Wasting away again in listserv ville

I fell today getting into the shower.

Sort of.

I didn't hit the ground or anything, just slipped and scrunched up my foot getting on to the shower chair. But I never was in any danger.

I am wondering now when the first time I fell in the shower was. I had no grab bars until I moved back to Virginia 10 years ago, but I suspect I fell at least a bit before then.

The day I left Winston-Salem for Virginia, I was headed to the car and Mom was in the parking lot but not next to me. And SPLAT! I fell right flat on the sidewalk. I forget why or what happened. All I remember is being unable to breath and trying to get my breath back.

I began using a wheelchair full time when we got to Virginia.

At my apartment in Falls Church, I used to put a man purse on my shoulder, and using a walker I would head down to the mailboxes to get my mail. I could do it unless someone walked by and said hi, which would startle me so bad I would fall and they would feel guilty.

I used my walker a bit at my condo in Herndon to walk to the back of the condo from the living room. It was a narrow hallway so it was hard to fall, but I found a way. I also used to stand to do my dishes in Herndon. This worked but left me one hand to do the dishes so it took forever. I also was able to stand mainly by locking my knees, which my therapists were not too happy about.

These days I stand mostly to transfer or in the swimming pool.I do miss it, but I think I have demonstrated a fairly strong degeneration in my condition over the years. And there is so much more if needed.

Why, you might ask, am I proving to you that my Friedreich's ataxia is getting worse? Simple, because I am a wimp.

I wrote a while back about how I missed the crazy flame wars on the INTERNAF, the ataxia listserv, that used to pop up over tiny things. Now, Pudding-heads can say whatever they want and no one cares. I quote: "... i said to myself this is no life [using a wheelchair] as i always had been a active sportsman and look at me now." He goes on to say how the disease is not degenerative and that anyone who just sits in a chair will have issues. He says he can walk now, slowly, after exercising two hours a day.  It is not perfect, he says, but "it's much better than wasting away in a wheelchair."

Oh my god, fuck you.

If I was brave, I'd post the preceding paragraph on the mailing list.

Another Sunday without drowning!

I made my return to the pool today, fun as always, even if there were lots of new people.

It was more the absence of people I knew that worried me at first. My teacher wasn't there and I did not see any volunteers until the last minute. Then one of my regulars showed up, and I worked with him and also a first-time volunteer who I suspect was many,many years my junior. Thankfully, she didn't call me sir.

I learned that I am better holding my breath under water than trying to blow bubbles. When blowing bubbles, I run out of breath and inhale through my nose so I can keep up the bubble stream. Or I start to. I remember as water pours into my nose: Don't do that! And I stop, too late to keep out the water but soon enough not to drown.

I also need to figure out what to do now that it is not hot out. My teeth started chattering while I was still in the water, and I wasn't even cold. It could get ugly. I am off to google for options other than a wetsuit.

When I think of God, I groan

“The grace of God means something like: Here is your life. You might never have been, but you are because the party wouldn't have been complete without you.”

— Frederick Buechner

I stole this quotation from The Dude Abides, the blog of the Chicago Sun-Times religion columnist; the title is from the Psalms.

Ever since, I have been thinking about meeting Jesus at a party. I want to be in my power chair.

I used my manual wheelchair when I went to that birthday party a few weeks ago. It is harder to run over people in the manual. I would hit a foot and role backward.

The power chair is more like the irresistible force. It hits things and bounces up and over them. A friend stopped by work a few months ago, and in my rush to give her a hug, I ran over her foot. Fortunately, she was wearing some hulking Doc Martens things, so the chair probably took more damage.

Mom insists that God is answering my prayers to be healed, just not in the way I want them to be answered. (I am not oblivious either to the fact that Mom helps me take off my shoes almost every night, probably an answer to my prayers. I just realized, what if Mom is saying God can't fix me, so I really appreciate what she does? She is devious like that.)

I figure at the party, I can accidentally roll over Jesus' foot, and unlike my friend, we will probably be wearing sandals or nothing on his feet. I don't want to cripple him, just remind him of problems that need fixing.

"Oh, I'm sorry, buddy," I'd loudly say. "It's just so hard to navigate in a wheelchair. I sure wish someone would heal me so I didn't need one. You know, like someone who alleges to be a parent but has a far way to go before actually being one. It's pretty hard to enjoy all the good things on earth when your body is so damaged you can't even ride your trike around the block."

