Sunday, July 31, 2011

You would cry, too, if it happened to you

One of my nieces was telling me how my 6-year-old nephew started sobbing at the end of the movie Beezus and Ramona because he was just so happy. I know how he felt.

Not that I cried at Beezus and Ramona. I haven't seen it.

But last night, after folks had gone home from my party, Mom gave me a little one-arm hug and said, Nice party.

For some reason, I just lost it then. I started crying and it took several deep breaths to keep me from just total breakdown sobbing. Not sure why. Mom just patted my head until I recovered.

I had never had a birthday party with friends. I am sure Robert was at some of my parties growing up, but he was really my brother's friend. I was just their sidekick, a well-loved sidekick, but still.

I knew people liked me and would come, pretty sure anyway. I didn't really think people would say they were coming and then not show up and it would turn into some awful prank like in Carrie. Really. I didn't. At least not from my friends. My little sister and certain in-laws, however ...

It would be more fun if I heard better. I do OK in small conversations. In groups, whether it is friends or family, I often can't make out the words. I hope no one dares to think my silence is because I am unhappy.

I doubt they do because I often laugh. I may not have heard the story just right, but sitting around people who like me gives me more than enough reason.

Friday, July 29, 2011

Stressed and 40

Today I turned 40. A week ago I left a workplace I loved and co-workers who loved me. Tomorrow I have my first birthday party that includes more than relatives. By first I mean first ever, first in 40 years, etc. Monday, I start a new job. On Tuesday, my employer runs out of money to pay bills.

Most of these things are good stress, but my stomach tends not to know the difference.

Monday, July 25, 2011

GQ: Gentlemen's Quarterly or Gawky Quacks*

Years ago while watching an episode of Will & Grace, I was shocked to see the caption read Grace laughs "retardedly." Really? The caption writer is such an idiot that he or she described goofy laughter as "retardedly?"

At least, though, this was just a caption writer, not a journalist at a major magazine. The caption writer probably did not have editors either. Surely they would have seen the adverb as offending and hurtful and changed it. Plus, our society is better at realizing the power of words. That kind of word usage would never happen anymore.


GQ apparently referred to Boston's fashion sense as "Style Down Syndrome." I say apparently because GQ had the good sense to reword it on the Web. But the editors and writers have not apologized that I have seen, or even admitted that was a bad, offensive word choice.

Bad, bad call.

* There are few bad words starting with G or Q.

Friday, July 22, 2011

Thursday, July 21, 2011

Penultimate farewells

Apparently, Michelangelo was on to something. The last supper may have been serious, but the penultimate one? That was "a real mother of a blowout."

At least that was the experience today at my penultimate day at work.

A bunch of friends took me to lunch at an Indian restaurant. It was cool. Butter chicken is really good. The company, of course, was better. We left about 11, and my party at work started at 1.

We got back at like 1:01, and there was already a bunch of folks gathering.

The head of distribution (my work group) kicked things off. He noted that the people at the party came from print and dot-com and how I was one who really helped build the bridge between the two. He ended by saying that he asked my boss what to say. "Just tell him we love him and'll miss him," he said my boss said. So he ended: "Matt, we love you and'll miss you."

Oh gosh. I was ready to lose it there, but there was more.

My boss spoke, saying that he'll miss being able to turn around and ask almost any question and be confident I'd give the right answer. (Side note: I was totally stumped this morning on getting a printout of a full webpage. And it turned out to be a webpage for my party, which I hope to post later.)

He said lots of other stuff that proves he is a great boss and greater friend. I asked him for a copy of his speech because I knew Mom would want to see it. It passed muster with her.

 He also unveiled my presents. One was the webpage, which I have to get a electronic copy of. It is good. They also had one of our artists do this picture and signed it around the edges. My boss is going to bring those by my house after they are framed. They also gave me a single cup tea maker because my boss will no longer be there to get me water for tea every morning. Then I got a mug and stuff.

I know, holy cow, right?

Then I said a few words.

I had thought about what I wanted to say for a while, but didn't write it down. As I told them: Writing it would have made my leaving more real than I wished. But here is the gist of what I said:

Thank you all for letting me be a part of your stories, both those you wrote for the paper and the stories of your lives. When I look back 10 or 15 years, I can see I am a much better person. I give Claren a lot of the credit for that. What credit she doesn't get goes to all of you. You have all made me a better person. Thank you.

I spoke loud. My speech therapist would be proud. I even made eye contact. I got through it then without crying, though I did tear up typing it and telling Mom. During the speech, my emotions seeped out via my legs, which crept higher and higher as I spoke. At the end, my legs were parallel to the ground.

