Sunday, January 31, 2010

Matt the newspaperman (newswebsite man does not sound as cool)

A friend posted to Facebook an e-mail she got that was a copy of a letter to the editor in the Star-Tribune of Minnesota in which Satan takes Pat Robertson to task for blaming the earthquakes on a pact with the devil. Satan points out that is not how he works.; "I'm no welcher," he says. Satan is also obviously no fan of dictionaries, where he would have learned the preferred spelling is "welsher."

Satan also suggests that Pat and he have a deal, telling Pat to watch out or "we may need to renegotiate your own contract."

Now I knew this letter wasn't really from Satan -- no way he goes through a Minnesota newspaper. But I doubted it was actually from the paper. Sure it is funny and all, but the Star-Tribune is a good paper. It wouldn't print a joke letter that even says Robertson has a deal with the devil. It wouldn't stoop that low, right? Please, my journalistic ethics have taken enough blows lately.

If the Star-Tribune wanted to get involved in this fight, which I have no problem with -- newspapers should not let vicious lies be told -- it could have printed a point by point rebuttal of Robertson.

Instead, it stooped.

And it is working. The page with the letter is one of the most popular on the Star-Tribune's website. I am going to propose a U.S. version of Page 3 Girls for the money section of our website.

On another note, I wondered what Kevin Roose would say about the letter. Roose wrote The Unlikely Disciple: A Sinner's Semester at America's Holiest University. He was a student at Brown who decided to take his semester overseas at Liberty University in Virginia on the theory that Jerry Falwell's evangelical school would be as foreign as any college across an ocean.

I really wanted to use the words "snot-nosed punk kid" to describe Roose. I mean he has a published book before he finished college, but he made me laugh. I read the book because Roose worked for A.J. Jacobs as a slave, or unpaid intern.

But I read it quickly because it was fun and interesting.

After his semester he is changed. He did not become an evangelical. But he did
become sympathetic, or compassionate, to people who hold beliefs he doesn't. He even winds up defending Falwell once or twice.

I don't know where he would fall on Robertson. I hope, though, he would come down against a newspaper printing a joke.

Friday, January 29, 2010

No more catheters!

The good news is that I do not have to have the test where my bladder is filled via catheter and the bladder is watched for developments.

The bad news is that we didn't make this decision until after I had fainted because of the catheter that drained my bladder.

More bad news is that we can't be certain this medicine I got prescribed will help or that my bladder truly is fine. It was decidedly unfine Thursday after I got home from the urologist, which is why this did not get written yesterday. I'd write a sentence,have to pee, get up, really have to pee, pee, change clothes after not getting there in time, repeat. After the third time, I just went to bed.

But, and I am not sure I can stress this enough: No more catheters.

I say that now, but Thursday night as I was lying in bed listening to the clock chime, all I could think of was: What if they broke me?

Truth be told, I didn't quite faint. I was in the middle of stage one: the bladder emptying, and I just felt really clammy. I told the doctor who lowered the head of the bed and started bathing my neck and cheek with a cold cloth.

What I told her was: "It's probably par for the course but I am pretty clammy."

Afterward she found this cute that I was so calm and polite. She also treats my brother, and after grabbing Dad from the waiting room to tell him I fainted, she said: Your boys are so sweet.

Maybe she wouldn't think that if I said what I was really thinking: GIVEN THAT YOU ARE RAMMING A GODDAMNED HOUSE UP MY PENIS, I FEEL A LITTLE CRAPPY!

What I dislike about feeling faint is that the doctors want you to talk. Now, I am not loquacious. After a spell, I just like to recover quietly. But, no, it was like after I dunk my head under water at swimming. MATT, ARE YOU ALL RIGHT? TALK TO ME! It's always like, do I have to?

But I survived. I worked from home today to make sure I was OK and I was. So now I can rejoice: No more catheters!

Monday, January 25, 2010

I could be Twilight sexy

I am so bummed out.

Last night I was googling to find the best video game system for those of us with Friedreich's ataxia. Since we'll have a Wii hooked up to the huge TV in the house, I was considering options for the slightly less huge TV in my room. It occurs to me I miss the good old Atari joystick, not these controllers with 37 buttons and keypads. Not of course, because I am old, but because I have FA.

In my googling, I came upon an MTV article that mentioned this movie coming out in March starring Kristen Stewart of Twilight fame that is about Friedreich's ataxia.

Before I get to the meat of what the article says about the movie The Cake Eaters, I can't continue without slamming MTV for using the word "affliction" to describe FA. Ugh. That it is a yucky word. I would not want to get close to people with afflictions even if they are Kristen Stewart. It's just a disease, not even contagious.

Anyway, It calls her performance of someone with the "affliction" as wonderful and even "sexy."

