Monday, December 31, 2012

Not this time, Homer

Some people will tell you The Simpsons is no good anymore. I disagree. Not an episode goes by that doesn't leave me laughing out loud ... and it almost killed me.

I saw an episode recently where the family visits the house Marge grew up in. The woman who lives there now invites them in and Marge says something like, Are you sure? The woman replies, As long as I don't have to feed this one, looking at Homer, who stage-whispers to Marge, 'Tell her no deal."

This little exchange had me rolling.

This morning, after I welcomed my sister home by waking her up to help me off the floor, I showered and was getting dressed. You can't wear a seat belt when getting dressed. Normally. that is fine. Normally, though, I don't think of Homer and his whispers.

Today I did.

Fortunately, I reached a bar and a shelf as I started falling out of my chair laughing.

Sunday, December 30, 2012

Don't get your hopes up

I have sort of been looking for a new handcycle, so a few months ago I asked my wheelchair guy if he sold any. He pointed me to AmTryke,  a company that sells them online.

I looked and got a little giddy: The company also sells foot-powered cycles and has a bunch of adaptive equipment that seems like it would enable me to ride again. Even better, they work with physical therapists to get you the right trike.

Since then, I have been in touch with the company trying to find a therapist. There are chapters nationwide, but none real near me. And the contacts at the evaluation sites sort of nearby were out of date. The company suggested I contact chapters to find a therapist.

I sent a bunch of emails out, and the chapter in southern Virginia answered and said they could help.

I am trying to keep my expectations low, but ... At least they'll hook me up with a better handcycle, right?

Wednesday, December 26, 2012

Sorry, polar bears

Whenever I am showering, I think of our director.

Wait, I better explain that real quick.

He tells a story about being on vacation with his extended family, and as he says:
Several years ago, my middle brother's wife was yelling at her teenage son for doing what teenage sons do, staying in the shower for about 40 minutes. After several episodes of yelling at him, she just screamed, "Matthew, polar bears are swimming in the Arctic because of you!"
He goes on to explain why the United States wants to prohibit commercial trade of polar bears, arguing that while a changing climate is the greatest threat to polar bears it is not the only one.

 Whenever I am in  the shower, I think about that story. I am damning polar bears to swim in the Arctic. Even my director's nephew's name is right.

But it is the Friedreich's ataxia really! I can't take fast showers, at least not if I hope to get clean. I could take cool showers, I suppose, but since I am cold most days this seems like a bad idea.

Maybe I could say, "I think of polar bears while showering," but really does that sound less weird?

Monday, December 24, 2012


I told Mom Thursday night that it is no fun coming home to a quiet house as I have been doing because my sister and family went to Maine for Christmas.

The next day I set about proving how dangerous it is, too. (Why is everything getting dangerous? )

Every day I have been alone I have had to call Mom for help.

The first day I fell shutting the door. I learned that bathroom tile is harder than slate because I smacked my forehead on the mudroom floor, but it wasn't as bad as when I fell in the shower. Technically it is my fault because I did not fasten my seat belt, thinking I'd be in my chair just briefly.

The next day I called her from the bathroom floor. I had showered and dried off and all. As I transferred to my chair, my knee nicked a piece of the chair and spasmed. Down I went. I called Mom and said, I am fine but might be on the floor when you come up. She just put my slippers on and then I was able to stand OK.

Last night was the worst. I was about to get on my chaise, so I wanted to empty my bladder first. I got to the bathroom in time, but slipped and wound up crouched in front of the toilet. I tried to get back up but succeeded only in trapping my leg between the transfer pole and the wall. Oh, and my bladder decided to empty itself while I was on the floor.

The real trouble was my phone was on the table by my chaise. I did not want to get into my chair since I was unclean. So I backed my chair up, then laid out on the floor and pulled myself using the chair toward the phone. I also pushed with my legs. I finally got to my table and could not reach the phone, so I pulled the table over until the phone slid off. Then I called Mom and suggested she bring Dad because there was a lot to do.

I am pretty sure that left to my own devices, I could have recovered from all of these falls. I had shoes on or nearby. I was near poles or something I could use to stand. But ...

I am guessing I won't fall tonight, in part because Dad is over here watching TV. Not sure if he or Mom thought that up. Can't really blame them.

Saturday, December 22, 2012

My Moby Dick, emphasis on dick

The Urinator went from really gross and annoying to somewhat dangerous Friday, and I am not sure what I am going to do.

I went to the bathroom Friday morning, and there was pee on the seat. I had to go, so going downstairs was not an option. Neither was going back to my office for Clorox wipes. So I wiped the pee off with toilet paper and sat down.

It was then that I noticed that he had left a little puddle of pee on the floor and my foot was in it.

When I was finished using the toilet, I learned that pee is kind of slick. I stood to clean myself off ... or tried to. My foot slid on the pee. Luckily I was holding on. I finally managed to clean myself and pull up my boxers. I then transferred to my chair and moved to a dry area to pull up my pants.

I talked to the woman in the office who uses a chair, and she said I have to tell people. I agreed, although I still doubt anything can be done.

I told my boss, and he gave me a harsher note he had already written based on this speech (transcript). It was quite good. He also suggested I talk to the building services manager.

He liked my boss's note but thought it went a little far. He promised, however, to do something.

Not fast enough, though. No new signs appeared yesterday, and every time I used the bathroom I had to clean the seat off.

Wednesday, December 19, 2012


Today marks the first day my back was not a significant pain. It also marks the day I admitted defeat at the hands of the Urinator. Well, not his hands exactly, rather his leaky penis.

Here is how I spent a good half-hour or more this morning:

  • Go to bathroom on our floor.
  • Shut stall door.
  • See pee all over back of seat and paper towels all over floor of stall.
  • Leave bathroom.
  • Return to office an get Claren.
  • Go to elevator and get on car that said up but really went down, so I went from 3 to 1.
  • Get off at 2 and go to bathroom on floor.
  • Barrel through door because button was broken.
  • Go to bathroom.
  • Wait for other bathroom user to help  me leave since button was broken.
  • Return to my floor.
  • Tell building manager about the messiness.
  • Return to office.

