Tuesday, May 31, 2011

Matt to heat:SUCK IT!

One of the worst feelings alive is to get out of work on a hot day but be too tired to change out of your long pants into shorts.

I mean you have to take off your shoes, take off your pants, put shorts on and then redo your shoes. It is tiring to write.

But today was different. I was wearing my new REI Sahara Convertible Pants with their zip-off pant legs. Plus, they feature "an innovative new design that makes converting from pants to shorts and back again easier than ever before!"

I am living the life of f-ing Riley.

Thursday, May 26, 2011

Matt's gonna die with his boots on

I have been thinking about suicide lately.

Not that I am contemplating it.

But I am thinking about it.

There was a death in my industry, no cause of death was given, and I worry that this person felt too anguished to live. And if this person -- who seemed so in love with life -- would commit suicide, what hope do I have, as my body trips down the degenerative path it has been put on?

At first, I was thinking I maybe understood why someone would kill himself. No hope for things to get better, a need to rest. I started to think I was describing me. I don't expect life to improve a whole lot and I certainly need my rest (just ask my sister who tried to wake me from a nap and took life five minutes).

But I decided I don't get it at all. Sure, I am tired all the time, but that is why I wear sleeping pants for the majority of the weekend and sleep late and nap long. Life may not get better, but it is not that bad now, Freidriech's ataxia excepted.

Oh hell, counting even FA, it is all right. There is much to live for:

  • Friends who give me Emu jerky, which I really do not recommend, or who push me in my stupid manual chair, or who just stop by my desk to chat.
  • The janitor who opens the door for me.
  • The stranger who moved a chair for me and just gave me a little pat on the shoulder.
  • Family who put up with me.

And that is just for this week.

Tuesday, May 24, 2011

Manual wheelchair aches

The manual wheelchair experiment is going poorly.

I have been through two backs, two sets of wheels, other tweaks, but the main problem remains: I can't sit in it for a full day without developing a monster backache.

Making matters worse, the chair feels OK at first, so I can't know if the tweak the wheelchair company made will help. I need to go home and use it for a day to see if my back will suffer.

Today was particularly rotten because I had hopes for the lumbar support, but no luck. By lunch, my back and body hurt.

Two things kept the day from being a total loss. First, I must have been in awesome shape three years ago when I was using my manual chair most days. I was so tired today.

Even more uplifting, I was leaving and a friend asked if I wanted a push. Sure, and she then pushed me all the way to the car and out of my bad mood. Mostly.

Monday, May 23, 2011

Stephen Hawking is smarter than I

Someone gave me a copy of the New York Times' interview with Stephen Hawking (Oddly, the web version seems abridged).

In the print version of the story he talks about doing whatever you want or can and mentions that he has been in zero gravity and Antarctica.

At first I thought: "Yeah, easy for him to say; he has money. It is very possible to have no boundaries when you have fame and money."

Then I thought: "Wait a minute, are you seriously jealous of a guy with ALS, with a much worse disability?"

And then: "Well, a little bit."

Then: "What the hell is your problem?"

And finally: "Oh lord, how much time do you have?"

Saturday, May 21, 2011

Heaven can wait ... until it is accessible

No rapture?

I was obviously shocked when I realized today had no "end of the world" vibe because normally you can count on doomsday prophets and numerology.

But then it hit me: Of course, there was no rapture; God is worried about lawsuits.

You have plenty of references to stairways to Heaven, ladders, even escalators. But you never see elevators to Heaven. Heaven is inaccessible to wheelchairs.

Sure, you can argue that wheelchairs won't be needed in Heaven, but that is a big assumption to make. I am sure that more than one lawyer would be willing to challenge God on this, and I figure that someone up there realized that, maybe Giles or one of the other patron saints of handicapped people. (Nice, non-offensive language there by the way, SQPN.)

I want to see ramped access before we even talk about this again.

Must-see theology

I am in a Rapture frame of mind so here is something I wrote a few years back.

You've read Revelations. You've heard St. Paul talk about it.

Now, coming Tuesday on NBC, it's must-see theology.

That's right. You know it by many names — Parusia, the Second Coming, the Final Judgment. Now see it live.

