Step by step

I don't walk up and down stairs as a general rule -- not really cut out for it balance-wise.

Now, though, I have a new reason to dislike stairs: It is cold when you climb up stairs out of 90 degree water.

At aqua-therapy today, I climbed one step, then climbed down. It felt pretty good, except the cold thing. I used my arms too much to get up and down, but it was all right. I did take a mouthful of water when i was trying to push up my glasses. I leaned my face to the right and the water was right there.

I also did a little work with dumbbells. It was almost like I was with my little nephew. (Get it? Hee!)

Careful what you wish for

As we were out walking, I was asking Claren what I should right about. My ride got me to work early today, and I didn't want to write about that even though it is frustrating that I cannot tell until I roll into work whether I will be on time, half an hour early or an hour late.

I do have some thoughts I am working on, but I am not quite ready to unleash them on the world, maybe my little sister, but not the world.

Then as we were crossing the street, the topic reared up in front of me and almost killed me.

Actually, it was on my right side.

I crossed the first two lanes of my street with no problem and started across the other two lanes. They were clear ... but out of nowhere, a car started shooting toward me.

I didn't really have many options at this point. It's not like I could speed up or turn around. I guess I could have waved my arms at the car but that would have meant stopping my chair. I decided to just fix the driver with my steely gaze. And keep moving to get the hell off the street.

It worked. The car began slowing about 10 or 15 yards before me and as it slowly passed me, the driver held out his hand, as if to say: "My bad."

Once I was out of the line of fire, I raised my hand, too, meaning: "What the hell?"

I was not particularly mollified by his hand gesture, but I am not sure what the correct sign is to express: "Sorry I almost killed you."

Putting a hurting on folklore

Doorways are very liminal. You know, a threshold between worlds and dimensions and such, a place full of the uncertain.

I learned this in my Scandinavian folklore class at college years ago. As I recall, newly married women and dead people did not pass through doorways in some cultures. The dead people got passed out a window. I forget about the brides.

The liminality of doorways was hammered home a few years ago when Phoebe, the third-cutest Halliwell sister, was transferred to another dimension when she passed through a doorway on Charmed.

Two quick asides: I just searched Television Without Pity to find the episode of Charmed, and apparently doorways were used like every other episode to effect change. And for all you curious minds, it goes Piper, Prue, Phoebe and Paige.

It seems, then, that doorways can be dangerous places. I know about that. I doubt there is any doorway I use regularly without a black smudge at wheelchair arm level and a scrape at footrest level.

With the doorway danger in mind, I decided to take decisive action, to show my bedroom doorway who's boss, to shock and awe that sucker.

Actually, I was hungry and still half-asleep after my nap tonight when I bashed into the doorway and ripped part of the frame several inches out of the doorway itself.

I'm not ready to go to another dimension or be attacked by dimension-travelers or whatever

A toilet? In a bathroom?

Here is a little tip for all you aquatic therapy businesses: Put a toilet in the changing room.

I changed out of my suit after my session so I could have dinner at Mom and Dad's, mostly of course to see my niece and nephew. They have a mean "Old Dan Tucker" dance. Normally I just wear the wet suit home and change there.

I almost had to use the shower stall as I got out of a warm water, dried off and pulled on dry clothes. A shower but no toilet.

I survived bladder intact, I hope anyway. It was a good session, too. I was pretty tired from all the exercise.

So tired

A friend of mine loaned me a DVD of a documentary about people who dress up as superheroes, and I wondered how this gal has time to watch DVDs. Another told me she was reading a book about the paradox of choice, and I was staggered. If I have the energy to read a comic book, I consider it a good day.

It must be the wheelchair and disability that leave me so bone-achingly tired after every day of work, before it, too.

I always dose on my ride into work, but today was something else. I opened my eyes as we were getting off the toll road, a few minutes from work. Next thing I knew we were pulling past the guard post at work.

And it seems all I can do is be tired. I can fight through it or nap; the result is the same.`

I guess I need gloves

Probably I should be looking at glove websites, not writing this.

Why? Well, let me tell you ...

I returned from my walk tonight and decided to get my mail. I forgot there was no mail today because of the MLK holiday. I had some because I had not gotten my mail Friday. But I almost didn't get it.

I pulled off my glove to get my keys, and my fingers were too numb to pull the keys out of my pocket. I could feel them, I thought, but not get them.

I actually entertained ideas of going to a neighbor and asking her to reach into my pocket and get my keys. And even though my keys were in my coat pocket and nowhere near anything questionable, the idea struck me as sexual harassment or at least just really weird.

