Friday, May 30, 2008

If only I could use the stairs

I developed a product for my company recently that has gotten some positive feedback from top people and from our audience. This is good. With any luck it will pay for the 12-foot by 6-foot glass wall I shattered this morning in a company elevator.


I wish I had a good excuse, like the doors were closing and I just scooted in. But no, someone was holding the door, and I zipped in and just hit the wall. Maybe a little fast but I wasn't going at hyper-speed or anything. I am sure I have banged the glass before. Maybe it was just the wrong spot.

Anyway, BANG, it shattered. The person holding the door was like wow, and then he saw the shatter and he was like, WOW. It didn't break apart. It just cracked in a spider-web pattern. I went back and reported it to the security desk and that was more or less it ... so far. Security did call me to make sure I was OK and said they would take care of it.

I have cost my company a lot of money. This, eight automatic doors, a special keyboard tray ... I know they are mostly reasonable accommodations, and I guess they won't fire me because of an accident. I mean I am sure others have lost company laptops or wrecked company cars.

But I am worried I haven't heard the end of this, and in a larger sense what is in it for companies to hire people in wheelchairs? I know I am quite good at my job, but I am not stupid. The company could hire Abel Bodied and it would be cheaper for them.

I feel like I should apologize to the CEO. I told some people after the incident that I wanted to throw up. I still feel that way.

Tuesday, May 27, 2008

Scaring up some dates

I have to write about my riding lesson on my other blog, but apparently my heart is OK. I could not really understand what the doctor said – it was one of those automated phone lines -- but I heard words like "terrific" and "good." So unless he is a real sick son of a bitch, I think I am OK. Maybe, though, that is what SOB meant on my chart. "Play a sadistic SOB on the phone call."

I wonder if the cardiologist will give me a discount if I send him my co-workers; I fear I am scaring some of them.

A few days ago, I went to a morning meeting and a door was closed. But it is a light door so I just hit it with my chair. It banged open and I got a call from the meeting room: "Are you OK, Matt?"

Today I was leaving a meeting and I was paying attention to Claren and I ran into the wall. It made a resounding crash and half the people at the meeting were halfway out of their seats when I turned around to say I was OK.

I could have some cardio patients lined up; maybe instead of payment he'd get me a date with a nurse (it is a fine-looking office).

Monday, May 26, 2008

"Attention must be paid."

I have been thinking about rehabilitation a lot recently. I am growing pessimistic about my muscles. A few days ago, I was transferring to my chair and my legs kind of failed me. They held me up, but would not lift me five inches into my chair. I was all but screaming out loud at them. I was screaming at them in my mind. Nothing worked.

That is not even the kind of rehab I mean; I am thinking about prisoner rehabilitation. I know there is no statute of limitations on murder (Thank you, Law & Order), but is there a time-frame when you can ignore the crime that a person committed or that they were at least convicted of? Especially if the convicted person seems remorseful and good and maybe not guilty.

Again, I have the Jesuits and their magazine to thank. America recently published a piece about the death of an elderly prisoner. The writer, it is clear, is in prison, too. It is also clear that prison is an awful place where rehabilitation is rarely on people's minds. But what brought a lump to my throat was the description of the author: "Jens Soering is a freelance writer. His third book, The Convict Christ: What the Gospel Says About Criminal Justice (Orbis, 2006), won first place in the category Social Concerns at the 2007 Catholic Press Association Awards. His fourth book, The Church of the Second Chance: A Faith-Based Approach to Prison Reform (Lantern), is forthcoming this month."

The Jens Soering I know (from reading newspapers) was convicted of killing his girlfriend's parents while he and the girl were college students. They then fled the country and when arrested he confessed.

I know that many questions remain about the trial even years later. He says he confessed only to save his girlfriend from being found guilty because she really did it. His trial attorney was disbarred and admitted being impaired during the trial, according to an article in The Virginian-Pilot.

I don't really care, though. There are two people whose lives were ended, and Jens Soering was convicted of that. I don't think we can ever forget that. I am sorry for him. It is wonderful that he found Catholicism and writes, but to ignore the killings ... The Jesuits really slipped up here.

Thursday, May 22, 2008

The prevent defense sucks in football and life

I hate when the Redskins play the "bend but don't break" defense because it never works. They give up 5 yards abd 5 yards, and then they break miserably, give up a touchdown and lose the game again.

But this is what I am reduced to playing in life. I bend, oh yes, I bend, much farther than I think possible. Unlike the Redskins I don't break, at least not yet.

Tonight, I left in the middle of a good Simpsons to go for a walk with Claren. We went down the other side of the street because the sun was still hitting that sidewalk. The sun did make it hard to look ahead, though, and maybe that is why I didn't see the 6-inch ditch next to the sidewalk. The lush green grass also covered it well ... until I hit it.

