Thursday, November 29, 2012

Cold already

I didn't make it do December before I had to start using foot warmers. I even bought a big case of them to be sure I have enough.

I wonder if the chill in the air is why I am feeling rotten these days. Not physically, just emotionally.

Tuesday, November 27, 2012

Never forget

Every so often -- despite using a chair full time for almost 14 years, despite almost daily falls, despite injuries to almost every body part in those falls -- despite all that, I forget that I am in a wheelchair, that I can't always go where others do.

It happened this week.

A friend invited me to a birthday party. 

I remembered she had a cat so Claren was going to get the night off. I arranged for another friend to drive me home.

It never occurred to me that she might live on a second floor garden-style condo … until she told me and asked how we could do this.

I wish I could be carried easily. I don't weigh too much, but the jolts are too much.

It makes me so sad and angry to mss the party for such a stupid reason.

Monday, November 26, 2012


One of my daily goals is not to fall.

I realize this is kind of silly because I have Friedreich's ataxia, and trying not to fall with FA is like trying not to breathe.

With the upheaval in the house these days with my brother-in-law's broken ankle, I am trying real hard not to fall, or at least not to need help to get up.

I slid to the floor in the bathroom this morning, and I tried to get up -- no luck. I put on my slippers so I wouldn't slip -- no luck. I slid to the right side of my chair so my phone was out of reach on the left arm of my chair.

Finally, I had Claren bark but it is a real challenge when we can't see each other, and the shower curtain blocked her, so she barked once.

No one came ... yet, so I slid around on the floor till I was able to stand and get back in my chair. Then my sister came to help. She had heard Claren, but thought the one bark was nothing.

So basically, I failed even though I did get up myself. I fell; I called for help. Ugh.

Sunday, November 25, 2012

I am the 1%, and it sucks

I was watching reruns of How I Met Your Mother, and one of the characters kept saying to a friend, "It's my job to cheer you up."

He then does it in a ridiculously extravagant way involving Christmas lights and  AC-DC.

I wish I had the light skills and a Highway to Hell mp3.

My brother-in-law has been hobbled by an injured ankle.  My sister is doing an awful lot, like putting up a light for me, and could, I believe, use a little cheering up. Actually, she'd probably rather have some help doing things but I am what I am.

I wish I could do more -- I hate that I must sit passively by and watch ones I love struggle ... especially when I know that if my goddamn body was like 99% of the population's, I could actually help.

So I sit around and try to make my brother-in-law laugh, make my sister smile, make my nephew and niece happy. It is so not enough.

I would give almost anything to help put up Christmas decorations, and I'd even substitute Bob Keeshan's Nutcracker for AC-DC.

Thursday, November 22, 2012

Making a call

I chatted with my oldest sister last night.

Not about anything important. I told her I ordered some shades (from SerenaShades, which my little sister saw in This Old House magazine). I told her I got some wall lights, though not the awesome dragon light I wanted. My older sister pointed out the dragon only took 40 watt lights, maybe too little.

It was just so cool to talk to her -- I used to pretty regularly but as my hearing faded I gave that up.

But I downloaded a free captioning app for my iPhone so I wanted to try it out.

It worked well, but actually I hardly needed it. I put on my headphones so I could hear her and read the screen, and the headphones made the difference. I just used the captions when I needed to double-check what she said -- like when she said to someone in her house "your nails and eyebrows look lovely." I wondered if that could be right because I thought her daughter was out. Did she really say that to her son? (Turns out my niece had come home.)

I may start calling people.

Tuesday, November 20, 2012

When she is good,she is very, very good; when she is bad, she's awesome

Since I got her, I have waited for Claren to mature and not act like every other dog wants to be her best friend. For her entire life, she has been like that high school cheerleader who also takes AP classes and is student council president and is sure you'll like her if you meet her.

Except now she's not. And it makes me sad.