Instead, I went to my door and tried to get my keys there, but now I could not even feel them. I then took my jacket off and shook it: no keys.

Now I was real confused, not to mention cold. I knew I had put them in that pocket. I decided to call Mom and Dad and ask them to come out with keys but tell them I was retracing my steps so might find them.

I got my coat back on, pulled put my cellphone and headed out of the entrance-way so reception would be better.

There, in front of the mailboxes were my keys.

A skirt, I mean kilt, wouldn't have helped this time, huh?

Fat Matt

To my horror, my little sister noticed what I was going to write about as a benefit of being in the wheelchair.

She made the discovery as I lay flat on the floor of my parents' family room after her children had finished playing "Keep away from the cripple."

In their defense, she and I were playing keep away from them, and I was already on the floor. Also, my niece did seem quiet perturbed by my lying on the floor. We need to get you back in your chair, she said.

What my sister saw is that i don't button the top button of my jeans because I am so fat. I used to but figured why? It's not like anyone can see my waistline. And no one can ... when I stay in my chair.

I may have to buy some new jeans.

Maybe I need a new remote

I cannot decide if the visions of Chuck Norris (the reason why Waldo is hiding) bouncing through my head are good or bad, but Walker, Texas Ranger is stuck in there.

Once again, my remote failed. I don't think it was batteries this time either.

I turned on the TV in the bedroom the box and sat on the floor to brush Claren while I watched Psych. Then House came on and I was trapped. It seemed an interesting one , and Riley from Buffy was the patient. I never actually was a huge Riley fan; mostly it was jealousy -- he played Buffy's post-Angel serious boyfriend. But now out of love of Buffy I had to watch.

I got into bed without checking the remote. It had worked Wednesday night. By Friday, it was dead apparently, and after recalling the struggle to turn the TV off last time, I just tried to ignore it and go to bed.

That worked ... until I woke up at 6 and Walker's friends were infiltrating an old-age home and you knew they were going to get caught and that Walker would have to save the day.

But I could not watch because I had to get up and feed Claren. So I have been imagining the fight since.

Who cares what it is called?

I remember not knowing what was wrong with me, but knowing something was.

Not really in high school -- I was just a nerd -- but in college I remember things that just weren't right. I always tried to walk up and down stairs holding the bannister. One time, I was talking with a friend and I got caught in the middle of the stairs. I slipped and kind of grabbed him a little before righting myself. He just looked at me real briefly with surprise and a little annoyance.

There were plenty of other signs. At graduation we walked down the stairs of the Rotunda. I had friends make sure my steps were true. Unfortunately they were not there when I walked off the stage at the smaller graduation for my major: history. I slipped and only my fast-thinking brother-in-law who leaped up and offered me his arm kept me from tumbling. I hated the looks I got that day, assumptions that I was drunk. I even wrote a professor who looked particularly disturbed to assure her I was disabled not drunk.

I found out I had Friedreich's ataxia on the phone when I lived in North Carolina. That is my one complaint about my first genetic counselor. He told me I had a fatal disorder over the phone. Granted, I did call and ask for the test results. But that was only because we had heard nothing for so long.

At my next appointment with the genetic counselor, I spent some time talking to his intern who wanted to know how it felt to go from an unknown disorder to a known and fatal one. I told her that it went two ways: Now, we know what they need to cure to cure me, so yeah. But the test confirmed that I did not have a simple disorder that could be cured by taking Vitamin E, so boo. Also on the boo side: FA is a killer.

Of course, I told her I was still pretty ticked at God, known or unknown ataxia.

In the end, though it didn't matter, I told her. I still had to get up and go to work. It doesn't matter why my body fails, it just does. It still doesn't matter.

Font of grace wants a day or two off

Almost 10 years ago, my newspaper sister wrote a column about her siblings' disability. She said that I, and my brother, was a giver of grace because I offer people the opportunity to help a stranger. I don't know how she feels about her column after 10 years. I read it and still find the words ring true. That does not mean, though, that I am not sick to f--ing death of being a font of grace.

I had several notable experiences today, some exciting in the sense of I could have gotten hurt but didn't, some just annoying as hell. They leave me longing for a nice boring life, when I am not someone who needs help from strangers.

I got to work an hour late, after getting on the para-transit bus almost two hours earlier. I think I am just going to give the service props for coming up with new ways to make me, borrowing from Homer Simpson, "groin-grabbingy" late.

