yes, sir, so sturdy, in fact that it does not really move unless you put some muscle into it.

The real problem, the one that makes me feel like barfing, is that I just signed up for health insurance next year. They dropped my old plan, and the only one that still had my doctor available was a stupid health fund account program. It seems so stupid to sign up for insurance that is essentially a gamble that I won't get sick. Hello, I already am sick, way freaking sick. But I had no effing option. A less-kind person might wish adult-onset ataxia on every single executive in the health insurance business. I just hope they break their FUCKING legs.

Monday, November 17, 2008

I finally used my tortellini

When I lived in my condo, I used to buy big things of chicken tortellini and Mom would divide it up into meal-size portions and put it in my freezer. Not that I cooked tortellini that often -- filling a pan with water to boil was never that easy. Then I found some you did not need to freeze, so I used that.

Long story short: When Mom cleaned out my freezer she brought home a packet of tortellini that had been in there for years.

Last night I was watching the Redskins choke against the Cowboys and I got up to excuse myself. I had to go kind of urgently so I didn't flip my chair off. Mistake. I stood up and I guess my sleeve caught the chair's joystick.

When the irresistible force of a power chair meets the immovable object of a porcelain toilet with my leg between, guess what happens? PAIN!

Serious pain. So I was in a state of minor undress (unzipped pants), my right hand was keeping me from falling, my left leg is being crushed by the chair, and my left hand was flailing about trying to grab the joystick.

I managed to croak "Mom" loud enough for her to hear and Dad, too, who had gone to bed. When she got out to the bathroom, I also was able to tell her to move the chair. (For the record, I am fairly certain that if calling for help was not an option, I would have survived somehow. I did here.)

When she did back the chair up, the relief I felt almost made me throw up. Really.

One good thing: The searing pain in my leg did totally remove the urgency to pee. I am not sure I'd recommend that as a solution to urgency problems, though. But it was a good thing because I did still have to go (just not urgently), but the nerves in my leg were firing all at once keeping me from putting weight on it. That and the confusion from Mom and Dad about what the hell I was doing still at the toilet kept me from going immediately, but I did go and returned to the game because I am a player (not a wuss like certain Redskins).

I then told Mom that "I didn't think anything on my foot was broken" but I wanted her to look at it. She did and found a big angry bruise, so even though my feet were freezing we put the frozen tortellini on the bruise to keep the swelling down. At first, my nerves kept my leg bouncing but eventually it relaxed, and the tortellini even worked. No pain today.

Sunday, November 16, 2008

Cujo Claren

When I was growing up, one of my uncles had a dog that was part Labrador retriever and part Rottweiler. Ragweed was a wonderful dog, but she had a smile that looked vicious and she no doubt scared off plenty of people.

I guess Claren can look fierce from the right angle; mostly, I think, she is kind of goofy-looking, especially when she is playing (Imagine this object just rolling back and forth).

She apparently did not look harmless and goofy to a kid this afternoon – she was more Cujo than cuddly. It's my fault, but I am not sure what I'd do different next time.

Claren and I were out by the edge of the driveway, playing ball in the field, which is our property even if it is sort of seen as a park. I saw this man and two kids approaching, so I stopped throwing the ball and just waited. They got up to me and introduced themselves, and at some point Claren must have decided the little boy wanted to play because I looked up and she is loping after him and he is running. I thought everything was good until the dad yelled something like, It's OK, and the kid was crying.

The kid disappeared into our garage and the dad went in to comfort him. My little sister came out to settle things down and I took hold of Claren's collar.

I guess I could have grabbed her collar as soon as I saw them, but Claren does not make the first move. But I did not see the kid try to grab her ball or suggest somehow he wanted to play. Maybe if I could hear well I would have realized that the kid was not having fun and could have yelled at Claren.

Several relatives have said they came in to our yard. While that might work legally, I need Claren to be better than a regular dog. And I need to be a better-than-a-regular-dog-handler. One of us is falling down on the job, and I don't think it is her.

Saturday, November 15, 2008


I don't know what I have been doing at the meetings with the architects and when looking at the plans the past few months. The last couple days I actually started thinking about how I'd get dressed or where my clothes would be. I realized the plan needs some changes.

Fortunately, Mom and my little sister were able to make it work within the space we have, but HOW STUPID AM I?

Thursday, November 13, 2008

Where were all my helpers?

Almost every day at lunch I pull out my A&W Root Beer and am scared it spilled. You see the can is decorated to look like a mug overflowing with root-beer-y goodness.

Today, though, I did not need to imagine it. I spilled my drink.

It was sitting on my desk to the left and I just knocked it over. I have a brace on the left side of the chair to hold me straight. It does that, but it also keeps me from leaning over to the left.

I'll tell you, nothing quite as helpless as watching a can slowly pour out but you can't reach it.

I did eventually right the can, but most of the root beer was now on my desk.

Then I had to clean my desk off sticky root beer. I know I have said I can clean my desk, and I did, but it really sucks.

I got root beer all over me, I got stuck with my wheelchair controller pushing into the desk. But I did get it all cleaned up and hopefully not too sticky.

I know I am totally stupid. I whine when people help me and when they don't.

Wednesday, November 12, 2008

Look at me

Everyone who has a service dog can tell you how people see the dogs first and then them. A big selling point for service dogs is that they attract the attention that might normally go to one's wheelchair or whatever. And I sure don't mind when people say hi to Claren first.

But when they ignore me or act disappointed to see me, I have to draw the line.