Her favorite service dog in training came by the office a few weeks ago, and Claren played a little, then went back to sleep.

A goofy lab came running down from the neighbors the other day, and Claren merely tolerated him.

This friend brought in her Shih Tzu today and we took a break with the dogs outside. I released her, but Claren barely sniffed the other dog.

I said I was waiting for her to mature, but I was always so tickled to have "the party girl" as a partner. And I miss her puppy antics.

She still does her job and seems happy, loves putting on her vest and going to work.

And every once in a while she is her old lunatic self. That'll have to be enough.

Sunday, November 18, 2012

"Loser" captions well

Captions don't always work.

My boss was testifying on the Endangered Species Act and YouTube automatic captioning has him referring to the dunes sagebrush wizard, instead of the dunes sagebrush lizard.

I am happy to report that my caption phone, which my brother-in-law installed today, perfectly captured, "Matt is a loser."

Friday, November 16, 2012

The automatic door can't come soon enough

If this morning is any indication, we really need to get an automatic door, which we are getting.

When I leave in the morning, I ask someone to help me with the door and my niece or nephew complies. Today, though, the goofs had a contest to see who'd break and go open the door.

My niece, who has been on door duty all week, was giving her brother a real stink eye.

So I asked if it was my nephew's turn. My niece pointed out she had opened the door the past three days. I asked my nephew for help, and then my sister told him to help, and he did.

I'm supposed to be cool Uncle Matt. The last thing I want is to be a burden on the kids.

Wednesday, November 14, 2012

An accident waiting to happen

Let's be honest: I am always an accident waiting to happen. But it got worse when I went to the wheelchair place for some adjustments.

They were awesome. The joystick is lower and now goes under the sink. The suspension is better. My feet sit properly on the footrests.

It's the foot thing that just might kill me.

I have something called ankle huggers now. They are just what they sound like -- straps that attach my ankles to the chair. In other words, I have to unhook them before getting out of my hair.

This should be good.

Monday, November 12, 2012

Mike Brady is flier than I

I have never given Mike Brady enough credit for the dramatic jail break in Season 3's three-part Grand Canyon adventure.

Shockingly, I could not find a video of the scene, when the family -- jailed by a loony prospector -- string together shoelaces and belts, giving Mike something to throw to snag the jail key.

It is not that easy, at least it wasn't for me.

And I didn't have the pressure of being in jail and having my wife, family and housekeeper watching.

Mike Brady is fly.

I only had Claren watching, and she was probably asleep.

Everyone else was, hence my problem.

I was in my wheelchair so I could go watch The Walking Dead on the big screen, and because I was off today, I watched The Mentalist once I returned to my room. I stayed in my chair, but the light over the chaise was on and I could not reach the switch.

I did my best Mike Brady using a tape measure, and eventually I snagged it.

It was too hard, though, so tonight I took my grabber back from Mom and Dad.

Sunday, November 11, 2012

How do strippers keep their hands soft?

My hands are dry and calloused and cracked, especially on the inside at the base of my fingers.

Until Mom wondered why, I never thought about it, then it hit me: It is because I am constantly grabbing bars and poles.

Thanks again, Friedreich's ataxia.

Thursday, November 8, 2012

Getting inside Claren's head

One of my college-age nieces came over last night and played Sorry with my sister and nephew.

At one point, she told my nephew that she worked on Tim Kaine's Senate campaign. (Just to be clear, she had a real job, not an internship.) Then she said: "Know who else I worked for? Barak Obama."

My nephew's eyes bugged out and he fell back stiff onto the couch. Then he said "I need to get a drink of water" and walked off.

My sister asked me and my niece: Wouldn't you love to be in his head?

Well, yes, that would be fun -- I could find out lots about Wii -- but this morning I decided I'd rather be in Claren's head.

For the second day in a row, she has come into the bathroom while I have been showering and she has just watched me. I don't want to anthropomorphize her but it is almost like she is checking on me to make sure I don't fall.