A friend I went to college with added something then. Or she was before I talked, I forget. She reminded me that one of the nicknames I had at the college newspaper was "Pound for pound, the most powerful man at the Cavalier Daily." (Because I weighed so little, and had a fair number of votes in the organization.) She said that was still true, although I do weigh more now.

Then we all toasted me and had sugar-free chocolate cake and lots of people wished me well.

One of my friends was weepy, and she almost made me cry, but then she spilled wine on me so I recovered. A couple others told me they cried, including one who escaped jury duty for a day to make the party.

The Money copy desk stopped by after the party. They come in later and had gotten me a card and some stuff for me and Claren.

I am making the right choice, I know. Lots of people, not just ones I am related to, assure me I will bring out kindness and friendliness in others. But, gosh, I LOVE THE PEOPLE AT USA TODAY.

(I stole these photos from Facebook. Thanks Emily and Sandy.)

Monday, July 18, 2011

Easy is for wimps

If I only did things that were easy, I might never get out of bed.

I certainly would not transfer to a normal toilet to do my business. My manly parts are cheering this news after being squished this morning when I slipped and sat down on the toilet seat in an awkward position.

I would not stand at a toilet either. Here, it is my head that is cheering. I stood up today, had too much speed and bashed my head into the wall.

I would not have taken a new job either. I am pleasantly surprised that I am looking forward to the new job, but it will still be hard.

I might still swim -- backstroke is not that hard -- but I would not put my head underwater and let someone drag me across the pool and back in five-second increments on my stomach. I certainly would not let the dragger decide to start counting only when my legs were at the top of the pool. Surprisingly, this was pretty neat. Exhausting, and I did suck in some water, and the dragger told the teacher I panic and thrash at the start of every five-second drag -- maybe because I can't breathe? -- but it was cool.

I would not have stayed for the potluck after swimming to celebrate its 20-year anniversary. This meant changing at the rec center -- not as nice as home -- and eating something that totally screwed up my digestive system. But I did get to see my indefatigable swimming teacher whip out her blue fiddle and start playing, leading me to wonder if there is anything she doesn't do.

An easy life would be awful boring.

Thursday, July 14, 2011

Slurry with FA on top

A friend of mine warned me that things will be emotional next Friday, my last day at work, and I am already feeling it.

I was heading out and saw another friend who is off next week. We said our goodbyes and shared a hug and that was it. A good thing, too, because I had started to tear up.

Great, I am falling apart in my penultimate week. That's no good (although I did get to think of penultimate, which leads me to Monty Python).

I speak poorly as it is -- very slurry. For the curious it is known as dysarthria, another gift of Friedreich's ataxia. It gets worse when I get emotional. One of the treatment suggestions is to reduce stimuli when communicating. Like that'll happen next week.

My mouth gets dry and my nose clogs up and makes speaking more difficult. I gulp and laugh and talk all at the same time.

I took some speech therapy where I learned to take breaths after every phrase and SPEAK REALLY LOUDLY (for me). I rarely remember to do it. I am sure I won't next week. I wish I were John Cleese.

Tuesday, July 12, 2011

I'm missed

People at work are still learning I am leaving, and I am flabbergasted at the kindness shown me.

I know I am good to have around -- not just because I work hard but because I am nice, funny, smart, whatever. And I knew my good friends would be sad I am leaving.

But I am surprised how many people will miss me, not my work but me.

It's pretty awesome. Makes leaving hard.

Sunday, July 10, 2011

Working the knees

Today was the first swimming class of the session. It wore me out.

I asked the teacher if we could work on my knees especially.

They are locking up on me when I stand, which is fine when I am standing. But they tend to buckle when I need to lower myself from a standing position. I think that is what caused the recent near-death experience.

Now, after the exercises my legs are tired and jumpy, and I think I will take an Advil cocktail go to bed.

Friday, July 8, 2011

Matt takes a new job when Uncle Sam comes calling

When I was a child, I saw a show on TV starring Kurt Russell (always awesome. I mean, have you seen Big Trouble in Little China?). He played this teenage secret agent. He was always pulling out these cool gadgets, and when his friend asked where he got it, he'd say, "My uncle gave it to me." The uncle was Uncle Sam.

Today I resigned after 12 years at USA TODAY. I love working there, but my uncle called and I came running. Granted, I asked the uncle for a job.

