Saturday, March 31, 2012

No time for exercise

Normally when I turn on the water in the shower I do some leg exercises while it warms up. The exercises will not, to be sure, give me legs to be proud of. But they are a little something, which can't hurt. Today, I didn't do the exercises. It is not like they take any time, but I wanted to get outside with Claren fast. I promised myself I would do the exercises once I got outside, too. Of course, once I got outside and settled, I had no desire to exercise. I am not ever very comfortable, but sitting in the sun in the spring is comfortable. I didn't want to mess that up by stupid exercise. But I did use my pedal exerciser for 45 minutes tonight.

Thursday, March 29, 2012

This person, I like

I spend too much time with my head down, especially when I am out walking and really especially when it is sunny ... like today.

I was actually looking down the street today -- I did not have my head down. They were doing construction and I wanted to see if I could get by.

But I wasn't watching where I was going, and I heard this awful scrape and my chair kind of went thud.

I ran into a big hole in the grass next to the sidewalk.

Before I could even see if I was stuck, one of the flag guys on the road crew was asking me if I needed help. I said sure. He got a second member of the crew to come over and help me.

He pulled my chaIr out of the hole easy and went back to work.

Pretty nice.

Tuesday, March 27, 2012

Choosing the gun

I have been taking a speechwriting class over the past month, and the first speech the instructor showed us was called "Choosing the Gun" by the head of the Netherlands military. It is really wonderful.

Here is a transcription.

It makes me want to write something that good, which is all I was supposed to consider for the class.

But then I started thinking about what he said. I wish I lived in a place or a time when "being so close to this gun" made me feel uneasy.

I still see officers with weapons in the subway. I know they are making me safe, but I worry that we have all become to used to guns and there is little value in a gun as an instrument of peace..

Sunday, March 25, 2012

Trouble falling asleep

I could not sleep the other night, so I tried to name all 50 states.

It is hard to keep track if them when you are in bed and trying to fall asleep. I thought I had reached 50 when I came up with Tennessee, Kentucky and Wisconsin. But the next morning I remembered I had left out Colorado and Oregon.

I sometimes try to name superheroes starting with all letters of the alphabet, too, or Tolkien characters.

The problem here is I get too obsessed and an obsessed brain is not one that falls asleep easily.

Prayer is another good option. Saying simple prayers I have know since childhood is relaxing and repetition lulls me to sleep.  Usually. But it depends on the prayer.

Several times that night, I started the "Our Father," but each time I stopped. It doesn't feel right to pray to God.

I do not  blame God for giving me Friedreich's ataxia, but as the author of Where the Hell is God? put it, God does bear some responsibility for the world he created. God's world has so much beauty that we rightfully praise, but it also has ugly and unavoidable things that I think God needs to answer for. Things that have no human cause. Things like FA.

It feels disingenuous to blame God for something and in the next breath ask for his help. I realize that is what the psalmists often did, and I love some of those psalms. But I am not there yet.

I guess I have not forgiven God. I would like to, but I am not sure what it will take.

In the meantime, maybe I'll count sheep.

Friday, March 23, 2012

Matty's March Mayhem

I asked my sister to prepare a few things for me for tonight when no one else would be around.

I was pleasantly surprised when recounting them to her, I realized they were T-U-V.

I asked her to put the Keurig near the edge of the counter so I could make tea. I wanted my urinal near my chaise to prevent any urgency issues. And I needed my pill holder filled with vitamins.

When I got home, I remembered something else I should have requested, and I was really mad because it was a W. I wanted my window opened.

I felt the window was pretty important because it was warm today and I had to wheel home from the subway. Mom and Dad were away, too.

It is also important to consider that I may have been feeling a mite cocky. I didn't just wheel home; I wheeled home over the really steep hill that I really shouldn't have gone up. I wheeled backward most of the way up, which made me feel safe balance-wise, but driving backward up a hill without a rear-view mirror is a little sketchy.

But  I am sick to death of accommodating my Friedreich's ataxia, which may explain the evening's exercise.

I really wanted a window open.