Even if she isn't, she is still the coolest dog in the world,

Tuesday, November 6, 2012

Spam solution

You know all those spam emails that promise to make a certain male body part bigger? I am thinking about trying them.

Not for the ladies. Not a concern for one of the following reasons: a) I am as cool as possible with women and need no anatomic advantage, OR b) I can count on one hand the number of kisses I have received that were not familial in nature of from an insane drunk woman in the Greensboro airport.

No, my thinking has more to do with my fine motor skills. They suck, simply put. And it is easier to grab bigger things. I would no longer get lost in my pants and boxers as I try to get myself in position to pee.

I would also not fall over as I did in the bathroom at work today, well maybe. I think I just lost my handle on things and just sort of toppled, like a tree.

I managed after a bit to stand and get back to my chair.  I didn't get any help. One guy came in the bathroom, but he did not see a co-worker on the floor. Apparently.

So send the spam my way. What could go wrong.

Sunday, November 4, 2012

Man down

I knew the fall would be really bad, so I yelled "OH FUCK" as I was going down.

Depending on your point of view it was good or bad no one heard. Good that the little kids did not hear their uncle curse, bad because it meant no one was there to help.

I was showering before swimming and I had finished. my glasses fell, and I reached forward to grab them.

Bad move. I bent forward at the waist in my shower chair. I had my seat belt on, so my momentum took me down with the chair on top. On my way, I turned the water on, too.

The water ran down the drain red so I surmised pretty fast that yes, this was bad.

Unfortunately, I was stuck under my chair and belted to it.

I managed to get my legs out from under the chair, then I raised up on both hands like I was doing a pushup, and was able to undo my belt.

I turned off the water, which was no longer bloody, and managed to sit up.

I did not have a next move because my sister and her family were at hockey till 5, another two hours, and my phone was out in my room. I knew Mom would be over soon-ish, but that was too long to sit on the floor of the shower shivering.

At this point, my sister came in! The kids had events besides hockey so she left hockey with them early.

She called Mom and Dad, and they got me up, dressed and ice packed. My head wound wasn't too bad.

Now I just have to find an "I've fallen and I can't get up" thing to buy and try not to think about how I did not break my neck or anything real bad

At least no one heard me curse.

Saturday, November 3, 2012

Not remorse ... yet

I don't have buyer's remorse, but I am noticing some frustrating things about my chair.

i mentioned the height, but I realized today that it is wider and longer than my old chair. I thought it was supposed to be smaller. The width might explain why I keep hitting doorways on my way through them. They are actually going to redo the wheelchair stall at work because I keep hitting the walls as I go in.

The front casters also seem to be fixed and immoveable. This makes going up or down thresholds quite bumpy. I was pretty sure they are supposed to move, so I am not sure what the deal is.

It is more comfortable, my feet sit better, the swing-away arm is better, I like the tilt ... it is just ...

I am trying to get some answers from the wheelchair folks.

Thursday, November 1, 2012

No Next Day Blinds

I need blinds for my windows -- the sun shines in brightly when i telework.

I won't be getting them through Next Day Blinds, however. It's not just the price, although if I ever pay $4,000 for something, it better do more than block out sun.

Actually, the blinds they offered did do more. They were motorized.

I am hard-pressed to say what annoyed me more about the saleswoman who came out to talk to us.

She never talked to me, even though it was clear it was my money. I assume it was the whole disabled thing. I sympathize with her a bit because I tend to let Mom or my sister take questions when they are around, which they both were, because I hear poorly. But, she was talking about how great service dogs were, and I was answering her, but she talked to Mom. It was weird.

The other problem was that when I had the audacity to say $4,000 was too much, she shut down and basically just packed up. She had no interest in making something work for me. It was "here's the deal: Take it or leave it."

I'll stick with wearing a baseball cap. Cheaper and it doesn't care if I use a chair.

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