The grass gave way and my right front wheel plunged downward. I pitched forward, bending at the waist and wound up resting on my joystick and pushing it forward. Fortunately, the middle wheels, which are the ones that move, were touching nothing. The right middle wheel was in the ditch but not all the way down. The left middle wheel was in the air as I tilted awkwardly.

I am not sure how I avoided falling over; I actually envisioned it. Given the precariousness I was afraid to move but knew if I didn't sit up, I'd be doomed. Somehow I got both feet on the ground and pushed myself up. Then I used my legs to push me and the chair backward. At the same time, I was giving the chair juice to move back. These got me out of the ditch and from there I got back on the sidewalk.

Just as I recovered, an SUV stopped and a mom with several 10-year-old girls asked if I was OK. I told her I was. I don't think she meant metaphysically or emotionally.

All this happened after I wrote the following post. I wrote it when I got home from work because I could not nap because the people who clean my condo were there, never mind that they were due last week and come on Wednesdays:

You're really used to this, the echocardiogram tech said as I flopped off the examining table into my chair. I didn't say anything, but I was thinking that yes, after nine plus years of full-time wheelchair use, I know how to get my body from here to there. I knew, for instance, that I would be OK because I had a tight grasp on my chair and the bed. I knew that my legs would buckle, but that the muscles would eventually kick in and keep me off the floor.

But I am used to it? Oh, no. I don't know if I ever will be, or even want to be. Almost every transfer brings with a breathless curse. I hate it, I hate it, I hate it. And there is nothing I can do about it.

Nothing but not break, I guess.

Wednesday, May 21, 2008

SOB at the cardiologist

I went to the cardiologist yesterday and am heading back tomorrow for an echocardiogram. It's nothing unusual, just an annual visit to make sure the walls of my heart haven't gotten too thick, which happens for some people with Friedreich's ataxia. Most neurologists I have seen think I may possibyt avoid it because my FA seems to be on the less bad side. But then again, the doctors say, I may not avoid it.

I actually did not see my cardiologist, but rather the RN that works in his group, and let me tell you: She can take my vials signs anytime.

By that, of course, I mean I felt very confident and relaxed in the capable hands of this fine medical professional. Also, she was easy on the eyes, although too old for me. I would guess she was 40. HEE

I told her the only cardiac symptom I had was trouble catching my breath (I'll pause here while every family member, at least, takes a deep breath). She wrote on my chart "SOB." I hope this stands for "shortness of breath," and is not some medical shorthand for either, "this son of a bitch is wasting my time" or "poor son of a bitch, he'll be dead in a week." Or maybe it was short for "I spent umpteen years in medical school, and this son of a bitch is judging me on my looks."

I guess I'll know if I go in for the echo, and my chart says "JACKASS."

Saturday, May 17, 2008

A court ruling away from manliness

One of my very mean female friends wrote in an e-mail list at work: You 'guys' are the girliest bunch of men I've ever known." She ragged on us because me and another guy defended The Sound of Music from her criticisms. I still say she may have no soul. The third guy admitted to watching Beverly Hills 90210, and I am afraid I was the one to first question his manhood. For the record, though, I admitted that I was a fan.

One of my much-maligned male friends pointed out that there are three guys and three gals on the list and suggested an arm-wrestling showdown to settle things.

I was thinking of this as I read a story about how a runner with no legs just got a court to say he can compete for a spot on his country's Olympic team. He uses those J-shaped springy feet to run, and scientists decided he got no advantage from using the "cheetah legs."

I don't really think that's the issue, though. The Challenged Athletes Foundation may revoke my scholarship for writing this, but I just disagree with the ruling.

I doubt the runner gets any advantage –- he is probably at a disadvantage still -- but he is using tools to run. It is different. He is using different muscles, facing different problems, etc.

I know that I would lose an arm-wrestling match with almost anyone over age 10, and it has nothing to do with strength. My arms are probably the strongest muscles I have. I use a manual wheelchair at times; I hold myself upright and haul myself back into the chair when I fall. But my muscles have their own time zone – when I am in a kind mood, I call it really slow.

Whenever I am at neurologist appointments they run through a similar battery of tests. Drag your heel along the opposite shin. They actually don't even ask me this one anymore I am so bad. Touch my finger then your nose, then my finger, which I will move to a new spot. I am OK at this one if it doesn't matter that I am supposed to be touching the finger and my nose with just some part of my hand. Unfortunately you are supposed to touch these things with your fingertip.

They also have me hold my arm up so my wrist is in front of my face. Don't let me pull your arm, they say, and they try to pull it away. My muscles take a minute to see if someone else will do it – some Deus ex machina maybe -- then they fire up and hold the arm there. Of course, when the doctors let go, they have to be ready to catch my hand before I smack my face because my muscles don't stop in time either. I am strong, just not well-controlled.

