Thursday, December 30, 2010

Intruder alert: Dude in a wheelchair

I know, of course, that I should just be amused by the silliness of some people, and last year when Neighborhood Watch stalked me, I was.

But now, I am pissed off.

A car coming up Highland Avenue slowed then stopped right across from where I was letting Claren sniff some grass.

I was uncomfortable. I saw the magnet on the car door said Neighborhood Watch, but I don't like being stared at. I wasn't doing anything out of place ... unless you count being in a chair and walking a dog as out of place, but even so, a wheelchair bandit?

Because neither fight nor flight are options for me, I raised my hand in greeting. I was hoping this would show them that I support Neighborhood Watch and was not involved in any nefarious goings-on, and then they would drive on.

Instead, they kept staring.

All I can figure is that they wanted to see if I picked up after Claren. I didn't, but she did not do anything.

Finally, I said (yelled really because they heard): "Can I help you?" I figured this would embarrass them into driving on, too.

But no. They answered: "No, we're Neighborhood Watch," which explained it all. Because Neighborhood Watch is allowed to gawk openly at community members and make them feel like intruders in the neighborhood they have been a part of for 30 years.

And then they kept staring.

Wednesday, December 29, 2010

I'm still standing

The other day I was transferring back to my chair, and for some reason -- not on purpose -- I let go of the grab bars I was using to move.

Of course, I fell. I still have a big scrape on my leg from that fall.

But just for an instant, I was not only standing but I was also not holding onto anything. It was one of the coolest things I have felt in ages.

I can stand now, as long as I have bars or countertops or rock walls or poles to balance me. It has been years since I have not used my hands to stand, whether using a cane, walker or just grabbing walls.

I won't try it again on purpose, but it was a pretty amazing sensation to not be holding something but to still be standing.

Tuesday, December 28, 2010

Tearing down the new house

This morning bodes poorly for living in the new house my brother-in-law is building.

I was exiting the bathroom, not fast at all, but off-centered.

I hit the door jam, tore it not-quite off, ripped the paint next to it and popped a nail almost out.

Dad hammered the nail back and kicked the jam back into shape. We are more or less OK; the paint is ugly, but it is not obvious.

This, or something similar, will happen in the new house. No maybe's. This, unfortunately, is who I am.

I know my brother-in-law and sister are aware of my crash tendencies and still offered to let me live with them. But I still feel rotten.

Friday, December 24, 2010

Merry Christmas



Ahh, Christmas Eve mass. Perhaps the best place to be in a wheelchair.

The priest thought so. "Smart man, brought your on chair," he joked as he made his way through the crows.

Add in a service dog, and to the little kids I am like Brad Pitt and Claren is Angelina Jolie.

One kid walked by with her chin not quite touching her neck. She was staring mostly at me. Another kept running away from her dad to try to get to Claren. She never did. One little girl just kept looking at Claren. A little boy came back from Communion but would sit down because he was staring at Claren. And his grandma kept turning back and looking at Claren, too.

Older people think we are something else, too.

This guy came up to me before Mass, and he leaned in toward me. I swear I thought he was going to kiss me on the cheek. Instead he whispered: I'll say a prayer for you. He might have added and your dog, too, which would make sense because his wife came over and said she raised 10 guide dogs for the blind and how great it is to see the dogs out helping people.

My public! I love 'em.

P.S. As we were singing Away in a Manger tonight, I started giggling. I was remembering this SNL skit.

Tuesday, December 21, 2010

Please Father Christmas if you love me at all, bring me a watch

Several years ago one of our former columnists wrote about the demise of the wristwatch, which he said was coming because everyone would soon have cellphones, which have clocks.

Even then I found this silly because people did not, and still do not, wear their phones. And it is still more convenient to flip over your wrist than reach in a pocket for your phone. Usually.

I never replaced my much-lauded Superfriends' watch. Perhaps Santa will, but at the moment I am watchless.

I needed to know the time shortly after I had been excused this morning. I am not sure why, but I did, so I grappled my phone out of its pouch, looked at the time and dropped it ... back on my wheelchair seat. (Be honest, you thought I was going to say dropped it into the toilet.)

When I got back in my chair, I grabbed at my phone, but it slipped through my fingers and flew gloriously airborne, and landed squarely in the ... other stall (Thought I was going to say toilet again, didn't you?)

Of course, I can't get into the other stall, but of course Claren came to my aid, saving me from seeking embarrassing help. She snagged it cleanly; I left; no one was any the wiser.

Saturday, December 18, 2010

I miss sleeping with my dog

GET YOUR MIND OUT OF THE GUTTER!

My sister said one of our friends was a better mother because if one of her kids is sick, the friend still gives them hugs and kisses.

I am with my sister. I want nothing to do with sick people. Don't even like talking to them via e-mail lest I get some virus from them.

Everything changes, though, when your service dog is sick.

Actually, Claren isn't really sick. She just barfed last night as we got ready for bed. I think she ate something she shouldn't have and seems fine now.

Last night, though, she was tired and looked pathetic, and I really really wanted my double bed -- I didn't want her to be alone.

We went out to the family room and sat together on the loveseat out there. She immediately zonked out, but she kept her face toward me and stuck a paw behind my back -- I assume to reassure herself I was there.

Even though it is my normal napping spot, I could not fall asleep. My legs started getting all jumpy so I had to go to bed. I am not sure if she followed.

Thursday, December 16, 2010

It's a Very DC (Comics) Christmas


I expected to have access to all my figures this Christmas, but the house is not done yet. Fortunately, I have made a few purchases on eBay this year so I am able to fill nativity with new figures of my own. I did not have to raid my niece's or nephew's toys. I consider this a source of pride. I realize some might consider it a sign of dorkiness. They are, of course, wrong.

This year I bought entirely DC figures. I am liking DC more these days and I have few figures, or I did at the start of the year. Now I have a few, including:

  • The Angels on the top tier, announcing the good news to all and keeping a watchful eye out for Dr. Sivana or Onimar Synn. The white guy in the front left actually is an angel:  Zauriel, a guardian angel of the Eagle host, has protected the souls of countless women, including Cleopatra, Mona Lisa and Joan of Arc. Now we can add the mother of God. Next is Hawkman, likely familiar to any viewer of the Superfriends. You know he is just waiting for evildoers to show up so he can beat the holy heck out of them. Continuing clockwise are two guys I know little about but look cool and stand up without the need for the purple playdoh that Zauriel has on his feet. Orion and Mr. Miracle are part of the New Gods. Finally, there is Captain Marvel. I always liked him because he was friends with a talking tiger.
  • On the middle shelf are the Big 3, played by Charlie Brown, Lucy and Woodstock. Next to them are the shepherds. Wonder Woman is the only gal this year. I had another, but Huntress kept falling over even with playdoh. Green Lantern Kyle Rayner is to Wonder Woman's left. He was a struggling artist before becoming Green Lantern, so perhaps he could draw the scene. If you could zoom in on his face, you would know, though, that he ain't drawing nothing. He is just daring Herod to show up. My brother-in-law and I were considering who'd win in a fight: Green Lantern or Thor. We meant GL Hal Jordan and my money is on him. Kyle is no slouch either.  With his back mostly to the camera is Aquaman, who swam in from Mediterranean Sea via the Dead Sea. He has his trademark orange shirt back now if anyone cares.
  • Finally, on the far left shelf: the three Wise Men. The cool thing about these guys: They don't have to leave right when they see a star. They can have dinner, dessert, coffee, and then take off. That's what happens when you are Golden Age Flash, the modern Flash and Superman. I highly recommend the Flash-Superman races.
Here are the ones from 2007,  2008 and 2009. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Tuesday, December 14, 2010

Power naps

You know what I am doing this week -- my week off before Christmas?

I am sleeping.

I don't mean good nights' sleeps. I am talking about 12+ hours a day. It is the only way I can have enough energy for the next heap of winter.

Monday, December 13, 2010

Sidewalks are for suckers

Occasionally, I listen to various family members who suggest I walk on the sidewalk. Occasionally, I almost die, too.

I hate for many reasons: They are full of cracks, signposts, telephone poles and more. Then there is the curb and its six-inch plunge to the road.

In Mom's defense, she said "Good luck with the sidewalks," and she asserts that she did not necessarily mean to use them'

But when I crossed Park Avenue and neared the busy Route 7, I decided to use the sidewalk. I was driving into the wind, so I had my head buried in my scarf. Then I felt Claren pulling a bit on the leash.

I looked up to see another reason I dislike sidewalks: People use them, sometimes to walk their full-size Poodles.

