Monday, March 31, 2008

Matt's best friend

One of the hardest things I do these days is going to work without Claren.

It isn't that everyone ignores me and asks where my service dog is. I will admit that got old real fast when I couldn't bring Claren in because I broke my collar bone. Here I am with a bloody brace, and people are asking if my dog is OK.

I just miss her badly. I look under my desk to get her before I go anywhere. I leave things on the floor because she is not there to reach them.

She has become a part of me, and when she is not there I am not all there either.

Claren pulled a muscle Sunday, I think, so she had to stay home Monday because she could not really walk. She was limping around and looking pathetic.

I don't know if I looked pathetic but I sure felt it. I told my little sister that I wanted to cry or barf. I missed Claren; I was worried about her; it just didn't feel right without her.

Maybe it is a good thing I have no prospects for a girlfriend; she or Claren would be way jealous. (Note to Natalie Portman: We would totally figure it out.)

I'll decide tomorrow whether to give her another sick day, but I am loathe too do it. If she is out sick, I wind up feeling poopy.

Saturday, March 29, 2008

Man knights dog

From here on out, I will be referring to Claren, my peerless service dog, as Sir ... (yes, I know she is a girl but I am all about equal rights), Sir Showoff. Either that or Little Miss Showoff.

She passed her recertification test with flying colors. I was pretty sure she would because when eyes are on her, she is close to perfect. When we're home alone or out for a walk, then she can be a little stinker.

What I'd give for a few sourcesI

I hate reporting.

In college I got taken to task by the head of the board of visitors at UVa. for something. My editor in chief did not seem to think it was a big deal, so he was probably just mad, the story was not wrong.

Some peaceniks got so mad at me they complained, too. I went to their meeting and just listened. I didn't tell them I was a reporter, not that I hid it, I just didn't stop their meeting, stand up and announce myself. I did tell the people near me, but one of them wrote a letter accusing me of deceit. I rolled my eyes, but wish I had figured out a way to tell people I was a reporter.

In grad school, I tried to interview a scientist who reportedly was the basis for Jeff Goldbloom's character in Jurassic Park. I was pretty excited, but he turned out to be kind of a jerk. He answered every question with a one-word answer. It was probably my fault -- I should have asked better questions -- but still.

I don't mind answering questions and talking about myself, but I always felt like I was imposing as a reporter. Plus, hearing and writing fast have never been my strong suits, and they are really crummy now.

Nevertheless, I wanted to be a journalist. Gay Talese says in The Kingdom and The Power that Harrison Salisbury of the New York Times was destined for journalism because he was very shy and very curious.

That's me, so I became an editor. That way I could just read stuff.

But with my friends, I find myself back in the reporter role because they don't volunteer much. I have to ask. It is hard for me, and everyone, I am sure, and when I find something obvious out that I didn't know I feel stupid.

For instance, I did not know this couple at work was dating until I got an invitation to their wedding. Well, not an invitation really. It was an email from the groom that he had sent to a number of folks telling us about the wedding website and mentioning that one could RSVP there. I did nothing because I never got an invite to RSVP to. Then I got another email that went to a subset of that first email's respondents asking everyone to please RSVP. I emailed him back that I had never been invited so I didn't RSVP. That was the last I heard from him.

Another for instance: I found out a friend has a boyfriend. Part of me was glad because she is smart, funny, cool and beautiful, and I would hope someone like that would have someone. A little part of me was glad. Mostly, I was kind of sad. She was, I thought, my only unattached friend, and it made me feel better about my unattached status. If she did not have someone, how the heck could I? She doesn't have to deal with a wheelchair. I'd be lying, too, if I didn't say that part of me held out hope we could be unattached together in some way, shape or form.

My friends rarely vent to me either, which maybe I should be glad about. But it actually makes me feel a little left out. My little sister said people probably feel a little stupid venting to someone in a wheelchair, but I miss it. I never think or say: "You think that's bad; try getting into a wheelchair from the floor, you lazy ass." It would make me feel more normal to have regular problems to think about.

I guess I need to do some more reporting, but what if I get sued for slander?