And that wasn't the end. There was goddamned pee all over in the afternoon.

I am seriously considering standing at the toilet from now on, just waiting to fall and bleed. Then I take a photo, put it in the stall and say: "Clean your pee; don't make me bleed."

Not that that would work. I don't think anything will, short of me falling and dying. But if I am deadm who cares if he pees?

Monday, December 17, 2012

Christmas is a-coming

Without a totally irresponsible but totally awesome action figure shopping spree, this will be the first year in many that I have fewer figures now than I did at the beginning of the year. Not only that, but I think this year may go down in Matt Trott history as the first year in many I have not added any figures to my collection. (Not really, I'll buy something between Christmas and New Year's if need be.)

I am still able to set up a Nativity, though I know there are a few repeats. Mom, my photographer, saved me from a humiliating faux-paus earlier when she saw Plastic Man and said, Wasn't he in last year's? I looked and was horrified to see Plas and Beast were duplicates. I quickly removed them.

The  Big Three are there, though without their Peanuts understudies. Charlie Brown, Lucy and Woodstock are going to work to help me win the festive door/office contest.

Yes, that is Speed Racer and his Mach 5 ready to spirit Jesus away to Egypt and out of the way of Herod. Spritle and Chim-Chim are in the trunk of the Mach 5 to facilitate the Jesus transfer. They also have a picnic basket in case anyone gets hungry. And let's face it: Everything is better with a monkey.

If they decide not to flee toEgypt, Batman will ward off any of Herod's soldiers. I'm not saying he could beat the whole army, but ... This figure also makes me think of a lounge singer, like he is holding a mike and just belting out a tune. So, lullabies are taken care of.

The Humble-Bumble and Yukon Cornelius are not new figures -- my older sister gave them to me years ago -- but this is the first year out of the box. My niece has a nice but totally unsupported  theory on the Bumble. She said he was just mean because he had a toothache and once Hermey pulled his teeth, he was good. A lovely idea, but I believe the Bumble was a bully a la Buddy Hinton. And when he is defanged, like Buddy, he becomes OK.

Santa is another regular but he doesn't quite merit Big Three status.

The Canadian Mountie would help Batman.

The Rocketeer is one of my favorite superheroes, not just because Jennifer Connelly is his girlfriend. And who better to serve as an angel and to go tell it on the mountain.

The Spirit was created by Will Eisner and he wrote wonderful stories. There was a story called like "What's 15 minutes in a man's life?" and it has a clock in each panel. This guy robs his employer, kills him by mistake, flees, sees the Spirit (the Spirit's only appearance), panics and gets killed running away even though the Spirit did not know he did anything. It is way cool.

Mom claims that Baby Jesus would be scared by my Gorilla Grodd knockoff. But the animals in the manger wer super-intelligent animals like Grodd if stories can be believed. Maybe they weren't super-villains like Grodd.

Last but not least is a little wind-up robot, who is in charge of teaching the Lord to dance.

Here are the ones from 2007,  200820092010 and 2011. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Sunday, December 16, 2012

Back to my old chair

I am back in my old wheelchair because of my back.

The new wheelchair offers my back a lot of support but forces it straight. That is good but I don't think my back needs to be straight. It needs to slouch into whatever shape feels good ... at least until whatever  I did to it improves.

This means I need to work from home because my old chair is shorter than my new one.

 At least my back is feeling better.

Wednesday, December 12, 2012

Saint Bond, James Bond

I always liked James Bond, both books and movies, but I never considered him a saint ... until last night.

My back has been bothering me for a while. It is not excruciating, but it is pretty debilitating. Bending over, stretching, transferring -- anything can cause a twinge, which in turn can cause issues.

The doctor, well nurse practitioner, said she thought it was muscular and hypothesized that my new chair has been bothering my back since I got it and that my back "finally said enough."

I suspect the pain is chair-related, but I am not sure the back is wrong for me. Unfortunately, my wheelchair person is out till next year, which I realize is only a few weeks but still is longer than I want to be in pain.

Which brings us back to Bond.

I sat down last night in my chaise and watched Casino Royale  and when it was over, my back didn't hurt.

It hurt again today, so 007 is not perfect but not bad.

Monday, December 10, 2012


My boss agree some people there are slobs and suggested something harsher.

The head of building services just laughed and put it up.

Sunday, December 9, 2012


My older sister was in town last week and said she was glad not to have to think about fingers for a day -- although she probably was. Her husband broke his finger just after Thanksgiving, so they are thinking about fingers a lot.

She then said that several years ago, when he was going through a real brutal and successful cancer treatment, she had to go out of town and told him that she felt guilty she felt relieved to not have to deal with cancer for a bit.

He replied that she should not feel guilty, he wished he could leave himself.

I wish that almost every day.

Friday, December 7, 2012

The note goes up Monday

If you get urine on the seat of the toilet, please clean it off or contact maintenance. Thanks.

I was ready to post this note in the wheelchair stall at work earlier this week, but things got too busy. It's been an issue since October or earlier.

This afternoon, I regretted not posting. There was pee on the seat, I stood, I fell, I got back to my chair OK, I get ready to pee standing up again, I took a little too long, and I had to get help to change my pants when I got home.

I am still embarrassed that I have to put up this note, and it makes me feel like I am being unreasonable. I know I am not, but having to ask adults not to do something they should know not to do makes me feel a bit silly.

I am also trying to avoid adding anything snarky, including but not limited to the following:
  • Because not all of us can stand, asshole.
  • Thanks to your pee, I fell the other day, jerkwad.
  • It's a wheelchair stall, not a stall for slobs.

Wednesday, December 5, 2012

Slip-sliding away

Today I paid a woman to touch me in places that have not been touched in years, if ever. I got a massage. It was awesome.

The massage itself was awesome; slipping off the table as I was getting up and sliding to the floor was less awesome. It was pretty funny -- I never thought someone would say to me "you're too slippery" -- but not so awesome.

The masseuse helped me get on the table, took off my shoes, pants and shirt and massaged me good, put my pants and shoes on, but then I swung my legs off the table.

My feet hit my chair and stayed on the seat. Then my butt started slipping off the table and next thing I knew I was on the floor.