With the Poodle on my left, I made a quick right slant and cut off my power so I did run off the sidewalk. I then watched in slow motion as my right front wheel edged nearer and nearer to the curb. It stopped right on the lip.

I then continued down the sidewalk looking into the wind despite the cold. no more real near-death experiences, though when crossing 7 in the crosswalk with the walk sign, this dang SUV did make a left turn in front of me.

Roads! They're as bad as sidewalks.

Saturday, December 11, 2010

Another good climb

Other than thumping J on the head twice during the second climb and nearly kneeing her in the face, climbing last night was good: three climbs and I made the top on all.

I kept trying to use both my legs, which is easier with a helper on either side. I also tried to stay on the wall. I mean I tried always to be holding on to the wall.

Not that I always did. Nor was I afraid I'd fall -- my belayer had me quite secure. I just wanted to try to do something a little harder than before. I also figured that when I get tapped for my first James Bond-esque mission, I might need to stay on the face of the mountain I have to scale. Unless Q has a jet pack for me.

I whacked J because my hand slipped off a hold and hit her. It is interesting how sore and tired one's fingers can get.

After the first climb, I had to ask J to help me pull up my kneepads because they had slipped and my knees were getting hurt. I had tried to do it myself, but my fingers just were too sore to grab the kneepad.

This was when I came real close to kneeing her in the face. My crazy reflexes sent my knee jumping just as she let go off the kneepad and stood up. Could have been ugly.

But it wasn't. Everything was good.

On my first time rock climbing, one of my helpers told me that I did not always have to use my arms to pull myself up. Sometimes, she said, I could put my hands on a lower hold and push myself up. I did it then but not since. I noticed several times it would have been a better move, but it was too hard to do. I want to work on that some.

Pictures to come.

Thursday, December 9, 2010

My emergency warning system fails or does it?

Maybe my nephew was trying to get me back for suggesting that the Birthday Bird was going to leave stinky socks at the foot of his bed tomorrow. Or maybe he was mad I couldn't go bowling with him.

He came with Dad to pick me up from work, and we were talking about his birthday. We went through the presents, and we were talking about his party at the bowling alley. He said his friends were going to be there, his mom, his dad and ... "You!" he said. I had to break it to him that I wasn't going. He said OK, but maybe not.

I fell in the bathroom, not loudly or badly, but after several tries to get up, I was out of breath and decided to ask for help. I opened the door and asked my nephew to go get Dad for me.

He actually heard me and said OK. He was playing computer and he hardly ever hears anything else. And I saw him leave the room. And heard him call "Grampa Teddy, Uncle Matt needs your help."

He came back and I waited. And waited. And finally got tired of waiting and got up.

I am still not quite sure what my nephew did, but I asked Dad and he said he never heard him. I am thinking my nephew just wandered into the kitchen and hollered without seeing Dad.

But maybe he holds a grudge.

Monday, December 6, 2010

Tales of a brassy monkey

I was talking yesterday to the volunteer working with me at swimming about how few of us showed up at class. He said when it gets cold out, people often don't show. I told him I was tempted not to show up. He pointed out that a lot of people were more than tempted.

It's too bad because the water was really nice. I like working with this volunteer because once I put the swim vest, or fat suit, on, he let me go. Most others may let me swim on my own, but they are real close. This guy stays six feet away, close enough to grab me if I inhale part of the pool but far enough to make it seem like I am swimming.

I did inhale a couple of gallons of chlorinated water, but mostly I swam. Even the lifeguard said so. Not that I needed him to save mw. He was passing by after I got out and he complimented me.

My big problem was swimming into the lane ropes. I don't swim straight apparently, but I can do nothing straight.

And freezing. That was a big problem.

Thursday, December 2, 2010

Amy Sedaris, that's not funny

If you are a person who will be assisting a crippled crafter, or rather, a handicraftable crafter, be aware that most people have no desire to spend time with these types of crafters, for they can be depressing and exhausting. This person requires patience. So keep projects simple and brief in duration to compensate for short attention spans and emotional frustration, and have emergency numbers posted and plenty of sweets on hand. When working with the handicraftable, you will encounter a wide range of behaviors: for example, with a little help and guidance, one disabled crafter might be able to mold a simple ashtray, while another troubled crafter might set all the felt ablaze while screaming for more fudge (see page 142). Another might be cooperative, undemanding, and a pleasure to craft with, while still another might go off like a battery in a microwave. Some will nap most of the afternoon. Yet others will babble incoherently while taking a hostage and can only be talked down with the promise of cheese.

Whenever dealing with disabled crafters, you must be careful and focused, but the truth is, no single precaution can protect you from every crafter that we call disabled. The best that can be hoped for is that once n your care, these somewhat erratic and occasionally drooly misfits will stay focused on the task before them while avoiding permanent incarceration. They must be allowed to craft at their own speed, but most importantly, they must be treated exactly the same way one would treat a normal crafter, if that normal crafter were radically unpredictable and sporadically threatening.

Dear Amy Sedaris, you are quite funny, so when I saw you had a new book -- Simple Times: Crafts for Poor People -- I thought it would be perfect for my little sister's birthday. i even asked Mom to stop by a bookstore and get it so I'd have it for my sister's birthday tomorrow. She did, and as I was glancing through the book I saw the above paragraphs called: "Adding a Handicapped Crafter to Your Crafting Circle." Just at the title I cringed. After reading it I felt sick.

I read an interview with The Atlanta Journal-Constitution where you talk about the chapter this comes from and you say that the chapter is your favorite.
"I think they’ll embrace it, because it’s inclusive," she said, describing her long struggle at Second City to include a "wheelchair scene" in one of the famed comedy troupe’s shows. Other comics “"would say, 'Amy, no, it’ll look like you’re making fun of people.’ And I’d say, 'No, it’s funny and someone will be there in a wheelchair and see themselves.’ When it happened, people rolled up to me after the show and said they were so happy we had that scene."

I kind of suspected you were trying to be edgy and include people who are disabled in your humor. My problem with that and with South Park's kid in a chair, I am not sure you or they get what it is like to shoulder a disability, whether it be autism or Friedreich's ataxia. Kind of like why Will Ferrell doesn't make Chris Rock-type jokes. You do know that referring to people with disabilities as "occasionally drooly misfits" is not funny, ever. I imagine you are poking fun at people who, when dealing with someone who is disabled, try to "keep projects simple and brief in duration to compensate for short attention spans and emotional frustration." It doesn't work.

I felt particularly bad because I have long adored your brother's writing. I have wished to be known as the David Sedaris of wheelchairs. I loved you in his stories and when you have been in various TV shows. I imagined that you all were sort of kindred spirits. But I guess not.

Maybe I need to read the whole chapter. Maybe you do understand. But I'll never know. I asked Mom to return the book.

I wish you success. I hope you never know what a disability really is,
Matt Trott

P.S. Sorry, sister. I am late with my gift.

Wednesday, December 1, 2010

Elevators close pretty tight

In addition to the loss of my favorite accessible bathroom, the new door on our floor shuts me off from my elevator bank of choice.

The elevators I used to use stayed open a nice long time. This is key because my chair accelerates poorly.

With the set of elevators I use now, I have to be moving toward the elevator that opens. I try to guess which elevator that might be, but I am not psychic.

Even if the door right nest to me opens, if I have not started moving toward it beforehand, the doors start to close on me.

I tried to get into an elevator on the way home yesterday. I thought I'd be clever and just stop on the way into the elevator, let them close and then bounce open. It was clever, I thought, because too often when I barrel in and the doors start to close, they whack the less-than-super-stable wheelchair controller arm, make a big crash and then bounce open. This way they would just shut gently on the footplate and then bounce open.

You know it didn't work, though, right? Because it failed on several levels and I am lucky a co-worker was nearby to push the elevator down button again so thie doors opened.

Problem No. 1: Elevator doors -- at least those at work -- open only when the inside doors hit a barrier. My footplate did not extend far enough into the elevator for that. I should have been able to reach in and hit the inside doors except for ...

Problem No. 2: the excruciating pain of the outer elevator doors squishing my foot, which was off the footplate, between the footplate and one of the doors, which rendered me helpless.

I learned my lesson. Today I went full speed into the elevator. It still closed on the controller arm and I banged my knees and made a loud noise. But then the doors bounced open.

Monday, November 29, 2010

Something was lost and now is found

Mom and I bundled up yesterday and went out to retrace my walk to the cemetery on the day before. A cover had fallen off my chair, and we wanted to find it.

I totally blame myself for the loss. I had seen the screw was loose but kept forgetting to tighten it.

Turned out to be a quick trip -- the cover was lying in the gutter at the first intersection we came to.