Tuesday, March 25, 2008

FA is such a load of crap

Since my brother and I first started going through FA, one of the problems has been our stomachs. I am a fiber fan. It doesn't solve what my primary care doctor calls irritable bowel syndrome, but it helps … sometimes … if all other factors are going my way … if my daily routine has not changed … if the food I have eaten is normal. Wait, scratch that. I don't think it has anything to do with food. Last night a pasta salad set me off. Pasta salad? And no, you don't really want to know what "set me off" means; safe to say it is not something I would wish upon others. Maybe Darth Vader.

This first started happening to me in college, and I blamed the institutional food. I got a friend with a car to drive me regularly to Bodo's Bagels to get a turkey sandwich on a salt bagel. That I could handle. I guess I owe the food service at the University of Virginia an apology.

No doctor could find a cause for my stomach woes, so I sucked it up. I remember kneeling down, bent over my dorm trashcan taking a teaspoon of Kaopectate. I used to slam my knee into the floor to keep from gagging. I still slam my knee into the floor, but it is no longer on purpose.

I mostly just suck it up even now 15 years later, because I am sure it is related to FA, even though no doctor has told me so. In fact, early on they told me it was unrelated. My brother, lots of anecdotal evidence from the Web and my own issues are all just coincidental to FA. Right. (Not that I don't still love the medical profession.)

I just looked over a few fact sheets on FA. None mentions stomach problems. I also really should not look at such fact sheets. God, how depressing. "Some people with less severe symptoms of Friedreich's ataxia live much longer, sometimes into their sixties or seventies." They make it sound like good news.

Monday, March 24, 2008

Mary Lou Retton, Kerri Strug? Amateurs!

Here is how flexible I am. This afternoon I had my back pretty much flat against the closed toilet lid. My legs were splayed out in front of me, my sock-covered feet reaching the tiled floor beyond the throw rug in front of the toilet. My two arms held me in this position, hands locked around two grab bars.

I honestly don't think it is getting harder to get up off the floor. I had no problem during an early fall last week. I have just had two times where it was a real struggle; both times I was sweaty and out-of-breath when I regained my seat.

Is this what they mean by floor exercises?

Sunday, March 23, 2008

ZZ Top: Artists of adaption

When I was 14, I bought ZZ Top's "Afterburner."

It was not that great an album: no "Legs," no "Sharp-Dressed Man." But
one of its tacky little tunes pops into my head on a regular basis these days: "Velcro Fly."

Well, it feels so right when you squeezed it tight,
when you reach the end do it over again.
I say yeah yeah.
I say yeah yeah.
There ain't never a catch, all you got to do is snatch,
do the velcro fly,
do the velcro fly.

The bearded boys no doubt had something tawdry in mind when they sang that. I'm not thinking cheap thrills, though; I am thinking about pajama pants and modesty.

I can't do the button fly on my pj bottom. Well, that's not entirely true. I could do it, but would never get it undone when I needed to use the bathroom.

I just leave the fly open and trust my wheelchair seatbelt to prevent any exposure. I also figure: Who the heck is going to stare at my crotch?

If I had a velcro fly, though, I could do and undo my fly to my heart's content. Or my bladder's.

Friday, March 21, 2008

Playboy is no passion play

One of my nephews told me a few years ago that he wanted to see Mel Gibson's "Passion of the Christ" because of the violence. I told him this was a pretty bad reason. It seems a little like telling your mom you only read Playboy for the pictures of naked women. Either way, you're just picking out what someone else will find objectionable.

I never saw the movie, but I like the passion story. The movie seemed too violent, even though the meanness is sort of what attracts me to the story. I know that we as Catholics are supposed to feel energized and revitalized by Easter and the resurrection, the triumph over sin and death, blah blah blah.

That stuff really just makes me sad. God can come back from the dead but can't heal me? God can triumph over untold numbers of sins but can't triumph over Freidriech's ataxia? Won't seems like the real word.

That's not for me. I am a Good Friday Catholic. I don't know if there are any others out there who get some happiness from Good Friday. Not because Jesus dies and evil seemingly wins. Don't worry, Mom, I am not that far gone.

Happy is too strong a word, I guess. I am relieved that some part of the Trinity knows exactly what it feels like to be human and to hurt.

Maybe Jesus didn't smack his knee on the tiled bathroom floor when he was standing to pull up his pants, but he did fall. Our situations differ much more than that, but I know that he felt pain, fear, anger, abandonment by his God and his friends. And I also realize that I am being a bit of a drama queen by comparing my situation to Jesus'.