The masseuse was a small woman and she started freaking out -- maybe because I kept laughing. She kept trying to help me up, but the soles of my feet weren't on the floor. Plus, I was slippery.

She kept opening the door and calling for another masseuse, but he didn't hear, I guess.

Eventually, she put one of my feet on the floor sole-down, stepped on it to keep it that way and heaved me up. Doing my part, I lunged into the chair.

She tried not to charge me because of the fall, but hell if a fall meant I didn't have to pay, I'd be real rich.

Sunday, December 2, 2012


Even on moderately good days, I am frustrated by minor aches that serve to leave me grouchy.

My right shoulder has been bothering me off and on for years. My lower back is sore, maybe from using my chair more than usual. My hands are chapped. ...

Just annoying.

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.

Tuesday, October 30, 2012

Swimming is fun

My swimming teacher had some words for me about my post about how I don't like how I look swimming. She was not a fan of that post.

She pointed out that I have come awful far in just a few years -- from not swimming at all to swimming mostly on my own, albeit gangly, for nearly a quarter-mile every Sunday.

I've even surprised her, she said. She did not think I'd ever swim.

So who cares how I look. I enjoy it. I feel good afterward. My dream of quashing Michael Phelps will have to remain a dream ... unless I see him on the street and run him over in my new kickass chair.

Saturday, October 27, 2012

My new ride

The coolest feature of my new Invacare wheelchair is actually not part of the chair at all. It is a handy accessory that plugs into the battery port and offers both a headlight and a USB port.

The wheelchair guy threw it in because it is cool and he uses one. He probably was feeling generous because my chair cost more than a new low-end Honda Civic. I am not paying for it all, just saying -- wheelchairs aren't cheap.

I never felt particularly bad in my old chair, so it is astonishing how good I feel in this one. It has a special back with lots of curves and lateral supports and a curved cushion. They both make me sit up so straight. I love it. A friend at work said I look so much better.

It also has a real chest restraint that is more comfy than the Batman belt.

And the swing-away arm actually swings away! It sits almost next to the arm rest when swung away. Even straight, it is still behind my knees.

The only issue is height. I am a lot taller. I an no longer sit at the dining room table to eat. I need to use a tray. That's fine. Less cool is that I no longer fit under my sink. I can get pretty close but no longer all the way under.

All in all, though, I am happy.

Thursday, October 25, 2012

Pissed off

I had planned to spend this post talking about my cool new wheelchair, and it is cool. I got an accessory with it that has both a headlight and a USB port.

But I had a lot of issues today.

First, I dropped my mouse into Claren's water bowl. This is the second one I've dropped. It seemed to work fine mostly, but then later it died. Its death is significant later on, so remember it.

Then I went out at lunch for a walk. Claren pooped, and I thought I heard someone say, "I'll get that." But I looked around and saw no one. Then this woman walked up with a dog. She said she is a dog walker so she picks up poop all day. And she picked it up and went her way.

I came back and started to eat lunch. In the middle, I had to go to the bathroom. No problem, I thought. I stood at the toilet and proceeded to pee all over the front of my pants. Lovely.

I went back to my office, got a towel I keep there for Claren, draped it over my legs and was going to just suck it up.

But my mouse died. And it is to hard to use the Mouse Keys for more than a few minutes. So I called Mom and she came and got me. I got home. Mom helped me change and then I began to work from home.

It all turned out fine, I guess, but it's really annoying.

Monday, October 22, 2012

Let down

I tried, I really did. But my ankles failed me, time and again.

I was on the floor in the bathroom at work. I had slipped to the ground, was not hurt at all, had plenty of bars to grab. But I could not get up. Every time I pulled myself up, my ankles did not bend to keep my feet on the ground.

I tried so hard: My arms ached, my mouth was dry, my heart pounded. But I could not get up.

Finally, someone came in and I asked him to help me. He did.

Then I went back to work.

I tried so hard and I failed.

Saturday, October 20, 2012

Wii all night!

I am putting my niece and nephew to bed tonight -- they're parents and Mom and Dad are going out.

This is a first for me.

I have watched them before and been in the house alone with them although usually I am asleep during afternoon naps  when that happens.

Also, it is never really clear who is baby-sitting who when that happens. Last time, my sister went out, she told her kids  I was in my room. I yelled out, "I am losing my eyes but let me know if you need anything."

My niece, 9 going on 42, hollered back, "OK, you too."

I wish I felt better about it. I am not worried or anything. Claren is just feeling puny because she had some surgery to drain an aural hematoma yesterday, and she makes me feel less than tiptop.

But we're allowed to stay up till 10!

Thursday, October 18, 2012

I'm never moving to the West Coast

I have been through one earthquake that I know of. I am counting on there being another during my life.

Work isn't so sure. They scheduled a Shake-Out drill today and made a point to give us chair users special instructions: Stay in your chair, get away from windows, bend over if possible, cover your head and hold on.

I wasn't sure how to cover my head and hold on, but as I told one of the supervisors that asked if I needed help, I am a pro at duck and cover. So I was all set for the drill.

I waited and waited. Then someone stopped by my office and asked how I liked the drill.

I totally didn't hear the alarm. I am doomed.

Tuesday, October 16, 2012

Pushing a purse

Nothing like a ride on the subway to put me in a crap mood.

It was quite unexpected.

I got on a train with seats available and where no one was standing .. except at the door I went in.

There at least 10 people stood around, only grudgingly letting me on.

At West Falls Church, I got off the train and called the elevator. I was the first one on. Five or six others got on, including a kid who did not need to use the elevator and a woman with a big purse.

The purse started to nudge my joystick and I started jerking. I pushed the purse away, and the woman looked at me as if I had felt her up.

Then everyone hurried off the elevator, leaving the door to close on me.

Fun fun fun.

Sunday, October 14, 2012

St. Anthony knows how to answer a prayer

St. Anthony is starting to make the others I pray to look bad.

I pray to Matthew, Edward, Mary, Jesus, God, everyone to get better, to not get worse, to not fall.

I fall; I get worse; no cure comes.

I ask St. Anthony to help me find something, and it turns up.

Like today.