There is a woman at work who asked me once if she could say hi to Claren. I said she could, thinking we'd never she her, and mostly we don't.

Today was one of the days we did.

As we were getting off the elevator with her, she said, Bye, Claren. I said bye because I was 99% sure Claren wouldn't (You can never be certain with Claren; she'll fool ya). The woman responded, Oh, bye. It sounded like she was saying: "Bye, random person who I wasn't even talking to."

Maybe I just need to be less offended by possible subtext.

Tuesday, November 11, 2008

Can I get an autograph?

I hate being given a birthday or get-well-soon card to sign at work.

It is bad enough that I have to sign things when I can hardly write. After seven years, my boss gets this. He asks if he can write the note and I'll sign it. On my review, he dated it for me. Our section's old office manager did that, too.

Neither was around today when I got a get-well card for this guy who I know but quite casually. I didn't dare write a long note because he'd never be able to read it, but at the same time I did not just want to sign "Matt" for fear he'd be like: "Who?"

To make things worse, I was one of the last people to get the card, so if I did write a note it would have to be front and center. Other people already took the less conspicuous spots. And even though it is illegible, I don't write small.

Finally, I decided to just sign Matt and to hell with it. I did not want to take up half a page writing "Get well soon." And I found a nice inconspicuous spot on the back that was just big enough for my signature. Actually, I spun the crossbar on the two t's a little out of control and that went into another note.

But I wasn't done yet. I had to find someone else who had not signed it and give it to them. It wasn't so hard with the get-well card because the recipient was not at the office. But with a birthday card, you need to whisper and surreptitiously find someone who hasn't signed it. I don't do surreptitious.

I eventually just gave the get-well card to the office manager to redistribute as she saw fit. Maybe I can teach Claren to write.

Monday, November 10, 2008

Better than nothing, I guess

I a m not sure it is worth losing a friend to NYC, but I came home today with books and comics and graphic novels.

My friend who is relocating cleaned out her desk and invited me over to take whatever looked good.

I went over once and she wasn't there so I didn't take anything. That would have felt weird.

But she told me to come back and she went through her boxes hunting for stuff I'd like. That was pretty awesome. She seemed quite delighted to find some thing, and I look forward to giving them a read. She is less into superheroes than I am, but her recommendations are rarely boring.

I kept the Iron Man figure by my computer at work, along with the handy but very girly case to hold all his accessories.

Friday, November 7, 2008


I decided this morning to be safe so I got my slippers on before I got in my chair this morning. I actually tried to put them on before I got out of bed, but I fell and Dad put them on my feet when I was on the floor.

I somehow survived falling into the 10-inch gap between my bed and the cast iron radiator next to it. Except, of course, I was kind of wedged in there pretty good.

I got Dad to help and quickly followed the "Hey Dad" with an "I'm OK" so he wouldn't freak when he saw his son upside down and bent in half.

He didn't, at least outwardly.

I can't say as much for me.

My little sister dropped off her kids just after the fall. "You look shell-shocked," she said.

I was. I had used up all my adrenaline less than a minute after getting up.

Wednesday, November 5, 2008

Wheel-under sink

The top of the controller for my chair sits probably 36 inches off the ground. The sink at work is a roll-under, and the bottom edge is about 35.5 inches. I can get under to wash my hands fine, but normally my chair cannot go all the way under the sink.

All bets are off when I yawn, though.

Like all the other response reactions -- a sneeze, a cough -- yawning is trouble for me. It is, perhaps the height of idiocy (at least for tonight and yes, I am talking to you, God) ... the height of idiocy that these common everyday reactions involve risks of life and death for me.

Tonight, it was just my chair. I yawned, and remember thinking: "It's all right; there's nowhere to go." You see, I knew already that yawning is dangerous. My arms seem to move on their own and they move very sharply. My knees arch up of their own volition.

There was nowhere to go, I guess, except for straight under the sink. My hand just stretched out and "floored" the controller. I heard several cracks (to the chair, not the sink), and then I was stuck under the sink. Once you get past the 35.5-inch bottom, the sink opens up underneath.

After I banished nightmare images of firefighters having to cut away the sink to get me out, I worked myself out.

My chair remains in one piece, quite damaged, though. I am quite damaged, too.

Tuesday, November 4, 2008

Back when spam was good

I have started scanning my spam folder at work regularly these days because some of my emails have started going in there. What I have noticed is how boring the subjects have become. All of the subjects mention dieting or sexing yourself up.

A few years ago, that was when spam was good. Here is a poem I wrote then taken from spam titles.

By lose go catnap
and draw as rattlebrained burdock
I shut he railway ecumenical
I play at semantics
Do sleep do clothier splatter
As give do persuasive boozy
Be open is salmonella
I take on coriander
That leave my windowsill filly
But wait a wold
In fly a imposter
But go an riparian prodigious
By study a unfaithful layman
The sleep it miry soap
Go spend no ragamuffin debilitate
To study a sizzle truculent
Are complain my thin suspenders
Re: My fill of active corset

I'd stack that up against any free verse poetry. The only problem is it doesn't rhyme.

Monday, November 3, 2008


Not even an "astounding, outstanding" annual review has been able to snap me out of a funk today.

I am sure it is because it is getting dark early now and will get dark even earlier for a while. My schedule is going to be flopping around through the end of the year, too, which makes my stomach do flip-flops just thinking about it.

Plus, I told my boss in my review that it would be hard to top. He not only agreed but suuggested I probably wouldn't.

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