Sunday, June 28, 2009

Michael Phelps, you are now on notice

I had my first swimming lesson in close to 30 years today. I think I'd still drown if tossed into a river, but it was a blast.

It was good exercise, and I am ready for another lesson. Every Sunday for eight weeks, then we'll see.

It was a group lesson for disabled folks, so there was one teacher, close to 10 students and about 15 volunteers.

Two guys helped me, one at my head and one at my feet. I say guys but one was about 14 and one 18. They were great, though, and the teacher knows my brother and his wife.

The pool had a ramp so I got in one of the pool's water chairs and they backed me down the ramp. When the water was about chest-high for me sitting, the guy grabbed me under the arms and the other tilted the chair back and away we went.

First, the one guy supported my shoulders and had me kick down a length of a pool. Then we did the same thing back and forth again.

It was harder than expected to do almost kicking, but when they had me start paddling by putting my arms against my sides, raising them up to my arm pits, extending them out and then pushing down, I actually could feel myself moving.

At that point the guy was mainly just holding my head to keep it out of the water because at the end of one of the laps, we met the teacher who asked if I could put my face in the water. I did, no problem, but when I tried the second and third time i was so self-conscious and water went up my nose. We'll be working on that.

We also did some leg exercises and arm ones, which were good for me, but not as fun as swimming.

Too tired to file for disability

Soon after I moved back to Northern Virginia 10 years ago, I began to see a counselor. I was unhappy.

I suspect the real reason is that moving back did not solve all of my problems. I had also begun to use a chair full time, which may have had something to do with it.

Among her suggestions to improve my mood was to declare full-time disability (She unfortunately did not offer to procure me a woman.)

She said she thought it would be a way for me to do things I was too tired to do: writing, meeting people, etc.

After shuddering at the thought, I told her I couldn't afford to and that I would go crazy if I was home every day.

Both are still true today. Even with Claren, I can't imagine not having a job and interacting with people there. The money situation remains the same, too. I couldn't cut out my comic fix.

Bur every so often, I do think again about getting on disability.

When we were looking into getting a grant for the new house, my sister called some Friedreich's ataxia group. The woman was surprised that my sister had a brother with FA working full time. She also said that would more or less rule us out for grants.

My mom is on a e-mail listserv for parents of FA patients. Few of the parents, it seems, have kids that work.

I could finally catch up on my sleep. I could sit on a couch, a lounge chair, a chaise lounge or something more than I sit in my uncomfortable wheelchair. I could play with Claren as much as she wants (OK, I couldn't do that unless I devoted all waking hours to her, but I could play with her more.) Human interaction is overrated anyway.

But I know that my FA is not real bad on the FA scale of crappy to life-threatening, maybe just a few notches above crappy. And everyone is tired. Plus, if I didn't work, who would I complain to? My family is not sympathetic anymore. And my comics!

Plus, think of all the paperwork I'd have to file.

Wednesday, June 24, 2009

Not as bad off as Charlie

I feel like a fish somedays. Not like a trout or something swimming contentedly in the water. Something flopping unhappily on dry land.

My trunk muscles are poor and for some reason I notice it more in the last few years.

I lean over to grab Claren's leash or something, and I flop all the way on to the arm of my chair. If it weren't for the seat belt, I am sure I would do some damage.

I have sat here on the couch – safe from flopping –for more than an hour trying to come up with some humorous twist to make this sound less sad.

I started writing about poor Charlie the sunfish, who lived under a dock at a vacation house we frequented in New Hampshire. Charlie must have been caught 100 times and released by me, my siblings and cousins.

That did not pan out, not yet anyway, but now that I am thinking about him, you may see more of him here just yet. Even though the last time I saw him, he was flying into a tree from about 50 feet away. Not sure how I compare to that.

Saturday, June 20, 2009

I hate my wheelchair

I got two new wheelchair batteries today, and I learned several important facts: most significantly, that my wheelchair is a piece of crap.

Granted, I knew this already and it seems pretty evident given the repairs I have needed in a little over a year. But it is nice to hear someone else say it.

Also granted: The wheelchair guy did not say the chair was crap.

I told him that the chair tends to go two days with the battery gauge reading 100% and then on the third day it falls -- rapidly. He said the gauge is just a broad estimate, which for me was as good as if he had said it was something he would not give his worst enemy.

Can you imagine automakers selling a car with a gas gauge that is only sort of accurate?


I also learned that this POS chair is run by 22 auto batteries that you can by an any auto store, and you put them in just like a car battery. You do need to unplug the chair from the batteries before you do remove them or else they spark. I saw this first hand.

Now, i am off to bed and will plug in my chair, which the wheelchair guy said to do nightly to prevent any problems. Unless, of course, the batteries mischarge or I go for a long walk.

Thursday, June 18, 2009

Macs and baseball

I haven't been writing much this week because I have been working late and I am tired when I get home and don't feel like sitting at a computer again.

But now I am back on a Mac! How can II not be energized?

