Monday, August 31, 2009

No doors!

In Matt's perfect world, every door would be like the ones in the Get Smart opening scene.

Actually, in Matt's perfect world, he wouldn't have Friedreich's ataxia, so then he would not be bitter and this blog wouldn't exist.

But back to doors: I hate 'em.

The bathroom door: I often can't get in before it closes and it often gets caught in the wheels of my chair.

The outside door: You have to push from the top to open it, but sitting people can't reach that high often.

The porch door has a nasty threshold and I can never seem to unlock it properly.

Automatic doors close on me or Claren. Doors on some stalls are almost impossible to close (but that might be because I broke the auto closing mechanism. Maybe).

Other doors are rotten, too. And doorways. Elevator doors.

But imagine CONTROL's maintenance bill. Maybe I should just live outside, but I hate camping.

Sunday, August 30, 2009


Back in March, I posted my top 25 Springsteen songs on Facebook. I surprised friends and maybe myself by making the cover of Jimmy Cliff's Trapped No. 3.

Seems like I'm caught up in your trap again
Seems like I'll be wearing the same old chains

I suspect Mr. Cliff wrote the song about being ties up in a gal's mind games, given the line "seems like I've been sleeping in your bed too long."

I have been feeling trapped lately, but I can't blame some gal.

It is depression that's got me, pretty tightly the past few days. I spend more time than I like just sitting or sleeping or wanting to cry.

Normally, after a new medical treatment, like braces, I get mad because it may work some but it doesn't solve all my problems. Now, though, I am frustrated that my braces aren't even something I can wear full time. I bought them, but that was just the beginning purchase apparently. I am wearing one of them these days. The left one, which doesn't hurt. This means I wear my old beat-up sneakers because my nice $100 sneakers won't fit me when the braces are on, like I was told they would. My bike shoes don't fit either. I thankfully can afford to replace them, but I can't really afford the time to shop for them.

It's other things, too. Stomach issues, being told I need a new wheelchair back because the tech said I should not have the kind I have, having to wait three hours for that wheelchair analysis, Claren's allergies.

I know I'll get better mentally; I always do. It just takes time.

Tuesday, August 25, 2009

My dreams are trying to kill me

If you really die when you die in your dream, does that mean that doing a really stupid thing in a dream is like suicide?

I dreamed I was in a Best Buy that for some reason sold outer clothes on the first floor. I knew I couldn't go up the stairs, though I wasn't in my chair. I was just kind of milling around when this guy put both of his hands on my shoulders and said something in a foreign accent. I didn't know what he said so I just looked at him and smiled.

As I was leaving, I saw him watching me and I remember thinking I should be careful. But before I was even out of the store, he walked up right behind me and said, "You better stay close." And he walked me out of the store.

I told him I'd give him my money, but he said he wanted my credit cards, too. I'll be honest: This pissed me off. I mean I'd be canceling the cards as soon he left so they'd be worthless. Even more annoying, though, if something did happen, it could screw up my credit report. I remember thinking snafus on my credit report would be OK because we have finally bought the land for our new home, but ...

The credit cards were the deal breaker. I started daring him to kill me, end my misery and put himself on death row (My dream self is not very liberal). He responded by knocking me out.

When I woke up, with my credit cards and cash, I called the cops. There were like 10 or so for a simple mugging. Two were talking to me, saying the guy might come back when sure enough he did. They caught him. I remember one of them chasing him down.

The moral of this story: My dream self is a badass who is not to be messed with.

Mom almost ruined this story by saying she never heard of dying from dying in your dreams, but I decided if Springsteen uses it, that is good enough for me.

Sunday, August 23, 2009

No awkward, wheelchair boy in the water

When we got in the pool today, this kid was nearby and asked how come we were putting a wheelchair in the water. The volunteer said it was a special one so people in chairs could get in the water. This was cool with the kid, and it got better for him. He got to right the wheelchair after I floated out and then sit in it until a volunteer got it.

I did about 18 lengths of the pool today, about 450 meters. Some were without a float belt, some with, and a few were with me doing almost all the floating.

I know I was floating and swimming on my own because several times my face went under water because the volunteer did not get his hands in the right place fast enough to keep my face out of the water. I swallowed a bit of water today -- it went quite smoothly down the right pipe for some reason.