I went for a walk on the bike trail to see how long my weekly trike ride is (my chair keeps track of mileage). While walking, it occurred to me to look for an ear piece that fell off my glasses yesterday during the ride. I knew the general area that I lost it after all.

I scoured the area as I walked up the trail. I gave it up for lost, but as I turned I asked St. Anthony to "please come around; something is lost that must be found." Before I went a few feet, I saw the ear piece.

God could learn a few lessons if you ask me.

Thursday, October 11, 2012

Still alive

No one who has Friedreich's ataxia can really say he is lucky.

You have struck out from the very moment of conception, managing to get the bad gene from both your mother and your father.

But I am lucky. Family and friends, sure. A good job, oh yeah. 

Actually, though, tonight I am thinking that I am lucky to be sitting at my computer instead of lying in a hospital.

I went for a walk tonight without Mom, so I was cruising along in the dark with my lights on. I was getting ready to cross a street when a car on the street I was on turned on its lights. Maybe that threw me. All I know is that I rammed the opposite curb with my chair. Actually, I hit a sewer opening in the curb and my chair leaned perilously close to tipping over. Somehow it didn't. 

So, I just came home and tried not to throw up at how close I came to hurting myself.

Tuesday, October 9, 2012

Nothing to see here

My friend and co-worker who uses a wheelchair was back at work today.

She stopped by to tell me that somebody had told her about my fall last week when she wasn't there.

As I told her, the fall was nothing, the real news is it took people at work a year to see me fall. You'll notice I didn't say "a year to fall at work." I have fallen before at work ... in the bathroom. So there.

Sunday, October 7, 2012

Oh well

I have been swimming for a little more than three years.

I know I am no Michael Phelps, but I assume that I look somewhat cool in the water. Make that "assumed."

My teacher had her iPad and she taped me doing the regular backstroke. This stroke always feels moderately good, so I like doing it and figured I looked sort of normal doing it. Notice I used the passt tense.

I look as if I am drowning in the ideo. My legs are deadweight, floating just under the surface. And the strokes are not controlled and look pathetic.

Thursday, October 4, 2012

No pee! But ...

Today was the first day this week that the urinator did not soil the toilet seat of the wheelchair toilet!

But the day also saw my first tumble onto the floor under my desk at work, into Claren's water bowl. So, I am not sure whether it was a good day, despite it pee-freeness.

I was getting ready to go to a meeting when I leaned forward to grab something on my desk.

I almost immediately realized my seat belt was not buckled. I don't know why. Maybe I forgot to do it when I left the bathroom although it seems unlikely. Maybe it just failed, which given the history of this POS wheelchair seems likely.

I did not have the strength or balance to lean back once I started leaning forward, so I let myself fall to my desk, hoping I could catch myself there. I managed to put my head on my desk but only for a few seconds. Then I fell to the floor and put my arm in Claren's water bowl.

I wasn't hurt and quickly moved to stand. A co-worker happened by at that point, and saw me.  I asked her to grab a co-worker to help me. She did. But she also told like everyone in the office. Another guy came to help. My boss came. An HR woman stopped by several times to make sure I was OK.

OK, yes. Humiliated, that, too.

Tuesday, October 2, 2012

Don't start

Have you ever really felt like crying -- maybe even started to tear up -- but were afraid that if you started, you would never stop?

It was not a great day, shall we say?

Shortly after I got to work, ants started dancing across the bottoms of my feet. OK, maybe they weren't real ants but my legs were still jumping all over the place in an effort to dislodge the ants. I took some Advil, which normally helps my restless legs, but it was about two hours before they settled down.

Then I was OK for a few hours, ignoring a normally hectic schedule.

I went to the bathroom at some point to find someone peed all over the toilet seat again. This is not unique to my workplace either. It happened at my last job, too. Apparently, adult guys choose to treat work restrooms with no respect. And how do you leave a note that doesn't sound snarky? I don't think it is possible because you are asking grown-ups not to behave like toddlers.

About 2, I got a phone call and backed up my chair to see the caption screen on the phone, and my keyboard tray snagged on my pants and pulled completely out. So it crashed to the floor, followed by my laptop. A co-worker tried to help, but she was telling me to leave everything, which was not helpful because I was holding my laptop, and I wasn't about to leave it hanging by the cords.

It was just so humiliating.

Finally, I decided I really can't go on our work retreat next week because it would require me to get up at like 5, and I can't do that.

So now you see why I might never stop crying.

Monday, October 1, 2012

Don't fear the urinal, please

One of the gents in my office apparently eschews the urinal.

Hey, that's cool. Different strokes for different folks and all that.

But ... said eschewer also does not care to raise the toilet seat when he pees, and that is not cool.

I went to the bathroom today, saw liquid on the toilet seat so I went back to my office, got a Clorox wipe out of my desk, went back to the bathroom and cleaned the toilet.

Then I used the toilet and things were fine. I was back in my chair with the wipe in my left hand. I bent to my left to flush lost my balance, the wipe and hand were headed for the toilet. I jerked to the right, which saved my hand from a watery grave, but my face and glasses smushed against the stall wall and the wipe splashed water on my face.

SO ...

I had to go to the optometrist to straighten my glasses and I am now waiting for some crazy flesh-eating bacteria on my face.   Fun afternoon.

Saturday, September 29, 2012


I can't decide if this makes me real pathetic or not

I got up a bit earlier than normal for a Saturday, had breakfast, went for a ride on my handcycle, oversaw the washing of Claren, had lunch, then napped till 5, watched TV and played Wii until now.

The three-hour nap is what I am not sure about.

Wednesday, September 26, 2012

Don't squeeze the Matty

When the elevator at the West Falls Church Metro station breaks between when I get a message telling me the elevator is OK and when I get there, I ride to the next station. The elevator at the Dunn Loring station is ridiculously out of the way. You have to go to the front of the platform, beyond where the train stops, right next to a caution sign. ...

And I love it!

No one just hops on that elevator to save a few seconds. The only people who use it are ones who actually need it. ...

Unlike, say, the other day at West Falls Church, when I got to an elevator almost packed with ambulatory people. They made room for me and I got on. Then another guy squeezed on behind me.

