Saturday, October 31, 2009

Long-legged, lanky people need not apply

I don't like to sound prejudiced, but I have decided I can't be friends with any tall people.

I was riding the elevator down to lunch with a co-worker who could, I think, step in for Jim from The Office and no one would notice. He not only looks like him but also has Jim's height.

On the elevator, I was able to pick up some of the conversation because it was just the two of us in a small elevator, but he kept talking on the way to the cafeteria. I just kept grunting in acknowledgement, hoping I wasn't agreeing to wear a puffy shirt or something.

I guess to be fair and logical, I need to come up with a cut-off height. Then I get a cardboard cutout of the Atom holding a ruler and saying: "You must be this short to be Matt's friend ... or you can duck when talking to him."

Thursday, October 29, 2009

Wheelchair pinball

I was riding down the elevator staring at the elevator glass, wondering how in the hell I broke the glass in the elevator last year.

What on earth could have possessed me to head into an elevator so fast?

Then I remembered the other day when I was trying to get an elevator to the garage.

Let me set the scene: Three elevators. I press the button at the center car. The one on the right opens. I get over there just in time for it to shut on my face. I press the button at the right car; the center one opens and I get there just as it closes. I press the center button again and the right one opens. This time I made it in, but I felt like a pinball.

Tuesday, October 27, 2009

Hurry up and get well

Mom said her current hospitalization was not to be fodder for good bitter. If she meant that, she ought not to have stayed at the hospital an extra day, which may have provided her with a good, needed rest, but more importantly it has boosted my worrying about her.

I mean, first she tells me it is a minor thing in an area boys and their mothers do not discuss. Then I learn that it is 3.5-hour thing, minor or not. Not she is still in the hospital, going on two whole days. I swear. Moms are trouble.

Sunday, October 25, 2009

Quarter-miler feels old

This is the first night in three that I have not gotten down on the floor and done a few exercises. I m trying to do little exercises each day, but tonight I am taking a break after swimming a quarter-mile! Actually, a little more.

I feel old, though, because I was several years older than both of my helpers put together.

My teacher did make fun of me when she met Dad, calling him "the infamous driver, I mean father."

Saturday, October 24, 2009

This is not dedicated to A.J. Jacobs' wife

In The Know-It-All: One Man's Humble Quest to Become the Smartest Person in the World, my new favorite author A.J. Jacobs fumes about Dante and Petrarch dedicating their works of art to married women they had loved from afar for years. "Stalkers," is the word A.J. uses.

I agree with him, although I am not sure The Inferno is really a love poem. I know nothing about romance, action or getting some, but if I were wooing a woman I would not say: "Hey, I just wrote a long poem about hell and its inhabitants and I dedicated it to you." I mean maybe that is the way to a Goth girl's heart, but how many many Goth girls am I likely to woo?

The bigger problem: I think I am in love with A.J.'s wife, Julie.

He makes her sound perfect for introverted, weird writers. She does stuff and brings him along, getting him out of the house, or at least tries.

What won me over to her completely is his story on page 163, where Julie wrote "Where's Julie?" at the appropriate point in the j's. I'm still not sure why, but this may be the coolest thing I have read. It made me all tingly.

I am not sure how she feels about wheelchairs and nasty disabilities, but I have faith in her.

I have just started A.J. Jacobs' next book, The Year of Living Biblically: One Man's Humble Quest to Follow the Bible as Literally as Possible, and I am already getting bombarded with the coveting my neighbor's wife thing. Boy, is somebody nervous?

Friday, October 23, 2009

She probably wished it was an obscene caller

If I don't write this, my little sister will bitch and moan about how I ignored her. So shut it.

Mom and Dad are out tonight and I had just come back from a walk with Claren, the 10th wonder of the world (Andre the Giant is the eighth and I am the ninth). On my return, my seat belt again came unbuckled. I am starting to wonder if I am doing it when I bend over.

I fell out of my chair -- there is nothing quite like the feeling of not having the seat belt grab you when you were sure it would -- and to make matters more interesting, I needed to use the bathroom, of course.