Two of the windows in my room are casement windows, which crank. Only one is reachable. When we planned the room, my sister told me the two windows on the end would be casement. It wasn't till after they were in that I realized the two on the end meant the two on the width of the bump-out of my room. I thought it meant the two on the end of the length. Oh well.

I reached for the casement window. The crank was there on the sill but not attached. All I managed to do was knock over Goat Boy from Where the Wild Things Are.

Then I turned my sights to a regular window. I could get it, I told myself. So I moved Claren's bed and managed to unlock the window. But try as I might I could not budge it.

My pants were falling down from the repeated standing by this point, so I left off and went back to the casement window. I saw where the crank needed to go so I tried to sit down and access it. That failed, and I managed   to drag my boxer shorts down, too.

That was the last straw because my wheelchair has some sharpish bits that do not feel good on my delicate tushy.

I got back in my chair, pulled my pants up and went outside to see if I saw a neighbor. Kids often play in our yard and parents are usually nearby. Alas, no luck. Everyone must have been at the Falls Church School's March Mayhem event. It is a basketball game, even though mayhem is really not an appropriate synonym for madness.

I even considered posting on Faccebook "Anyone want to come over and open a window?" But I couldn't decide what would make me feel worse: No response, people who live far away saying they'd do it if ..., or if someone really came over and opened my window.

Instead, I headed back in and took another look at the window locks I undid. I was sure it was open, so I again convinced myself I could open it. Bad call.

As I was bending up after putting up my foot plate, I banged my head on the sill. I cursed God then. Loudly. I stood then but could still not budge the window. And this time I fell.

I was fine but getting off the floor is never easy. I finally made it to my chair and gave up. Now, I was really hot, but I just went and had dinner outside.

Thursday, March 22, 2012

Get that towel

Note to self: Don't squeeze towels into holder because when you need one you wind up spilling the holder, which also contains pills and lots of stuff.

When this happens, your $200 bottle of prescription pills might fly into the dog bowl. (It's childproof cap mostly kept the water out."

It also makes a lot of noise ...

Loud enough to make your sister come running in to ask if you are OK.

Loud enough to make your brother-in-law jump up (or so I was told).

And frankly, it is easier just to ask for help getting a towel.

Although who am I kidding? I don't fold my laundry and squeeze it into the holder.

Tuesday, March 20, 2012

Not that much help

I mentioned to Mom this workshop we are having for work, and she immediately started thinking of cousins who could be my traveling companion.

It is in West Virginia.

I am not planning on taking anyone. I don't anticipate it will be easy. It might even be stupid not to have help but it would feel worse to bring someone.

Sunday, March 18, 2012

Help hurts

Every so often, I like to pretend I am normal, not someone with a devastating disability. It never ends well.

Yesterday I pretended. Last night I had to disturb my sister at her first party in the new house to help me. She, of course, did ... without complaint.

I haven't been living with my sister's family for six months, and I hate my disability do  much more than i did.

Thursday, March 15, 2012

People are the problem

I am answering some disability-related questions for a friend's school project about the subway system. If I separate the paratransit system from the regular transit system, most of my problems are with people.

The system seems to work OK.

It is people who crowd the elevators instead of taking the stairs.

It is people who stand right near the subway doors and don't move to the center of the cars as instructed. The other night, I was waiting to get on a car and two guys just continued to stand at the door ... until I just barreled on. (That is one system problem: You can't board gently. You have to just power on to make it past the gaps and humps.)

It is also people who threaten to have their way with me and Claren, although to be fair that was just once.

The paratransit system is a special kind of evil, but the transit system is OK.

It's the people who make it rotten. (Well, except for the cute gal in the loose-fitting shirt who bent over to talk to Claren.)

Tuesday, March 13, 2012

I don't know why either

I don't smoke. Never have.

The closest I ever got was playing with some cigarettes Mrs. B left after a get-together at Mom and Dad's. Not even playing with them with matches.

I just remember looking at the tobacco as I ground the cigarettes out on Gram's back steps.

I always sort of wanted to smoke whenever I heard Simon and Garfunkel's America. I always liked the banter in the song: "Toss me a cigarette, I think there’s one in my raincoat"/"We smoked the last one an hour ago."

