Wednesday, March 30, 2011

Matt and Cindy Crawford: Which is which?

Is that Matt or Cindy?
We are just that much alike. Well, except for her mole, her fame and money, her working neurological system, cultural and moral beliefs, and, of course, her lady bits. Other than that ...

Basically, we both don't mind taking our clothes off. Or in my case, having my clothes fall off.

I reached this conclusion at the wheelchair place yesterday as they were fixing up my manual chair (more on that later).

I transferred several times between chair and couch so the technicians could see what needed doing and then do it. On the last transfer to the manual chair, I felt my pants sliding. The guy who were helping me transfer said: Let me straighten you up here. But he straightened my pants that had gotten turned around.

I had to get back in the power chair for the ride home, which I knew was trouble. Sure enough, my jeans, which had a belt holding them up, slid halfway down my hips. The wheelchair guy said something like: Oh, you're losing your pants.

Was I supposed to be embarrassed? So you could see my boxers, big deal! They were black shorts with gold designs, for those who missed it.

I just laughed and said to the wheelchair guy, yeah, it's been a long day; I'm going home. Then I did leave.

At the doctor last week, I noticed my lack of embarrassment. The nurse got out a surgical gown and I thought she was going to help me undress. Then she said: Just take your shirt off and you can put this on.

I was like: For a shirt? Cindy and I don't mind being topless.

The wheelchair is much better. I used to feel like I had no back support so they put on a really comfy back. Now I feel like I am being spooned by my chair. (Not that I have ever been involved in a spoon situation, but I am extrapolating from my days clearing the dishwasher and putting away utensils.)

Monday, March 28, 2011

Paul via rear window captioning

When I saw Superman Returns with rear window captioning, I could not position myself properly. I remember thinking that nobody is ready for someone with two disabilities: the wheelchair user who sits in his chair but also needs the captioning tool.

In the local theater at Tysons, the captioning system is a piece of Lucite on a gooseneck support that fits in the drink holder. You adjust it so you can see the captions showing on the back wall and the movie. The gooseneck wasn't really tall enough for me in the wheelchair. I wound up reading the captions, then looking at the screen and vice versa.

When I got to Paul Saturday night and saw the captions on the back wall, I quickly asked a friend to go see if I could get the system. I was pretty excited. I didn't expect to be able to hear the movie but now I might be able to.

I got another friend to help me into a theater chair, but even then I could get it so the captions and action were in one line of sight. Still, it was a million times better than it would have been.

I would never have understood the English guys who are the stars and Paul the alien would have been hard to lip read. As it was, it was pretty hilarious.

Friday, March 25, 2011

Have I told you lately how much I hate you, FA?

I should be climbing tonight. Instead, I am home reading and writing with stuffed animal Blue 2 under my right arm. My shoulder had been sending out little twinges all day, but on the ride home from work every bump made me wince. So I decided to cancel climbing.

I have a nerve somewhere in my shoulder that gets pinched, stretched, twisted or something. I will try to turn my head or raise my arm, and I will feel a flash of what is as near to unbearable pain as I hope to know. The flash of pain often causes me to spasm and jerk to stop the pain, which makes for some fun times. After that, it settles down then into simple pain.

Granted, Friedreich's ataxia did not cause the recalcitrant nerve. That achievement goes to a wheelchair, sitting all the time, using my arms much more than they are made for, etc., but FA causes all them. So it's like the Prime Mover.

Thursday, March 24, 2011

My kingdom for some pants

I am not a wealthy man. I don't really have a kingdom, so paying $90 for a pair of jeans seems a mite extravagant. But I own zero pairs of pants that fit and that is the going rate for wheelchair jeans.

All my pants are too big so that they are not constricting when I sit in my wheelchair all day. But when I stand or transfer, I often slide right out of them. It also winds up being just a lot of unnecessary material in the front -- I get lost trying to go to the bathroom sometimes.

I could wear a belt, I suppose. I wear a belt for rock climbing. The problem is a belt requires coordination I don't have.

I may have to start wearing sweats 24/7. My brother would never talk to me again.

Tuesday, March 22, 2011

I'm old

I was in the doctor's office today for my physical. Everything was cool: She thought I was doing really well, and no more tests are planned. My blood is my own, once again. And I am free to flush my stuff down the toilet again. YEAH!

But what really hit me is that I am old. My doctor didn't say anything. She wasn't even in the exam room when I came to this conclusion.

She stepped out for a moment and my eyes fell upon a Good Housekeeping magazine touting an interview with Kelly Ripa called Fab at Forty.

I am as old as Kelly Ripa? And she's 40?

Kelly Ripa is obviously an adult. They wouldn't hire a young person to be Regis' foil for all those years.

I know this is stupid, but it did really make me feel old. I guess if that is the worst thing that happens at the doctor, you are lucky.