St. Anthony is one saint with a solid track record. More often than not, I find what I lost, so kudos to him. Not like Bartholomew or Dymphna, patrons against neurological disorders, although to be fair I am not sure what Bartholomew's tie to neurology is and Dymphana is more about mental illness.

I find myself blaming myself more for things that happen to me like losing the cover to the chair. To be more accurate, I find myself blaming Friedreich's ataxia.

When I made that list of problems with my wheelchair, I went down it and said to myself: "OK, this broke when I did that. That broke when I did this." It didn't occur to me that a wheelchair ought to be sturdy enough to handle what I dish out.

Certainly I do this with myself. No matter what hurts or how, I usually decide it is because of FA and ignore it as best I can. Because I can't rely on Bartholomew and Dymphana (at least not yet. I am hoping that after this public dressing-down, they hook me up.)

Thursday, November 25, 2010

I know what I'm not thankful for

I fell this morning. And that is why Thanksgiving is such a hard day for me.

I know that I should be thankful that the fall was not painful, just really loud. I sat on the toilet and my feet slipped so I slid off the toilet. Then I whacked my face on the wall or grab bar or something. But I was still holding a grab bar so I did not fall to the ground.

I should be thankful that Mom heard even though she doesn't hear well or that she just asked if I needed help. I don't like when people just help, especially because it is often not helpful. I knew I just needed to get my legs under me to be OK. I had plenty of grab bars and poles nearby. I did not need help and I guess I should be thankful for that, too.

I should be thankful that Dad, my sister or brother-in-law would have come to help me if I needed it. (I am not too sure about my brother-in-law: The other day he was talking about electrifying the walls of the new house so I would get a shock if I bumped a wall.)

I should be thankful for all my nieces and nephews who treat their uncle with zero respect but ridiculous amounts of love ...

... Or family and friends who call or email or text or IM or read my writings so faithfully and let me know I am loved and cared for.

I should, I know, but it is so hard to be thankful when you are dealing with such a crappy, crappy disability.

Monday, November 22, 2010

Suck it up: Pat-downs are old hat to wheelchair fliers

I have been following with growing annoyance the whole opt-out issue of pat-downs at airports.

At first I thought I was annoyed because these people thought that they were too important to follow the rules. Like people who don't pick up after their dog or idiots who leave used toilet seat covers on toilets or most pro athletes and members of Congress.

If you don't want to obey the rules, then take a train, a bus, a bike, your legs.

Then it hit me: The real reason I find it all so whiny. I, and others in wheelchairs, have been putting up with pat-downs for at least nine years. My junk has been touched, my legs, back and chest, too.

Now these candy-ass able-bodied people start whining after weeks. And I figure they would also be the ones leading the protests if a bomb got on board a plane.

Pat-downs are nothing. Try having your flight land and you have to wait till everyone else deplanes. Then the plane staff cleans the plane and the pilot leaves, but you are there because the aisle wheelchair, which you need to get off the plane, is not there. And then when it does come, it doesn't really fit between the aisles or in the doorway. And you spend more time sitting in a straightjacket-like aisle chair while it is wriggled back and forth to get to the jetway. Yeah, it sucks. Although it is made bearable by airport personnel who are kind even though they have to put up with your whiny ass.

Sunday, November 21, 2010

Bruce Springsteen dreams the impossible dream

I have been quite grouchy all week. I had to work late, which just throws all my rhythms off hard. It keeps me from writing, which doesn't help, and napping and pretty much everything.

To top it off, I forgot to order the latest Springsteen release,The Promise.

One song that won't be on it: The Impossible Dream, the song from Man of La Mancha. Elvis did it, which is cool, but not Bruce, at least not that I could find.

Of course, so many of his songs are about people who do dream impossible dreams and fight for them. I'm not sure they are successful fights, but the characters in his songs do fight

These are 10 of Bruce's Impossible Dream songs (Official releases and one song per album):

Night, Born to Run
Trying not to be too obvious, I will leave off Born to Run and Thunder Road for another song on the album. Night is short, but it is all about people surviving the workday by living after work.
And the world is busting at its seams
And you're just a prisoner of your dreams
Holding on for your life 'cause you work all day
To blow 'em away in the night.
I suspect that too often I don't blow anyone away at night. I wish I had more opportunities. Or maybe I just need a machine to have faith in, not my chair.

This Hard Land, Greatest Hits
Nothing really works for this character. The seeds he's sown have never grown. (it is a much more elegant rhyme in the song.) But you don't give up; you stay hungry!
Well if you can't make it stay hard, stay hungry, stay alive if you can
And meet me in a dream of this hard land
Car Wash, Tracks
This woman singer works at a car wash to have money to raise the kids she drops "at school in the morning" and picks "them up at Mary's just 'fore suppertime." But she still has a dream, probably an impossible one. She sings of someone showing up at the car wash and making her a singer in a nightclub.

Spare Parts, Tunnel of Love
Janey gets pregnant, her boyfriend flees and she has the baby. Then she reads about this woman who "Put her baby in the river let the river roll on." I have never been able to figure out if the baby lived, like he was abandoned in a basket that floated down the river or what. Anyway, Janey decides to do it, but changes her mind, goes home and sells her wedding dress for money to help raise the kid. I wish I felt better about her chances of success, but she is still trying.

Working on a Dream, Working on a Dream
Of all the singers, I am most hopeful for this guy. "I'm working on a dream, Though it can feel so far away." He knows it'll be hard and does not seem inclined to give up.

Maria's Bed, Devils & Dust
Then there's the guy in Maria's Bed. Most of the characters in these songs face severe uncertainty. They, and we, don't know if they succeed. But the guy knows his dream will come true if he can just make it to Maria's Bed.
I been out in the desert, doin' my time
Siftin' through the dust for fools gold, lookin' for a sign
Holy man said, "Hold on, brother, there's a light up ahead."
Ain't nothin' like the light that shines on me in Maria's bed.
My City of Ruins, The Rising
The singer doesn't give up when his city is in ruins. He prays and asks "How do I begin again?"

Land of Hope and Dreams, Live in NYC
How could this song not be on the list?
Tomorrow there'll be sunshine
And all this darkness past.
And Bruce;s train fits more into my beliefs than Woody Guthrie's glory train. I mean on Bruce's train you got "saints and sinners," "losers and winners," even "whores and gamblers." Plus, seeing this in concert allowed me to see "whores and gamblers" in sign language.


Trapped, The Essential Bruce Springsteen
I remember this from the We are the World album. It has always struck a chord with me. The character is trapped and he admits it. But he knows that "good will conquer evil" and that "Someday I'll walk out of here again." God, I hope so.

Badlands, Darkness on the Edge of Town
The granddaddy of all Bruce's dream songs, "talk about a dream/Try to make it real ..." I get goosebumps whenever I hear this in concert and you see an arena raise their hands as one when the chorus breaks out. I think this is the epitome of the Impossible Dream:
For the ones who had a notion,
a notion deep inside
That it ain't no sin
to be glad you're alive.

Monday, November 15, 2010

Got my 6

On the last climb this past weekend, my partners started getting me on the wall when my belayer hollered at them that I wasn't fastened in yet. We laughed and I asked if they were trying to kill me. My belayer said, "I got your 6, buddy." The thing that is really awesome, when climbing, I know all my helpers all do.

I must be getting better or at least more used to rock climbing. We went Friday night, and I was not unbelievably sore Saturday. Once I got out of bed anyway.

I kept waking up early and wanting Advil, which was on the window sill right above me. But I didn't want to move -- I hurt to much. It is definitely a good hurt, though.

We went back to Rockville -- despite what REM says. Six of us, and they all helped me make it to the top on two of three climbs.

We did the chimney first, and I am glad I had two climbers helping me, one on either side. J frequently gave me little pushes so I could reach one hold or another, which I suppose is cheating but I needed it. R pointed out holds. And both held my legs in place so I could push off.

The chimney climb was harder than last time. I did not think I would ever make it over the outcropping of wall. But after a time I did, and then it is a short climb to the top.

My feet still didn't stay on the holds really, but I did try to climb one leg than the other, like Crazy Climber from the '80s video games. It occasionally worked.

I watched one of the other folks I was with do this really hard climb. He was like spread out on the wall, using his fingernails and toes. It was pretty amazing.

The last climb was the only one where I didn't get all the way to the top. That one narrowed out so only I could get up. My climbing partners could not go up next to me. I thought about trying to do it without them but I was tired and it was getting late.

I was better off than J, who kept putting her foot on a hold only to have it turn. Apparently, that is why the third climb had more trouble than expected.

