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 ...

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