Tuesday, August 30, 2011

I want to choose

You know when it would be really nice to stand and walk (As opposed to all the other times)?

In the subway.

I had to let two trains pass me by today before managing to squeeze on the third.

My sister-in-law will no doubt think that I am exaggerating and that she could have gotten on. She would be wrong.

I saw people who could walk let the trains pass. The difference is they could have squeezed on the train if they chose. I had no choice.

The elevators were surprisingly good today. Normally people who can walk crowd in them because apparently it is easier than walking 20 yards. They do let me in, but it gets crowded.

Today, though, both elevators got there at the same time. I got on one, and the other was swarmed with walkers, but none got in my elevator. It was a little odd but sort of cool. It would have been better if the cute gal got on my elevator and professed her undying love for me. That would have been cool but all kinds of odd.

Sunday, August 28, 2011

"I hate my life" sorta

These words flew into my mind unbidden shortly after I whacked my face on the shower hardware this morning.

They are untrue, of course. Parts of my life, I know, are downright enviable. What else can you say about being able to nap for several hours in the afternoon on weekends? I could not ask for better family and friends. I am even lucky that my Friedreich's ataxia is not as bad as it might be.

None of that mattered, though, as I felt my face for blood (there was none) and sat back in my shower chair to gather my wits, which were scattered all around the shower and threatening to disappear down the drain. At that moment, I did hate my life.

I hated that I can't lean in a shower chair safely. I hated that I have to use a shower chair and can't stand in a shower and feel the water cascade down my body. I hated that I don't have three arms so I could steady myself, while the other hands held the handheld shower and the washcloth. (Just trying to lighten the mood.)

Saturday, August 27, 2011

Wheelchairs -- yea or nay?

I got up at 9:30, ate a new breakfast -- blended hot cereal -- brushed my teeth and went outside to ride my handtrike before Irene struck.

Too late. Drizzle started when I was still in my chair, and as the rain began to fall, the energy seeped out of me. I went back inside, read for a while, then napped till dinnertime mostly. Now, it is early but I feel like going to bed.

At some point, just before my nap started in earnest, my 8-year-old niece disappeared into the other room and came back sitting in and wheeling my manual chair.

She told me she had brought out my other chair, just in case I thought the wheelchair maybe belonged to some random person she saw on the street.

She then said, "I love this thing," as she wrestled to get it up a tricky threshold at Mom and Dad's.

A wheelchair is not so lovable when you are on the third floor of a building during an earthquake. No one quite knew what to do about me, or my officemate who uses sa chair. We finally just rode the elevator down fine.

It's not so cool when it rains either. Before the brunt of Irene, I went out this week to let Claren pee. It was just sort of spitting so I went myself. That soon turned into a downpour. My top was fine, but my thighs were soaked, sitting parallel to the ground as they do.

Fitting under tables -- not so cool either.

Visiting people who aren't in wheelchairs usually requires sacrifices.

Wheelchairs are easy to love unless you are stuck in one.

Monday, August 22, 2011

An exciting, but gross, fall

I haven't written about falling recently. Not, of course, because I haven't fallen. Friedreich's ataxia and all. Mostly, I just got bored writing: I fell and I got up again blah blah blah.

But today was a new one. I fell while going to the bathroom.

Before I left work at quitting time, I stopped by the restroom to make sure my bladder, which does not care about whether it is full or not, was not going to be a problem on the subway ride home.

I stood up before the toilet, started going, then just tipped over more or less in midstream.

I fell on Claren, but my clothes took most of the spray that did not stop just because I fell. One of my shoes got scuffed up, but I was OK and managed to pull myself back into my chair. I was able to hide the damp clothes by creative tucking and then I headed to the subway.

I long for boring falls.

P.S.: But I still exercised..

Saturday, August 20, 2011

Routines are everything

When one leaves a job, he doesn't just miss his friends. He also misses the rhythm of his job.

At least I do.

I used to get up and head straight to work. Now, I eat breakfast. I used to get home at 4:45 and let Claren play for a bit before dinner. Now, I get home at 5:30, and Claren is starving.

After feeding the Wonder Dog, I'd nap till dinner about 6:30. Now, I nap till dinner about 6:45 or 7.

All this shortens my time for everything. What is getting chopped out is exercise. Or at least it was.

I was telling a friend how lazy I had gotten, and I gave her a number of good reasons or so I thought:
"I am having tummy issues since the week I let USAT. Pretty sure it is nerves, changing routines, uncertainty or something like that. ... Also, I put off some exercise till we got in the new house and I had more room. But the move -- sometime next month for sure -- has been delayed so I just put it off. Finally, I think I am tired of exercising with nothing to show for it. It's not like if I work hard, one of these days I will run. I just won't get worse. I imagine lots of people don't see results, so I know I am not alone, I am just crabby. And I could start now but am still getting used to the new job routine."
She was much kinder in her response than I deserved. She just said "you're worth it" and"git 'er done." No "Suck it up, you big fat baby."

She was right, so even though I remain tired, crabby, unsettled and with a questionable stomach, I am exercising.

Sunday, August 14, 2011


I can't get the image of our dead hawk out of my mind.

I say "our," but it is not like we owned it. The bird, perhaps a red-tailed hawk, just frequented the neighborhood.

I think it got electrocuted by the electric wires.

I couldn't believe how big it was, lying there on the ground right next to a telephone pole on Pine Street. It looked like someone had just tipped over a bird from a taxidermist's shop -- beautiful, powerful, unharmed -- except it was lying on its back in the grass.