I again learned that it is not cool to be in a chair with a service dog and be squished into an elevator.

For one thing, no matter how good your service dog is, if her head is jammed into someone's crotch, she's gonna sniff. And if you forcibly remove her head from said crotch and point her nose to the ground, she might then start to sniff the person's toes that are sticking out of sandals.

For another thing, people's sports coats can get tangled on wheelchair controls and cause problems.

Maybe I should go to the farther station all the time.

Monday, September 24, 2012


My life looks nothing like what I imagined when I was young and did not know I had genes that would go on to F--- me up.

I always assumed I'd be married with kids, not living with my little sister (whom I never imagined I'd get along with).

I aso never thought I'd have to worry about sitting on my hand.

But there I was this afternoon, on my chaise, trying to make a fist and wondering if I had just broken my hand by sitting on it. (I didn't.)

Sunday, September 23, 2012

Not my bag, baby

We had a block party yesterday.

I stayed long enough to have a hot dog and a cookie.

So many things are aligned against me as far as block parties go, I guess I am glad I made it 45 minutes.

First things first: I hear poorly. And with noise in the background, I hear worse than poorly. Few people are at my level either.

But perhaps, worst of all: I am not a parent.

So I went home and watched Doctor Who.

Thursday, September 20, 2012

The floor isn't so bad

I fell this morning, but that's not what worries me.

It was an easy fall. My feet just slid out from under me when I was transferring to the shower chair. I was holding on securely so I just sort of floated down to the floor.

I made a few half-hearted attempts to stand, but my feet kept slipping.  And honestly, I didn't really care that I was on the floor. Maybe I was still half-asleep, but I just had no desire to recover.

I called my sister. She didn't answer -- she was in the shower. I figured my brother-in-law was downstairs, but could not work up the effort to call him. I tried again to stand and grabbed my slipper, planning to put it on. That didn't pan out.

Finally, I called Claren over and was getting ready to have her bark when my sister appeared. She saw I called and was checking on me. She got my brother-in-law and he helped me up.

Otherwise I might still be on the floor, and I might not care.

Wednesday, September 19, 2012

The Mattman's utility belt

When I decided I needed something to prevent me from coughing and chipping furniture, I had a few options on hand.

I quickly discarded the Darth Vader and Boba Fett masks because I could not wear my glasses. This raises the question: Is everyone's eyesight perfect in the Star Wars universe? Or perhaps they all wear contacts? Or maybe, all the helmets have eye pieces personalized for the wearer? That would be cool.

I also had to put aside the 970s' Washington Redskins helmet. As you can see, it did not fit too well. It also did not go on my head easily.

My decision to go with a Batman seatbelt may have been met with ridicule, but as you can see here: It is awesome! And it does the job quite well. Thanks to my nephew for taking the photos.

Sunday, September 16, 2012

Seatbelt on order

I told my sister tonight that I ordered a seatbelt and talked with Dad about how we can attach it so it holds the top of me in place.

I thought she'd be happy -- she's a big fan of a shoulder restraint.

Instead, she was all, What do you mean ordered? From where?

I said Amazon, and she replied, That's what worries me.

And then when she found out that the seatbelt has the emblem of a certain Caped Crusader, she yelled: Matthew, you're 42.

Leaving aside the fact that I am just 41, I'm still confused.

I am acquiescing to a restraint I have resisted for years. I see no way to make a seatbelt across my chest unnoticeable or not obvious. Why not have some fun with it?

Thursday, September 13, 2012

Can you keep a secret?

I don't really want to tell my brother-in-law the builder about the gash I put in my desk (at left).

I don't really want to tell my dentist either. But if my tooth doesn't stop hurting where I banged it into the desk, I will have to.

I also don't want to tell the therapist and wheelchair salesman because they would likely suggest some type of chest restraint. I suppose that might be a wise idea, but it just seems so restricting.

My family will also support the restraint, so I don't want to tell them.

So don't tell.

Wednesday, September 12, 2012

Exuberant I have not been

I have decided I am going to live vicariously through my 9-year-old niece.

This may sound a little odd, but I think she will try every extracurricular activity she finds. It is so exciting ... for me at least. Her parents are probably run ragged.

But her exuberance is contagious. It was band tonight -- Mom said she wanted to try four instruments.

I'm not sure I was ever exuberant, but I am trying.

Sunday, September 9, 2012

Crappiness pays off

I accept that I broke my wheelchair's controller arm and therefore deserve some blame, but who designs a wheelchair so the weakest part sticks way out alone in front of even your knees and even swung-away sticks out farther than the wheelchair seat?

If one loses one's balance and grabs for help to prevent a fall, one might be expected to grab the piece that sticks out. And if one had poor fine motor skills, the piece out front might get hit a bit more than usual. And if it tilts up, this out-alone piece might tend to ride up counters and other immoveable objects. But I am not a wheelchair designer ... at least not like the people at Pride.

I realize that all these potential problems should, of course, be of no consequence to most wheelchair users. Having the balance of an Olympic gymnast, they never fall. They have the fine motor skills of a concert  pianist so never have steering issues, either.

I do, though.

And my chair's controller arm has broken -- I have the pieces to prove it.

This has paid off several times when I or Dad has been able to fix a break by swapping parts out.

This time we had even more luck than normal.

The controller itself died a while back, and the repair shop switched the whole arm out. They also gave me the old arm.So Dad just swapped arms. Works again. Thank goodness, it has been so bad I have had to replace it often.

Friday, September 7, 2012

Another wheelchair fail

I noticed as I was sitting in my chaise tonight that the controller arm was swinging way to the outside.

Sure enough, it has broken. A screw sheered in half, with part still in the controller.

It is not too shocking really. This same thing has happened three or four times in the past. The person I am working with to get a new chair specifically ordered a controller that isn't this poorly designed.

But the new chair is a ways away still, and I am left with this POS. It is made by a company named Pride Mobility; I hope the designers are aren't proud.

Wednesday, September 5, 2012

Hanging in there

Coach Hayes from high school gym class was a big proponent of neck exercises. Every time he took the class to the weight room he made sure we used the neck machine.