Sunday, November 14, 2010

No tossing me into the pool

I like my swimming teacher. She has an infectious spirit and genuinely seems to care about folks.

I still have no idea, though, whether she was joking when she asked if I'd be OK if she just threw me in the water.

Hardly any volunteers showed up, so I know it would have been better if I could swim on my own. And I had on the fat suit so I floated fine and was pretty sure I'd be OK.

But I didn't think being tossed in would be cool. I mean, if I ever got to the Paralympics, that is totally my plan for getting into the pool: just wheel up to the side of the pool and either just fall in or have someone tip me in. Psych out the competition, I hope.

But I am not there yet, so I said, maybe not throwing but if you gently released me into the water ...

She decided to work with me then.

Actually, she didn't do much besides reminding me to breathe and look backward. She didn't hold me much. Maybe that is why I am so tired.

It might also be because I went rock climbing Friday. I'll write about that when I get the pics.

Thursday, November 11, 2010

Happy birthday, folks

Dad's birthday is Oct. 29. Mom's is today.

I hate what I am going through in life with Friedreich's ataxia. And never in a million years would I have thought this would be my life.

But I am awful glad to have them help me with it.

Tuesday, November 9, 2010

Why get up?

A bad night that consisted of restless body syndrome -- really, it was like all my muscles needed to move -- merged into a bad morning with blood on the floor and two hard knocks on the head Dad could hear outside the bathroom.

One of the stupid front castors on my stupid wheelchair does not like to roll over rugs. I have a new one on order, but it's not here yet. Anyway, the rug in front of the shower kept bunching up, and I kept rolling back and forth to try to get it smoother out enough so I could use it to get in the shower.

I think what happened is that on one of the runs forth I hit the door, pinching toe parts and lurched forward so I was leaning against the door. But the run back was a little too fast, and my head was still leaning against the door. But the chair moved away.

I collapsed, smacking my head on the door, then again on the floor. My toes also got good and bloodied as they slid around on the floor and under the chair.

Dad came to my aid, helping me back into my chair. Then he fixed the rug and I got in the shower.

I was prepared to get up myself and could have, no doubt in my mind. But I'd have rather stayed in bed. And I wish I could have gotten back into bed and called in sick, but crap happens so often and that would feel like giving up or giving in.

Sunday, November 7, 2010

Talk is cheap; I wanna hug

I wanted to give my little sister a hug today.

She was crying as she told Mom and me a story, and I don't like to see people sad, anyone really but especially people I love.

But I was sitting on the couch (see: not wheelchair-bound) and she was standing behind my wheelchair. I suspected I could get off the couch and hug her, but it would have broken up the conversation. And any transfer with me involves a sense of risk, so I figured it would be uncool to make my crying sister pick me up off the floor.

So I just listened. When she was leaving, I told her I wanted to hug her and we all laughed.

But it really sucks.

Friday, November 5, 2010

When the going gets tough, Matt gets napping

I got up this morning, a vacation day, had a good breakfast and decided to go for a ride on my trike.

I had wanted to anyway and then I talked to my rock-climbing friend yesterday and she decided we should do the Army 10-miler next October. I told her I was dubious about my ability to go 10 miles, ride up hills or maintain the 4 mph pace that the organizers require. Don't worry, she said, you have a year to train plus I'll push if you need it; we'll be a team. How could I say no to that? And another friend had just posted a cool story about running. And how cool would it be to say I did a 10-miler?

I sat down to change, lost my balance and slammed into a super pole, sending my glases flying. I was OK, but my glasses bent and iIt was like all the energy I had minutes earlier jut slipped away.

I went to get my glasses tightened, played with Claren, read and took a nap.

Thursday, November 4, 2010

10 saddest Springsteen songs

I was reading my friend Patrick's take on 15 songs from The Promise, a new release from Bruce Springsteen of some of the studio outtakes from the Darkness sessions. Patrick, of course, really knows his Springsteen, and he mentioned a song as really sad, and I got to thinking: What makes my list of the 10 saddest Springsteen songs.

It isn't easy. The characters in a lot of Springsteen's songs face really desperate situations, but they hope. Like in Meeting Across the River. The singer is pulling off some illegal deal, but he says "And all we gotta do is hold up our end," and then things'll work out, his girl will "see this time I wasn't just talking."

Or the music is hopeful. Ronald Reagan was silly to try to claim Born in the USA, but its sound -- at least the album one -- is hopeful.

I decided to limit myself to official releases and only one song from any album because Springsteen has several albums with so many sad songs. You could do a top 10 from Nebraska alone.

I ruled out Born in the USA for its sound. I really like the song Downbound Train, but that dude has so much go wrong. Three jobs. His girl leaves. Just a comedy of crap. It's too much. 


In Streets Of Philadelphia, written for the movie Philadelphia, the singer has AIDS. It's pretty sad, but there is a speck of hope. "Oh brother are you gonna leave me wasting away," he pleads. There is also Dead Man Walking. But both of these tell the movie stories so I did not pick them.

Here are the 10, then, but there are a ton more.

The title track to The River is pretty bleak, but neither member of The River couple resorts to stealing cars, hoping to get caught.

9. Reno, Devils & Dust
Devils & Dust is hard. Do you pick the title track;
And tonight faith just ain't enough
When I look inside my heart
There's just devils and dust
Or The Hitter about the son who becomes a street fighter/boxer, which ends with the line: "I move hard to the left and I strike to the face?"

In the end, I chose the song about the prostitute: Reno. I could not know the lyrics, which make sex into something totally mechanical and creepy, and I'd still want to cry. It sounds a lot like The Hitter.



We laughed and made a toast.
It wasn't the best I ever had,
Not even close.

Any song that has the singer begging in the refrain "don't you shut out the light" gets my vote for a sad song. Makes me feel good that Mom and Dad leave all sorts of lights on. It also reminds me of when Gram died. A neighbor told Mom that Gram always asked the neighbor why she left so many lights on. The neighbor told Mom that she turned all her lights on for Gram the day she died. It is about a guy returning from something, Vietnam? But nothing fits anymore.

Talk about hopeless. The ex-con whose uncles steal cars is "sick of doin' straight time," and you know he goes back to crime.

I have to ignore Highway 29, about a shoe salesman turned murderous bank robber, and favorite Youngstown, when the singer hopes "the devil comes and takes me to stand in the fiery furnaces of hell" after his life at a steelworks.

6. I Wish I Were Blind, Human Touch
All the beautiful things in the world don't matter to the singer. He wishes he were blind "when I see you with your man." A friend in college said, Not a man alive doesn't know just what he means.

5. Rockaway the Days, Tracks
Yes, two from Tracks, but not the same disc. You know this song is going to be bad from the first lines:
Billy got out of prison but he wasn't right
Some like to drink or gamble, Billy liked to fight.
Billy wound up hurting someone, then he "wrapped himself 'round a telephone pole way out on 101." This would be one of my favorite songs on this list, but the last verse just doesn't fit. Probably why it is on Tracks, an album of outtakes.

4. Brilliant Disguise, Tunnel of Love
Anything from the second half of this album would fit. But all songs detailing a cheating spouse should sound this good. It is so catchy, I almost ruled it out. If I ever get married, I am not putting a willow underneath the bedroom window.

3. You're Missing, The Rising
Another album you could find most of a top 10 of sad songs if wanted. But You're Missing has always hit me hard. The line "God's drifting in heaven, devil's in the mailbox" just kills me. Seems to me a brilliant way of saying how far away and inaccessible God can seem, while sadness and evil are around all the damn time. That certainly was true around 9/11 when not everyone came home.

Yikes. That's bleak. I really hope manufacturing work is not that bad. Racing in the Streets is not much better, with its references to "one who hates for just being born."
There is probably one happy tune on Nebraska, so by just choosing Highway Patrolman, I am leaving out a song about a serial killer, a song about gangs, one about prison and several about the gap between rich and poor.

I am not sure where to stand on Reason to Believe. Someone argued that it was mocking the little things people grasp to keep hoping. I hope it is a tribute to humanity's ability to hope in the face of overwhelming evil or sadness.

Highway Patrolman, about a good and bad brother, reminds me of a family who lived nearby. They were all good folks but for one who was in and out of jail his whole life. Now his brain is fried from drugs, prison, everything, and it is sad. I don't wish he had a highway patrolman brother to help him elude the law, but I wish he did have a brother who would, or maybe the right word is could, take care of him.