Monday, March 21, 2011

Finished the Test that Dare Not Speak Its Name

I can't write too much about it because if I gross my little sister out, she said she would retaliate by talking non-stop about breast pumps and girly stuff. So I will be brief.

FedEx came and picked up the well-wrapped and bagged stool from the three-day stool collection test. Mom did the heroic work of packing things up properly. I just pooped, which has been much easier since I visited the nutritionist.

I can't thank Mom enough. I don't even want to think about trying to do all the prep work.

Saturday, March 19, 2011


My 6-year-old nephew is looking forward to living with me because he loves me. He loves the goofy Uncle Matt with the very immature sense of humor who reads comics, gives wheelchair rides and promises him all-night Wii gaming.

Today, though, he got a traumatic taste of what living with Uncle Matt and Friedreich's ataxia is really like. I hope he still wants to live with me.

I fell in the bathroom this morning. Not bad at all. I just did not have my shoes so I could not really stand up by myself. Dad was out at the farmers market, I thought, so I pushed open the door and shouted for Mom. Twice. Nothing. But as the door swung open the second time I saw my little nephew just sitting there blithely playing computer.

I had the exhaust fan on in the bathroom so I could hear less well then normal, but I called my nephew, once, twice, three times, before I heard him say yeah. I had dragged myself to the doorway so I could look out, and I figured once he saw me he would leap into action. Of course, he never turned his head from his computer. Get Grandma J., I asked him, so with eyes still on the computer he yelled, "Grandma J., Uncle Matt needs you."

That brought Mom and Dad, who had returned from the farmers market. Dad helped me, although I learned later his back hurt. Mom talked to my nephew whose face crumpled. I assumed it was because I had needed help and he had ignored me more or less.

After I got back in my chair and got my pants on, I went to see my nephew, who was back at the computer. I told him I wasn't mad at him, which was a lie, to be honest. I don't like being ignored. He whimpered OK. I told him I just couldn't hear him. Again the teary OK. I told him I was fine and I loved him. He said OK. I asked what he was playing to try to get his mind off the teary track, but he mumbled something and I don't think his heart was in the gaming anymore. He did start up a game called "Sorry" if we are looking for subconscious stuff.

His mom came and got him soon after. I then learned that he was crying not because he let me down but because Mom had told him that when Uncle Matt asks for help, you need to get help.

I do hate being ignored, but I hate dragging my nephew into the goddamn world of Friedreich's ataxia even more. I am almost 40 and still can't really deal with it. Am I really asking a 6-year-old to get it?

PS: My sympathy for my nephew waned a little when I heard what he told his mom when she explained that he had to go get help when I call for it. But my game didn't have a pause button, he said.

PPS: This whole experience may have been engineered by my little sister to keep me from writing about day 1 of the Test that Dare Not Speak its Name. But there are two more days!

Friday, March 18, 2011

Here's looking at you, PB&J

Perhaps the worst part of the visit to the nutritionist was learning I had to give up peanut butter.

It apparently compounded my digestive trouble ... Wait a minute, why am I euphemizing that? Seems that the Good Kind of Bitter is nothing if not up front.

Apparently, peanut butter aggravates my constipation. It also contains some toxin, the nutritionist said. I take that with a grain of salt because she said all peanut butter does except organic. Not sure what the FDA would say about that, but whatever.

I have eaten peanut butter and jelly for lunch for years. It is cheap, easy and good.

Oh, well. I'll miss you PB&J.

Wednesday, March 16, 2011

What to do

I was sitting there at work (me sitting: shocking!) trying to open my cheese stick that the nutritionist suggested, and I became very self-conscious about what I should do with my mouth as I struggled to open the damn thing.

Cursing loudly was out as was muttering because of my co-workers.

I didn't want to leave my mouth open as I fiddled with the cheese. And for me keeping my mouth closed is like telling me not to take a deep breath. In that case I immediately need to breathe deeply. In the mouth situation, I need to breathe through my mouth.

I considered sticking my tongue out a la Michael Jordan but decided it wasn't worth showing that much effort. But it was that hard.

Everything is that hard. Nothing is easy. But the cheese was pretty good when I finally got it open.

Monday, March 14, 2011

What do you make of this?

Last night I dreamed I was visiting the cemetery with my maternal grandfather.

He is dead. And he was dead in the dream, but he was very corporeal.

We split up for a moment and I found myself walking toward the middle of the cemetery holding a yellow Wiffle ball bat in one hand and something white in the other.

One of the top editors at the paper was there, only he was now a priest. I greeted him and he asked why I had the goofy yellow bat. I told him I needed it to see my brother's grave and motioned to where my infant brother's grave is. That made sense to him.

I kept looking for Granddaddy because I was ready to go, but he was cleaning the grounds and moving rocks off the graves.