I have been thinking recently about my first pro baseball game. Major League, I mean. I did go to an Alexandria Dukes game and see Washington Capital Dennis Maruk.

My uncle took me, a brother, our friend Carlos and I think Carlos' brother Dead Fish (not sure why we called him that) to Memorial Stadium to see the Baltimore Orioles play the Toronto Blue Jays. I was 9.

The Orioles won in the 12th inning on a Doug DeCinces homer. But that is not really too important. What happened in the 7th or 8th inning was one of the highlight of my life.

We were in the eighth row or something so we all brought our gloves, but of course no catchable fouls came our way.

As the game was winding down I made my way down to the ball girl. She was chatting with an older woman, so I just stood there waiting.

"It looks like someone is about to ask you to marry him," said the woman to the ball girl when the woman noticed me. No, but it was almost as important. "Can I have a ball?"

She told me she did not have one but if she got a foul, it was mine.

Sure enough, she got a foul ball and called me down to the fence between the stands and the field. She opened my glove -- my Richie Zisk model -- and pretended to look at it -- "that's a real nice glove," she said -- and she folded the ball in the glove's webbing.

How cool was/is that?

I still have that ball. I got a few autographs that night, and added others here and there. No one famous outside Baltimore, but it doesn't matter. I have a real game baseball.

I hope the ball girl knows how thankful I still am for her kindness.

This is not bitter at all. I must still be delirious from using a Mac again.

Sunday, June 14, 2009

My left foot sucks

In almost every episode of the old Superfriends cartoon, one of the superheroes would be trapped and the villain would be about to triumph. The superhero (usually Superman) would say like "Must … break … free," and through sheer willpower he would escape, beat the enemy and save the Earth.

Superman never met a villain like Friedreich's ataxia.

Yesterday when my brother-in-law was almost killing me, I sprained the big toe on my left foot.

It hurts but not like it is broken, and Mom was able to look at it last night and it did not feel too swollen. I was a little worried that it might swell up overnight and I wouldn't be able to walk, but then I remembered I can't walk anyways. I just took some Advil and went to bed.

And it was fine this morning until I tried to put a little weight on and get in the shower. I wound up on the floor of the shower. Mom, who was right outside, heard the thump and asked if I needed help. I said yes and she got Dad to help me on to the shower chair.

As I was getting out of the shower, I again needed to use my left foot. I told my leg to put the foot on the ground and help me transfer to my wheelchair. I then watched as my leg tried repeatedly to obey my command, but each time my foot touched the ground it jerked up in the air. As I went through this little dance about five times, my right hand was sliding down the grab bar until it pinched my pinkie too badly and I had to let go.

This time I had to call for help, but Dad came and helped me into my chair. I shouldn't say helped; that seems to imply I was getting into the chair and Dad merely assisted. Dad deserves almost all the credit.

My left foot was dancing rather than helping Dad get me into my chair.

Saturday, June 13, 2009

Should have stayed in bed

I was lying in bed this morning thinking how hard every little thing is and how nice it would be to just stay in bed forever. But as I have said before, Claren would not like that. Plus, Mom and Dad would probably give me grief. And it was 11.

So I got up, and then I almost died.

I made it to the family room and was looking out the front window. I wasn't wearing my seat belt because I was on my way to the bathroom. My peripheral vision must not have woken up yet because my brother-in-law walked right past me and I didn't see him. Not that he is ninja-stealthy: He was wearing a red Capitals T-shirt. I totally just didn't see him.

Until he walked past me again on the way out.

I heard him first. "Morning, Matty" or something.

I would like to say I leaped out of my chair to confront the scoundrel who was scaring me. But I don't leap. Not a part of body knows how to leap anymore and if I did somehow manage a leap, you can be sure that my legs could not stick the landing. Not to mention that saying good morning is not really scoundrel-ish.

More like I crumpled out of my chair as the innocent bystander looks on.

In his defense and to the credit of his reflexes, my brother-in-law did almost catch me.

He wants it known that I was laughing before I hit the floor and he is probably right.

I wasn't hurt too bad and I didn't want him to feel guilty for almost killing his brother-in-law.

Thursday, June 11, 2009

Never has fatty mass sounded so good

We finally went to the vet today, and Claren's lump was just a common fatty mass. As long as it does not grow, we can just leave it.

Of course, in her effort to be the diva of service dogs, Claren made her neck get all infected and nasty by scratching. I had asked the vet to check it out because it was red when we bathed her last weekend.

Now the bottom of her neck has been shaved and we have to clean and medicate it twice a day, which means Mom and Dad do. And she can't wear a collar for a while the neck is healing.

Claren acts like it is hell to go to the vet, but they all love her and give her treats. She now does an "up" on the counter, which means she puts her front paws up on it. she is supposed to do this after I give her my credit card, but today she did it early and repeatedly just looking for treats.

From the vet, we went to the Mac repair store. The guy there turned my iBook on and it seemed to work fine. I figured that would not last, and it didn't, but I was able to get most of the info off my hard drive.