After I went under the second time, I realized that I try to take a deep breath as soon as I feel myself going under. Sounds OK, but what winds up happening is I take that deep breath right when I go under so I get a nose or mouth full of water.

I also learned how to use my head as a rudder to steer my body and stay in the middle of the lane, although it is faster to just push off the walls of the pool.

Nothing to do with swimming, but on our walk with Claren tonight, this woman at the end of the block complimented her. We were talking for a minute when one of her kids, probably around 10, popped off: "Why are you in a wheelchair?" The mom was horrified and I wish I had thought of something clever to say.

I just said something about a genetic disease with lots of ums in the answer.

The kid was wearing a Power Ranger costume or something. I could have said, Why are you wearing that costume? Or, it's faster than walking. No matter how prepared I am, I don't think I will ever be able to give a clever reply. They just fly out of my mind, leaving awkward, wheelchair boy.

Tuesday, August 18, 2009

Smokin' hot ankles, here i come

Apparently my ankles need botox.

I was accused of going Hollywood by a friend at work. But let me assure you that I will remain the same bitter person as always. I'll just have smokin' hot ankles.

I was at the orthotics place again -- I am getting a little depressed by my braces. At the beginning, the guy there was like, We'll make them so they help. They'll be good.

Today he said, There is only so much we can do with the braces. It is not the braces that are the problem. It is your feet.

The problem is apparently that my foot tries to touch the floor.

I know it is a little more than that but my foot is rarely at a 90 degree angle. Even at rest it sits at 30 or 40 degrees. This causes a problem in my chair because my feet slide off the foot plate. The braces fix that. They force my foot into a 90 degree angle. If all I had to do was sit, it would be awesome. I like how they feel when I am sitting. It feels right.

When I stand, either to transfer or at the toilet or wherever, the front of my foot tries to touch the ground. But I am in the braces so I start popping out of the braces, which leads to horrible rubbing pain that has caused me to sit on an open toilet when I was using it.

Today the orthotics guy again said I need to break down the tone in my ankle so it rests at 90 degrees. Unlike past times, though, he said I need medical help to break the tone, or loosen the muscles. Hence the botox.

There are also booties for when I sleep, which sound fantastic in August in a house without air conditioning.

He also said the best might be a physical therapist coming by a few times a week to help me relax the muscles. That guffawing you here is the sound of my insurer.

The doctor who recommended the braces has retired, so I don't know what will happen.

Monday, August 17, 2009


My nephew says "WHAT THE ..." frequently.

Now one could assume that he is just showing good sense and proper breeding by not adding heck, hell or the f-noise. My family in general and my nephew's mom specifically do not go for this, unfortunately, because he is just 4 and doesn't know the words that end the phrase.

Instead, they blame me, alleging that he is just copying a favorite phrase of his 38-year-old uncle.

I am so cool with that. I almost die laughing when I hear "WHAT THE" from this cherubic face. Part of it is also that he doesn't really make is a question. It is just a loud exclamation. It kills me.

It's not like I even think I use it that much around him. I use it mostly when talking to my computer, but I don't get to use my computer around him much. If I am on a computer when he comes over, he's all "Let's go to" That, I regret teaching him.

Sunday, August 16, 2009

Michael Phelps, you're no Matt Trott

I bet Michael Phelps doesn't have to deal with the stuff I do. And I don't mean the crippling disability crap.

First, Claren has learned that when I put on my swimming suit that I am leaving her. It is for about two hours and in that time she gets dinner and Dad keeps an eye on her.

No matter, you'd think she had a vision and I was on my way to certain death. She leans against me. She follows me. Dad has to hold her collar to keep her from trotting out with me like she normally does.

This is not, let me be clear, a problem. It breaks my heart every Sunday. I wish I could bring her into the pool with me. My friend swims with her dogs, but she lives on a lake. Most pools frown on dogs joining their partners.

I bet, though, Michael Phelps is famous enough that if he has a dog he could take it to the local pool. In fact, he probably has his own pool so the dog could swim there.

In a similar vein, he probably doesn't get to the pool only to find it closed for an hour because some kid did something in the water.