Tuesday, November 2, 2010

Dude who uses a wheelchair really dislikes wheelchair-bound

A good friend referred to someone as wheelchair-bound in her Facebook status. I commented that she should call the guy "a dude in a wheelchair" because wheelchair-bound was yucky. She responded that she could tell he was bound because the guy tried to chase her. I suppose she is right, but the term is still yucky. Actually, I didn't care too much, even though I knew it was uncool and not a phrase I would use. But I did a google search on wheelchair-bound,and all the headlines that refer to people that way made me feel a little sick. Here are just three reasons to avoid it:

  • First off, as Mom pointed out, it is just wrong. Wheelchairs are actually freeing, not binding. Without a chair, I would be stuck in the house 24/7.
  • Also, few, if any, are actually in their chair all day. I am typing this from the comfort of my couch where I transfered after hours in my chair. No one is tied to their wheelchair as bound means.
  • Why does someone who uses a wheelchair get defined by their mode of transportation? Are people who walk foot-bound? That's pretty demeaning -- to bind me to my transportation. 

Sunday, October 31, 2010

I caved

I had noticed construction work last week near the bathroom that we were told was going to be shut off, but no one had been to talk to me and I saw no evidence that they were going to build a wall between me and the bathroom.

I asked my boss if he had heard anything, and he said no. Let's wait until we see a wall, he suggested.

Later that day, the wall began going up. I felt like Berliners must have felt in 1961. (Actually, it wasn't very dramatic, especially because they just used those carpet-covered cubicle walls.)

Now I just have one bathroom on my floor that has an automatic door on it. I can ride an elevator two floors to the fifth floor and two bathrooms up there have automatic doors.

My boss said to talk to so-and-so and then offered to do it himself. I talked to so-and-so who said she'd talk to the facilities manager.

The facilities manager found me the next day. The wall is temporary, he said, three or four months and then it comes down. He told me why, and then said, "You need to tell me: Do we need to put an automatic door on the other bathroom?" It costs about $5,000, but just tell me what I need to do.

Anyone who knows me knows what I said.

Sure, the money played a part. The company has put in five automatic doors, $25,000, and there was the elevator incident, $10,000. I did not want to cost it more money.

Mostly, though, I don't mind being inconvenienced. Everyone else lost a bathroom, too. Their option is to walk a ways to the other side of the building. I just have to take an elevator.

Plus, if there is some accident, maybe I'll get my own bathroom.

Saturday, October 30, 2010

The inaugural Matt Trott roll against breast cancer

I know you can't really see Claren, but I
am not looking happy in the other pictures
If the Making Strides Against Breast Cancer walk was any indication, everyone should go on a American Cancer Society walk.

It was for a good cause and all, but it was such a freaking cool ego boost.

I didn't even get up on stage with my sister-in-law because of the stairs. They spirited up a ramp in back. So I missed that adulation.

But it didn't matter.

I had the Wonder Dog. Several strangers took photos of Claren, who was the only legal dog there. I saw four other dogs, although the rules stated no animals, and she was way cuter.

Even better: At the beginning of the walk, volunteers line the path. Their sole job seems to be telling you how awesome you are and thanks for doing the walk and just general whooping and cheering.

I started off with my sister-in-law, but when she kept stopping to talk to people, I took off ahead. No one was interested in passing my sister-in-law and my sister was taking photos of my sister-in-law, so I was alone for the gauntlet of cheering volunteers.

It was like every walk I take in my dream.

The rest of the walk was OK. A crowded mosey down sidewalks that weren't always smooth is not my idea of a good time, bur I only ran down one person. I may also have run my sister off the path a time or two. It is really hard for me to go at a steady speed for an extended time. Not sure why, just can't.

It was crazy crowded because of the Jon Stewart rally, but people were quite polite mostly. I wish people would realize that handicapped parking spots have space around them because people using the spots may need the space to open ramps or doors or whatever. The extra space is not just a spot for people to park in.

I have to go to bed now, and I am totally going to dream about the beginning of the walk.

Friday, October 29, 2010

I'm driving a shopping cart here

I got my wheelchair on March 9, 2008. I was quite pleased with it.

In the two-plus years:
  • Lots of the red plastic has broken off. 
  • The pleather back has cracks. 
  • The arms wobble. 
  • The pleather on the armrests has holes in it. 
  • The batteries, which were bad from the beginning, were replaced. 
  • The joystick comes off easily, and the joystick skirt is ripped. (It's just this little rubber housing at the base of my joystick; Mom and I decided to call it a skirt.) 
  • I am on my third swing-away controller arm. 
  • Plugging in the charger is real hard and the charger often buzzes.
  • The foam pads on the lower parts of the arms ripped and I took them off. 
  • The footplate top is not flat on the footplate bottom.
  • And now, one of the front castors is behaving just like a faulty front wheel on a grocery cart. It wobbles and spins.
I know I use it every day, but seriously? Wheelchairs need to last five years to get help paying for it.

Add in the horribly designed controller and I wonder if this POS qualifies as a lemon.

Wednesday, October 27, 2010

Breast cancer: Still shitty

My Making Strides Page I believe I have made clear my feelings on breast cancer (See: "I fukcing hate breast cancer"). And on Saturday I will be marching against it.

Well, I'll be rolling, not marching.

I do totally rock the pink bracelet I have been wearing 24/7 since July, but still not a fan of breast cancer. I mean I don't even like the color pink.

I don't even need the bracelet; I have my badass Superfriends wacth anyway. It just needed a battery.

It should be super easy, even for one used to sleeping in on Saturdays. All I have to do is remember to charge my chair the night before. And even if I don't, then someone else would need to push me. Actually, that might be fun: not charge my chair and kind of will myself to make it, like Kramer and the gas gauge in the car. See how far you cam really go.

Oh, and I need to not roll off any sidewalks. Not as simple as it seems.

Saturday, October 23, 2010

A step back, but a fun step back

I hope the kids aren't disappointed. Matty Claus didn't make it up or down the chimney last night.

Actually, I didn't make it to the top of any of the three walls I climbed last night. I said last time that if I have all day I can make it up a wall. Clearly, I was lying.

And it did not even help that I bought my own harnesses and wore kneepads. I looked like a badass, granted, but ...

We went to EarthTreks Columbia. It was fun, but the walls were harder. They ran higher -- 44 feet -- but the problem was the holds were not were I needed them. And even when they were they didn't always have easy places to hold on. J said the walls were harder, but she was just being nice. She and the other folks climbed OK.

J was actually kind of pleased. Yeah, we finally found something that Matt can't climb the first time, she said. She is mean like that. HEE-- kidding!

It was a fun time, as I said, but a bit frustrating, too. I had just told the friend who was belaying me that I liked climbing because of the satisfaction you got from reaching the top and looking down to see what you did.

I still looked down and saw what I did. But I also was able to look up and see what I was unable to do.

I did almost make it to the top on the first climb despite becoming scared for the first time when climbing. I knew I would not fall and on all the other climbs I have swung off the wall and was held up fine by my belayer.

This time was different. I think it was because I actually lost my grip unexpectedly and swung off the wall. I looked down, saw my wheelchair and imagined me falling into it.

Anyway, I recovered and was near-ish the top when my freaking shoe came off. Really. It fell down and there was no hope after that.

When I was trying to learn how to drive with hand controls, I almost killed the instructor because my arms jumped around. Someone encouraged me to just keep practicing, that I would get it. I was sure I wouldn't. I knew my arms would not become less jumpy no matter how much practice I put in -- that is Friedreich's ataxia for you. My arms did not improve, and I don't drive.

Perhaps it is just as well I don't drive. My friends mocked me for saying I like PT Cruisers. Only cheesy guys drive them, J said. They were just as disdainful of square cars. I was too worried to mention my real favorite: Chevy HHR.

But every time I face an obstacle in some physical effort, I wonder if it is an issue or practice or a limit forced on me because of FA.

I am not quitting climbing or anything, but I wonder how much better I can get.

Wednesday, October 20, 2010

Save the mouse; screw the doctors

This is probably the saddest video I have seen -- a mouse with ataxia.

I don't at all oppose medical research on animals, but I just want to take this mouse home and cuddle it. (Stop here if you like doctors.)



The laughter. Apparently this was a lecture to med students, so really what the fuck? Bunch of goddamn asses. I hope they all get some kind of ataxia.

The cluelessness of doctors does not stop there. Recently, my sister was giving a doctor her family history and the doctor seemed surprised that two of her brothers had Friedreich's ataxia. So what's the story, moron doctor asked.

My sister asked her what she meant, and the doctor said, well, are you Mormon?

Was the doctor asking if we were inbred? We are not strong like the inbreds from my new favorite movie. Nor are we cannibals.