Watch as Jesus separates the wheat from the chaff. And you better hope you are the wheat.

From the mind of God, who brought you such Earth-quaking events as the flood, the destruction of Sodom and Gomorrah, comes the one awards show you cannot afford to miss.

Says chief producer St. Clare of Assisi, the patron saint of television writers: "We all know Jesus talked about returning when least expected. But this opportunity comes along, what, once in an eon. The marketing people wouldn't let us just sneak in like a thief in the night.

"And the stars were lined up round the block to get a taste of the action. We had no problem at all casting the righteous. I mean our location [Heaven] means that we have tons of people ready and willing. Mother Theresa pops up. Eleanor Roosevelt has a hilarious cameo as herself.

"Heck, some people was so desperate for a spot, they even offered to be the damned."

Clare says they turned away those who wanted to play the damned. "Can you imagine Martin Luther King, as chaff? Pu-lease. I know it is unfair to typecast, but really."

In the end Lucifer was coaxed out of hell to reprise is role as the devil. "Hey, when Clare came knocking, I said no thanks," recalls the Prince of Darkness, relaxing by the pool with a drink in his hands.

"I mean it's springtime -- who doesn't love May weather -- and frankly I was tired. Cursing God and tempting humanity is tough work. I told her to go see Judas or Adolf. I remember I said to her: 'I love ya, Clare, baby, but it would take a miracle.' True story"

Clare says she was at wit's end, but then she got an assist from God. "You might even call it a miracle," she laughs.

"When the big guy comes knocking, you can't say no," Lucifer says. "I mean, literally. Here I am a fallen angel and here he is God. You know."

Once Lucifer was announced, the rest of the damned fell into place.

"We got Satan, that was key," says director Francis de Sales, patron saint of journalists. "If you're evil, how can you not want to work with him?"

Starting at 6 p.m. ET, Sts. Homobonus, patron of tailors, and Martin de Pores, the patron of barbers, will host a pre-Parusia event. They will welcome the guests arriving on the red carpet.

The entire world is being judged, but only the A List will be judged at the Shoream Amphitheater. Some of them might wish the invites got lost in the mail, though.

"Just cuz you're righteous doesn't mean you know how to dress," Martin says with a laugh. "And just because you are damned doesn't mean you don't look good," Homobonus chimes in.

"We may be saints, but our comments will be anything but heavenly," he continues. "If Peter shows up wearing that same old ugly robe, you can be sure he will get grief from us."

"Oh, you know it," adds Martin.

At 9 p.m. the excitement begins. Host King David will begin calling out names. They will come up on stage where Jesus will give them a thumbs-up or -down.

"We've got a whole batch of neon lights to make sure the audience knows where the judged is going," says Clare. "It'll be wild."

As if that wasn't enough, Clare says they added a few unexpected touches.

Clare gives credit for the twists to St. Bernadine of Sienna, the patron of advertising. "Bernie knows what she is about," Clare says.

She adds, "marketing was a little worried we might lose the 18-24 crowd if we didn't juice it up, so we created three special twists:

"First, there will be a defense lawyer and the right to argue against damnation. If he presents a winning case, his client might just slide over to righteous. We'll have an 800 number set up where viewers can vote for or against damnation.

"Second, the righteous will be in stands on the right of the stage. The damned will be on the left with a moat of burning hot lava between them. Across the lava is a rickety bridge so any damned person can try to cross over. Of course, the righteous have also been given rocks to throw at a damned person. But will it cost them their spot in heaven to knock someone into the lava? Watch; the answer will shock you."

"Third, we will have some surprise guests. I don't want to give too much away but how do you think David will feel when Absalom comes out to get judged?"

This is a live event so preview tapes weren’t available. But Tom Shales of The Washington Post calls it a “guaranteed winner.”

“I’ve seen Clare’s work before; it is stunning. If there is one show you watch this year, watch the second coming,” raves Shales.

And Clare can’t keep to herself one more spoiler: “Where else will you see Osama bin Laden, Jerry Falwell and a host of other false prophets -- living and dead -- say in unison 'Oh crap.'”