But that is why I still have faith in God. Not because Jesus rose from the dead, not because he forgives sin, but because Jesus knows what it feels like to be forsaken.

Wednesday, March 19, 2008

I can be an idiot if I want

I just got back from a quick walk with Claren. As is usual when there is little traffic, I stayed on the road for a short stretch. It is a lot smoother than the sidewalk, and there is a turn lane the entire stretch so I just stop on the side if a car comes.

I was halfway down the short stretch when this woman on the sidewalk with two wiener dogs starts calling to me. Claren was awful excited by the wiener dogs, so I didn't really want to stop but the woman kept talking.

Finally, I got close enough. "Are you stuck in the street," she asked. I told her no, it was just smoother. Then she added: "You know you're going against traffic?"

I bit back the answer I wanted to give: "No f----ing way!" and just said yeah. She said OK, sorry and went on her way.

I know she was trying to help but just because I am in a wheelchair does not make me a moron. If I want to disobey traffic rules and tempt death, I totally do not need some do-gooder coming along and making me feel guilty.

Tuesday, March 18, 2008

I've fallen and can't get up, sort of

A little tip from me to you. The first time you choose to get out of your new wheelchair and on to the floor, you probably should not do it in your condo all alone. Your new wheelchair might have no handholds to reach. Your feet might slide on the floor. You might get so tired trying to get back in your chair that you finally break down and call your parents to come help you up. Then you might make one last effort that succeeds so you have to call your parents to tell them to turn around and go home.

Holy crap, that would really suck.

Monday, March 17, 2008

Hall monitor

As I was leaving work today, I passed Ben. Ben works about two rows away and later hours so he was headed back to his desk. He didn't go the way I came, though, he walked down THE HALL.

It would make a better story if I had never seen or used THE HALL, but come on, I have been in the building since it opened in 2001. I have been down it a handful of times, I use it rarely, though, because you have to open a big glass door.

I just wish I could use THE HALL. It would only save me a few seconds, I know. It's a stupid little thing -- I actually dreamed during my post-work nap about filing an ADA complaint about it and the lawyer just laughed.

Sunday, March 16, 2008

Too busy to sh*t on today

Since Thursday the switch on my life seems to be alternating between really freakin' busy and off. This is probably better than the alternatives, which leave me time to think.

Friday was the worst. I went in an hour early because the wheelchair guy, Sid, was coming to fix the arm height.

I wound up staying an hour late. There was a lot of stuff to do and someone was on vacation. The real problem, though, was that someone asked me to do a chart for her, but did not send the data when she said she would. I break my back for people at work; sometimes I think I am stupid as he…

I also had a run-in with the automatic soap dispensers in the bathroom at work. Sid ordered some stuff for my chair to enable me to wheel under things like sinks, but I still can't. He said it should come this week. Unable to wheel under and wash my hands, I lean over and grab the soap dispenser to steady myself in a very unnatural position. This turns on the dispenser and it flings a glob of soap down into the sink, usually not where my hand is and once where my sleeve was.

Since I was so late at work Friday, I went to Mom and Dad's for the night. After a quick dinner, I slept pretty much 12 hours straight, got up for about three hours – enough to have breakfast and lunch and be called "Uncle Lazy Bones" by my nephew and niece – then took a two-hour nap, went home, stayed up till 9 and went to bed.

I did have time to share with a friend my latest theory on why I have been feeling crummy lately. I told her that I am basically a coward. Things are so much better in my life than they were 10 or even five years ago – not disability-wise but life-wise. But they still are not as good as I want them to be. I am, however, scared of making a misstep now that will plunge me back to the 5- or 10-year-ago me.

What she told me is going to stick in my mind forever because it is such a gross image: "If you have one foot in yesterday, and one foot in tomorrow, you shit all over today."

She's right, of course. Most of my worries are stupid. I know that. But I am in a place of modest comfort now, and who wants to jeopardize things when you are even just modestly comfortable? I am hoping that this new house slaps me out of my distress, but I am not counting on that being built until the end of next year.

I guess the answer is just to stay busy. Maybe I should thank the woman who hosed me with that chart data?

Wednesday, March 12, 2008

My enemy: A piece of land

Once again real life (and sort-of real death) intrude on my navel-gazing.