Today, I got on the bus a few minutes early and we drive about 20 to 30 minutes to a nearby town to pick up another client. We then drove her 10 minutes back to my town, and here is the twist: The client told the driver her dropoff was for 8 a.m., and she could not be dropped off early. So we sat for 10 minutes in front of the Herndon Senior Center. I understand that the center did not open till 8, but you can't schedule trips you can't be early or late for. At least that is what I have learned.

The upshot of my continued lateness is that I am not taking a comp day for working all day Sunday. I can't rely on getting to work on time anymore; at least now I will not be costing the company money. And this was my idea.

I went to the restroom and someone sat in the stall next to me. This was fine except for when I knocked the loose roll of toilet paper onto my neighbor's foot. The foot didn't move, but I was too embarrassed to apologize, and no way in hell am I reaching under a stall divider -- no matter what. So I just fled.

I went into the bathroom later and I did notice the stall next to the wheelchair stall has two loose rolls of toilet paper. That was not why I went to the bathroom, but as I was transferring to the toilet, I reached out to grab the grab bar and just missed. My head smacked the stall divider, and I tweaked my ankle, but I was OK. The biggest problem: I was in a tight spot and kind of stuck. I could move plenty, but there was not enough space to enable me to stand.

Then I heard someone come in the bathroom. In a minute or so I heard the faucet so I figured he was leaving and I could get back to my grunting and standing. But then I heard: Excuse me, are you all right?

I laughed and said yes, but when he asked if I needed help I took him up on it and opened the stall. Fortunately, I had not pulled my pants down before I fell. He helped me up on to the toilet, then my chair and held the stall door for me to get out so I did, though I still had to go to the bathroom. I just went and looked at myself in the mirror and asked God silently if he was fucking happy with himself (I tried not to curse, Mom, I used dashes in the first paragraph but could not use dashes here). I didn't get an answer, but the guy, Jim (he introduced himself; two strangers in one bathroom stall would be unseemly), left, so I went back to the stall and did my business.

I so wanted to tell someone what had happened and not my little sister or a relative. I don't know why but I wanted a friend to share it with. There are several people at work I would like to have told, but I am not sure they would like to be told, or even know what to do with it. So I sucked it up. I do that a lot.

Finally, I went to aqua therapy and did more walking and exercising. I am growing more jealous Aquaman each time I go, and I bet he doesn't have to worry about falling in the bathroom. I can't even imagine there are toilets underwater.

Screw the 5 second rule

I had two French bread pizzas for dinner last night, even though one of them fell cheese-side down on the floor. I am sure it was OK; it passed the 5 minute rule.

Yeah, I have my own set of rules. I don't even begin to react until after the 5 second rule expires. Then I need time to curse and whine to God. Then I have to tell Claren to stay away (not that she'd eat it when I am right there sitting on top of it but just to be sure). Then I have to figure out to pick hot food up from the floor from my GD wheelchair. Then I have to pick said hot food up.

Five minutes is hardly enough time.

A cursing mom is rarely good

When Mom pulled up outside work at 1:51 for my 2 o'clock to take me to a appointment, I asked where she had been. To save her the shame, I'll just say she used an adjective to describe the basement garage that I use on occasion.

It turned out that she did not really wish that God would smite the basement; I don't think she wasn't even upset at the snafu on where to pick me up (I blame the weather: Dad had said outside unless it was raining, which it was when Mom left to get me but not when I left the building). She told me after we were on our way to aqua therapy that she can't help it, she worries about me when I am changing clothes in a bathroom (I did not think my bathing suit was appropriate work attire, so I put it on in the bathroom at work).

My question then: Why doesn't Mom have a mouth like a sailor or mule driver if she curses when she is worried about me?

The aqua therapy would have been anti-climactic after that, except I walked.

I was in the water, but still it was pretty cool. I stood in 4 feet of water for about 40 minutes. I walked around the edge of the pool (or part of it), marched in place, stood on tiptoes and other stuff. It was pretty tiring but cool.

I am thinking Aquaman is not so stupid after all.

I am waiting for the pain to kick in, but am OK so far. Now, I just need to figure out how to build a pool in my condo.

iBots and babes

The biggest disappointment today: I won't be getting an iBot.

Insurance is not down with iBots, I suspect. I told the wheelchair vendor who came to my condo for an in-home assessment that I wanted a chair that raised and lowered me. I did not mention an iBot specifically.

He told me about a chair that raises you five inches, but insurance deems that medically unnecessary so it won't pay for it. I guess then the iBot is out of the question. We instead concentrated on finding problems with my current chair to persuade my insurer to buy a new one not just repair this one. So the iBot will remain a dream.

Also remaining a dream: My hope to have my aqua therapy led by a lusty brunette in a dimly lit pool with sultry jazz wafting overhead.