It seems that arm wrestling is about strength, though, so could I then get some scientist to develop a tool that spurs my muscles to action as soon as we hear the "1-2-3-wrestle," or whatever they say to start matches? That seems to be the gist of the ruling. Of course, the J legs give him an advantage. They may not make him faster, but he can't run without them.

My muscle spur would not make me stronger; it would just allow me to compete based on my strength.

I'd still lose to the gals at work.

Friday, May 16, 2008

Open sesame

When my boss is away, like he was today, I go to two meetings in his place.

The first one is in a big room with doors that are usually open. Even if they aren't, the doors are real light so I can kick it open easily.

The second meeting is in a glass room with a really heavy door that is never open.

I try to get there at the same time as others who can open the door for me, but the other day I got there and was alone out in front of the meeting.

I rolled around for a bit. There was a woman in the room, but she was talking on the speaker phone so I did not want to knock, but she saw me and let me in.

She asked why we didn't get an automatic door for the room. I told her that the company didn't really like putting in doors because they said the building was mostly very open.

"Yeah, but when it's not it's not," she replied.

I wish the company saw it that way.

Wednesday, May 14, 2008

Vengeance is mine, saith Matt

I was returning from the nightly walk with her majesty Claren when I saw a car with its hazard lights on ... in a handicapped parking spot.

The idea was mostly clear: I'll just be a second (a minute, 10 minutes), so just wait for me.

I sympathize with visitors to our complex. The visitor parking is in another ZIP code practically. But all the parking spots nearby were empty. This joker still felt it was easier to parking in the handicapped spot. Idiot. So I keyed his car.

At least I did in my dreams.

Tuesday, May 13, 2008

A new look

I thought I survived unscathed.

I sneezed, my glasses fell off, and the bridge of my nose slammed into the edge of my laptop.

I immediately put a hand to my face, expecting to pull it away coated in blood. But there was none. I felt like doing a jig, except that would definitely have led to some spurting blood.

Soon after, though, my face started hurting and feeling a little slick. I am now typing with a kleenex lying across my nose and in need of an advil.

Sunday, May 11, 2008

Happy Mother's Day

I spent hours today trying to find something I had written years ago that was quite appropriate for Mother's Day. It was a little essay about how most females I knew then tended to mother me, even my 4- or 5-year-old niece.

That niece is almost 16, but I can still remember her worry when her mother took her and her brother to buy snacks and left me alone in line at the movies.

I find this not the case any longer as I grow older. Most gals are just gals with me. This is better, I am sure. Not that there isn't still plenty of mothering: Mom, my sisters and nieces.

Saturday, May 10, 2008

Don't try suicide

Mom just told me that at least part of her Mother's Day will be spent with her brothers at a service for a family friend's son who killed himself.

Suicide always makes me feel so icky, mainly because I worry that some part of me will see it as a good answer to my problems. No, that's not right. Part of me already thinks suicide is a great answer to my problems. I worry that all of me will think suicide is the answer.

Don't worry, I am not going to do anything to myself. I don't trust everyone to take proper care of my toys and Claren, and who would give the comic industry my monthly stipend?

But how can "the big sleep" not appeal to me, someone who is always tired? Or to someone whose legs from the knees down are just one scrape after another from various falls or missteps?

I would never leave my family. That would be unfair to them after all they have done to me. I'd miss them, too.

Also, I am curious to see how this ends. Life is almost like a TV show in that regard, or a comic book, or any story. There are cliffhangers galore, and I want to see how they turn out. It just better all turn out awesome.

Wednesday, May 7, 2008

Ready to be better

I have started watching “Reaper” again. I read it got axed and I only saw repeats for a while. But apparently rumors of its cancellation were slightly exaggerated and new episodes are showing.

What I like is it presents a world where the devil is an active participant, making bargains, goofing off, etc. It gives me hope. You see, I am ready to sell my soul to be healed.

I know what you are thinking: Matt, there are always tricks and loopholes with the devil; don't do it. I am way ahead of you – I just don't care really.

Sure maybe I'd wish to be cured and the devil would “cure” the cut on my leg from falling down today. But, guess what? That is one less pain for me.

Or he'd cure me of Friedriech's ataxia, and I would find out the next day I have kuru.

Maybe he'd really cure me, even set me up with Natalie Portman. We would no doubt hit it off and be on our way to her place to "read some comics" when I would get hit by a bus.

I guess an active devil suggests an active God. I have not noticed this in “Reaper.” It seems to recall the Old Testament story of Job when God is active only to tell the devil to have at Job and then to tell Job to shut the hell up with his questioning because God is God. Then, and this has nothing to do with “Reaper” it just appalls me no end, God makes Job richer than before and gives him new children to make up for the ones who died.