I had planned to write about how everyone but me is getting older, and it's not a good thing. Everyone else seems to become more of an adult, more mature. Me, I am the same as always. My nephews and nieces are about the only ones I feel older than, but that is changing. One is getting recruited for college. Lord knows, he will soon be doing things I can't imagine.

But as I said, real life interrupted.

I was out for a walk and was up near the trash can I frequent to toss Claren's poop. If a place could be a person's nemesis, my nemesis would be right off the sidewalk near the trash can.

There is a big cement plate in the grass between the sidewalk and the street. It doesn't go all the way to the street, though. It stops so there is just enough room for wheelchair wheels to get trapped. And all the grass around it is sunken and slick.

I got stuck there a few years ago and had to call Dad to come help me because no cars stopped to help me. Actually, one did but it stopped right as Dad pulled up. I didn't want Dad to come out; I wanted the Herndon police number so I could call them. But he insisted. I put the police in my cell phone soon after, but I did not have the police in my new cell phone so I was worried I'd have to call Dad again tonight.

I have not got the intricacies of driving the new chair down yet. It is a mid-wheel drive and it just feels odd. It turns real easily and tends to slide left and right. I am not quite sure what happened, but I found myself running off the sidewalk on to the big cement plate. I stopped before I went off the curb, but I was stuck with my wheels on and off the plate.

The new chair does not go back that well when it is in a tight spot either, so I edged it forward and then put my feet on the ground and pushed it fully on to the plate. From there I got back to the sidewalk. It only started sliding off toward the street once or twice during the whole time.

All in all, I rather be navel-gazing, even naval-gazing. I like ships.

Tuesday, March 11, 2008

My life has not become perfect

I try not to set my expectations very high so I don't get disappointed. It rarely works.

I think my subconscious develops these super-optimistic hopes, and either it hides them from my conscious self or my brain feigns ignorance of them so I can say my expectations are low but still have sky-high hopes.

I got a new wheelchair. Unsurprisingly, it is not perfect and has not solved all my problems.

On the whole, I think it is a positive. It looks better, goes faster, is quieter and comfortable. But it keeps me from wheeling under my sink, desk, keyboard tray and table. I asked the wheelchair vendor about it and he said he would get back to me with some ideas after 1. I guess 9 p.m. is after 1 p.m. I am not at all disappointed. Even if he has no good solutions, which would be hard to believe, a guy at work offered to make it work. He is a builder (planes, cars) in his spare time, and he said he could easily develop something to let the controller swing away so I could roll under things.

The new chair is also rougher going over cracks in the sidewalk. I feel every pebble. It is probably safer, though; I have not yet felt like it might tip over. It also has an odometer, a battery gauge, 5 gears and a speedometer, so yeah, it is cool.

I can't stop feeling mad that I did not foresee the issues with rolling under things. And I am disappointed with the chair. I am totally emphasizing the negatives, I know.

Perhaps it is the change in seasons that has me feeling rotten or the change to daylight saving time.

I guess I just have to lower my expectations. For instance, Buffy the Vampire Slayer is not going to come over to see my sweet chair. Rogue slayer Faith might, though.

Monday, March 10, 2008

What's subtle?

A wheelchair is about as subtle as a 732 pound naked man trying to dance Swan Lake.

I guess this is why I ordered the candy-apple red wheelchair. I had a drab green one before, and it is not like anyone overlooked my chair. So the new one is kind of my "what up, mother---ers."

I don't know if that is better than being drab, but I do miss being subtle.

The other night I saw someone walking a dog and I started to cross the street, because that is where the trash can is, not to keep Claren away from another dog. In the middle of the street, I saw it was a person who likes Claren and who I like to chat with. Of course, though, I can't simply turn around. No, I made a big circle in the street -- thankfully no cars were coming -- to talk to her.

Or today, I was leaving work at the same time as a friend. I would have liked to say "I'll walk out with you" or something, but she was going the other way and we both were talking to our bosses. And it is just damn near impossible to maneuver a wheelchair so you can catch a friend without it becoming some grand, show-stopping act.