Instead it was led by Greg, a nice guy whose first words to me were: "BC? Uh-oh." I was wearing my Boston College sweatshirt and he turns out to be a Villanova alumnus. We were cool after I said I didn't go to BC, and after getting over my original disappointment the session was good.

It is a small pool, mostly 4 feet deep, and really warm, 92 degrees. He got me in with a chair lift and I just stayed in that chair and did a few leg lifts, knee and ankle bends, and some simple trunk exercises. He said the hot water generally takes a lot out of people so he wanted to go easy on me today. His plans, though, include me standing in the pool and walking up and down submerged stairs.

The thing I am unsure of is the long-term benefit. I will go to therapy for a month, and it will help. But when the month is up, what then? I imagine I'll find out.

In the meantime I will go to bed. I am not really tired yet, well no more so than usual for a day without a nap and four hours of work from home. But I can dream of iBots and lusty brunettes.

Explain this, please

I see my neighbor so little, one might wonder if she maybe is avoiding me. After tonight, we can remove the "maybe."

As I was heading out to walk Claren, Carissa came out. (I only remember her name because it reminds me of Clarissa, who explained it all.) My neighbor, without the "L," had a brace on her forearm.

I asked what had happened and she said she fell. She said she was going tomorrow to get the X-ray results, but she didn't think it was broken. She didn't sound all that broken up by it (hee), and when I said sorry, she said: "It's OK, what are you going to do?"

I really replied: "Yeah, I know about falls."

Nervous laughter and a "yeah" ensued.

At least I didn't tell her this:

I was cold this morning. I don't know why because it is so nice out I didn't even where a coat to work. Still, I was cold, so I stayed in the shower too long. I also was in the shower extra because my new bottle of shampoo didn't just have a cap, it had a seal, which I had to peel off with my teeth.

I don't know if that is why I fell – because I was hurrying. I don't know why I fell; I just did. I swept half the stuff off my sink on the way down, too, as I tried to catch myself. It didn't work. I hit the ground, and my head smacked the toilet, luckily I hit the plastic seat parts, not the porclien. But I had some trouble getting up. There was lots of howling, and I called myself or my legs a word that I am not sure even exists but sounds really bad. I didn't really want to shimmy up the wheelchair backward because I was shirtless and that would cause scratches from hell. I finally got up but was so tired.

I went to brush my teeth and my brand new electric toothbrush was dead. It works tonight, but seriously it was powerless this morning. I dragged the dead toothbrush across my teeth a few times, then put on my shirt and went to zip up my pants, and no, I also don't know why I did it in that order. The zipper was totally wedged down in the pants fabric and would need pliers to get out. No time for that, though, because at that point my ride called to say it was outside. I rushed to the kitchen, grabbed some food (not even my normal breakfast muffins) and left. That is actually why I didn't have my coat, not because it was really warm.

I was more or less on time for my ride – it had called early – and we left by 7:10 a.m. for another pickup. We got there in five minutes and waited until 7:45 a.m. I rushed, nearly killed myself, left my coat and preferred breakfast all so I could sit in a GODDAMN bus for 30 minutes. Clarissa would have had an explanation. But I sure don't.

Not so legendary

I have read nothing about "I am Legend," but it looked pretty cool. Will Smith wandering around an empty NYC with his dog and a big gun. What could be cooler?

So when Miked suggested going to see it, I said yes. And it was good ... for about 10 minutes, then it got unbelievably depressing. Not because of who does or does not die (see, no spoilers, right, EMT?).

It is depressing because this guy is all by himself; everyone he knows and loves is gone. At one point he is begging this mannequin to please say hello to him. It would probably would have been really bad if the mannequin did, but I just wanted to cry.

I am a fan of Will Smith's and Sam the dog is awesome, but I am still sad.

Who wants me?

I have John Prine's greatest hits on my iPod, but I have only heard it a few times. Except for Springsteen and Christmas music, I mostly just let my iPod shuffle through my tunes.

His lyrics were still the ones that came to me this morning as I was lying on the floor of the bathroom three-quarters naked.

"Please don't bury me / Down in that cold cold ground / No, I'd druther have "em" cut me up / And pass me all around."

Who, I thought, would want any of me?

Not that I was at all near dying or have anything against being buried. Just make sure I am totally dead. My oldest sister isn't the only one who has to take a deep breath at that thought.

I wound up on the floor despite taking extra precautions when removing my longjohns. I decided to sit down to remove them even though it meant resting my bare bottom on my chair. I pulled my longjohns off my waist, then pulled them off my right leg, then I toppled forward off my chair.