I was not at all hurt and tried to get in my chair but failed. Breathing a little heavily I called my sister for help. She came right over, apparently scared it would be worse because I was breathing so hard.

Thanks, dearie.

Wednesday, October 21, 2009

My career as Thumb Wrestler -- down the tubes

Turns out that people with Friedreich's ataxia have a perfect excuse for losing at Thumb Wrestling.

Of course, we have an iron-clad excuse for not dominating any sport, but I just learned the Thumb Wrestling one today at the Muscular Dystrophy Association's FA clinic.

You and an opponent assume the Thumb War stance and the opponent starts pulling back but keeping his grip. You will find your thumb getting lower and lower. It is pretty odd.

It was my first time at the clinic, so I had to do the same battery of tests I have done for years. The thumb one was the only new one.

I'll get back to the tests in a minute, but one of the reasons I went was to get some advice on my AFOs, or ankle braces. Now I wonder: How do I tell the folks who made them that the guy at the clinic (albeit from a rival orthotics company) said they totally suck, are made wrong and no wonder they hurt? He made a persuasive case to me and Mom, but I mean what do I do now? He said the company I used is not great, and if what he said is true, I have no confidence in the company. I mean they did not seem so great to me anyway, and it pisses me off my rehab doc recommended them. But I know they won't give me my money back to get AFOs elsewhere.

Anyway, back to the tests: Doctors have me touch my nose and then their finger. They hold my head and have me follow their fingers with my eyes. They drag sharp objects on the bottom of my foot. The poke me with pins. They test sensation on my hands and feet, They try to get reflexes and pull my arms and legs to test my strength.

I tell jokes ("Only one doctor ever got reflexes"), offer information ("my feet are really bad") or make small talk ("that's a new one" in reference to the thumb test. The doctor told me it was an old one, just one of several ways to test whatever). When I am with doctors, I am on. I need to shine. They -- and it is always a they with me, doctors always bring their students to see me -- need to walk away thinking: "That does it, I am changing my specialty to neurology and will not rest until we cure this accursed FA." If they are cute female med students, they are also welcome to marry me.

After the appointment, where I also learn that the latest potential treatment is not turning out well and the doctors mostly ignore the anecdotal evidence that my elimination issues are related to sitting in a goddamn wheelchair all day, it hits me. I have failed these tests ... again.

Mom says it is not a test like that, there are no F's. She is right, of course; I know this in my head.

In every other part of me -- heart, soul, etc. -- I have proven to be disabled. And I still need to tell off the AFO company.

Tuesday, October 20, 2009

What's wrong with dessert?

It was such a nice day today, and I was off work so I could enjoy it.

It was so nice, in fact, that I considered going outside after lunch and lying on the ground. My sister would no doubt freak when she brought her son home at lunch to find her brother lying on the ground.

The joke would have been on me, though, because she didn't come home at lunch, meaning I'd have been stuck. You have to be willing to suffer for a joke, but that would have stunk (and yes, I am exaggerating because I would not have been stuck).

I decided Calvin of Calvin and Hobbes would do this kind of thing ... if Calvin used a wheelchair and had a really sick sense of humor.

After Sunday dinner, though, I know I am nowhere near the Calvin in my soon-to-be household.

At that meal, my almost 5-year-old nephew waged an ultimately unsuccessfully attempt not to eat the three grains of rice his mother put in front of him. Actually, it wasn't even that. He was trying to not eat the rice but still eat dessert. But because he is, like Calvin, a "dessertetarian," I guess it was almost the same thing.

It was, as his father said, an Oscar--winning performance. He laughed, he cried, he crumpled into his mother's arms, he wandered away from the table, he did it all.

It felt like it took half an hour, and I realized how much trouble I am in if he does this at our new dinner table. His parents will hate me because I will totally fall for his show and undermine their efforts to teach my nephew to eat more than yogurt, breakfast foods and dessert.

Think of all the cavities he will have. They will probably make me pay for them.

Monday, October 19, 2009

Boring old FA

I had my annual physical today, which depending on the health insurance I have, can be an every-other-year event. There is very little to report. Friedreich's ataxia, for all the talk in neurology circles about being the "hot disease," is kind of boring.