What struck me most were its legs. They were so big and strong-looking, and its talons seemed huge. Now, it was just powerless, dead.

I am not dead but know too well the feeling of powerlessness.

I was playing Life with my little niece and nephew, which meant I was sitting on the floor making an effort to play and they were running around yelling. Their parents were out back working on our new house.

I saw my nephew stop running and just stare out the back door. I asked what he was looking at and he just said some guy. I thought it must be someone working on the house, but then I saw shadows moving on the deck outside the door, so I yelled "hello" and "come in." I assumed it was a friend or something. Who else comes to a back door?

My niece came to stand with her brother by now. I shouted "come in" again, but instead he asked the kids where their parents were. My niece said out back and he left. I called my sister and told her someone was headed back there, still assuming it was a friend.

Nope. It was some guy who wanted to pave the driveway. And I sat there on the floor while my little relatives told some random guy that their parents weren't there.

I thought back to my time in North Carolina. I was still walking. Not well, but I was still walking.

A guy knocked at my door one day and asked if he could have a glass of water. It was hot and he said he was waiting for someone. He might have said he just got out of prison -- I lived in a less-than-ideal spot.

I did not want him to see how poorly I walked, figured that would be bad, but I wanted him to have some water. So I invited him and told him to get it himself. He did and then left. No problem.

I'd have been powerless if he did something, but at least I just endangered me. This time my powerlessness threatened part of my family.

Saturday, August 13, 2011

Metro gets its kicks from just driving me down

I took the subway home from work Friday,and well, it was not too cool.

I rode an elevator down to the mezzanine to show to the station manager my para-transit pass, which allows free trips.

He just pointed to another elevator to get to my train so I hit the down button for the elevator and waited.

It came and as I was getting on, I heard it say "going down." Now I know I hear poorly, but I am 95% that is what it said.

Instead, though, it went up.

When it got to the street level, I said to the people waiting, "I'm going down." Knowing that I also don't always speak loudly and clearly, I also pointed down. Maybe they thought I was making a crude joke because they made no move to get on. One said, that's all right. I repeated myself. Finally, I said,don't you want to get on? And someone else said, Oh, are you going down?

We rode back to the mezzanine where they all got off. I continued to train level.

Once there, I had to get through the gates. Not easy. I pushed one side back, then the other. But when I pushed the second back, the first extended and blocked me. I eventually got stuck. One of the sides also knocked the cover off the joystick, which rolled off somewhere. I backed up and tried again, sort of got stuck, then made it through. I spotted the joystick and Claren grabbed it.

Now, I just had to wait for a train. It came fast, actually, and I realized I was too close to the rear of the station. The train drove right past me.

Another was due in a few minutes so I went to the front of the station, got on the train, got home easily.

But nothing is ever really easy.

Wednesday, August 10, 2011

Almost there

I got some solutions to the manual wheelchair problem at a seating clinic today.

It seemed quite helpful. The PT put her hand down the back of the chair and then had me lean back. She realized that I am getting no back support till midway up my back. Not good.

We tried some lumbar supports, which did help. We also tried a wedge-shaped cushion -- lower in the back -- and that was a huge help. Mom was all proud because she had suggested a wedge cushion from the start. We also tested out a back that was a little taller and had a little more lateral support -- it really hugged me and helped keep me in place.

Now, the rehab place has to order the new hugging back and the cushion, and then I'll go get them.

But it seems like we finally have a handle on this thing.

I also may go back for some normal PT there. I liked the therapist, and she pointed out that it is a neuro-only rehab place so she has worked with people with Friedreich's ataxia before.

I am hoping to find something to strengthen my knees. Too often, when I transfer I lock my knees but when I unlock them, my knee gives out.

I have leg exercises I need to start doing regularly. I kind of put them off till I was in a new job in a new house. One is done and two will be soon, so no more delay.

Sunday, August 7, 2011

If an awesome tree falls in the forest, is it still awesome?

I know I am awesome and all that, but it is really hard to share that with people when you don't hear well.

I went to the main Interior building last week to get my pass. It was painless. We have a shuttle that takes us there and brings us back.

While waiting for the shuttle on the streets of D.C., a woman joined me and we had a nice little chat. Of course, I didn't understand a thing she said. First, I thought she said she was a recent hire, then I thought she said something about 7 years. She told me her name, but I did not catch it.

One of the things I liked about my old job was the comfort I took because people knew me. Even if I did not hear a question or answer or I ignored them, they still thought I was awesome.

But now, no one really knows me. And it gets harder and harder to show it as my hearing gets worse.

Friday, August 5, 2011

Not as smart as I think I am

I got two jobs today at work. The first one I didn't do for a long time because of a misunderstanding. The second one was a total failure.

All I had to do was post something on the website using their Content Entry (not Management) System. It looked easy. I played around with it earlier in the week, but I hadn't published anything or tried to. Until today.

I hit publish and got one error. I fixed it and published again. My fix caused another error. I fixed it and published again. Another error! This one I could not fix. No one who could help was around either. Eventually, someone else posted it, but I am still mad I couldn't.

Monday, August 1, 2011

I didn't go to work naked; it just seemed that way

When you have spent the last 12 years of your life in front of a computer, you feel a little bare without one. I am supposed to get one tomorrow so that will work.

The main thing: I survived!

Everyone was super-nice, and my friend there must have really talked me up. They were all telling me how excited they are I am there. Or maybe they are just really short-staffed. Or they just like having a dog on the floor.

It was good. I'll go back again tomorrow. Having an office is going to take some getting used to

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