Maybe I was wrong. I assumed the assumed the laughing students were just twerps. But maybe they are all inbred.

Tuesday, October 19, 2010

He ain't robotic, he's my brother

About 11:30 a.m. today, my brother with FA officially became a cyborg, and this bothers me for two reasons.

He got a cochlear implant to see if that will improve hearing that Friedreich's ataxia has taken from him.

I use the word "if" because no one really knows if it will work. He is, as far as anyone knows, the first person with FA to receive a cochlear implant. This makes him a brave, heroic pioneer. If it succeeds, and doctors are cautiously optimistic, then I can get one. But then I am just a wussy follower.

He will deservedly get all the praise for his risk-taking. This is great in the real world, but in the Matt-centric universe I like to live in, the very firmament trembles. I need to do something even more risky -- maybe with nanites.

I am also disturbed because it has long been my goal to become a cyborg. Granted, I prefer this kind of cyborg ... but, you know, baby steps.

I did, however, get these awesome new ears from a friend at work. They don't help me hear better, but they look awesome as you can see.

Saturday, October 16, 2010

Super Nice Guy

Several people, ones not even related to me, have told me recently that I make people nicer. One told me it was my "superpower," which would be about right -- all these badass powers like flight or strength and I get a wussy, googie-goodie one.

I am trying to figure out a situation that would require the Justice League to call me in.

"Strong, super-intelligent aliens with kryptonite flecks on their skin have landed outside Metropolis, Batman," cries Wonder Woman. "Superman is dead; we're helpless."

"Not so fast, Diana; we still have one option," Batman replies.

Aquaman turns white as a sheet. "You don't mean ..." gulps Flash.

"Yes, friends. This is a job for Super Nice Guy," Batman shouts. "Put out the call!"

"Don't forget his sidekick, Funny Dog," Martian Manhunter pipes up.

They make the call, but of course, I don't hear it and we end up with alien overlords. It could happen.

I have been thinking about my superpower since I went to a new vet on Thursday. My vet left the practice and while I liked the staff, I was not a fan of the other vets, so I decided to switch to a vet closer to home.

One of my friends went there and she told me the vet was great, but that the office staff was distant. Internet reviews often said the same.

But they were great to me.

I checked in and the gal came around the counter with forms for me to fill out. I said OK, but then she just said, I'll fill them out with you, and she went through them with me, getting Claren's basic health info.

She then called me into a room and when I asked grabbed the fecal sample out of my bag -- "favorite part of the job," she said.

The vet was good, as advertised.

The woman who checked me out came around the counter to give me the bill and then held the door for me to leave.

It was a good appointment. I just hope you don't mind alien overlords.

Thursday, October 14, 2010

I may be going to hell

At the very least I think I am getting too big for my britches.

I saw a story on USA TODAY this evening about a group of blind hikers at the Grand Canyon. It even has a fancy-shmancy video.

My reaction? Not joy at others enjoying life no matter what. Not hope for humanity if people can accomplish so much. Not even a little bit inspired really.

No, my reaction: Where is my story? I rock climb, have ridden horses competitively, have a really cute and helpful dog. What's a guy gotta do?

Tuesday, October 12, 2010

Too cool for words

In our restructuring at work, people were put in two overall categories, and today my group met.

One of the questions asked of the bosses there was why some people were put in this group and some in the other group.

I immediately decided that the reason we were in out group was because we were cool, and I decided to share my wit with the room.

Keep in mind that I have worked with all the people in the group for years, some as many as 10, so I was pretty sure it would go over well. And I thought that a little joke from the really quiet staffer would be funny and relaxing. I mean restructurings are hard.

I waited as the boss explained why we were in this group, then I said: "I thought it was because we were cool."

A speech therapist once told me I speak really quietly. I think it is partly my hearing and partly weakness in vocal muscles. She had me speak in what seemed like a yelling voice to me. She said it sounded normal volume-wise.

I wish I remembered that at the meeting.

I made my hilarious point, and not even the people right next to me heard what I said. The entire room, however, heard that I said something. Every eyeball in the room turned to me, and people asked what I said.

The good news: I did not throw up or pass out. And when I repeated my joke, everyone laughed.

Monday, October 11, 2010

My dog is such a jerk

Claren'll bark like crazy when we are getting ready to go out.

And then she will run and grab her ball and lie down chewing it. Sometimes, she will tire of chewing and just lie there with the ball near her mouth ... until she hears the click of my chair, suggesting I may be moving toward the ball, then she grabs it.

If someone else, anyone really, comes over, Claren drops the ball at their feet and barks at them to throw it.

Honestly, I just want to know what she is thinking.

I think she thinks she is too cool to play with her dorky dad. If she does, she is a total phony. I left her home when I went rock climbing Friday and she just moped around without me.

Mom suggested that Claren thinks it is too hard or dangerous for me to get the ball. This theory loses water when I do grab the ball in her mouth, and Claren tries to tug my arm out of its socket to get it back.

I know I'll never know. I'd love it to be No. 2, but I know my dog is just a bad egg. A bad egg I love but still a bad egg.

Saturday, October 9, 2010

You can call me Matty Claus



Because I climbed up and down the Chimney at Rockville Earth Treks last night! And it was a really hard climb.

We had to do a little regrouping at first. It was a new team. My good friend J climbed with me, and each of us had belayers who I had not met before. P and A were very cool, though.

It is pretty awesome how J finds these good, patient people to help me. And she found another last night while we were climbing.

J kept telling me she was not as aggressive as my other climbing partner. But when we were on the wall, I didn't want to stop she was cheering me on so much.

One thing we had to tweak. I realized halfway through that J was saying this leg and tapping one. I didn't feel it, so she began smacking the wall next to whatever leg. J also lets me get away with using my right leg too much. I need to work on the left leg.


We started on a regular wall and that felt almost easy. I tried to ignore all the kids zipping around the walls who probably weren't born until after I turned 30.

Then it was time for the Chimney.

Unlike the other walls I had climbed, this one had both a negative incline and an outcrop.


Negative incline means that the wall leans a little out so parts of the wall are farther out than the bottom. The other walls had been straight or leaned a little back so the bottom was farther out. Instead of just worrying about climbing, you have to worry about staying on the wall.


The outcrop just means there is something to over from underneath.

Before we started, J kept telling me that it would not be bad if I didn't do this on my first try and that I could always try again.

The way I look at it, though, is I don't want to have to climb through all the negative incline, only to be outdone by the outcrop or whatever. J says "All day baby!" I suspect it doesn't really mean this, but I will succeed at most things if I am given all day. And I took a rest or two on the Chimney. P held me steady so I was safe.


And then I was up there! ADB!

I did a third climb on an easy wall, and it about killed me, but I made it to the top of that one, too.

Thursday, October 7, 2010

God bless me

My blood-check proved inconclusive today after I sneezed and flew into my keyboard at work.

My glasses flew off, and I felt something wet on my nose, but my hand did not come away all bloody. I ran my hand over my face again and didn't exactly see blood but noticed my thumb was turning a shade of red.

Right on the bridge of my nose under my glasses, he told me. He also correctly guessed I had sneezed and said he had sneezed while driving down the highway last week. I guess a bloody nose is better than that.

Tuesday, October 5, 2010

I think I broke my ear

Last night was bad.

I got up to go to the bathroom fine, and it went downhill from there fast.

I won't bore or disgust you with details, suffice it to say my bladder was being a fucking pisser and I had to change pants.

I decided to call Mom for a little help and then something happened.

I don't know if I reached for my cellphone and lost my balance or if I coughed or just breathed funny, but I fell. I had not done my seat belt because I needed to changed my pants and hadn't pulled them up. I smacked my left ear into the 4-inch wide wall at the front of the shower. Then I sort of slid down the wall, smashing my cheek and glasses. Then I fell completely onto the floor of the shower.

Lying in the fetal position, half in the shower, with my damp pants around my ankles, I was pretty sure I never wanted to get up.

Then I decided I didn't want Mom or Dad to find me like this, and I was certain that I had made enough noise falling to wake the dead.

So I pulled myself up, brushing a hand over my face and head to make sure I was blood-free, then I called Mom for help. She must have know I was hurting because I kind of muttered I needed help, and she said she'd come right downstairs even though she couldn't have really heard me.

We got things taken care of and as she was letting the bathroom door close on me so I could wash my hands, I said: "Sorry, Mom." She replied: "It's all right, Matt."

I almost fell out of my chair again I started sobbing so hard. Instead I just collapsed with my chest on my thighs and Mom rubbing my head.

It is anything but all right that my mother who just went to her 50th college reunion has to tend to her son like that.