But going to the pool wasn't a total waste of time. It gave people opportunity to rope me into staffing a table for a disability group my brother works for. I still think I should have been let off the hook because my brother does so much.

No such luck. It'll be fun; I am teamed with the woman who runs the swimming class so it'll be cool. At least I can bring Claren.

Saturday, August 15, 2009

Claren can get it

Google or the Washington Post is letting me down, but Mom confirms this article did appear a while back, before I got Claren. It told about a gal and her service dog.

As I recall it started off in a local Starbucks where the dog was getting the woman's money to pay for her coffee. There was a line, and what shocked me as I read it was that no one helped her as the dog dropped the change or whatever. Just from a selfish standpoint of moving things along.

This week at work they locked down the building. We have to use our passed to open the doors 24/7 instead of just during off hours. The company has been quite cool about it. It brought in someone to adjust the one door that has a pass reader on one side of the frame and the door opener on the other side. Now it stays open long enough for me to touch the pass reader, let go of Claren, encourage to hit the door button, go through and call her through.

Anyway, I was thinking about how no one seemed to help that gal with the dog in the Starbucks because I dropped my pass in front of a door I had just opened. Claren was well on her way to grabbing it but was a little spooked by the closing door. After she saw it was not going to smack her in the butt, she started to pick up my pass.

But then this gal came over from where she was having lunch and, ignoring my "she'll get it," picked up my pass.

I would have rather Claren got it -- makes her feel useful and it is pretty fun to see. But what more can I say? I guess I could say: "Please, don't get it; she needs practice." I met the gal from the Starbucks once I got Claren and suspect she did say this. Or something about Independence. That's fine if you want to go that way, but it is too much of a mouthful for me, and I don't really want to turn down help.

When you think about it is pretty amazing that someone would bother to get up and walk 10 feet to help someone who already has some help, albeit not the fastest.

Lest Claren get the idea that cute gals will always come to our aid, I threw my pass down when we were inside and alone. She got it.

Monday, August 10, 2009

FA can top a bloody nose

Earlier this year, my oldest nephew was smooching (chastely, no doubt) a girl when he got a nose bleed. The blood got on both of them obviously, and while she was a good sport about it and even called him later, my nephew told my little sister that it was like his body said: What's the most embarrassing thing we can do to him?

I, of course, can think of some worse things. For instance, you could be taking off your shirt but when you get it over your face you lose your balance and flip over the arm of your chair and wind up squished between your bed and your chair with a shirt over your eyes. Hopefully, if this happens, you will have a strong nephew handy to help you back up.

I did. My oldest sister and some of her family visited last week, so he was able to help me and he finally told me the bloody nose story. My little sister had told me when it happened and I wanted to write this then but she was like, No, that makes me a bad aunt for telling you. Whatever but I didn't write it then, but better late than never.

To my nephew's credit, he has used his embarrassment to remain friends with the gal. He said he texted her recently "Got a bloody nose, thinking of you." He is so much cooler than I, and I am so glad he can't think of a more embarrassing bodily mishap. I hope he never can.

His mom once wrote a piece for the newspaper she was working for about having two brothers with Friedreich's ataxia. She had something in there about watching her kids for ant possible signs that might indicate FA. Her kids and all but two of my nieces and nephews were born before there was a blood test for FA.

She watches her kids. I watch everyone from that generation in my family for a trip or some loss of balance.

I would feel so guilty if someone else in my family got FA, not that I have anything to do with it.

One of my nephews told me on vacation one year that he would probably have FA, or at least end up in a chair like me. This was cool with him because we would live together and wheel around egging people and fleeing in our chairs. He was pretty young at the time, but this nephew is still kind of odd. He'd probably enjoy the egging.

Mom loved hearing this. She said I had done such a great thing by removing any fear of wheelchairs from my nephew. I was chilled, and not because I was egged as a little kid and it was so awful.

I don't want my little people (and even though they are taller than me they are still my little people) to even contemplate living with FA. I live with it. I know I can. I don't think I am particularly strong or special, but it is so hard. Every day is a struggle. Every damn day.

I don't want that for them. Plus, it doesn't look like I'll have kids so I'll need someone to take care of me when I am older.