Mom assures me that my guardian angel is busy, which I guess one could accept as proof of an active God. I'd rather be cured. Barring that, I want to know why. Why I am like this? Who's life is improved by Friedreich's fucking ataxia? If I ever get an answer, it better not be the diatribe that Job heard, which included this line: “Will the unicorn be willing to serve thee, or abide by thy crib?”

Monday, May 5, 2008

Reunion weekend

I graduated from college 15 years ago. It seems longer than that. I didn't do anything crazy or outlandish -- unless you count playing with a Van de Graaff Generator. But I could walk.

Not that great, of course -- I was a convenient excuse for drunk friends. When Whitney fell into me on the Rotunda stairs and sent me rolling into a fireplace, no one believed me when I tried to blame her. I got two rounds of applause at graduation: Once at the regular time; once after my brother-in-law helped me off the stage because I tripped and almost took everyone else's diploma down with me.

A reunion is coming up. People are planning to spend the weekend. I am trying to figure out if I can make it for a day and if so what day would be the most fun. Plus, like four people know my situation. How fun is it going to be to be the object of more than a few double takes?

It's just crappy.

Sunday, May 4, 2008

Bad bitter

In addition to packing up all my belonging to put in storage until my new home gets built, I am trying to read all the America magazines lying around my condo. I don't want to bring them with me because I will be living at home and Mom gets the magazine, too, also because it is embarrassing to have magazines from two years ago that I haven't read. I like some of the articles in the Jesuit magazine. (Jesuits are the Society of Jesus, a group of Catholic priests. In reference to The DaVinci code, a friend described them as the "good guys"; he meant the book, but it holds for the religion in general, I think.)

Unfortunately, some of the articles leave me thinking "Well, yeah, that's great; if your life is perfect! Where do you get off telling me anything!"

For instance, I just read a column called "Remembering a Darker Christmas Story, 'In the groanings of the night, our challenge is to follow the light'" By Maryann Cusimano Love. I told you I was behind in my reading. It includes this line: "Despair is easy; hope is hard." She is right, of course; hope is a constant struggle in this world of fighting and starvation and disease and sadness. And she talks of finding God in all things, which I am less sure of. If I find God in anything to do with my disability, I will be pissed no end because I have spent the last umpteen years trying to convince myself that God has nothing to do with my disability, that it is not part of God's plan.

But here is my real problem: She was apparently reminded of how hard hope is when her 4-year-old daughter spent the night barfing and she could not fix it. Wait, let me get out my violin.

Try following the light when your body or your child's is ravaged by a disability most people have never even heard of. Or when your 30-something disabled child spends the night throwing up and calls you in the morning to please come over and help him (this happened a few years ago; I am fine at the moment).

The writer doesn't know hard, I think, and I hate that thought. That is the bad bitter.

I know that people who are disabled or who suffer mightily in some other way are not the only ones with wisdom to share. Sometimes I just find it hard to listen to others go on about how hard it is not to despair. Tell me something I don't know. Maybe the writer does have a major disability, of course, and did not mention it. I know I have written that I wouldn't do this if friends wanted to vent their frustration on me, and I wouldn't – they aren't writing in national religious magazines.

I honestly don't know what the answer is. I even went for a walk with Claren and we tried without success to figure it out. All we could come up with is asking Mom to subscribe me to a different magazine. I would not have these issues with Playboy.

Friday, May 2, 2008

Crossing the street

I was out walking Claren tonight when I had one of my trademark brilliant ideas -- it was almost as good as using a towel to give my manual chair wind power.

I decided that rather than saunter across the street in third gear, I'd kick it up a notch and zoom across in fourth gear (they are program modes not gears, but which is understandable). Seeing the way some jabronies drive, it is not a bad idea.

Unfortunately, my execution was also characteristically flawed ... twice.

First, the idea came to me when I was about 10 feet into the intersection -- I was crossing with the light.

Second, I decided to change the gears with my thumb. The main thing I hate about the new chair is the controller. They tried to make it one-size-fits-all, no matter the disability. Everything is in a real tight area, so I can hit all the buttons with my thumb, often accidentally, such as the menu button when I am driving along. That stops the chair. So obviously, does turning it off. The on-off switch is the gear changer.

You see where I am going. I am sure. I tried to put the chair in fourth gear and wound up turning it off ... in the middle of the street. Fortunately, the car turning right was no jabroni and let me restart it and get to the sidewalk.

In addition to everything else, I think disability sends you on a mission, kind of like Star Trek: To seek out new and unorthodox ways to die. It is a never-ending mission ... unless, of course, one of your findings kills you.

Thursday, May 1, 2008

Too tired

So last weekend I was too tired to get in the shower. This morning I was almost too tired to get out of the shower. I am not disabled when I am in the shower, well except I am sitting. I long to stand up in the shower again. I could do it with all my bars, but it is too tiring. And as I said I am already tired. And I am rambling.

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