My ears perked up at sexy. I could be sexy. I pictured myself engulfed by Twilight fans who find me disarmingly sexy. Plus, I'm all about that whole sexy celibacy vampires got going on. And I am not even a threat to bite or kill.

But then I saw the date on the MTV article: March 2009. The Cake Eaters came out last year! I did not get engulfed by Twilight fans. No one found me disarmingly sexy. Damn.

Saturday, January 23, 2010

Why buy the cow ...

Other than my self-esteem, Marcus was the first real victim of my Friedreich's ataxia.

I didn't kill him, but as it got harder and harder to carry liquids, I stopped bringing him fresh water.

Marcus was my first parakeet, a lovely blue and white bird that my sister and I bought when I was in like sixth grade. In retrospect, it seems silly for two people to buy a bird because the ones I have known generally bond with one person.

Marcus chose me, maybe because I let him do unmentionable things to my thumb. (I can't believe I wrote that. It is one of my deepest, darkest secrets. Perhaps having that as my worst secret proves that I am really a milquetoast. Either that or that I should have been born a female parakeet. Do they get FA, I wonder.) Having written all this, I have a tremendous urge to go wash my hands like Lady MacBeth.

Actually, he chose me, I am sure, because I was around a lot and took time to play with him, or at least let him sit on my shoulder while I played computer games.

In hopes of keeping my thumb attractive for marriage, I bought first Layla, who was quite tame from the start. Anne and Nancy, aka Lily and Roxanne, came later. Someone gave them to the pet store I worked at, and I brought them home. I was never real sure of their names. I liked Anne and Nancy after the Wilson sisters of Heart. My brother suggested Lily and Roxanne. They were never tame, Nancy, or Roxanne, wasn't afraid of me. She would sit on my finger if there were a reason to, like food.

I was a good owner for many years, changing the paper towels on the bottom of the cage, bringing new food and water. I even counted the number of droppings on those paper towels to make sure there were no dramatic intestinal changes.

Then I stopped. If you had asked me then, I would have said it took too much time to clean the bird cages and feed and water them. But I remember just being pissed off that I would leave the bathroom with a full water dish, and 15 feet later I would get to the cage and there'd be as much on the floor as in the dish. Eventually, I changed the water as little I could.

All my birds died when I was away at school, so I have airtight alibis.

What really pisses me off looking back is that we weren't concerned by this lack of balance. I know that I did not advertise my incoordination and I had other issues to deal with in high school, so I guess I am not that surprised. It is not like it would have changed anything even if we did know.

Well, no difference as to the disease. But maybe I'd be better adjusted now and would not admit in a blog that my male parakeet used to take advantage of me.

Thursday, January 21, 2010

When you just can't reach

When I was little, I remember a PSA that ran on TV. My brother will probably remember exactly what it was for, but a I remember is the tag line: "When you just can't reach."

As I recall, it showed a little girl reaching for something on top of a pillar that was just a little too high. Then these tall H.R. Pufnstuf-like guys came out, reached what she needed and gave it to her.

I suppose it is all about how people sometimes need help and I totally would like to credit this PSA for teaching me that lesson, even while my brother, Robert and I mocked it mercilessly.

I was thinking of this ad when I got to work today and needed tea bags and sugar. I managed to snag a few packets of sugar. But the tea was just out of reach, no matter how hard I stretched. It's not that they were high up; it was just that my chair couldn't get close enough.

I was able to get some in the second break room I went to, but come one. Give me a freaking break. No one should have to hunt caffeine early in the morning.

Wednesday, January 20, 2010

In at 8, out at 4

A friend has been giving me grief lately because I leave work when my shift is over.

She doesn't know that one of the things that makes me a little insecure and vastly unhappy about my job is my inability to easily work after my shift ends.

Now, I know my unionized sister just snapped her pencil in two when she read that, but it's true: I'd like to work more than I am paid for.

Why not, really? I like what I do, especially things that I'd stay late to work on. It's computer work, which is how I spent a good part of my free time. Plus, everyone else does, at least in dotcom. It's almost like a badge of honor, one I will never get.

My friend apologized for mocking me but said she couldn't help it, it was like a bedtime. She didn't know how right she was.

I get home about 4:40, play with Claren for half an hour, then go in and take a nap that allows me to survive the rest of the night until about 10. Then I go to bed and do it all over again.

Sunday, January 17, 2010

Take me to the pool, drop me in the water

I made my triumphant return to the pool today, complete with optical googles so I could ditch my glasses and still sort of see.

They worked well, but I kept forgetting I was wearing them so when I ducked my head under the water I closed my eyes. Then I was like: Oh yeah. IO opened my eyes and I saw people's feet. the bottom of the pool is not that interesting.

I also need to work on blowing bubbles. One of my helpers didn't like that I was just holding my breath when I went under, not blowing bubbles. I told her I'd try, but I knew what would happen: When I blow bubbles, I always breathe in through my nose. It's silly, I know. But sure enough it happened.

