Thursday, September 29, 2011

Not with a bang but a whimper

Without any fanfare or official declarations, my legs have launched a full-scale war against my eyewear.

I mentioned the first engagement before, how my foot slipped and my face hit a grab bar at full speed. My glasses were the main casualty if you ignore the assault on my dignity. (Just look at the other post.)

Fortunately, my ally Target Optical came through for me. I had bought the extended warranty, and sure enough they just replaced the glasses, no problem. And I emerged victorious.

Last night was round 2.

I have been having trouble getting into bed many nights. I stand OK, but I am unable to pivot to the bed and often I fall. Not badly, I am holding a grab bar. My knees just buckle, then I usually manage to rise up and into bed.

This is made slightly less irritating because I will soon be in a lower bed and will be able to approach from a better angle.

But that did not matter last night. I stood, fell, tried to rise and did -- only to fall face-first on the grab bar, breaking my glasses again.

Once again Target Optical had my back, but we decided that I might want new frames since both pairs had broken in the same spot. It is still covered by the extended warranty, but because it is a new frame, they have to order it. I'll be wearing my old glasses for a week or so until the new ones come in.

That probably qualifies Round 2 as a draw.

Wednesday, September 28, 2011

Does the Hall of Justice have automatic doors?

I haven't mentioned much about my new building, not for any reason really. It's not like it is just a front for a clandestine, super-agent society that is interested in genetic manipulation to give humans powers far beyond those of normal people. Really.

Almost as good as being a secret lair, my building has automatic doors everywhere.

It is actually just a normal building, smaller than USA TODAY. This means there is only one men's room on each floor, with just two stalls. I have found the wheelchair stall filled a time or two, but unless we go to an Ally McBeal-style unisex bathroom, I am not sure there is any better option. And even if I do have to go to another floor, all the restrooms have automatic doors!

I do have to go to one end of the building to go up a ramp to the main door. It is not ideal, I guess, but what is. The automatic main doors make it worthwhile.

Monday, September 26, 2011

Stupid radiator

When I die, I am thinking bout donating my body to science because I really want to know how many bones I have broken in my body.

My right big toe might be the latest addition to the list, which already likely includes my nose, various ribs, my hip and maybe my coccyx.

Strength is not an issue for my legs. I could be a star kickboxer if strength was all you needed. Unfortunately for my fighting career, you also need a little thing called coordination.

Lack of coordination is also why when stretching my leg in bed this morning, I kicked a metal radiator at full strength.

It hurt!

I realize that there are a few hurdles to the donating my body to science plan. First, why would scientists X-ray me to see how many bones I broke?

They are more likely to check out my irascible stomach. When my nutritionist heard how long my stomach has been out of sorts, she said, "you should go as soon as you get an appt."

Second and maybe a bigger obstacle, I'd be dead. But at least my toe wouldn't hurt.

Sunday, September 25, 2011

Driving under the influence

As we were leaving my first swimming class in months (I did about a quarter mile!), a guy got out of a car, somehow got a wheelchair out of a rooftop carrier and went in to the rec center.

It was then that I remembered a recurring snippet of a dream I have. It is of me driving -- to work, to a store, wherever -- but I have no license, just my ID card.

As I said I have this dream over and over, but it's not like it could happen. I am not even allowed to use the riding mower around here. Pretty sure no one will let me drive a car.

The weird thing about the dream is that I know I have no license, and I do have Friedreich's ataxia.

Wednesday, September 21, 2011

Who's that girl?

Once again, I got to relish the spotlight solely as Claren's sidekick.

We had a meet-and-greet today with the director of the Fish and Wildlife Service. I have been looking forward to meeting him for a while.

After a brief intro, he threw it open for questions. No one had any right away, so he looks over at Claren: "Who's the dog?" In front of like 70 people.

I said Claren, but my voice carried nowhere, so someone else said who Claren and I are.

I did meet him officially after the meeting.