Lately, though, it is another line that gets me: "I’m empty and aching and I don’t know why." That's how I have been feeling on these glorious spring days.

I don't think cigarettes are the answer.

Monday, March 12, 2012

Not a handyman

I got a nice present at work. I got a caption telephone so I can work from home.

Now I have to get my brother-in-law to hook it up. He's so busy I hate that I can't do anything handyman-esque.

I know nobody expects me to be Bob Villa, but I would not mind being able to turn a screw.

Friday, March 9, 2012

Foreshadowing a fall

In my defense, the phone would not have helped at all.

My sister came into my room last night at 9:30 to take Claren and tell me she was going to bed.

She saw my phone on my bed and asked if I wanted it. I said no.

I had moved my chair away from my chaise so I could see the recovering Claren. My sister asked if I could get in my chair so far away. I assured I'd move it.

You probably think you know what happened next, but wait ... The foreshadowing is not complete.

I sit on the edge of my chaise -- at first so Claren could sit with me, then when she decided she preferred the bed, so I could keep my laptop and stuff on the chaise.

Finally, my allergies are acting up.

Now, you can guess.

I sneezed, and flipped off the chaise. My head was resting on a shelf I keep next to the chaise. My arms were pretty useless to help me recover because they were keeping me from falling more.

And the whole time I was chuckling, as in "boy, are you screwed" and "thank goodness, I am not hurt."

My sister came rushing in because I made so much noise. That made me laugh harder because I knew she'd think I tried to get to my chair without moving it. Also, I wanted her to know I was OK.

She got me back in my chair and everything was fine. She told me she knew this was going to happen. But this was a unique fall she could not have expected.

I mean even with all the foreshadowing, did you guess what happened?

Thursday, March 8, 2012


I wore jeans, a long-sleeve T-shirt and my Marvel Secret Wars T-shirt all day, but I still felt naked.

When I was  eating breakfast, no little companion joined me. When I bit into my apple at lunch, someone ears did not immediately perk up.

Claren spent the day at the vet. I dropped her off before 8 for a teeth-cleaning and multiple growth removal. The vet called about noon to say she was in recovery, and I picked her up at 4:30.

She is still so droopy -- she can hardly stand and has barely wagged her tail yet -- so I will probably feel nude again tomorrow.

Tuesday, March 6, 2012

Won't you help me please?

I am listening to Springsteen's Wrecking Ball tonight, but the song stuck in my head is from The River.

The singer in "Wreck on the Highway" comes upon a wreck on the highway. "I seen a young man lying by the side of the road/He cried Mister, won't you help me please."

In the next few lines, you learn he died, so he wasn't exactly lucky. But I am often envious of him.

He really needed help. Who is going to think a dying man is a jerk for asking for help?

But someone who asks for a cup of tea when the helper has a lot of other stuff to deal with? Well, the asker  himself might feel like a jerk.

Sunday, March 4, 2012

Too strong for my own good

The alarm went off this morning, and I rolled out of bed.

When my butt felt thin air, I realized I had rolled too far.

My hands were on my stripper pole, so I did not really fall, just sat down on the floor.

I pulled myself up standing twice, but it was like, now what? My feet were sliding this way and that so my legs couldn't support me. Even though I was upright, I could not get back into bed or into my chair.

Fortunately, my phone was right there and I called my sister.

She came and put my shoes on and helped me up. If I had even thought of putting on my shoes, I would not have had to call her. The shoes were easily accessible. Why didn't I think of it? What a waste.

And it stuck with me all day.

When I woke up at 11:15, I didn't want to get up and maybe fall again. I finally did, but it took all of my positive thinking. I didn't do anything all day, not even swimming.

Not that it helped. I still feel crummy.

Thursday, March 1, 2012

Lock-picking skills

If my speech-writing gig falls flat, I think I will become a bank robber.

I have seen The Town a few times and picked up tips there. Also, I know that good girls will fall for bank robbers even if they rob the bank where the girl works and then stalk her.

My wheelchair will handle the safes.

I am basing this on several recent run-ins in the bathroom at work. I have hit the big metal toilet paper holder with my chair. Each time, the locked box pops right open.

Safes can't be any harder, right?

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