Here is a version of the note I sent a handful of friends:
I wanted to tell you in person, but I lack the powers of Jamie Madrox, Multiple Man (semi-obscure comic book reference in farewell note: Check). Plus, if I told you in person I might tear up. This would make Claren sad. In turn I would try to cheer up, but would invariably make awkward sobbing noises. So email is best.
I am taking a job in the communications office of the U.S. Fish and Wildlife Service. My dad and a grandfather were lifelong civil servants and my uncle works with Fish and Wildlife now, so I am excited. I will be mostly working on an internal newsletter, writing speeches and stuff. They are also switching up their CMS so maybe I will stick my nose in there.
When I started here in '99, I quickly thought I might retire here. I enjoyed the job, but more than that the people were more awesome than I could imagine. Both of those things remain true today, but you are the reason I am still  here. And as happy as I am to take this new job, I'd be lying if I didn't say I'm scared, sad to leave and more than a little guilty for abandoning you. 
Short term, I think that's a huge plus for you. I feel so bad for leaving you, I'll do just about anything I am asked.  
Thank you all for making me a better thinker and a better journalist. Mostly, though, thank you for making me a better person.
PS -- And yes Claren is coming with me.
PPS -- my last day will be July 22. 

Making it even harder was that everyone was happy for me, and when I apologized for leaving, told me I have nothing to be sorry for. (Well except for the one friend who said she was mad because she had just finished her eye makeup.)

I am so nervous but excited, too. I know it'll be fun and challenging, and I know I'll be good.

I think of my grandfather's government service a lot. He got a presidential medal from Eisenhower. Dad worked for the Commerce Department his whole life. My real uncle is going to be on a panel with the Interior secretary. If I do half as well as any of them, I will be a success.

Tuesday, July 5, 2011


Being a tough, yet sensitive, guy, much like Robert Parker's Spenser, I didn't really know how to deal with my near death today.

Sure, I joked about it at work, but when I got a chance to think about it, I was like: Holy Shirts and pants, I could have easily snapped my neck. I told Mom the story as we were leaving and she was quite for a while, so I asked if she was all right. Just trying not to throw up, she replied. That's still how I feel.

I went to the bathroom, and I guess my foot slipped a bit. I did not fall, but I headbanged the grab-bar at full speed. I took most of it on my left eyeglass, which snapped right out of the lens, which broke.

That's pretty much it. I am trying not to think about all the what ifs or the little pains or whether my eyesight is failing so I'll spare you.

I tried working without my glasses but I really can't see. After that I put some paper over the left lens so I could use my right eye. My left eye works fine. It was just impossible to use glasses without both lenses.

One of my friends thought I looked stupid so she made me this. You can hardly tell the difference, can you? I like my friends.

Monday, July 4, 2011

Muscular legs here I come

That crazy-ass dream is actually paying dividends.

In it, I used an exercise bike that required me ride shoeless.

Well, I recently bought a motorized leg exerciser. You put your legs in, plug it in and voila.

Only, not so much voila. It kept sliding away, and my feet kept sliding out.

I had the idea of sitting facing the couch so we could block the exerciser from moving. But Mom had the idea of riding shoeless.

Worked great! I realize the exercise is not as good as say swimming but that starts upp again next week.

Sunday, July 3, 2011

Without help but far from helpless

One of the first times I used my wheelchair at work, a friend and I were headed in together. They knee about the chair and my issues so it wasn't at all a surprise. As we were rolling/walking to the door, she finally said: I'm going to push you because it'll be easier to talk.

It was, of course, much easier. I wasn't laboring to push or watching where I was going.

More important it also made sense to me. She didn't think I needed help and she wasn't just being kind. She had a good reason to help me.

I turn down help sometimes, annoying the person offering. They always offer out of kindness, but I turn it down because I read in their offer a sense of pity or a belief that I am helpless. I am not.

Saturday, July 2, 2011

A real leg show

It has taken the better part of 40 years, but I have finally found love. Or at least a part of me has. And who am I to argue if it is a mite incestuous: Beggars can't be choosers. The part is my legs.

I go to bed like I always do, with my legs not touching. But for the past few months, when I wake and it doesn't matter when, my legs are together.

I think the right leg is the pursuer. Usually, it seems to be the one that moves during the night. I often find it crossing my left leg at the ankle or bent at the knee and resting under my left knee.

I am so confused by this behavior. I hardly ever stir at night. Why now? What is going on?

It is also a pain because I can't tell where my feet are. So I feel something on my left side, try to move that leg, but it is in fact the right foot over playing footsie.

Why does love have to be so hard?

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