Maybe he'd get the hint -- or is it too obtuse -- or maybe he'd tell me to just watch where I am  going and enjoy the party.

Dieting the FA way

The last two nights, I have not eaten all my dinner.

I am not sick and I was plenty hungry when I sat down on the couch to eat.

But both nights, I started coughing uncontrollably. Not choking. I could breath, but last night a piece of carrot lodged under my tongue and tonight a piece of turkey burger tickled my palette constantly.

My plate or bowl was on my lap, so I suspect anyone knows what happened next.

And now you know not only how I stay thin but why Mom has to sweep constantly in the family room.

Go, go Claren legs

I have been missing the one form of athletic competition I ever had, horseback riding competitions. I don't miss the practices, but the competition riding when it was just me and the horse. And that is the riding I can't do anymore.

Perhaps what I miss is the thrill of competition, so swimming could maybe fill that void. Of course, I was just too tired to go today, so don't  count on me taking the swimming world by storm.

I could always race my nephew. He is faster than i am, but it would be really easy to "accidentally" run him off the race track.

Mom and I decided that it didn't help my competition disappointments to see the ribbons I had won riding when I went to bed every night, so she took them off the wall by my bed. I'll find a place for them in the new house, but I just can't have them in so obvious a spot as the foot of my bed.

In their place, she hung the original, non-computerized version of the drawing at the upper left, me wheeling on the bitter tightrope.

I love that drawing. Even though I use a power chair most of the time these days, I still think it is perfect.

But, I just realized Claren isn't in it.

I thought at first she could sit on my back and hold either an umbrella or a long stick that tightrope walkers use because she keeps my ventures into the dark side to a minimum. But then I thought: Claren doesn't ride on my back.

She could drag a net under me to catch me since she helps me bounce back from my bad bitterness, but come on she is just one dog. I doubt she is strong enough to pull a big net and line it up properly.

Finally, it hit me: Tomorrow at the vet's I will ask about getting Claren some legs like Dyno-mutt or Inspector Gadget. With mechanical legs that extend she can walk next to me on the balance beam and keep me safe.

She and I can also fight crime, which should keep me from missing competition.

Feel like I'm fixing to die

Everyone is worried about the flu these days, and they are saying to wash your hands often and for a long time. I have heard that you should sing happy birthday or the alphabet song while washing to make sure you are getting rid of all the evil germs.

Who wants to sing those little ditties, though?

I am singing the refrain from Country Joe & The Fish's classic “I-Feel-Like-I'm-Fixin'-To-Die Rag.”

And it's one, two, three,
What are we fighting for?

Don't ask me, I don't give a damn,
Next stop is Vietnam;

And it's five, six, seven,
Open up the pearly gates,
Well there ain't no time to wonder why
Whoopee! we're all gonna die.

At least that is the song for today. It may change tomorrow.

Claren had more stomach issues this morning, dropping a load of yucky on the family room floor. It seems to have been a one-time thing, and she is OK now.

In addition to working without her, which makes me feel crummy, I am wondering why she keeps having these issues. I blame the food and am going to change it as soon as I can. Actually, I blame the holistic vet who told me to put her on a beef food. I don't think it is right for her.

And I also think about the R-word for Claren. Is she tired of working? Would she be happier if she retired? I don't really think so, but I can't shake the thoughts.

I blame Claren's absence for the following event. If she had had my back, I would have said something. Yeah, right.

I go to the bathroom; five stalls empty; wheelchair one taken. This actually happened twice today, which kind of boggles my mind, but anyway. The person in the stall the first time is standing and appears, through the cracks in the stall doorway, to be a member of the maintenance staff. I wait a little, and he comes out and nods at me. I go in: There is a paper toilet seat cover still on the seat. It has been touched by a liquid at one place so it has a nice papier mache look. The toilet appeared clogged.

I backed out and left, while he sang the alphabet song at the faucets.

This is what kills me: If I called maintenance to come clean the toilet, this turkey might get the call. So why, in the name of all that is holy, did this a-hole treat the wheelchair stall like his garbage can? And a bigger question: Why didn't I say anything?

It's enough to make me wash my hands to the chant Country Joe led at Woodstock.