I wandered over to his grave and that of his wife, and there were these loudmouths there. They said they really loved Gram, but they had parked their big boat of a sedan almost on top of her grave.

That is all I remember.

Saturday, March 12, 2011

Winnie the Pooh and God

A friend of mine recently celebrated the two-year anniversary of her faith-healing.

She is more a Facebook friend now, but she was my friend when we worked together. And she is not someone to lie.

I hate faith-healing and the cures at Lourdes and other holy sites. I hate the miracle cures Jesus performed. They all stab at me, mocking: Why aren't you good enough?

And if I was cured, then what? I think that would be worse: to be the recipient of a miracle cure when others are still sick.

When I was a child, I had a fever-enhanced dream that combined Winnie the Pooh and Jesus Christ Superstar. In one Pooh story, there is a flood and he watches from the safety of a tree branch as jugs of honey float by below him. In JCS, Jesus is pursued by sick people who want him to heal them. He finally cries out, "There are too many of you."

In my dream, I was Pooh up in the tree safe. Instead of honey floating by, it was people, who reached out to me. I could not help, and I, too, shouted, "There are too many of you." I woke in tears.

I can only assume God feels similarly rotten when seeing all the sick people on the earth. Mom says God can't heal us all. And if God feels the anguish of not being able to cure everyone, then why cure anyone? What does it say if someone gets cured but others don't?

UGH. Another question: Why does thinking of God often leave me sad?

Wednesday, March 9, 2011

My leg isn't dead

I was kind of scared after what I did to myself last night.

I fell during a transfer. My right leg was in the position it would be in if I was squatting, so upper leg and calf making a V at the knee. But that right leg suddenly found itself bearing all my weight and my upper leg squished down to touch my calf. Then my knee remembered it does not bend like that, and the upper leg bounced back up a bit, throwing me even more off-balance.

I have never thrown up because of pain -- because I am a BADASS -- but it has been touch and go few times. This was one of those times. Later, it was all warm, and a warm body part on March is usually bad news for Matty.

I imagined all the capillaries and nerve fibers snapping, and their deaths produces energy that warmed my leg. (Poetic and scientific.)

But apparently, my legs are up to the task of bearing a BADASS (in more ways than one considering that I went to that nutritionist because of digestive issues).

Tuesday, March 8, 2011

My dog eats better than I do

That is one thing I took away from my meeting with a nutritionist yesterday.

Several times she said "Have you heard of this?" or "Do you take that?" Both times, I said, Claren takes them or used to. So yes, I have heard of probiotics and fish oil, but I just give them to my dog.

For the moment. I think I am going to be taking them soon.

After trying to put some of the ideas into practice, the other takeaway point: I am not at all sure she realized how compact and svelte I am. (Is sylphlike really a synonym for svelte? Maybe I am not svelte.)

I am supposed to eat a bigger breakfast and add in snacks all over the place. Of course, the snacks are vegetables.

I guess the other takeaway: This is going to be a long process. Just wait till I write about the three-day collection of things that ought to be flushed not collected.

Sunday, March 6, 2011

Sick days

I tried writing through my cold but it is making no sense. Be back soon.

Thursday, March 3, 2011


My face hurts.

I sneezed at dinner and had enough warning to push my plate out of the way. Instead, I flew into my glass and hammered my cheek down onto it. It fell over and my face continued down onto the side of the glass.

My niece let out a startled guffaw as the water that was in my glass flew across the table. I think it stopped before it hit her mostly. She started to laugh again, but both her parents immediately quieted her. They were worried I was hurt ... badly, I mean.

I was actually trying to laugh because I didn't want to scare the kids, but it came out kind of like a choking cough. I did get the laugh out finally, freeing my niece and nephew to laugh about "the craziest thing ever."

Tuesday, March 1, 2011

Ah, Friedreich's ataxia, my old enemy

My little sister recently said she thought that my brother and I suffered no Friedreich's ataxia symptoms till college. She said she just remembered us running around and playing like normal. I had to disabuse her of that notion about me.

Our grade school added a playground with a three-tiered balance beam when I was in about fifth grade. I wasn't able to climb to the different tiers, but I remember being so proud of myself for walking the low beam. I am sure I bragged to Mom about it.

I am not sure where I got it, because the Internet didn't exist, but sometime in grade school I had gotten a list of three coordination exercises. One used a yard stick, but I forget the exercise.

One had you stand up, bend your legs slightly, stretch your arms and close your eyes. I don't remember perfectly, but I want to say 15 seconds was my time, and if I cheated a bit -- say, opening my eyes or moving my arms -- I got to 30.

The last was to improve hand-eye coordination and involved bouncing a ball off a wall and catching it. I rarely caught more than one in a row.

I think the poor hand-eye coordination also explains my poor attempts at javelin in Summer Games 2. You had to push the button really fast to get up speed before the toss. I just could not do it. I was great at rowing, though.

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