It is anything but all right that my little sister will have to tend to her older brother when this happens in the new house. (I wanted to say "if it happens in the new house," but I am not an idiot.)

It is anything but all right that Dad has to chauffeur me around.

Where was God for all this? What kind of being turns such a cold ear and eye on me? God should not rely on people to be there for me.

At least my people are unlikely to let me down.

Sunday, October 3, 2010

I fell into a razor

Rather than pay someone $15 to drag a razor over my head for a few minutes, I bought an electric razor. Actually, Mom bought it for me for Saint Matthew's feast day a few years ago.

I suppose I could cut my own hair, but Mom doesn't charge, so it works out great. I have saved lots of money and never thought I'd regret it ... until today.

My liberal mom, I suspect, is still reeling from last night at her 50th college reunion when a friend she had not seen in years asked her if she was a member of the Tea Party. Granted, Mom was pretty conservative when younger.

She must have still been thinking about it. That's the only way to explain what happened this morning when she cut my hair.

I felt the metal of the razor right away, and I started to ask if Mom had forgotten something, like the Number 2 blade cover. She immediately stopped, and her face told me that she did. The cool breeze I felt down the middle of my scalp was another clue.

After showing me the start of my reverse mohawk in a mirror, Mom went next door to get my sister. She has a razor with a Number 1 blade (we lost our No. 1) and we thought she might have some ideas.

She came over with her razor and her family. My 5-year-old nephew ran in, started laughing at me and started referring to it as a "tomahawk." My niece, 7, apparently brought a camera over to capture the scene. Then my brother-in-law. I forget what he said and it wasn't his words. He has some looks, though, that said it all.

My sister cut it with the Number 1 all over, and oh my god it is short. I wish I could blame this on Friedreich's ataxia, but I can't ... unless ...

I fell into a razor.

Saturday, October 2, 2010

Someone call 911 ...

The water had not quite boiled when Mom and Dad got home from her 50th college reunion.

This was good and bad. Good because they could safely pour my tea for me. Bad because their return kept me from dealing with the fact that I really should not pout boiling water out of a kettle/.

I know my sister would have come over if I had called. I was also considering texting "911" when the water boiled, but I doubted she would find tea a true emergency. Maybe if had told her I needed her help to get the homemade congo cookies?

I love that there are people who will help me do anything. I hate asking them, though.

I want to do so many things -- and I probably could do most of them -- but I need help, and it is not as simple as just asking. Schedules have to be synced up, etc.

When I spend a day mostly alone, I often think of things I could do ... if I could drive, if I could get on my trike by myself, if if if ...

Thursday, September 30, 2010

I do not want the legal pad

No one will believe that my first restructuring was actually worse than the one in Office Space, but it was and I keep thinking about it these days.

I had been on the job only a few months when consultants were brought in to help us reorganize. The scuttlebutt was that the consultants had never worked at a newspaper before and took the job to learn. We copy editors had to fill out forms with every story we read, telling whether it was a shirt, medium or long story, whether the headline was simple, medium or hard, etc. It was kind of a joke.

The day before the cuts were announced, a bunch of us were sent to learn some new task. I was among that bunch. I'll never forget that another guy was not in the group ... until he asked if he should be. The boss said OK and he came running up with his yellow legal pad at the ready.

The next day he was fired, and I have always suspected that the reason he didn't get invited to learn the new task was because someone knew he would be gone the next day.

I have never been a big meeting person. I hear poorly, so I don't go. But now I see a meeting at work and then see me holding the yellow legal pad. Symbolically, of course. I never bring a writing pad or pen to meetings.

Tuesday, September 28, 2010

Who was the upright man?

I was in my sister's yard this afternoon after work. Claren was studiously ignoring me while chewing her ball, so I decided to stand up using the picnic table as a brace.

My sister walked up after I was seated again and said she looked into her yard and saw someone standing in front of her picnic table and was pissed off that strangers were in her yard.

I thought she was going to say she was pissed off that soon after I stood, I leaned forward and did a face-plant on the table, with a loud CLONK.

She didn't know that until I told her, and she made sure to show Mom and Dad my bruised head.

Monday, September 27, 2010

I love my love seat

My oldest brother was here over the weekend, and one of the things he did with my little sister was get my love seat out of storage.

We had been talking for a while about replacing Mom and Dad's old sleeper sofa with the love seat, but we never did anything about it. No time and no pickup truck.

But my brother had both this weekend.

It is so Nice. more comfortable and a lot taller. It is nearly equal in height to my chair so it is easier getting on and off the couch.

The only thing that is harder is sliding to the floor to brush Claren and then back up. I may make that Mom or my niece's job for a few months.

Sunday, September 26, 2010

Back to the pool

Apparently, swimming could not some fast enough.

I was so tired in the pool today and now I hurt. Well, the parts of me that aren't really, really tired, they hurt.

My right knew did not want to bend either. I don't like that.

Thursday, September 23, 2010

Friedreich's ataxia really kind of sucks

My little sister came into the dining room tonight after dinner to tell us how her son, after using my bathroom, was dancing a jig on the floor-to-ceiling Super Pole next to my toilet.

I am jealous. Not just of his dancing skills. Mostly, I am jealous because he had such a successful trip to the bathroom.

Last night, I had to use the bathroom. I slid my foot off my footrest -- also know as my wheelchair, and my shoe came off.

I did not really want to try to stand up without my shoe, so I tried to get it back on. But I really had to go, so I just left the shoe on real loose.

I managed to begin my transfer to my chair safely, but my butt kept getting hung up on the top part of the cushion.

I managed then to raise myself high enough to get in my chair. I lost my shoe and started toward the bathroom. I got in and decided to sit down on the toilet rather than try to stand up with one shoe off.

I managed next to stand up and turn around, slamming my big toe on the shoeless foot into the wall. But I could not get my right knee to bend properly.

Finally, I managed to sort of collapse onto the toilet. I was sort off only on one side, but, you guessed it, I managed to slide over onto the seat. And this is where my nephew again comes to mind.

Ask most people what the tuck rule means, and they will probably say something about football and the quarterback. Not me. I think of my nephew who often needs reminders to push his parts down so stuff goes into the toilet, not the floor.

I need to remember this rule. Actually, after sliding across the toilet, I did try to tuck myself down, but I had to go quite urgently.

And goddammit, after managing all the f-ng things I managed just to get there, my pee went all over my clothes and the floor. It is just so frustrating.

Wednesday, September 22, 2010

Not accessible

A friend invited me to her house-warming party this weekend. It is way out there -- near where my oldest uncle lives -- but I procured a ride. I was set, even though I'd have to get lugged up some stairs.

Then I asked about bathrooms. You probably won't fit, I was told. Dang.

I'm not going.

I do NOT blame my friend or her house. It just really sucks to have to ask questions like that, to be unable to take anything for granted.

Monday, September 20, 2010

Swimming or maybe rock climbing?

Swimming started yesterday, but I did not go. The co-ordinator called last week and said they were moving the 4 p.m. class to 5 for the first four weeks. A 5 p.m. start means I would not be home and changed until nearly 7 (yes, it takes me that long). Plus, there might be opportunities to rock climb on Sundays, and that is really fun. But it is hard to get together the people needed.

I decided not to swim until they brought back the 4 p.m. class.

But the swimming teacher knew nothing about the time change. No one told her until I e-mailed her. She told me she is still there at 4, whether the class starts then officially or not. Come on out, she told me, it'll feel great.

Saturday, September 18, 2010

Home alone

Now I am not at all saying i want to live alone again, but it is nice to be totally by myself this evening (well, with Claren).

Mom and Dad had a TEAMS meeting and the D's went out for some "forced family fun," my sister called it.

I had mac and cheese for dinner and watched a really cheesy horror movie on SyFy during dinner. Wrong Turn 2: Dead End did not win any Emmys, but I had forgotten the joys of bad movies, this one starring singer Henry Rollins. It also makes me want to see the original Wrong Turn, which apparently features the same cannibalistic inbred family plus renegade slayer Faith. Good stuff.

Now I am off to read book 2 of the Dresden Files. I had another book, but it was a book for adults, and I know I am one but I have not felt like it recently. So I asked Dad to pop out to the library and get Fool Moon.

The tagline to the series is enough to demand a reading: "Think Buffy the Vampire Slayer starring Philip Marlowe."

Wednesday, September 15, 2010

The wrong side of the door

Guess who just asked his struggling company, which is planning layoffs, to spend money on him?

That's right, this guy. And in perhaps a good sign as far as the layoffs go, my company is working on a solution.

We rented some unused office space to a tenant, which is good, and they are building a door to separate us and the tenant, which is fine.