I was able to make the data transfer even though my youngest nephew joined the list of nephews and nieces who have scared me almost to death.

My back was to the door and he ran in yelling about something. As I have been many times, I was glad I have a seat belt. Dying at his hands would have been a bad ending to the day.

Wednesday, June 10, 2009

Can't sit forever

My blogging is taking a hit without my laptop. I am taking it to a repair place tomorrow in a last-ditch effort to fix it. If not I will just have to bite the bullet, I guess.

I am also taking Claren to the vet (please be a cyst, please be a cyst).

It is no fun to type my blog while still in my chair, which is what I have to do when using my desktop.

There is also the Civilization 3 factor. It is hard to sit at m desktop without playing a few years and trying to take over the world.

It is calling now.

Saturday, June 6, 2009

Fear and self-loathing in Falls Church

Last night was just a bad night. Mom pointed out a lump under one of Claren's legs. A lump that I immediately assumed was cancer. It was all I could do to not take her to the emergency vet right then. But since a day or two will likely make little difference, I will take her next week to see the regular vet.

I also dropped my laptop. It worked fine for a while after that but now won't come on. I have a backup of all but the last few months so that is OK, but I can't stop being mad.

Everything is so goddamned hard.

My hand was a little damp and the laptop case slipped and fell on the floor. But looking back I would have done the same thing. I can't wait for someone to hand me my laptop every night.

My laptop is in as safe and easy a place to reach as we can make it. But there is always risk and in my case more risk in almost everything.

I took it to the Apple store and the genius said I had likely damaged the hard drive, logic board and display. Repair would cost $750. Of course, I can buy a new one for that price almost. And my vaunted AppleCare warranty doesn't cover self-inflicted damage.

Next week when I am at the vet, I will ask whoever drives me to take my mac to an independent repair shop. Until then, and probably after, I will sit here stewing about the crap I have to deal with.

And if that wasn't enough:

Jerkwad builder drained the basements of the houses he is building on to the land we are supposed to be building on soon even though he was told not to.

Claren sampled the poop sitting in the front yard, which means someone let their dog climb the wall on to Mom and Dad's yard, poop and then decided not to pick it up.

Thursday, June 4, 2009

Cast party

This guy opened a utility knife and dragged it all the way down my left leg today, from just under my knee all the way down to my toes. Then, his hands stained red, he did the same thing to my right leg.

This was not a dream; Mom saw it all.

Let's see ... what did I forget to mention ... I know there was something ...

Oh yeah, I was at Orthotic Solutions getting impressions of my feet made for AFOs.

My rehab doctor (the one who suggested the Hun saddle) thinks I stand a better chance of keeping my feet on my chair if I have ankle braces. She also thinks they would help with transfers and trike riding.

It will be a plastic thing that runs along the bottom of my foot and up the back of my calf so it will keep my feet straight, rather than drooping and rolling as they tend to do now. A hinge in the back will allow me to raise and lower my foot as I normally would although it will limit the lowering.

I hope it is not too bulky or uncomfortable for me. They said the AFOs fit inside your shoes. You just take the insoles out.

After going through everything and deciding to get them, they made the foot molds. First they put a sock on and then they wrapped it with red fiberglass tape that they soaked in water and hardened up. It also ran and stained their hands (well, their gloves) red.

The most ingenious part to me was that they put right on top of the leg what looked like a real old electric plug -- super thick. It was just a cutting board, I guess. That is what they dragged the knife down. Then they cut off the sock, pried off the cast and taped it together.

At the end of the appointment there were two really lifelike red feet sitting on the counter.

Monday, June 1, 2009

Walking away our troubles

I forget sometimes that Claren didn't volunteer for this. She could spend her days chasing bunnies. Instead, she has to deal with a nerd who grieves for someone that never existed.

I get four alumni magazines or newsletters and I flip through them until I get to the life changes notices, which I read religiously. So-and-so has written a book. So-and-so works in the software industry. X and Y got married. Z has three kids.

The job stuff doesn't wow me or make me jealous, even if a woman I knew at my college newspaper won a Pulitzer. I am very good at my job and all the important people know that.

It is the relationship stuff. I feel like I missed something back in college while I was dealing with at least on a subconscious basis what turned out to be Friedreich's ataxia. But the Matt who did not have to deal with the onset of FA does not exist, at least not on this planet. Maybe there is a happily married Matt on Earth 2, but if comic books are any guide, parallel earths are always getting blown up or run by megalomaniac super-villains.

I was reading the notices of my alumni newsletter today, and I started feeling rotten. I figured if I could play with Claren and throw the ball, I might toss away some of my sadness. Claren, of course, just wanted to chew the dang ball.

I got a little frustrated, maybe a lot, and made her come in with me. But she came so willingly and just laid down inside. I felt like a totally jerk. I still wish I could have something good to say in a life notice thingy, not a job thing either, but who cares? I can't take it out on Claren.

We went for a walk.

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