Sunday, August 9, 2009

Laughing to death

I can see the beginning of my front-page obituary now:

Well-known man about town Matt Trott, beloved by millions, died yesterday in the loving arms of his beautiful wife Natalie Portman. Cause of death: laughter.

It would go to mention my multiple Pulitzer and Nobel prizes as well as my many lesser awards. My life is going to pick up one of these days.

But the specter of laughter will stalk me throughout my kick-ass life, as it did today at swimming class.

I was trying to float and swim on my own and I did a little. But twice I just started laughing, which killed my balance and would have sent me to Davy Jones' locker (the chlorinated version) if not for the stabilizing hand of the volunteer with me.

Once, I laughed as the teacher bellowed "Tummy up!" to me. She must have been yelling really loud because I heard her fine and my ears were underwater.

The other time I had just finished a length of the pool mostly floating and swimming on my own. The volunteer was trying to show me how little he was doing and he lifted one hand out of the water.

I saw it and cracked up. Part of it was that he looked like Doug Henning or something: "Look, I am not holding him up."

Mostly, though, it was just so freaking cool. I know I am not ever going to challenge Michael Phelps, but I was floating, me the sinker, the dude with no hips and no fat (these were from today). How far I have come in a month. Now if i can just control my laughing.

Thursday, August 6, 2009

This disability card doesn't work right

It's rare that I use my disability to try to get something extra.

Sure, I use handicapped parking spots and for Bruce Springsteen concerts I buy accessible seating, which are usually easier to get than other seats. But the handicapped spots are for me and I need accessible seating.

It's not like I ask to skip to the front of the line waiting for a cab on a snowy night at the airport. I do jump to the front when asked, like the cab manager did at Dulles that night years ago, but I don't ask.

Yesterday was vendor day at work so as I walked out with Claren at lunch, I passed lots of tables with pens, key chains and other tchotchkes. But Volkswagen had T-shirts.

Granted, I just got three kick-ass T-shirts, but I decided I wanted one. I figured they were for people who signed up for a test drive or something, but I would say, "Trust me, you don't want me driving your cars." Then we'd all laugh and I'd get the shirt.

Not quite.

I asked "So what do you have to do for a shirt?" The guy said just fill out some stuff. I said "I couldn't really write so ...," thinking he'd just give me a shirt.

No, nothing.

I can't even play the disability card right.

Tuesday, August 4, 2009

I hate elevators

When I run the world or at least a company, the elevators in my building will operate with motion detectors so they do not close on people just before they get there.

I mean really. With all the other crap going on in my life, the only way for me to get between floors also requires speed and dexterity? Sometimes I have to push the call button like three times to reach an elevator car on the end of the row at work.

When I see a certain elevator car light up, I usually just give up, wait till it closes, then push the direction I don't want to go and finally the direction I do want. This means the speedy elevator opens for the other direction and I can get the next one. Hopefully.

Closing elevators also tempt people to stick their hands in to keep the doors open. Of course, there is no guarantee the elevator will open once your hand is in there.

When I first got Claren, she was not a big fan of elevators. I remember getting in an elevator car at work, she shied back, when the door closed on my hand, which still had Claren's leash on it.

Fortunately, the car did not start to move. It did not open, though, either. I was worried I would go down in memory as the boy who lost his arm and his dog in the elevator.

I had to wait till a co-worker came upon what must have been a hilarious, or disturbing, sight: a hand sticking out of the closed doors of an elevator and holding a leash to a service dog.

She had the grace not to laugh, she just pushed the elevator call button, and the elevator opened.

Sunday, August 2, 2009

I am a sinker

At least that is what my teacher tells me.

She said she had thought about how to get me swimming on my own because I told her that was my goal, so we worked on floating. Which is when I learned I am a sinker, no body fat.

I did manage to mostly stay afloat with a little help from the volunteer who held my head above water. I'm thinking that if I get real rich I an hire someone to do that whenever I want to swim. In the meantime, though, I need to float and survive going under water.

To that end, I again worked on going under water, four times, and it worked mostly. I am so self-conscious about it. Three people were just sitting there watching me.

Michael Phelps and Kelly can probably rest easy.

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