I am going to a specialist to check out some stuff, but for the most part my doctor and I just chalk things up to FA. Can't hear well? FA. Can't sit straight? FA.

Don't get me wrong; I do not want a worse disease, but FA is not too mysterious.

Sunday, October 18, 2009

Next step: Wetsuit

I got to try out my long-sleeved diving shirt today at swimming today. It was OK. I can see how it would work well under a wetsuit because I was quite toasty when I was going into swimming wearing just it and my jacket (Well, and my suit and swimming suit).

I'll probably wear it again, but the biggest service it provides? It is so tight it clearly shows all the muscles I don't have.

Anyway ... swimming was good. I probably did 10 pool lengths and then worked on my legs mostly. It was pretty pathetic that I could not stand in the pool, hold the edge and kick my right leg out to the side. I did the left with no problem.

My helper let me off the hook, telling me it was OK to stop. I'll still probably be sore.

He is a good guy, my helper. I asked him why he helped out and he said that we spend too much time helping ourselves and it just feels good to help other people. If I am just going to leech off others, I am glad it makes them happy.

Saturday, October 17, 2009

I am heartily sorry

Two public apologies to make after I took claren for a long walk on the bike trail today.

I am sorry, but I was unable to pick her poop up. It was on a slope next to the trail and between the trail and the slope was a small ditch with water. I went to the top of the slope and tried to get the poop by going down toward it, but I was a little worried I might get stuck.

I also apologize to Jackass McAss (I am sure that was his name) for the colorful language I used after he almost hit Claren and I.

I was crossing West Street at the bike trail in the crosswalk. No cars coming, I checked. Because it was raining I had a hood on so I didn't have much peripheral vision. As I was crossing the center line, I saw movement and stopped. Mr. McAss in his green SUV was attempting to drive between me and the edge of the road.

I mean really? Give me a break! I am in a crosswalk, in the rain, in a wheelchair, and you are trying a jackass stunt like that?

That is essentially what I yelled at him so I am sorry I was mad and used bad language when you almost killed me.

Tuesday, October 13, 2009

I do not need a 200 pound lawn mower

I was watching my little sister mow her lawn as we prepared to remember my grandmother's death.

Actually, it was not that creepy. We were celebrating her life, but we do it around the day she died. Her birthday is March 1, though, which doesn't invite outdoor celebrations. Maybe that is why.

I have talked about this before, but it is odd what you miss when you are in a chair.

I hated mowing the lawn, unless I got to use the riding mower. That was awesome. I am sure I could still do that, but I am equally sure that I would not be allowed to, so I don't try.

Mowing the lawn was cool at first -- I remember I was 9 or 10 when I got to cut the grass. I tackled Gram's front yard first and it took me an hour, about double what it took when I knew what I was doing.

I went around and around the yard in smaller and smaller squares. This couple of young adults walked by and the girl came up and said her boyfriend said it is faster to go in lines. It is. That is what I did later but that day I just said thanks and said I was going in squares.

It was tiring, smelly, sweaty and I always got blisters from holding down the lever that kept the mower running.

Explain to me then why I was watching my sister enviously. I even started thinking of adaptions that would enable me to cut the grass myself. If the mower weighed about 200 pounds, then it could support me. Of course, I would not be able to push that much of a mower so I would need it to be self-propelled, but real slow so I could walk behind it still.

Really, I hated mowing the lawn.

Thursday, October 8, 2009

Fear! Fire! Foes! FA!

I am testing out new ways to get assistance after a near-incident last night.

I like loudly saying "Awake! Fear! Fire! Foes! Awake!" the Horn-call of Buckland from The Return of the King. But part of me thinks that might attract too much attention. Kind of like why his parents tell my 4-year-old nephew that when he is outside he cannot sing "Somebody call 911 shawty fire burning on the dance floor."

But I need something.

Last night I was brushing Claren the wonder dog while sitting on the couch. Mom was at the computer across the room.

I leaned too far forward but instead of falling on to the ground I fell into my wheelchair. My left arm was pinned against the chair by the rest of my body, and my head was grinding into one of the metal pieces on the chair.

