Comfy but trouble

I am back in my new chair these days. I spent the weekend and early part of the week shuffling back and forth between my old power chair and my manual chair after my new chair started not working. It started randomly telling me "ctrl inhibited"and it would stop running.

This first happened just before the Inaugural Parade. (Did I mention I was in the parade? My sister thinks I am getting a big head about it, but I think she is just jealous that strangers aren't coming up to her and saying "Good job!" Work strangers but still ...)

I thought it was just because a pebble got lodged somewhere. We were on gravel and someone just poking around fixed it.

But then it happened again at home. And again. And again.

Wow, it is really no fun to be stuck in a chair that doesn't work.

The wheelchair folks fixed it in a day, but the threat of winter weather kept the chair at the store for  a few extra days. I have to go back to address some other issues.

It is amazing how uncomfortable my old chair now is, and I like my new chair. But wheelchairs in general just suck.

If I should die before I wake, let's make it a big show

When I wrote my obituary back in grad school, I died at an Orioles game with my supermodel wife when I was hit in the head with a line drive.

I'm not sure that'll do it anymore. I need to die in an insanely awesome way.

Perhaps I accidentally cross the power supplies of my computer, my wheelchair and my iPad, getting fried in the process but also inventing teleportation. Maybe the genetic mutation causing my Friedreich's ataxia starts giving me X-Men-esque superpowers but also kills me. Or I could die normally, but Natalie Portman, Sarah Michelle Gellar and hundreds of other starlets flock to my grave,weeping and wailing that they never dated me.

It's not that I am worried about my legacy -- I know I am too cool to be forgotten -- I just want to make sure everyone know I kicked it.

Claren's puppy raiser died unexpectedly in October, and I just found out.

I could have done absolutely nothing. But I feel so bad and so sad.

And I am terrified that could happen to me. I know my family would know -- living with one's sister has its privileges. But what about my friends in Nevada or Texas or California or even closer? I go months with no contact with various friends.

Or maybe I'll never die. That would make news, too.

I must be maturing dammit

Twice lately I have stopped myself from doing questionable things. What is wrong with me?

The sidewalk was dusted in snow yesterday -- no biggie. But I decided not to drive my chair through it on the outside chance I'd get stuck.

Then today in my manual chair I decided not to go down the ramp and try to wheel up it seeing as I was home alone and that seemed foolish.

What is with all this thinking first lunacy?

We interrupt this regularly scheduled programming

I am torn: Do I continue Inauguration extravaganza with my story on the Fish and Wildlife site, which is also on our Intranet and the Department of Interior Intranet? Or do I share my death-defying lunch adventure.

OK, OK. The lunch adventure it is. But first, a bitchin' photo from Monday.

By Kaki Elgin, a graduate's sister.

The sidewalk where I work has cuts in it for little tree areas. I was rolling down the sidewalk at lunch, in the cold, when my right wheel inched into one of the tree areas. I continued on, thinking my wheel would bounce back onto the sidewalk fine. Oops. When it hit the edge, instead of bouncing up, the right side of my chair stopped. The left side kept going. So essentially, I made a 90 degree turn and was headed toward the street.

I managed to take my hand off the joystick pretty fast, but this chair rolls after you stop driving more than I am used to.

Do you know those scenes in  movies where a car is right on the edge of a cliff and one tire falls off, then the other, all in slo-mo? That is what it was like.

I was resting with my front wheels on the road, and the rest on the sidewalk, unsure what to do.

Fortunately, some guy came right up and offered to pull me back up. He wrestled with it a bit but got me back up.

Whew!

Inauguration: Part 1 of many

Yes, I am going to run the inauguration into the ground. I think I deserve to: 57 in the history of the country and I was in one.

I am the wheelchair user on the far left with Claren. The president is on the right. (Thanks, Patrick for the image)

Here is the first thing, my USA TODAY story: First person: Inaugural Parade march with my service dog. A year and a half after leaving USAT, I get my first byline!

And for my bitter friends, some uniquely bitter tidbits:

• For some reason I was listed as a puppy raiser, not a graduate, so the bus I was on did not have a lift. Oops. Fortunately, there was room on a lift bus.
• For a fun challenge, wear snow pants, sweats and boxers, a long coat, a scarf, several ID tags on your neck and more, and then try to use a Port-a-John ... in cold weather. The first time I tried standing but wasn't able to go with all my accoutrements. Second time, I got help getting my coat and stuff off, and sat.
• At the parade staging ground, rows of Port-a-Johns were set up. About 10 were accessible and had signs on them saying "disabled ONLY." As I was getting into one, this military-looking guy waltzing into one. Coming out, I noticed another military guy stroll out of one. I plan to detail my love of the military later, but not those a-holes.

All alone for a few minutes anyway

Five hours into my weekend alone, I'd broken one of the rules.

When we learned that Mom and Dad were going on retreat this weekend, my sister and her family had a hockey tournament in Pennsylvania (go Snow Leopards!), and I was marching in the Inaugural Parade, there were some consternation. Not from me, of course, I am fine being home alone, but others were less sanguine.

But then we learned that Mom and Dad weren't leaving till Saturday morning, my sister's family was returning Sunday morning, so everyone would be home when I went to the parade.

It was about 26 hours, but a friend offered to bring dinner, so it was not even that.

There were still some ground rules: I wasn't going to shower, I kept my seat belt on when shutting the door, I wouldn't laugh without my seat belt and I would not go in the grass in my power chair.