I did eight lengths with my fat suit on so the helpers weren't holding me much, then I walked two lengths.

I had forgotten how much fun it is.

This is more like it

There are times, like going to the party last weekend, when doing something out of the ordinary works.

Then there are the other 99% of the times, like last night when I decided to soak my foot because it has a little infection.

I think that standing and transferring the way I do -- which often puts a lot of pressure on the front part of my foot by pushing it into say, a wall -- lead to my toes getting squished. Usually, they are good sports about this. But sometimes they rebel and my big toes develop ingrown toenails. The little toes are OK, although one of my pinkie toes has a nail that turned black.

I was sitting and soaking my foot Friday when I realized -- ZAM BANG BOOM -- I had to use the gentleman's room. Of course, I couldn't get there with my foot in water. Dad helped me get my foot out, but then I had to make a mad dash for the bathroom and well, I did not quite win the race, so to speak.

Thursday, January 14, 2010

Toasty tootsies

I just got a surprise package from LL Bean with socks and toe warmers, these little heat packets you put in your shoes. Someone else had mentioned them, but one of my sisters actually ordered them for me.

And they worked!

I am not sure if they are the longed-for solution because they are not real easy to use. Mom had to help me get them and my shoes on. They also leave my feet feeling a little squished.

But warm feet. All Day. It is hard to emphasize how great that was.

Wednesday, January 13, 2010


Last night I was getting up off the floor -- I didn't fall. I was brushing and acting as a pillow for Claren. As I was getting up, my feet were sliding and I was using my arms and breathing heavily. And it occurred to me that I cannot even contemplate how my nephew or niece or sister or anyone can get off the floor so easily. How can that be easy for anyone?

Tuesday, January 12, 2010

Falling down stairs

Some newspaper editors who think they are wise argue against stories when stock indexes like the Dow Jones industrial average hit a big, round number. Dow 10,000 is just a number, they argue, "nothing significant."

I disagree. They are ignoring the optimism much of the public feels when stocks are rising. People might be willing to spend more if they think their retirement funds are in good shape. That boosts company profits and leads to jobs.

The house my sister and her family and I are building had one of these insignificant milestones today: They finally put the stairs in.

My nephew and niece got to see the outlines of their bedrooms and even what the playroom in the attic will look like.

I haven't been in the house yet -- the ramp hasn't been built. And I do not want to be carried around to see inside. I want to walk into the house and up the stairs.

You know what really sucks: How am I going to get into the playroom?

Sunday, January 10, 2010

Sweet mystery of life at last I've found you

After seeing the Musical Young Frankenstein today at the Kennedy Center, I have two thoughts.

First, I have to add women who dance to my list of crushes, which includes every woman in any Joss Whedon show, all female superheroes and Natalie Portman.

Second, the fat guy who sat near Dad at Redskins games was right: "Everybody sits, everybody sees."

As far as my new crushes: Dancing just looks so joyous, and I would like to be part of it. It may also stem from my experience at Joseph and the Amazing Technciolor Dreamcoat (my favorite musical, too, Julie Jacobs!).

When I was about 9, a bunch of my family went to see the show. At the end, one of Pharoah's women dancers came up to me, chucked me under the chin and said something like: " Ohh, Kingy-wingy."

And dancers are just beautiful. They have, in the words of Lenny Leonard, "legs from here to ya-ya."

At the end of the show, we clapped for everyone, then the actor who played Dr. Frankenstein took his bows. First, this woman in the row ahead of us stood up and I thought, "Don't give him a standing ovation." But then more and more people stood up.

I suppose it is great for a performer. It is not so great for me or my brother or my sister-in-law who all use wheelchairs and got to stare at people's backs.

Despite that it was great fun.

Saturday, January 9, 2010

Party? Hardly

I talk a better game online. In e-mails, Facebook or blogs, I am witty and cool (I hope). In the real world, not so much. There's the wheelchair, the poor hearing, my shyness and my myriad other issues.

I got invited to a friend's holiday party, and I didn't really think of going because she lives 20-30 minutes away. But then I saw that the party was at the co-host's house (they apparently switch annually), and the co-host lives about five minutes away.

Feeling bold, I e-mailed my friend to tell her and she got so excited I might come. I was stuck.

I was OK with going when the party was in the future and even thought I might take a cab.

Then today came.

I was all worry. I napped most of the afternoon to avoid thinking about how the only person I'd know was my friend, a host; about how it wasn't really accessible, people would be lifting my chair; about potential cab issues; about how big this party was judging from its evite RSVP; about how I'd never hear anything.

I gave in a little and asked Dad to drive me. He had already offered so I decided it wasn't that huge a blow to my independence.

And despite all my misgivings, I went.