Matt the Jock

I got back to swimming on Sunday, which was awesome. It prevented me from watching Daniel Snyder's catastrophe, but even better I actually did some solo swimming.

Mike the volunteer was right there to grab my head but I floated on my own and then the teacher had me do a little motion with my arms to propel me. Not much, and I didn't go far, but it was pretty cool.

I suspect that whenever I start swimming on my own, I will find it much easy. I am too self-conscious, and having three people intently watch me makes me laugh, which of course kills the floating.

I also held my breath under water for five whole seconds. And only once, in the four times I went under water, did I inhale through my nose. I actually managed to exhale most of the water back out so I did not die. Nowhere close.

I also need to get some goggles.

I told the teacher that I use my eyes to do almost everything, and I do. But she has me wear them when I duck underwater. I think it does help me to keep looking, but I think goggles would work better. They would also prevent the problem of me splashing myself in the eyes and losing my floating balance, another plus.

I was telling this guy at work that I was swimming now, not riding horses. He said I was becoming a jock, so maybe I will be the one to rescue the Redskins. I know instead of an armchair quarterback, I'll be a wheelchair one.

Social butterfly

It remains unclear whether I was the only one over 30 at a party I went to Saturday, but I am sure I am the only one who brought Mom's Congo cookies.

And of course I don't mean cookies made with Mom's recipe. I mean Congo cookies Mom actually baked for me. Well, she  and my nephew, who I am sure did all the hard parts like licking the beaters and taste testing.

I got to be a social butterfly Saturday, going to lunch with one friend and then to another's birthday party.

Both were fun. There were a few glitches with the party, but mostly amusing in retrospect, especially since my arms did not fall off.

I called from the main door into the complex and was sure she said she was in building 2023, which was way down a gently sloping hill. I was in my manual chair, so while the party girl offered to come looking for me, I went looking for her building. 

I admit that I got a little drunk on cascading down the parking lot, not realizing until I was almost at the end that she must have been in the main building where I was. The birthday girl and I talked again, she confirming that I now had to wheel back up that slope, which now looked about as gentle as Everest. 

Somehow I made it back up, even over the speed bumps, which weren't even noticeable as I went downhill. I turned onto the road the main building was on, and I saw two people. I had my hopes they were friends, but one had a really weird bun on the top of its head.

Thankfully, it was no mirage. The birthday girl, wearing a party hat with streamers, and another friend were at the main door so they came and helped me the rest of the way.

Apartments also do not have bathrooms wide enough for wheelchairs, but our wily birthday girl took me down to the public bathrooms by their gym. Very wide and wheelchair-friendly.

I also found out that Schoolhouse Rocks lies: Three isn't the magic number, it's 10. 

When we left for the bathroom, there were less than 10 people and I could follow conversations. When we got back, some other folks had arrived and I was lost. I felt like Matt Murdock when he can't control his super-hearing. Not that my hearing is at all super, but it was just too much. I could not hear anything. People kept coming over and chatting, though, so it was OK. Claren made it easier, too. As always she was a hit.

It was cool. In the end I guess it doesn't matter that someone asked about my Green Lantern shirt, and then asked if Green Lantern is a band or what. Or if I was the only one over 30.

What would Superman do?

I think I need to start reading more Superman.

I am not a fan. I remember being put off when I was a little kid by one comic in particular. In it another Kryptonian infected Lois Lane with an incurable disease and she got these huge purple splotches all over. It was nasty. The last panel showed Lois on the ground with the splotches everywhere, but her legs for some reason. Clark Kent sits next to her, head in hands saying "My God! The woman I love is dying ... and I've just killed the only man in the universe who can save her!!"

Lois with splotches was bad enough, but what a wuss. I mean Spidey may wallow in pity but not when his gal is dying. Superman could always fly around the world and reverse the rotation of the Earth, thus making time go backward.

That is one reason I dislike Superman: He is too powerful. He survives nuclear bombs, deep space, you name it. I know he didn't start out that way and various writers have put limits on his powers but he is pretty much invincible. What doe he have to worry about?

We also all know that Superman is a dick.

But he gets his power from the yellow sun of Earth, as opposed to Krypton's red sun.

As the sun starts setting earlier and with gloomier weather settling in, I sometimes feel like the sun gives me power, too.

I want to know how Superman survives at night or in the winter. Doe he store up the sun's energy? Does he fly to the other side of the world for a few hours every day?