Thursday, May 19, 2011


I actually cursed a woman out today.

Don't get me wrong, she did not hear me. She was on the other side of the door. I did curse her out loud, but I spoke quietly. And my quiet talk is most people's whisper, so I am sure the people on my side of the door did not hear me. They may have seen my withering stare at the stupid woman, though.

I was leaving work for the day, I pressed the button to open the door, and I started to head out. That's when the stupid woman, who was just waiting outside the door, walked right in.

She did say excuse me, but give me a break. It would kill you to let a wheelchair user out the door he opened? Or maybe she thought that I opened the door just for her? Because few things could give me greater pleasure.


Tuesday, May 17, 2011

Shimmy on a wash-cloth

My nephew took a shower in my bathroom a few months back. He was excited because he got to sit down while showering.

As he was finishing up, his mom asked him if he had washed his rear. To show her, he put the wash-cloth on the show chair and shimmied his butt back and forth.

Needless to say I did not use that wash-cloth again.

But, if I had used his technique, I would not have wound up sprawled on the shower floor this morning.

How are you supposed to clean the rear area if you are sitting, and you can't stand safely?

I have been using the "hope, prayer and luck" technique that has me grab a bar with one hand, stand up slightly, and aiming the handheld shower buttward. It has worked for a while, but this morning the shower chair did not cooperate and I slid off and down in a clatter of noise and a spray of water.

Dad heard so he came to help, and after a few tries we managed to get me in my power chair. I guess it's time to shimmy on a wash-cloth.

Saturday, May 14, 2011

Wussing out

Part of me wishes I was like George Thorogood and tell you, I got invited to a party, but I stayed home instead, just me and my pal Johnny Walker and his brothers Blackie and Red. Not at all because I want to be a drinker. But because it sounds much cooler than I got invited to a party, but I stayed home instead, playing an RPG game on my Mac and then I went to bed.

I had told my friend I'd go when she invited me -- it was a housewarming party for her and her boyfriend's new condo. But then I noticed the start-time: 9 p.m. As I e-mailed her, I am thinking about going to bed at 9, not partying with people (although let's be honest, I am never thinking about partying with people).

It would really have been partying with strangers, I'd know the hostess and maybe two others. Those aren't great odds for me to have fun. Although one of the notes on Facebook about it mentioned Beer Pong. I'd watch Beer Pong, just to cross it off the list of things I have seen.

This is one of my younger friends. My brother-in-law pointed out that my little niece is nearer in age to my friend than I. I am not sure it is quite correct, but it is close. Certainly, my college relatives are closer to my friend's age.

In my e-mail mentioning that 9 was nearly bedtime, I asked if we could do dinner later, and she said sure, so we'll do that. And maybe I'll request a Beer Pong exhibition for dessert.

Friday, May 13, 2011


Claren carried my lunch bag to and from my desk the past three days.

Big deal, you say. She has after all been doing that for most of our seven years together.

But Wednesday was the first time she did it in a month. When she had on the big cone collar, I felt a little guilty making her carry it because it hit the cone.

On Tuesday it came off!

Wednesday, May 11, 2011

Para-transit people? They're just really optimistic

I don't use para-transit services at the moment -- Dad drives me. I still like to keep my membership active, though, so when I got a renewal notice, I got the forms to fill out.

The application was pretty painless -- stupid but painless ... unless you are a doctor. Dr. B has to fill out like four pages of questions.

All about a person who, let's not forget, has a permanent disability.

I guess I should be grateful that I only have to state that I am disabled and need to use para-transit over public transportation once every three years.

Perhaps, though, the para-transit people aren't just trying to overwhelm people with disabilities with pointless paperwork or trying to winnow those eligible for the service.

Perhaps, they are just super-hopeful, and they truly believe and hope that I might have gotten over my permanent disability. If I am the recipient of a miracle cure, though, I promise to still rail against groups that waste my time.

Sunday, May 8, 2011

Yeah, Mom

Last Mother's Day, I talked about how I inspire maternal instincts in women who aren't my mother.

Last night, though, I fell apart and needed the real thing. As she always is, Mom was there.