It would make a better ending if I could say that all my anxieties were totally unfounded. They were and they weren't. The house was pretty inaccessible, but the lifting was easy (for me at least). It was a huge party and I knew no one but my friend, but a couple of people from my friend's office introduced themselves to me. I couldn't hear a lot, but the NFL playoffs were on, the food was good and Claren was there.

And most important, i survived and I made my friend happy.

Finally, lest I sound too selfless, it was awesome to see Laura.

Friday, January 8, 2010

Wheelchair striptease

I broke my wheelchair just now. I giggled, but it's not funny, not funny at all, really.

It wasn't a bad break, there was no danger involved. A part that is held on by a pin just came loose and fell off.

It is back now. I knew it would go back easy enough. I remember watching the wheelchair tech pop it off.

It is, I reckon, another reason not to play with Claren in the snow. The pin must have jiggled loose outside and just fallen off now.

I say another reason because Claren was well on her way to stripping me today when we were playing. Something about the snow gets to her and she is just as wild and crazy as a puppy.

She jumped into my lap, grabbed the ball and the blanket I keep over my legs and ran off with both, dropping the blanket in the middle of my sister's back yard, or as I call it: the pooping fields. She has an old dog who is free with his bowels. Later, I got the ball again and Claren leaped into my lap, grabbed the ball and a glove and pranced off with them.

I may have been taunting her with the ball.

I guess I should be glad at how many layers of clothes I have to wear in winter. In summer, two articles of clothing gone, I might be halfway nekkid, which would actually be funny for everyone.

Wednesday, January 6, 2010

Damn cold

A friend of mine and I were IM'ing today and she asked "how are you?" I told her that "when your eyes well up when someone asks, it is probably a sign you are not OK."

I honestly don't even know why.

The cold is my first suspect. It is so chilling. I can't even take Claren out at night. My feet are like popsicles, and when I try to warm them up I burn myself. At least, that is what happened a few days ago. I put heating pad on my feet and turned it on high. When I got up a while later, my feet were just starting to get warm. My right ankle had a nice little burn on it.

Sunday, January 3, 2010

Too sad

When I was a child, I went to a fair number of funerals: three grandparents, other relatives, a family friend or two. I don't remember being upset by any of them, although after a funeral for a parish priest, I dreamed that I was in a coffin. I did not look dead necessarily, just asleep. I was even curled up under the blue afghan Gram made me, which is still my bup of choice. Is that creepy?

I went to a funeral here and there in the years since, but they didn't bug me much.

In the past few years I have been to three and they have all wrecked me. Gram, a co-worker's daughter and tonight a service for my sister-in-law's mom. It was all I could do tonight to bite my lips and the inside of my cheeks to keep my sobs inside. And I didn't even know her that well.

This makes it impossible to pick up women at funerals, a la Will Ferrell's Chaz in Wedding Crashers. If someone had touched me, even like putting a hand on my shoulder, I totally would have been unable to keep my sobs inside and would have had to leave. Although, maybe then the cuties have to go comfort me ...

Friday, January 1, 2010

A divine comedy

One of the last comments suggested that it is hard to think about me without thinking about God. I am not sure about anyone else, but I am thinking SITCOM!

We would be like the odd couple, with a touch of the divine. And God would add something, too. HEE.

For purposes of the show, God would be male, so I don't have to convince some Mr. Furley-type I am gay. Now that I think about it, though, that would be way too easy, given that I have never had a girlfriend. I'd just have to ditch the Natalie Portman screen saver.

It would be similar to any classic roommate comedy. God obviously would be Mr. Perfect. I would be me, the one with plenty of imperfections, both physical and spiritual. Here is a potential scene:

God: Hey [lightning crackles] Who spilled tea on my new Persian rug?
Matt: I did. Remember how you made me?
God: My son! When are you going to get over that? I told you I am not involved in the making anymore. I'm not a micromanager.
Matt: Yeah, whatever.
God: Just wipe up the tea.
Matt: I can't, because you insist on storing all the cleaning stuff on high shelves.
God: Well, duh! If they were in low cabinets, they would be a hazard when Frieda brought her babies over. They're crawling now, you know?
Matt: Ugh, god!
God; What?
Matt: What? What?
God: You called me.
Matt: Ugh. No, I was taking your name in vain.
God: Yeah, you should not do that.

We would, of course, discuss theological issues, but there would also be light-hearted episodes. God would have no money to pay for the Chinese food, so he'd agree to be my servant, with hilarious and nearly apocalyptic consequences.

Or one night, God and I could be watching some silly romantic comedy, and he'd start saying the male protagonist was doing it all wrong and he'd start bragging about how he knew everything about finding the perfect woman. God agrees to set me up and be my Cyrano, again with hilarious and nearly apocalyptic consequences.

You get the idea. It'll be great.

I need a title for my sitcom. Here are a few options. I am just worried that mention of God in the title will turn off the secular crowd.

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