Other quick hits from a crappy day:

• I asked the wheelchair vendor about these two problems with the new chair. Overall, it is nice. My boss said that as a former hot rodder, he liked the colors. But the power switch turns on by accident quite easily. I'll turn it off and then stand up to transfer. Often my leg will brush the side of the controller and turn it on. Or I'll be changing clothes and a sock will brush the switch and turn it on. I haven't hit the joystick after turning it on, but I fear it is just a matter of time. I ran into this problem at dinner last night and at work today with the new chair. The controller won't fit under my table, desk or keyboard tray. I can lift it out of the way but then I lose the support and stability the arm provides. It is causing me to lean more into the lateral suport, too, causing discomfort, so I swung that away and lost that support.

• Also, one should not use it without the foot rest being down. I tried to just go to the bathroom from the living room, but I got stuck in the hall with my poor right foot at odd angles under the front wheel.

• My night sweats seem to be confused by the switch to daylight saving time. I fell asleep after work and woke up for dinner but had to go change clothes because one could have wrung out my shirts.

• It now needs to be a 30-minute rule. I brought my dinner over on my rolling tray and sat down to watch "The Simpsons." A dinner roll fell and despite all my looking I could not find it till I got up and saw it on the floor in front of Claren's toolbox. I did eat it.

Sunday, March 9, 2008

I'm too sexy for my chair

I got my new chair today. It is pretty cool; I mean as much as a symbol of disability can be.

It is quite comfy and has some features that help me where I need it. Of course, they make me feel more disabled. I got a lateral support because I lean left. The controller also has all sort of add-ons available, so when I need a tile program or something I don't need a new chair. And there is a headrest that I should use when I travel but can't put it on and take it off myself so it might gather a little dust.

There is one other thing about the chair that stands out: It is cherry-apple red.

A few years ago, a friend told me I was "so incredibly alive and vibrant." I don't think I am really, but perhaps some tiny bit of my brain and subconscious is. It was that part that ordered the showiest color I could find. It is that part of me that also likes having Claren around not because she helps me but because she makes me stand out.

My worry is not that I'm too sexy for my chair; it is that maybe it is too sexy for me.

Make me over, Ty

I applied to Extreme Makeover Home Edition last week.

It was very last minute. One of my sisters-in-law sent me an application that said they were looking for Virginia people. I kind of put it off and then finished it the day it was due.

We'll build a house, regardless, of course, but how cool would that be: to get a home built on TV. Here is the little story I wrote to show we are deserving. I wrote it with some help from my newspaper sister and some last minute editing and fact-checking from Mom. It is a little schmaltzy but not untrue at all, and it is from my heart.

When I was growing up in Falls Church, Va., I quickly got used to people saying: "Oh, you're Simone's grandson" or "Oh, I know your family."

Gram came to Virginia at 23 and made her home here. She married a man who built her a home in Falls Church , and she began to make the community her own.

She more than succeeded. I lived next to her for much of my life, and I never saw her turn away someone in need. Grandchildren, their friends, visiting students and many others took up residence in her back room when they needed a place to stay. One of my favorite stories about her "boarders" is about Mark. The police showed up at Gram's house to arrest Mark for something stupid he had done. Gram didn't hide him or anything like that; she just wanted to know if Mark could finish his dinner before the police took him off. To Gram's chagrin. Mark did not get to finish his hamburger pie.

When she died 16 months ago at 94, the number of people who gathered or wrote to say goodbye was incredible. Everyone, it seemed, had a story to tell about Gram's kindness and loving influence on them.

Even in death, Gram is a help to me. It used to drive me crazy that when she was alive, she used to say how alike we were in our abilities. Isn't it awful, she would say, that we have to rely on your mother to drive us anywhere. I could never point out to her that she was a 90-year-old woman who had lived a wonderful life and I am a thirty-something in a wheelchair with a ravaging genetic disease. Now, though, I can talk to someone who understands what I deal with.

And she is helping bring me back to the community I grew up in and giving me strength and comfort at the same time.

Gram loved everyone with a great heart, even my sister and me, the two youngest in our specific family, who probably got along the least well as young children and young teens. Then in college, we found out more about ourselves and about each other. Now we are the closest of all of the family in some ways.

We are about to become closer.

