Thursday, May 31, 2012

The mark of FA

I love Zorro. The idea of the mighty hero hiding behind a wimpy alter ego is done lots, but it is always cool. And drawing a "Z" on his vanquished foes was so cool.

When I was younger, the two movies I would stay inside to watch on even a gorgeous day were Errol Flynn's Adventures of Robin Hood and Tyrone Power's The Mark of Zorro.

Actually, I stayed inside to watch many others, too, including the vastly underrated Empire of the Ants.

But I was thinking of Zorro this morning after my brother-in-law and sister hauled me up off the floor of the bathroom.

My sister did most of the hauling, while my brother-in-law lifted up my chair to free my trapped foot.

After I got in my chair, I glanced at my feet: Both had big red splotches on them from being victimized by my foul wheelchair.

The marks were not as cool as a carved "Z." I hope they don't last as long either.

Tuesday, May 29, 2012

The back is set

We seem to have a winner in the latest adjustment to my manual chair back. it did not pain me much the past few days. My back did get tired but nothing bad, and that should go away as I get used to the back.

So we will put that kind of back on the new power chair.

It'll still take a while, but we are getting there.

Monday, May 28, 2012

No help

A storm blew through last night right as Game of Thrones started, "blew" being the key word.

The wind ripped through the shade stand my brother-in-law set up during the day.

My sister was outside first, trying to save it,  followed by my brother-in-law.

I went to the door and asked if  I could help. I thought maybe I could hold something. Instead my sister asked me to call Mom and Dad's,  where our oldest brother was staying, and ask him to help.

I didn't even do that right. By the time I got my phone, they had it all under control.

I don't at all blame my sister for asking me to call for help. But it sort of felt like getting chosen last in gym  class. And believe me, I have plenty of experience with that.

It is a pretty rotten feeling to be no help in an emergency, unless said emergency requires lots of quips that I find hilarious but others might not.

Sunday, May 27, 2012

It's gotta be the shoes

The past two mornings I have fallen, both times right around a pole with aids handy. Neither time have I gotten help ... from a human that is.

On Saturday, I fell getting out of bed. I was annoyed but unhurt. I could not get my legs underneath me to stand up until I realized my shoes were right there. I put them on and got up OK.

This morning, I slipped in the bathroom. Again, I could not get my feet under me.

Claren to the rescue!!

She brought me my slippers and  I again got up fine.

I need shoes that I never take off.

Friday, May 25, 2012

Hit and wheel away

Another good moment from the wheelchair clinic: "What did you run into?" asked the therapist.

Everything, I laughed, and the wheelchair salesman, who uses a chair, laughed with me.

No, said the therapist, I mean here. She pointed at the left front of my chair.

Your caster is all bent and your fender is broken, she added.

I reiterate now: I run into everything, often with my left front.

Wednesday, May 23, 2012

Matty's got back

I was flipping through channels the other night and came on Legally Blonde.  I didn't watch long, but it was right as Reese demonstrates the "Bend and Snap" at the beauty salon.

Reese's perfect posture during the snap came back to me today during my wheelchair seating clinic today.

I have a manual chair with a high-tech back and seat cushion that hurts my back after a day of sitting in it.

After looking at me in it, the therapist  said that the reason probably was that they force me to sit very straight, and she mimicked Reese.

If I used it more than once in a while, she said, my muscles would probably get used to it and it would stop hurting.

By contrast, the low-tech back and cushion on my power chair offer no support and  leave me sitting like this, she said as she hunched up.

She did this at several points during the appointment, even after I told her she was making me feel bad.

I am sold on the high-tech back and cushion now, and not just because she kept telling me how good I looked in it.  I realize she was referring to posture, and well, it is all relative.

The plan is to use the manual for most of the weekend to see if the system gets more comfortable as I get used to it.

If it does, we will get the new system for a new power chair that is now officailly in the works.

Tuesday, May 22, 2012

So funny I almost died

I am surprised how often this happens: I lose my balance, grab something and steady myself, but am unable to move because my hands are too busy with the steadying part.

It just happens tonight with an amusing addition. I found my situation -- naked, just out of the shower -- funny.

I finally called my sister and she came and steadied me. I knew she would kill me if I fell because I was laughing.

Sunday, May 20, 2012


The  new exercise regime is already on life support.

I decided to exercise my legs twice a week for 30 minutes and then go swimming.

ButI haven't been able to swim for weeks.

Thursday, May 17, 2012

Never taking off

One thing that was awesome about my old job: It was very day to day, so if I went on vacation or wasn't there, nothing piled up. It just didn't get done and then it was the next day with new things to do.

After just a week in training, not on vacation, I am ready to never take off again.

This week has been frustratingly busy, and I have not been able to meet everyone's wants.

Monday, May 14, 2012

A vest doesn't make the service dog

A Facebook friend messaged me the other day, and I still am not sure what to make of it.

I asked my little sister if I should reply, and she said no, because nothing you say will be nice.

She's right, but honestly I am not sure niceness is called for. We worked together and we were friends, but this is not someone I see anymore. 

He told me that he had his dog certified as a service dog so that the dog would be able to stay with him in a temporary apartment. He admitted his dog was no Claren but said he is sure she would respond well to an emergency.

This person is not at all disabled.

I can only guess he was hoping I'd say OK, but here is what I'd like to say:

Dear XXX,
I really wish you hadn't done that. I was sure that anyone who had worked in the same office as a service dog would never try to pass off a pet dog as a service dog. I do understand the desire to have your dog with you. But Claren has been preparing for her life for 10 years, me for eight. Do you realize how you have made a mockery of us? And you do not even face a disability. I remember showing one of your daughters how Claren picked up things and pulled stuff. What exactly will your service dog do? I am actually not sure what Claren would do in an emergency, like me falling. That would require me to fall on purpose so as to teach her what to do. I imagine she would just lie down next to me, which may or may not help. But service dogs and their disabled companions have limits.