I am battling recently some really rotten feelings. Not sure why, but depression is bearing down hard lately. I think I do a good job hiding it at work and putting on a friendly face, but it is exhausting.

Distress with God often pops up during these dark days and darker nights, and my youngest niece had her First Communion earlier yesterday. One of her gifts was a guardian angel pin with the saying that God will not let the righteous fall.

I said to Mom last night: "But he does let the righteous fall and pee all over the bathroom floor" as I had done earlier. I realize that declaring myself as righteous may make me self-righteous, but that was not a big concern at that moment.

Mom assured me God does protect the righteous, but I stuck to my guns as my tears started to run: "He talks a good game, but he really doesn't." And then I really lost it: crying and heaving.

She just hugged me, and that helped me recover. It didn't remove my doubt or solve my problems, but it's hard to despair when you feel how much your mother loves you. Plus, my allergies are so bad that the crying and sobbing made it so I could not breathe, so I had to settle down anyway.

But it was mostly the hug.

Friday, May 6, 2011

This wheelchair makes me cynical

I have my power chair back, with a brand spanking new controller.

The price should nearly wipe out the deductible on my in-network claims. So after this, I'll only have to pay 20% of the costs for my falling-apart POS wheelchair.

It works fine, but I am a tad suspicious. It needed a whole new controller, not just the speed potentiometer.

Insurance companies will buy new wheelchairs generally every five years. Is it odd that my chair is requiring seriously costly replacement parts just a month or two into its third year? Some people might think wheelchair companies like Pride Mobility are just out to bleed their consumers dry.

Wednesday, May 4, 2011

Matt knows best; it's kuru

When I read Gene Weingarten's The Hypochondriac's Guide to Life. And Death, I skipped a few sections even though it was hilarious.

I'm not, despite what most in my family would say, a hypochondriac. I don't worry that every cough is anthrax or every sniffle is swine flu.

No, I am not a hypochondriac … except when it comes to my stomach and both front and rear elimination ports. I am not sure why, but I am sure that these parts of me are going to fail so those were the sections I skipped.

These parts, it seems to me, are the most affected by life in a chair. They get crushed, squished and smashed daily.

The other reason is I have just been waiting my whole life for these things to go bad.

One of the first doctors I remember is the one who performed my meatotomy when I was quite little. I won't go into the gory details of this procedure, but it involves a scalpel and a male body part that should not be cut. I can't even link to a page on it because just the description makes me clinch.

As far as my stomach and the rear elimination portal, I remember as a freshman in college starting my day kneeling in front of my trash can drinking a spoonful of Kaopectate. I would drink it, raise one knee off the ground, then slam it into the floor to prevent me from gagging and barfing. Then I went on my way.

Over the years, I used various liquids to soothe my stomach and help things smoothly on their way even though that way is now crazily kinked from sitting in a wheelchair.

So when Mom told me the nurse admitted to her that yes, they had lost my urinalysis, I instantly thought the worst. Granted, my doctor, who ordered the retest of the urinalysis, is not worried. The first urinalysis found small amounts of blood in the urine, and my doctor thinks it was maybe some minor irritation or infection.

I know better. It us more likely ebola of the bladder, kuru of the prostate or perhaps the plague.

Tomorrow I will send them another specimen. Mom said the nurse was really apologetic, so I should give the doctor another shot. I will, mostly because it is too hard to change.

Oh, and Claren barfed on the living room rug tonight.

Tuesday, May 3, 2011

Wheelchair fail again

I learned a new word today: potentiometer.

I asked my airplane-building friend at work what a speed potentiometer is because the one in my wheelchair is apparently failing. I have been getting the error "Speed potentiometer out of range" all day.

My friend said it was the speed control, which made sense, because my chair kept cycling through the speeds. i would stop, jolt forward, slow, speed up, then slow again.

It was a blast and just the latest from the POS wheelchair.

Of course, that can't be the only crappy thing to happen either.

I called my doctor to get my urinalysis results, the third time I called since dropping the sample off. Unlike my past calls, today's call was returned by a nurse saying they could not find my results. I called right back but had to leave a message and never heard back.


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