I was more than happy to work my neck because it was one of the few muscles that was not obviously weak.

All the neck work paid off today in the bathroom, when I held myself aloft with my neck ... at least until I fell.

I have a moveable bar that is horizontal to the floor near my toilet. I use it to pull myself up, which I did smoothly, but I was unable to reach my pants so I sat down again and pulled my pants up around my knees. Then I stood up and pulled my boxers over my delicate parts. But when I grabbed my pants, my legs buckles or something and I fell over the horizontal bar.

I had a good grip with both hands on various bars, so I recovered and found my chin resting on the bar.

I needed my hands to try to stand, not just to grip the bars. I did not want to fall, though. So I let go off first one hand and then the other while I held myself with my neck and chin.

I did fall, but not hard and it wasn't my neck's fault. I pulled myself off the bar but couldn't make it to my chair.

After that I sat on the floor, exhausted myself trying to reach my chair, and then called my sister for help.

The problem is: These things do not happen in a vacuum. Actually, they seem to happen at the same time.

So this happened, then later when I was getting in my chair for dinner, my lose pant slid down. Then when I was taking my pills, I kept hiccuping when I brought the glass of water to my face so I wound up splattering myself with water.

All of which seem funny, especially now, but when things like that pile up, it is all I can do not to cry.

Monday, September 3, 2012

Where did my legs go?

I wrote last July about how my legs were apparently in love because at some point during the night one     always starts touching the other.

I figured this was a fling, of you will, that would end once I moved to a bigger bed.

It hasn't.

I mentioned in that post how I hated it because I can't tell where my legs are without seeing them. And when my legs move from side to side, it becomes harder to figure out if that lump on the left is my left leg or my right leg making a booty call.

I am beginning to wonder whether it is some subconscious thing to fight the loss of proprioception (that's the ability to tell where your limbs are in space).

Maybe I am subconsciously trying to find out where the hell things are.

It is really annoying not knowing where my legs are. What if they get lost?

Saturday, September 1, 2012

I'm a loser, but it's not my nephew's fault

My nephew was playing a game with his sister when I came in this morning.

I am not sure it was the official rules or something they made up, but each player had five squat, gold figures that they set up near the opposite edges of the table. Then they took turns sliding one of the guys toward the opponent's team, trying to knock someone off the table.

My niece was explaining to my nephew that she was quitting, but that that did not mean she was forfeiting, as he was saying.

I didn't buy her explanation, and felt bad for my nephew, so when he asked me to play I agreed.

He picked the team, and we started setting up our guys. I was having some trouble with that, so he changed the rules.

Just leave them like that, he told me, pointing to the guys I had not stood up yet. He also knocked over his guys, so we'd be even.

He also kept making up rules to keep me from losing.

What made all this cooler than the usual cool is that my nephew often seems to take perverse pleasure in beating me at games on the Wii. A few weeks ago, he loaded a mini golf game, saying, oh, you'll be so bad at this.

I'd miss it if he didn't take advantage of me at Wii, but he made me feel pretty special today ... even if I did still lose.

Friday, August 31, 2012

A good biker

OK, not all bikers are jerks.

Sure, some pass you without warning, but sometimes they stop and help you.

I went for a ride on my trike today, just me and Claren. It went well at first, but then Claren kept jogging too far forward and the leash would get caught under the tire.

I was able to fix it most times it happened by just unhooking the leash from her collar, pulling the leash out of the tire and rehooking it. But once, I was having trouble so this biker stopped, asked if I needed help and when I said yes, he helped. Then he sped off.

Tuesday, August 28, 2012

Bromance forged in the bathroom

My sister and brother-in-law have two kids, so I am almost certain I am not the first naked member of my family he has seen. (I also was not totally naked: I had a shirt on and my pants were on just around my ankles.)

I am also certain that last night was still the most he has seen of me.

Finally, I am equally sure that neither of us were real happy that he had to pick me up off the floor of the bathroom and sit me on the toilet, which incidentally he did easily. He is a PX90-er.

Now I have disquieting thoughts in my head since the idea of my little sister having S-E-X is almost as creepy to me as my parents and S-E-X.

To cure that, I will just mention how amazing I am because I fall a lot but almost never get hurt.

I know I am not unique. My brother with Friedreich's ataxia has told me how good he is at falling.

I also know I am not invincible. My brother has been sporting a bandage on his nose this week since a fall gone wrong.

But still.

Last night, I stood up, lost my footing, fell, knocked into some storage bins, landed on my back on a tiled bathroom floor, and my first response was to laugh.

Because my brother-in-law was there to save me.

Monday, August 27, 2012


I almost choked today on a piece of apple.

I purposely did not say "choked to death." I could breathe through my nose so I knew I wouldn't die.

But for a moment or two I was not sure what the heck was going on in my throat.

It started when I was swallowing a second piece of apple. At that point, the first piece decided it was stuck. I started coughing and spit most of the apple out. Just enough stayed stuck.

It was at this point that I tried breathing through my nose so I knew whether or not I'd need Heimlich'ing.

After that, I relaxed and coughed it out.

Saturday, August 25, 2012

Sick day

I called in sick to work Friday, my first sick day at the new job. (Can I still call it the new job when I have been there a year?)

I think I was mostly tired and off-kilter, rather than contagious sick. I took a three-hour nap Thursday and then slept till noon Friday.

I was feeling slightly guilty until I started recalling my dreams from Thursday night. I don't think I was feverish and I don't take illegal drugs, but something was definitely wrong.

I dreamed that:
  • my journalism grad school class was in Afghanistan, but it wasn't the class as I knew them. It was the class as I imagined them to have aged.
  • we ran into Osama bin Laden and he had a stereotypical posse with him -- a fat goofy guy, a lady's man, an older wise man, etc.
  • at this point it became like a chase comedy, with us trying to avoid Osama and Osama trying to avoid officials.
  • I tried to shoot Osama's one-person helicopter with a rifle, and the bullet went about 20 feet.
  • the subway system was involved, too, though I a not sure how I got home.
  • and much more including chamber pots, Johnny West, Ipads, Kerri Walsh Jennings and much more.
I think it was a good idea to stay home.