Monday, September 19, 2011


I have been in a wheelchair full time for 11 years. I have known I have Friedreich's ataxia for about 15 years. I have known I have an ataxia for more than 20 years. I have known I have something wrong for years before that.

When do you stop feeling mad about it? When do you stop feeling robbed or jilted? When do you stop looking for someone to blame? When do you stop feeling like some owes you big? When do you stop feeling guilty about needing help.

When do you stop wanting to cry or to sleep? When do you stop worrying about everything because FA touches almost everything? When do you stop wanting to walk, run or, hell, even laugh without coughing?

I want all those things but am no closer to any of them than I was years ago. In fact, I am further from them.

Saturday, September 17, 2011

Not too deep!

Apparently, mothers do not like to have their evenings interrupted by the words "It's not that deep, is it?"

At least Mom doesn't.

I was in the bathroom and I wobbled a bit as I stood to transfer back to my wheelchair. My head smacked into the wall, which was fine -- a little love pat, whatever. I'm hard-headed.

But then my head slid down the wall as I sat on my chair. Uh oh. The grab bar near the toilet is mounted onto a 1-4 length of wood that has nice pointy corners. And my head ran right into one.

I figured I was OK because when I put my hand up to feel for blood it came away clean ... at first. Then the blood started to trickle out, but it wasn't gushing.

Still, I figured I better ask Mom.

I got the answer right away, when she answered my question with her own: "What's not deep?" It couldn't be too bad if it wasn't noticeable, right? Apparently, though, Mom didn't feel so good about it. She told my sister that it was at this point that she wanted to throw up, but I was relieved.

I had missed Sarah Michelle Gellar's return to TV on Tuesday, the online version was not close captioned, and I didn't want to miss the encore presentation of Ringer last night while I sat in an ER.

When she saw the cut she grabbed some tissue and agreed it wasn't too deep. She kept asking what I was doing. It took some explaining, perhaps because whenever anyone asks this, my first, second and third responses tend to be sarcastic reminders that I have Friedreich's ataxia.

She cleaned it up and added a bandage (two generic terms in one post!). It's fine, and most importantly Ringer and SMG were great.

Thursday, September 15, 2011

Footplate of doom

The trick when you hurt yourself is to withstand the initial shock and urge to throw up.

The pain doesn't weaken, but I have found that if I can survive the initial jolt, I get a moment of clarity when I can figure out just how the heck to extricate myself.

Like the other night.

I ran over my foot, which should not really be possible but happens all too often to me because I stupidly don't use my footplate all the time. When I am going a short distance and transferring at the beginning and end of the journey, I often bypass the footplate. This is dumb. I know this.

Without my footplate, my feet easily get trapped under the front of the chair.

Like the other night.

Mom was running Claren out and I was on my way to the bathroom. My right foot got in the way of my chair and of course, the chair didn't care. It surged onto it, and only then did I manage to stop my chair.

The problem was my foot was stuck, pinned under the footplate, and I found myself leaning forward to take some of the pressure off.

There I was, foot underneath my chair, bent over at the waist so I was unable to back my chair off my foot -- Oh yeah, and in FREAKING PAIN!

But after the initial hurt, I realized what I needed to do. I could not sit up nor could I reach the wheelchair joystick. I needed that third arm or I needed Mom. "Help," I cried. She came and I was able to ask her to back the chair up. The foot's OK. And I am using my footplate a little more.

Tuesday, September 13, 2011

I really am lucky

My nephew kissed me good night when he left our house the other night. He never kisses me; I have no clue what motivated him.

Friday, September 9, 2011

Thanks, MetroAcccess, for wasting my afternoon

Several years ago, I read a story in the newspaper that talked about how odd it was that MetroAccess, the Washington area's para-transit service, required people with permanent disabilities to recertify every few years. As if we might get better.

A Metro official said at the time, "We are considering broader changes to the application and eligibility assessment process for the coming year." This was in May 2008.

Apparently, those changes did not involve removing the silly requirement that people who have MetroAccess and have permanent disabilities go in and answer the same type of questions the same way they did before.

