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. 

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