Wednesday, August 22, 2012

Going downtown

Today, I went downtown to see the guy I write for.

He is a real good guy, so it is fun to go.

And I love the main Interior building, or MIB. It is such a magnificent building. And the halls? They are so wide and long. A friend once talked about having go-kart races in the USA TODAY lobby.  But the lobby is nothing compared to MIB.

I ride our shuttle to get there. It is fast, convenient but not quite safe. Well, it is quite safe until I tell the driver, don't bother strapping me in.

It always seems unnecessary and something that would take too long.

I say that until we crash.

Sunday, August 19, 2012

Hang on, Matty

I have not now, or at any time in the past, been known as Sloopy.

And I do not wish to ever be called that!

Nevertheless, Hang on Sloopy has been pounding in my head this weekend. And I have welcomed it.

It was not a wonderful weekend. I am not sure why but here are some theories:
  • My body has not been working properly and required several changes of clothes. 
  • A niece may be at fault. She turns 20 tomorrow and we had a little party for her Saturday. Two of her friends came, so I got to meet two other 20-somethings who are working on a Senate campaign. Meeting people half my age who have accomplished pretty much all I have in 40 years already does nothing for my esteem. It isn't that I hate my job or any of them, and I am good at what I do, but I am replaceable. I live with my sister's family, which is awesome, but it isn't exactly something to be proud of. 
  • Swimming is on break, and my trike is in the shop, so no exercise.
But I will hang on.

Thursday, August 16, 2012

Math proves a lot of able-bodied people on subway are stupid

I blame the two gals who got on the subway car behind me today.

It was not a crowded car at all. No one was standing ... except in the door areas.

But instead of going past me to the many empty spaces around the train, they huddled next to the door, forcing me to move into the middle of the door area.

I was annoyed by that, so I started looking around.

There are doors at the front, middle and end of the trains, which are 75 feet by 10 feet. The total capacity is 175, and there are 68 seats. I can't find the width of the door area, but say four feet. That means the total area of the three door areas is 120 square feet (4*10*3), and the total train area is 750 square feet (75*10).

Into the three door areas crammed 21 people, not counting me and Claren. We'll say all the seats were filled, even though they weren't. But we'll say they were, which means there were 90 people on the train (22 in door areas + 68 sitters).

So in an area that is 16% of the car  (120/750), you had 23% of the riders (22/90), really more because I saw at least four empty seats, which would mean it was nearer 26%.

And only one of those riders in the door area couldn't move to the less crowded areas.

Tuesday, August 14, 2012

I can't do it

On my walk tonight, amid the lunatic bikers passing me without warning, I saw a roller-blader. Unbidden, "I want to roller-blade" popped into my mind.

I know I can't and never will be able to.

Even when I was a kid with no real balance issues, I couldn't roller skate. Well, I could use those skates you attached to your shoes. But I remember when I tried on my sister's blue lace-up skates, I could hardly make it across the family room floor.

I also know it is less than constructive to think about what you can't do. But I can't help it.

Saturday, August 11, 2012


On Thursday night, my last night alone this summer  (maybe forever after I tell this story), I did something stupid, I dropped a cracker.

That wasn't the stupid part, but it was the annoying catalyst.

The cracker fell under a wheel, and I did not want to crush it. So I maneuvered my chair back and forth to keep from running it over. I was in my bathroom, where there is not much room, hence the  back and forth.

I succeeded and backed up a bit, but I did not want to leave it there for certain nosy dogs to eat. 

So I bent over to pick it up.

That was the stupid thing. 

I knew I wasn't buckled in, but I was not prepared for the momentum of my downward movement.

I don't think I did a  full somersault, but I did end up on the floor in front of my chair, fang the hair. And also under the sink.

I was totally unhurt, but I still let loose a nice stream of curses. 

Then I set about getting back in my chair.

I have been having trouble falling asleep, I think because of my naps, so I have been going to bed later. It was nearly 11 so I didn't want to call Mom and Dad.

I decided to back my chair up and then use it to pull myself over to the bars near the toilet. This worked well! I even stood up as planned and started to lower my butt, feeling for my chair.

Unfortunately, I had pushed it back too far, and my butt just felt air.

I stood back up, but I soon felt my legs wobbling and needed to sit. I took the option available to me and sat down on the toilet, facing the tank, without the seat or cover down.

After my legs recovered, I stood back up and carefully shuffled my feet back until  I could sit back into my chair. Whew!

I was then too pumped to fall asleep.

Thursday, August 9, 2012

And I thought Claren was cool

Yesterday, we passed a girl in the Metro station and she smiled and then I saw her whip out her cellphone to get a photo.

 I laughed and thought to myself I wish I had a dollar for every stranger who took our picture, or at least Claren's. I'd have less than $10, but still, pretty good. Right?

That's what I thought until I ran into my friend who is raising Nathan, a service dog for Veterans Moving Forward.

Nathan is a ridiculously cute golden retriever who "blogs" on the Coast Guard's website. I refer to him as Claren's boy-toy because they seem to love each other even though he is nine years Claren's junior.

My friend told me how she and Nathan were coming back from NYC recently on the train. She said this woman kept staring, came over and talked about service dogs. Then all of a sudden said, "THAT'S NATHAN!"

My friend was taken aback so the woman added, "I am one of his fans." She was a Coast Guard employee who follows his blog.

At least Claren can say she had a famous boy-toy.

Monday, August 6, 2012

Blade Runner is awesome, not Olympian

I read that Oscar Pistorius is the talk of the Olympics. That's pretty awesome, except I don't think he belongs in the Olympics. (I forgot until now that I wrote about him four years ago, and damn! I am good. This just expands on that four-year-old theme.)

I hear people ask whether he has an advantage or a disadvantage, and columnists say how could an  amputee be advantaged, which seems kind of offensive and paternalistic to me but whatever.

The issue seems to me not to be whether his blades help or hurt him, but whether he runs with the same muscles others do. And he doesn't.

I don't know much about running, and I have written about how annoyed it makes me that I can't even remember how to run. But I do know that calves and ankles and feet are a big part of the running process, but not for him.