I am sure that is explained in the comics and it might be information I can use.

For the record, I didn't remember all those details. Mom dug the book up for me, but I knew where it was: Superman 311 from 1977 "The Curse of the Antibiotic Man."

Matt and the mainstream

I bought some shoes today.

Every shopping trip reminds me, though, how far outside the mainstream I am as a consumer.

I needed shoes to wear over my braces to replace the ragged Simples I have been wearing. I wanted something with a lowish cut, especially on the back. Apparently, low Chuck Taylors were my only option. While I have nieces, nephews and siblings who wear them, no thanks.

I normally wear size 8 shoes. I wound up buying some size 10 shoes so that they would not be too hard for Mom to get on.... Which brings up another problem with these braces: They are supposed to make me stronger and better able to transfer by myself, but I cannot put them on myself. I am just trading dependence.

Most of my clothes is too big for me. I have gotten bigger and bigger pants -- the width now exceeds the height! -- but I don't think I have gained much weight. I mean when I stand up, my pants fall down. It is just because the lame mainstream consumer does not need pants that allow them to sit 15 hours a day or longer.

P.S.: A bonus follows. How I spent my Labor Day weekend.

Travels with Springsteen

I was listening to Blinded by the Light the other day and heard the line "And now in Zanzibar a shootin' star was ridin' in a side car hummin' a lunar tune." I thought to myself: wow, that Bruce Springsteen cat is pretty awesome; I wonder how many different letters of the alphabet start place names?

I apparently have too much time on my hand. I wonder if Bruce would cover Rush's Xanadu?

Mary Queen of Arkansas
and Bronx's best apostle stands with his hand on his own hardware
To her Cheshire smile. I'll stand on file, she's all I ever wanted.
Driving in to Darlington County
Sparks fly on E Street when the boy prophets walk it handsome and hot
Now I hear she's got a house up in Fairview
Anybody wanna go on up to Greasy Lake
Uptown in Harlem she throw a rose to some lucky, young matador.
Through the small towns of Indiana the big train crept
Races Sundays in Jersey in a Chevy stock super eight
Parked making love with their babies out on the Kokomo
In a Camaro with this dude from L.A.
It's midnight in Manhattan, this is no time to get cute
Chasin' all them silly New York girls
Runnin' home to some small Ohio town
I'm a sergeant out of Perrineville barracks number 8
Billy Sutter fought with Charlie Company In the highlands of Quang Tri
An ambulance finally came and took him to Riverside
And them South Side sisters sure look pretty
Meanwhile in South Texas in a dirty oil patch
On a rattlesnake speedway in the Utah desert
In the Valle de dos Rios, smell of mock orange filled the air.
Driving cross the Waynesboro county line
X
Here darlin' in Youngstown
And now in Zanzibar a shootin' star was ridin' in a side car hummin' a lunar tune

Trike trouble

I have been hoping that my trike-riding would go better with my braces. Not to be all negative, but oh my god, it is bad.

I should have taken the hint when Mom could not even get my shoes on over the braces, but no. This morning I got Mom and my little sister to pound and shove my feet into the shoes.

At this point, my sister said, Now I know why you are always so pissed off; it is so hard to just put on your shoes.

Once I got on the trike, I realized that with my braces on I could not lock the shoes on to the pedals. Normally, I push forward and down by bending my ankle, but with braces I cannot bend my ankle down and pushing forward tends to rub my ankle bone painfully.

I eventually got the left one in, but to get the right one in I had to take the brace off, lock the shoe in, put the brace on and get Mom and sister to put the shoe back on.

I considered a napping in the trike because it had been so tiring just to get this far. But no, I set out around the block.

I guess I can't declare it a complete failure because maybe it will be better with shoes that fit and maybe if I get my wobbly knees taken care of, I will gain strength, but that ride around the block was pretty bad.

First off, the right brace rubs my ankle bone something fierce. I also had major trouble keeping rhythm riding. Usually I'd make a full revolution of my pedals, but the right one would not keep going and the left pedal would backpedal.

Things might get better as I learn to ride with the braces, but I am not super-hopeful. I'll just be pissed off.

We're a team

Note to self: When you feel bad mentally, do not leave Claren at home unless she is projectile pooping. She stayed home today for a minor stomach thing, and I missed her so bad. I kept looking under my desk, but she wasn't there.