My brother T and I have a genetic condition called Freidriech's Ataxia. It's a progressive neuro-muscular condition that has landed us both in wheelchairs and affects very waking moment of our lives. For me, having a disability means having to struggle almost every second, whether it is to holding my head steady or swallowing water. T is married and lives with his wife in a fully accessible condo. I live in a condo that is kind of accessible about 30 minutes away from my parents, who do more than I can say to make my life flow as easily as possible. But it is far from easy. I take public transportation to my job, but it is not convenient or even safe sometimes so Mom or Dad drive out to drive me in some days and drive me home most days. Then there is the time I am alone. Every single thing I do requires many times the effort it would require a healthy person. I fall regularly and hurt myself. Alone.

Everything is about to get easier, or at least easier to deal with. My sister and her family plan to build a home on property we inherited from Gram, a home with an accessible apartment for me and a yard for my service dog My parents will be next door. I will again become "Simone's grandson," or maybe the torch has been passed and I will become known as "Joe D's uncle."

I know it won't solve all my problems, but it will be huge. I will have family and love seeping into me everywhere I turn. And I'll always have Gram.

Saturday, March 8, 2008

I am feeling very sleepy

I woke up today at the same time I do every day I don't work: 6:30. That is one hour and two minutes later than I get up on work days. For some reason my work-day alarm goes off at 5:28, and I never change it.

After I took Claren out this morning I had breakfast and read the newspaper. Then I went back to bed to read the rest of the paper. I made it through the style section, where I learned that smart people are often montrously stupid. Then I got really tired and fell asleep.

I woke up again about noon and lay in bed dozing for close to another hour. When I finally did get up there was a phone message from Mom. There is a phone sitting on my bed but I sleep right through it all the time. I called her about 1, just in time apparently. My little sister told me that Mom told her she was going to drive out to my house if she had not heard from me by 1.

After calling Mom and having lunch, I took Claren for a walk. Then about 3:30, I fell asleep for another hour.

I hate sleeping so much; it is so wasteful and takes time away from important things like reading comics. I can't help it, though, and now I am going to bed before I fall asleep. After all, I have spent almost 12 hours out off my bed.

Friday, March 7, 2008

I am too funny for my own good

I left Verizon Wireless recently for AT&T. Mainly it was because I wanted to get a cheaper plan. I am now on the plan of my brother-in-law. It costs less and the service is better.

Verizon, though, is not an easy one to break up with. It is sending me postcards, saying things like "We want you back."

One of those postcards caught my eye as I was transferring into my LaZ-Boy tonight. Out loud, I responded: "But I don't what you." Hilarious, I know.

My jokey little outburst threw my transfer off, and I started to fall. I caught myself, but my left foot was caught under the rest of my leg. I couldn't stand up; I couldn't free my bent-backward foot. Finally, I just fell backward and hoped for the best.

I thought I was going to throw up at first, but that wore off and it just hurt like hell. Then my foot came out from beneath me.

I may rejoin Verizon just to stop the pleading postcards.

Sunday, March 2, 2008

Matt kicks ass

Maybe it is a good thing I have Friedreich's ataxia; otherwise I'd be a total jerk ... or at least a bully.

A while back I dreamed about beating up a third-grader. I had the decency then to make myself an eighth-grader.

The other night, though, I dreamed about egging kids to fight and I was 36 and they were like 10. What is wrong with me?

It was their fault, sort of. We have a huge Catalpa tree in my parents' front yard. The tree limbs go everywhere. It is not in the best shape now, but it is still a grand tree. I broke my arm swinging on it, and it was the best places to find "Freds," which is what we called empty locust shells.

The kids were climbing in the tree and sliding along its limbs like cartoon characters do, and it looked dangerous. One of my brothers was in the front yard but he didn't see them. Neither did my little sister, who was on the front porch with me.

I saw them and didn't like what they were doing, so I yelled at them to get down. I started walking toward them, too.

The kids started climbing down and jogging away down the street, and things get a little hazy at this point. One of them said something like "You can't tell us whet to do," but I don't recall if I provoked him. I do recall my response, though: "I'll tell you whatever I want, jackasses."

At this point they turned around and said something else and I retorted something, all the while wondering if I could take five little kids despite my FA. I knew I would be wobbly.

I never exactly found out. I don't recall the fight scene, so maybe I won, maybe I lost. All I do know is that afterward there was a Supersoaker water gun lying up against a fence where one of the kids left it.

A winner wouldn't have left his water gun.

Is it bad this makes me feel cool?

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