I went out to go for a walk, and as I wrestled with the door, Claren loped about our yard. I called her and said let's go for a walk, and she took off at full speed for Mom and Dad's. So I had to go in the grass.  I didn't get stuck.

I survived. I am awesome.

I'm good, too

I read yesterday that ESPN anchor Stuart Scott had recently announced his cancer had returned. This is sad.

Is it really catty to  start this sentence with the word "But?" Because I have a problem.

He has scads of well-wishers, who applaud his outlook, which is super-applaudable. He says: "You’re going to feel like crap sometimes. But you’re going to feel like that whether you’re lying in bed or going to work or working out, so you might as well go out there and live your life."

My problem is that his applaudable outlook is what I imagine 99% of the disabled working population deals with every damn day.

I rarely feel great, but I work on the theory that I will probably feel better or at least not worse. I have a colleague who uses a wheelchair and has survived for more than a year on basically Ensure and Jell-o because of some stomach issue.  And she rarely calls in "sick."

The article had more than 6,000 comments. Even if half are troll-ish, Stuart has tons of fans. Where are my scads of well-wishers?

Fucking wheelchair

One of my uncle sang a song when we were little. It was called I'm mad or something and featured a verse about taking someone down to the riverside and holding them under the water as the bubbles came up, then the bubbles stopped. (Lest you think my uncle is some crazy soiopath, it is John Lee Hooker's I'm bad like Jesse James.)

I was trying to remember the song this afternoon because I was so damn mad.

I was driving into the van tonight at work and I misjudged the ramp and got stuck half-on, half-off. Mom went to get the guard, but he had to stay at his post. He called for help, but it was close to half-an-hour before someone came. He helped.

First, he helped me out of the chair. Then he pulled it free. He did not make fun of me for my falling-down pants. He helped me back in the chair, waited till I got in the car and wouldn't take any cash for helping. Awesome.


But that was about the only good thing. I was furious that:

• My wheelchair is bigger than my previous one. I would swear the wheelchair guy said the ne chair's footprint was smaller, but it is wider and longer. Nothing to do about it really. It's the reality.
• Even after four months in the chair, I still can't drive it properly. I turn poorly all the time.
• No one in the garage stopped to see if I needed help. Maybe they didn't notice, but it surprised me.
• I was not strong enough to move the chair. Another illusion melts away.

Oh well.

I'm so vain ... and warm

Unlike my older brother with his seersucker suit and drawer full of cufflinks, I will never be mistaken for a clothes horse. Until a few years ago, I wore shirts I bought while in grad school. My favorite outfits are T-shirts and jeans.

So when my little sister suggested I buy a pair of Uggs, I was not inclined to take her seriously.

But she swore they were the warmest shoes she owned. And my feet have been so cold lately. Facebook was almost unanimous in saying I should get them (sorry K). I did, and ...

My feet haven't been this warm since summer! When I went to bed last night, my feet and ankles were actually warm to the touch. Today, I didn't wear socks and I think my feet are sweating.

I figured that if they keep me from buying two boxes of foot warmers a year, they will pay for themselves in a few years.

The warmth is awesome, but not that shocking. Everyone told me they were warm.

What is surprising is how much of a badass I think I look in them. Seriously, I put Tom Brady to shame.

P.S. I have been fighting off a cold this week and I hope that is the reason I have found writing a chore recently.

P.P.S. The Urinator seems to have resolved to clean up his act in 2013. Either that or he no longer works with us. Either way, a clean seat!

Marching

I got an email before Christmas saying Canine Companions for Independence had a spot in the inaugural parade and I could apply for a spot. I thought that would be awesome, but it would likely be cold, a really long day and a longer walk than I wanted to put Claren through. So I let the deadline pass.

Then after New Year's, I got another email, this one from a friend saying there were spots still open and she hoped I would apply. I did, thinking i did not want CCI to look undermanned with just 15 people. Turns out that there are 135. How were they short?

I am still pretty excited, and it'll be good.

It's a wonderful life, Matty-style

Despite the Friedreich's ataxia, despite the wheelchair and the falls, despite the Urinator, my life is sometimes so good that I can hardly believe how lucky I am.

I could easily fill a post about getting stuck in the mud in the yard today, but honestly I am riding a high from the past several days.

On Wednesday, my best friend from college and his family came over for dinner. I hadn't met his 8-year-old and hadn't seen his 10-year-old since his baptism, but his kids were hilarious and great.

His daughter told me all about this circus, complete with different voices depending on what was happening. His son, my godson, joined in to explain things his little sister left out.

My friend's wife seems like she could almost be one of my sisters, she is so awesome. And i can't say enough about my friend. It is remarkable to not see someone in years but to find yourself right back in a comfort zone with them.. And he always sat next to me to talk to me, rowther than making me stare up. Coolness.

The next night I went to a retirement party at USA TODAY, and actually I felt a little guilty because I felt like I upstaged the retiree. Everyone was asking me how I was and telling me they missed me. And most people even said hi to me first before Claren. And I got to see so many good friends I had left.

But that wasn't all.

The MC mentioned how I came back. Then the retiree ended his speech with "to quote Matt Trott: Thank you all from the bottom of my heart." (from my farewell party.) Someone else said mine was the saddest farewell party, which should not make me feel so good but ...

And I didn't need a AS2 to point out my life's wonderfulness.