But what is not good or fine is that the six-stall bathroom with an accessible door will be on the tenant's side of the locked door.

I will still have the small two-stall restroom, but folks already use the wheelchair stall there. (They use the wheelchair stall in the big bathroom, too, but rarely.)

I got the email about the building plans, and immediately replied to my boss, the sender and others that I need a backup restroom with an accessible door. I am sure it will be settled OK, but it is just something else to worry about.

Tuesday, September 14, 2010

Dog walks girl

My 7-year-old niece has decided she likes Claren. I understand this because Claren is awesome.

Claren is cool with the new-found attraction because it means someone else to play with besides me. I am her dad after all.

Claren also likes it because it means someone to take advantage of. Not like I am a drill sergeant with her, but I make her walk next to me and not follow her nose wherever it goes.

My niece wanted to walk Claren last night and since I'd be there, too, I let her.

Wow, did Claren take advantage. She walked my niece, who to her credit never let go of the leash, through the front yards of all the new houses on our block. She then wandered all around the yard of a neighbor with Dachshunds. Claren never dragged my niece exactly, but just went where she wanted and my niece followed.

From the street, I would call at Claren when she got to far away and she generally changed her direction, but did not always come.

A mother who was out with her kids watched us carefully and asked us if we needed any help.

I told her no, thanks, and we didn't need any. I can recall Claren in an emergency. Mainly, though, I was having too good a time watching the whole episode.

Saturday, September 11, 2010

Is it ever not a time to cry?

Fall is coming.

I don't know this because I wore a long-sleeve shirt to work Friday, Or because my feet are cold when I go to bed. Or because ragweed is driving me crazy.

I know fall is coming because of how inexplicably sad I am lately.

It must be the change of seasons.

There are things weighing upon me: a mean world, uncertainty at work, the new house, allergies, occasional falls, what will happen with the stolen DED device on Eureka. But nothing new (except Eureka and I am sure that is not it).

I know that I will be fine eventually. But I hate worrying that at any moment I may feel like crying. I wanted to blame the generic Effexor XR I just started taking, but I felt rotten before that.

Thursday, September 9, 2010

Just yuck

I told a friend at work that I imagine that I am pretty low on the list of people you worry about running through the building with a shotgun. Not because I can't run. More because of my dislike of violence and guns.

But, I told my friend, a few more days like today could make me reconsider my non-violent stance.

It wasn't really that awful. There were just like 37 people asking me to do 37 things, and all 37 needed doing.

Plus, I slipped in the bathroom. Not that bad, but enough to remind me that I am in a wheelchair in an unfriendly body,

There is little, unfortunately, that doesn't remind me of this. I sit outside with Claren after work at home. I am sure I could grab her ball and play with her if I was stealthy and speedy. Neither of those adjectives describe me, not even a little.

One thing that doesn't remind me of my imperfect body, at least lately, is rock climbing. Even though I need a lot of help to climb, a lot of people can't do what little I can. It is a little like horseback riding was at the beginning.

I found out last night we were going rock climbing tomorrow night but then we had to reschedule. That was rotten, too. I was looking forward to climbing and seeing friends.

And my hayfever is killing me. Goddamnit.

Tuesday, September 7, 2010

Job or exercise

I figured out how to exercise every day: I just need to quit my job.

I read about other people with Friedreich's ataxia, and they talk about how much they exercise and go off on "use it or lose it" ideas. I am not sure they work full time.

I rode my handcycle for maybe two miles today on the bike trail. It felt really good, especially on the fourth trail when I looked at my odometer and it said 13 mph.

Granted, my odometer is generous to me. It tells me I have gone a mile when I know it is only about two/thirds of a mile. So 13 mph might be more like 10, but it still felt cool -- wind in my face, pavement rolling beneath me. Heck, I was hardly pedaling.

Then, I realized: If I can go 13 without pedaling going out, pedaling back is going to suck.

It did.

I was pretty exhausted by the time I got to my pit team of Mom and Claren who were sitting in the shade at the end of the third trail.

One of the things I don't like about the handcycle is that it is hard to have Claren run along side me. My hands are pedaling so I can't hold the leash, and the trike is higher than my recumbent was and it is not real easy to pick up after Claren.

That is the main reason Mom comes. She walks Claren and I ride past her and then return to her. But it is also nice to have someone to stop and chat with while I catch my breath. Or someone to give me a subtle push when needed.

After I got back, I basically napped the rest of the day.

This is where quitting my job comes in.

Monday, September 6, 2010

Not sure about the cigarette trees

I made sure to listen to "The Big Rock Candy Mountain" today in honor of Labor Day. I guess it is really about hobo life not unions, but I always associate it with Joe Hill, who has his own page on the AFL-CIO website.

Actually, for years I didn't associate it with hoboes or unions. For me and my siblings, too, I imagine, "Big Rock Candy Mountain" was the red 45 that had a small hole in the center like 33s.

For the younger set, I'll explain: 45s were records of singles. They generally had a 1 and a half-inch hole in them that required an adapter to fit on record players. They were usually black. Our copy of "Big Rock Candy Mountain" was a 45, which referred to the speed the records were played, but it was red and it had a small hole, so you would not need an adapter.

Not very bitter, huh? I am struggling with a bit of writer's block these days, but I am off tomorrow and will try to write again. Anyway, happy Labor Day.

Friday, September 3, 2010

Who needs comfort in a fire?

After 9/11, firefighters were the coolest people around. Their luster may be fading a bit: No one believes me when I tell them the firefighters told me to stay in the stairwell at work in the event of a fire. Rather, they believe that I was told that; they just don't believe the firefighters' claim.

I don't know fire procedures and safety, which is why I asked the fire chief when he came to our building. He told me that the stairwells are fire secure, and fresh air gets forced into them so I will be able to breathe. Just wait there for us, the chief said. We know how to get people in wheelchairs out safely.

This makes sense to me.

On the actual 9/11, a co-worker carried me down 10-15 flights of stairs on his shoulder. Another lugged down my chair. This was at our old building, and it was a rather panicked evacuation that left me a little uncomfortable, but much better off than the guy who carried me down, whose nickname is Thor.

By my desk, we have a stair chair, with treads not wheels, so it goes down stairs, but the fire chief said that while a stair chair is great to have but just wait for us.

We are only on the third floor, too, so I am cool waiting. The stair chair is not super comfy. My boss waits with me.

Today, the fire alarm went off. It turned out to be a false alarm -- I went in the break room and it smelled like burned cinnamon Pop-tart so that may have set it off.

Afterward a friend asked me what I do in fire drills and I told her that I wait.

No, she said, if there is a real fire, I'll get you out.

It would be more fun to get carted out by a friend than a firefighter anyway.

Tuesday, August 31, 2010

No skydiving for Matt

It would be OK if I died.

No, wait. It would not be OK; it would royally suck. But do dead people feel that things suck? It would be really really rotten for everyone here, but I'd be dead. I imagine that if it happened I'd be cool with it. I mean I believe in God and an afterlife that better be totally bitchin'.

Being dead would enable me to get on with the plans for a top-to-bottom reorganization of religion. And if the right folks don't go along with the reorg, they will find themselves in Wisconsin. If there is real opposition to the reorg, I go hostile on their asses and take the question to shareholders.

A dead person would also not wake up for dinner, go to the bathroom, run over his left foot, really have to go despite the foot that is under the chair, somehow manage to stand up at the toilet, bang the heck out of his left knee on the toilet bowl and pee all over the floor and just enough on himself that it requires changing. I imagine.

All of the above was my thinking when I decided to go skydiving -- well, not the reorganization part, that's new.

Much like she did with rock climbing, my adventure sport friend J, who does every every extreme thing I am sure, found out I wanted to skydive and set out to make it happen. We all should be so lucky as to have that kind of friend.

And she did mostly. She talked to the owner of the skydive place, found out it was mostly safe, got a superstar skydiver to be my jump partner (although that fell through).

All I had to do was call and make an appointment, and on Sunday I did. Or really, Mom did because I can't hear too well. The woman taking reservations told her not to tell me this but that a woman who uses a chair jumped the day before and broke her leg.

Mom, of course, told me, and that was it for me: The dream was over.

Dying, I can live with (HEE). Breaking my leg? Oh, hell no. The idea of being more helpless than usual struck fear into my heart and is going to keep me firmly in touch with the good earth.

I have too many things I need help with, and breaking a leg would mean everything required help. Makes me want to throw up just considering it.

I have since learned that the jumper who broke her leg was 200 pounds and that I would likely be OK, so skydiving is back on the maybe list. But not soon.

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