Oh, but there were changes, to be sure. I had to go downtown for the process. They closed the more convenient office in Virginia.

My pickup window was 2-2:30 today, but because of all the rain I asked Mom to call and make sure it was still on. It was, but my window was now 2:15-2:45. Not sure when they planned to tell me this. Never, I guess, because I got no call from them until the ride showed up at work.

We got to the Metro office about 3 for my 3:30 appointment to get recertified.

On the way in, this woman said to me repeatedly, "God bless you for that dog." It seems like Claren is the one who is blessed for dealing with me. But whatever.

At the office, I was OK waiting. I had a book. It's a good thing it is a big book because I did not get in until about 4:15. I signed three papers, said what subway stations I use, got weighed (450 in my power chair) and got my photo taken for the ID, and then waited for my ride home.

We picked up another rider on the way home. That was cool. It seemed on the way home. Then I noticed we were right near my work again. "Huh," I thought, "I guess the other rider lives near my office." I was going home, not back to work -- this was confirmed.

Then we stopped in front of my building. I said I was supposed to go to another address, but told the driver to just let me out and I'd get home from there. I was so mad, but it wasn't the driver's fault and I hear too poorly to argue.

The subway was good -- the elevator was right there and the train seemed to be wait for me -- but then I got to my stop and pulled up to the elevator just as it opened and filled with people who were able to walk.

I left work about 2, got home about 6, was crabby all night, so thanks again, MetroAccess.

Wednesday, September 7, 2011

Mr. Matt Fantastic

A few years ago, a friend ad I discussed which superpower we wanted. After discarding the basics: flight, invisibility, strength, etc., we both decided on healing. I was even OK with just being able to heal others. I think it would be more interesting. We differed because she would heal people and they would not know it was hurt and I would shout it from the rooftops.

Before and after that, I have considered just about every power known to comic book writers. They would all be cool, and some, like Wolverine's invulnerability, Green Lantern's power ring or Spidey's ability to walk on walls, would be totally awesome.

Until this morning, though, I had never considered how handy it would be to be able to stretch like Mr. Fantastic, Plastic Man, Elongated Man and the like.

Nothing bad happened. I just reached for a grab bar and was like an inch short so I had to move to grab it. I did and transferred fine. No falling.

But I now want to be Mr. Fantastic, well, a stretchable Mr. Fantastic. I already am fantastic.

Monday, September 5, 2011

I am not a wimp

It is a good thing I am super-confident in my masculinity because I imagine there is nothing quite so emasculating as being rescued by your little sister and younger but bigger niece. Twice in the past few weeks.

The first time, Claren's water bowl got wedged under my power chair. One of the wheels did not touch the ground so I was stuck. They got me out of the chair and walked me to the couch. Then they lifted the chair up and took out the bowl.

Tonight, I was trying to take off my shoe and accidentally hit the joystick of the chair, which I had stupidly left on. My leg exerciser was in front of me, and I ran into that and wedged it between the footplate and a wheel. This time, I transferred on my own, but then Mom went next door and got the two Powerful Katrinkas, who made fun of me and then freed the exerciser.

No, sir, I do not at all feel like a big wuss.

Sunday, September 4, 2011

Happy to be in a wheelchair

This was not officially a ride. It was the wheelchair version
of a pig pile. But it was a happy experience.
Well, not quite.

I told someone recently that the best thing about a wheelchair is giving rides, and the more I thought about it, giving rides is the only happy thing about my chair.

Then I thought, maybe I am being too hard on the chair: It is, after all, a tool that allows me to work every day, to walk Claren, to interact with people on a daily basis.

It does all that and more, and I am often happy in it. But I am rarely happy because of it or because I am in it.

When I give rides, usually to nieces and nephews but also my little sister, I am energized by my chair. I revel in the power. It makes me happy.

Saturday, September 3, 2011

Not much help

My brother came up this weekend to help my brother-in-law on the new house. It is 10 p.m. When I got up at 9:30 a.m., they were out there. They are working on my room. Have I mentioned how muchI hate being in a wheelchair?

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