Saturday, May 12, 2012

I did survive

Claren meets a polar bear.
I dislike it when people I do not know call me an inspiration. I could be an axe murderer. It seems they think because  I live with a disability rather than off myself, I am heroic.

No one called me inspiring this past week on my first work trip, which was good because no one knew me that well. (Except my niece. She was probably inspired in the brief periods of time she was awake. HEE! I kid. She was a great helper.)

But I inspired myself. Here is some of what I dealt with:

To go on a trip when you are disabled makes me feel like one of those stereotypical women you see in movies who pack 50 suitcases for a long weekend. For four days, I filled a minivan. Power chair, shower chair, a bag of clothes, a bag with Claren's food, her bed, a bag with clorox and urinal, a bag for charger and computer, a bag with a poncho.

We got checked in OK and went to dinner. The cafeteria is on the second floor of a building and the one elevator was out. A kind woman took us all around Robin Hood's barn to get us to an entrance to the building on the cafeteria level. We had not even gotten our food before someone came and told us the elevator was fixed.

It was not an issue at that first dinner because the cafeteria was not crowded, but finding someone I knew to sit with did become an issue as the week went on more and more people came. A seated individual like me can't scope out where to sit.  Fortunately one of my bosses had brought her daughter who is too young to speak but would wave vigorously when she saw me. Also, sometimes I just sat alone with my niece -- it is not like I could hear much in a crowded cafeteria anyway. And actually, people usually joined us.

I almost died during my first shower  because I turned on the water, expecting it to come out the handheld, but instead it shot out the main showerhead. And it was cold. I bent over at the waist and could not sit up to turn the water to hot -- it was too cold. I was too embarrassed to call my niece for help so I sucked it up and sat up.

All the outer doors had automatic doors but none of the inner doors did. And some of the bathroom doors were tight fits. That was frustrating. More than once women held the door as I escaped a men's room.

More inspiring for me: The kindness of the people there, whether it was holding doors or busing my tray or filling me in when the captions weren't working.

The first day, the phones were down so our live caption plan got thrown for a loop. Eventually, they got a cell phone to work and that was how the captioner got the speech to caption. It was so-so. By Thursday, we had the right phones set up and it was better. Live captioning is not perfect -- it is hard to follow talks when just a few words get dropped. It is also tiring to read speeches all day.

So tiring that while I did go to the lounge after dinner several nights, I just stayed until it was too loud for me to hear. Then I went to my room, showered, got my niece to help me pull up my shorts and get me into bed, then fell asleep. Annoyingly, we found out that to open the pull-out couch where my niece slept you had to move the wheelchair away from the bed. Good thing we did not need to leave the room in a hurry.

Not hearing is really bad. It keeps me quiet because I don't want to just repeat things someone else said or say something off topic. But sometimes just sitting there feels even sillier.

But I survived, as I knew I would.

Sunday, May 6, 2012

A.J. Jacobs, you're killing me

I knew this would happen but I didn't think it would be the chapter celled The Butt.

The Lower Intestine chapter, sure. I thought maybe The Genitals because I'd learn how healthy all the sex I'm not having is. But The Butt?

I am reading A.J. Jacobs' new book: Drop Dead Healthy: One Man's Humble Quest for Bodily Perfection. It is awesome, as always. He makes me laugh out loud. His whole admission about Vitamin Water is great, especially because I always thought it was a silly drink.

And his wife remains the cutest woman in the world, though I don't think I have ever seen her picture.

Nevertheless, in The Butt chapter he says what I have long known: Sitting is gonna kill me. Our bodies aren't meant to sit all day, he points out.

But what about those of us who have no choice?

I better pay special attention to the other chapters because I am screwed with The Butt.

P.S. I leave tomorrow so may not write for  week.

Saturday, May 5, 2012

Be afraid

I awoke the other day with a song in my heart ... and I was super-pissed.

It was the morning after a bad night, and the song was the hymn Be Not Afraid.

The verse playing over and over in my head was the one about the Beatitudes:

Blessed are the poor, for the kingdom shall be theirs.
Blest are you that weep and mourn, for one day you shall laugh. 
And if wicked men insult and hate you, all because of me, blessed, blessed are you!

Now, I can't speak for the poor, but as someone who spends more time than he should mourning, I think, "Well duh?" At the same time, I think, "You are supposed to take care of me. I know I will be happy in heaven. Is that really all you are promising? You allow Friedreich's ataxia and other genetic diseases on this earth and make people struggle with them, and all you are saying is: 'It'll be better when you die'?"

Maybe Mordred was right: 'It's not the earth the meek inherit, it's the dirt."

Thursday, May 3, 2012

A helper

One of my college-age nieces is coming with me next week when I go to my workshop. I hope I will just need  her getting into and out of bed. But I know she will do whatever I need.

It'll be good. I am still more than a little nervous, but ...

Tuesday, May 1, 2012

Not as good as her

As we were on our way out for a walk this noontime, a woman asked how Claren was.

I gave her my standard line -- "She's always great" -- because, let's face it, dogs have a cushy life.

Then the woman asked how I was. I swallowed a laugh and just said "not as good as her," nodding at Claren.

I had laughed because I wondered if she wanted the truth. What if I told her that far too often these days, I feel like it is all too much.

Nothing in particular is especially overwhelming, but dealing with a disability is never-ending. And no matter how much help you get -- and I get a ton -- your disability is something you need to do yourself.

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