My right arm was flailing about aimlessly in the air. I swear if it had had legs, I think it would have been running back and forth waving a tissue.

I was not in drastic trouble. If Mom had not been in the room, I would have moved my head and slid down the chair, probably just scraping myself up.

But Mom was there, so I said "Can you come here?" thinking she would look and come immediately to help. Maybe I said to too softly, but long story short: She didn't come over.

In increasing loud tones, I added "HELP." "RIGHT NOW." I wasn't yelling but was loud enough to worried I might wake Dad who had just gone to bed.

She came over quickly then, and pulled me back up using my stupid girly arm. And I felt guilty for demanding help.

Tuesday, October 6, 2009

Yes, I can

After an appropriate amount of time -- say long enough to tell I was not concussed or likely to die from my fall yesterday -- Mom asked me a question I am sure everyone who has ever helped me up probably wonders.

Could you get up if I didn't help you?

I love the help and assistance, even if I do not always properly show it. It makes life so much easier.

But in all the time I have been falling, I think there has only been once that I could not -- given enough time -- get up on my own.

That was when I fell out of my chair and broke my collar bone. I needed the strangers who stopped to pick me up and get me back in the chair. Then I gutted out the 20 yards back to my condo and called for help.

To be sure, I will whine about it later, maybe make it sound real dire, but I have yet to meet a fall I could not handle.

Monday, October 5, 2009

One big safety violation

My 4-year-old nephew yells "safety violation" whenever he sees my sister, his mom, riding his scooter without a protective helmet. In fact, she told me, he actually ran in front of the scooter to stop her last time.

When my 20-year-old was young,  it was seat belts. "Safety first," he'd announce when he got in a car. "Buckle up for safety," he'd say, and his parents always did.

I am a longtime believer in buckling up for safety. One of the last trips to the emergency room was because unbuckled,  I reached forward to get a cup off the floor and kept going until I hit the floor. Good times.

Now I buckle up everywhere, but lately it hasn't mattered.

For the second time recently, my seat belt came undone somehow and I did not know until I leaned forward expecting to be held safely in place-- only to bash into something, this time the back door.

I hollered for Mom and was about to get back in my chair myself when she came down and helped me.

I still don't know what happened but if I don't get my seat belt straightened out, I may need to start wearing a helmet.

Sunday, October 4, 2009

Of course I am lame, why else would I use a wheelchair?

My swimming teacher called me lame today and it wasn't because I almost drowned or almost mooned a volunteer.

To be fair, she called getting my parents to drive me everywhere lame, and I suppose it is as I am 38. But I have decided that as long as they are willing, I will get a ride. It is miles better than the para-transit service, which is my other option. Anyway, I got bigger worries than getting my parents to drive me places, like you know, my actual lameness. (I don't mind her calling it lame really. She makes me laugh)

I almost made a really big splash as I was getting into the pool. I float over the water wheelchair usually, but my suit snagged on it. It came free fast but I felt water right against places my suit should be. I quickly pulled it up.

I had a big swimming day. I did eight lengths of the pool using my legs only, kind of frog kicking and bicycle kicking. Then I did six doing arms and legs. The hardest thing there is I keep whacking the other people in the lane. We stay in lane 1 so the teacher can watch us but so do other folks. It is full.

The last two lengths were without the floatation belt. I did a lot of floating on my own and worked to keep my belly full of air and floating.

My little sister can testify to this. She drove me and was sitting there when the teacher started yelling at her to "come here. " She did and saw up close I was floating.

To end the lesson, I went under water facing a volunteer, then I let my legs float up. I did it once, although water went up my nose. I said I could do it again – my teacher did ask if I could. I started fine, but my head dipped under too fast, before I was ready, so I popped back up but then rolled and went under not on purpose. After that we decided I was done.

Friday, October 2, 2009

Watch me walk

We have a health fair at work next week. One of the tests they offer, in addition to like blood pressure, is gait analysis

It might be because it was a long week and I was feeling a little punchy, but I asked one of my friends at work how amusing it would be for me to ask the gait people for an analysis.

I don't think I really could. Even if somehow I could justify making someone that uncomfortable, there is no way I could not laugh.

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