I guess I whacked my head on the wall and wound up with my naked right leg getting hooked on every piece of metal on my chair. My skin, especially in the winter, reminds me of that yellow paper like the Declaration of Independence is on. It tears and scrapes so easily. My clothed left leg was wedged under my chair.

That was when I started thinging about John Prine. My eyes have a nystagmus, I would not wish my poor-hearing ears on my worst enemy, all my organs have Friedreich's ataxia. Who'd want any of me but medical scientists?

After that I got up and into the shower. No problem. Of course, I was out of breath until I was brushing my teeth 30 minutes later.

The most annoying thing: I really wanted to "give my Knees to the needy."

Permanent means forever

Apparently, the former editors of my college newspaper are not the ones who do not know the meaning of permanent.

As I have mentioned, they deleted the permanent folder where I had stored stuff I wanted kept permanently. I thought then this was the height of permanent silliness.

Yesterday, I got a letter from my para-transit service saying my membership was about to expire and I would need to reapply. Not a simply phone call or e-mail that I need to extend my membership. No, a full reapplication.

That means I have to ask my doctor to once again fill out the form that says 'this disability is: __ permanent __ temporary." And once again Dr. B will have to check off all the hurdles I would face trying to use regular transportation. Then I will have to go see one of the service's occupational therapists to determine that my doctor and I are not lying. As if anybody would want to use this service. Half the time, I am tempted to start driving again just so I need not use it.

This actually will be my second re-enlistment -- one every three years -- but last time I did not have to get my doctor to fill out the application. I only had to see their OT. The service drove me there, was way late and I missed the appointment and waited around in a crazy line. It was great.

A cynical person might wonder whether the service creates inconveniences lije this to weed people out.

I am sure the editors deleted the permanent folder because they assumed no one used it but them. Silly.

But without being cynical, I honestly have no idea why a permanent disability is only six years long.

Howling away

I was watching "Bruce Almighty" recently, even though I don't care for Jim Carrey. I hope I don't sound that whiny.

He compares God to a mean kid with a magnifying glass and the world is the ant hill. Even though he is dating Jennifer Aniston and can sit in any chair he wants.

We'll leave aside the Jennifer Aniston thing, though that should disqualify a human from complaining.

I was leaving work the other day through the lobby, the same lobby I have wheeled through for years. I passed some chairs that I have passed every day for a while. And I thought: "Wow, those look pretty comfy." They are just bench-like chairs with no arms, probably not that nice, but I wish I could find out first-hand.

I probably could transfer into one, but I don't imagine the company would be cool with a significantly disabled worker transferring for no need other than curiosity. If I fell, I might crash through the glass coffee table in front of the chairs. I'd almost be too embarrassed to collect workers comp. Almost.

Plus, Bruce has a bad time at a party because JAG-ette Catherine Bell hit on him. I went to a party tonight and also had a bad time. Unlike Bruce, my problem was I could hear so little. I may have been hit on and replied with something like: "Yes, my dog is great."

My beef with God, though, is not that he is a bully (again, I use the male pronoun for ease). And it is not really that he doesn't snap his fingers and cure me, although a miracle would make me awful pleased.

I think it is the lack of responsibility. I was taught to praise and thank God for good things, but you aren't told to damn him for bad things. And good certainly does not triumph over evil. Sure, maybe at the end of the world, but who has the time to wait?

I guess I see the world not as an ant hill but an ant farm. God set up this kick-ass world but now he is interested in aquarium fish not ant hills, so we survive as best we can without his help.

I know Mom and plenty of others know that God is very much a part of this world. I trust her, but my faith in God is less steadfast. I have trusted God and I still pray to get better, not to get worse, to watch over others, whatever. But I don't expect to be cured anymore or even not to get better, and no matter my prayers people are still hurt.

I know this is not new. I can search the Psalms for words like "abandoned" or "despair" and find something similar to what I am feeling. There were a lot of pissed-off Psalm writers around, especially the guy who wrote Psalm 88. He and I could trade notes, although I suspect he has it worse than I, sitting here in my heated condo, with an afghan Gram knitted on my lap, writing on a nice computer (even if it is a PC) and listening to iTunes.

"The Psalms give us a way to howl as well as to praise, permission to bewail the darkness, and permission to hold on to a vision of light," says religion professor Peter S. Hawkins.

I definitely howl. I praise and thank when it is due. I am a big bewailer, too. But holding a vision of the light? Not so much. I know I can: Permission is not an issue. But the visions don't come to pass – I don't walk or get the girl or even get to sit in the stupid lobby chairs. What good is it?