If the idea of running is merely to get from Point A to Point B as fast as possible, why are steroids illegal? Why can't someone in a manual wheelchair compete? What about someone who exercises the muscles of his fingers with a Wii controller?

Not of this should be considered a criticism of Pistorius' athleticism. I imagine that, like most Paralympians, he is probably a better athlete than many of his Olympic competitors. I love and am in awe of Michael Phelps, Miss Franklin, Usain Bolt and  all the others, but were I to design an athlete I might choose one of them as my model. I know they have honed their bodies to perfection.

But Paralympians take an inelegant body and force it to do whatever amazing thing they want: like running a 400 on blades not legs.

And it is amazing. I  just don't think it belongs in the Olympics.

Saturday, August 4, 2012

Matt's Blade

I am reading these Dave Duncan books, each subtitled A Chronicle of the King's Blades.

They are about these swordsmen who are magically bound to the king or one of the king's friends.

After the binding they will fight to the death for the king or whoever their ward is or die defending them. They always want to be with their wards or at least in sight of them. They generally go crazy when their wards are killed.

The binding magic involves the ward running a sword through the Blade's heart.

Judging by her moping whenever I leave her, Claren is more or less my Blade, and I did not need to run a sword through her heart.

Of course, I am not sure she'd kill or die for me.

Thursday, August 2, 2012

Something was wrong

I am not a huge gymnastics fan, but even more than usual I find myself asking: How did they do that?

When I was little, our church/school added a new playground.

It had a balance beam that had three levels. I don't remember ever trying the two higher levels. I think the only reason I walked the lowest one was because if I fell it was maybe a foot off the ground.

Growing up, I had no idea anything like Friedreich's ataxia was wrong with me. But when I look back, I find it startling we did not know something was wrong.

Tuesday, July 31, 2012

Awesome friends

My friends taught me a valuable lesson last night: Don't settle.

Four of us went to dinner last night at Ray's Hell Burger.  We got a seat at two tables for two pressed together, but the tables were too low for me to get under.

OK, I thought, and I just positioned myself as best I could.

But they kept looking and one went and asked the manager for something to raise the table.

The manager brought out two of those big plastic cup racks. That my friends and the manager put under the table legs, but my chair hit them so I still could not get under.

Again, I was like OK, and I asked the manager if I could just use one of the racks as a tray for my lap. As she went off to clean it, I looked at one of my friends who appeared to be doing a little geometry in his head.

He was looking at the table legs and suggested we move them out of my way more.

When the manager brought the rack back with several paper towels covering it, my friends had rearranged the tables to look like this: <><>, joining at the point instead of the side.

I was able to sneak in closer in the middle, and once I had the tray, I was ready for a grade dinner. It was.

It would have been awesome even if the tables did not get rearranged, and I didn't get a tray. But those things reminded me why my friends are the best!

PS: This is my second post today. Don't get used to it.

The best movie I ever heard; thanks Regal Ballston and Sony

I just watched the best movie I have been to in more than 10 years this afternoon At Regal Ballston Cinemas.

Don't get me wrong. The Amazing Spider-Man was not the best superhero movie I have seen this summer (The Avengers). It isn't even my favorite Spider-Man movie (Tobey Magurie's first two rank as two of my favorite superhero movies. The third, in case you are wondering, was better than Elektra but worse than Daredevil.)

It was a fun movie, but any Spider-Man movie without MJ is missing something awesome.

What made it great was the personal closed captioning system many Regal theaters now offer on almost any movie. That's right: captioned movies!

You wear these glasses that project captioning on the screen for you in transparent green. The captioning isn't all at the bottom but because it is transparent, it doesn't block anything. Sony seems to have made them.

I can usually follow action movies even if I miss some dialogue.

But I cannot overestimate enough how amazing it is to know everything that is said. Beautiful.

Saturday, July 28, 2012

My feet should be registered as lethal weapons

I kicked Claren yesterday. Not hard and not on purpose.

She was in a hurry to get outside and as I opened the door she nudged my foot. My foot responded by showing its astounding reflexes and smacked her in the snout.

Her reaction reminded me of my nephew's when I kicked him in the face.

Not when I kneed my nephew in the face. I still contend that was his fault, too. That resulted in tears and a trip to the dentist.

No, I am talking about when I was getting off my trike. My sister was helping me unlock my feet from the pedal clips, and my nephew, who was quite little, got too close.

I kind of kicked him in the face when my foot came free.

He didn't cry. My sister said he just looked like "What the hell just happened? Did you really kick me in the face?"

That was how Claren looked. At least until she ran outside.

Tuesday, July 24, 2012

So close

I was all set to work from home tomorrow I got everything connected BUT ...

I can't login now that I am not on the network and I never thought to ask how.

I could stay home an call them tomorrow except of course I can't really hear on the phone.

Mom offered to call but I turned her down.

I'll just go in tomorrow, find out how to log in and try to telecommute Thursday.

PS: My 1,000th post. Nowhere as cool as Patrick, but ...

Sunday, July 22, 2012

No longer a newsman

I had a good swim today -- 14 lengths. My goal is to do one more length each time. Well, that and the breast stroke.

But mostly I was thinking it was one year ago that I left USA TODAY.

I can't believe it has been just a year. I  still miss the folks I met there something fierce.

And the job, too. I miss too much now because it is not my job to know it.

I love my new job, though.

Friday, July 20, 2012

Sucky parts

I emailed this co-worker to ask for some help with a Intranet page.

She quickly replied that she wasn't at work but was with her sister who was dying. I apologized and told her nevermind. She then emailed back to say it was OK, that it sucked but was part of life.

I did not reply to that but I started thinking about a counseling session I had years ago.

The counselor had given me what she liked to call homework, a sheet of questions.

One of the questions asked something like: Do you think life is hard? Of course I answered yes.

The counselor wondered if I thought life was hard for me or for everyone.

Being younger and having a bit of a martyr complex, I said me.

I know that life is hard for everyone, like my co-worker.

It sure seems, though, that I have more sucky part than a lot of other people.

Tuesday, July 17, 2012

It's FA's fault

A while back, my little sister and I were playfully arguing about whose fault it was that we did not get along in high school.

She blamed me and said I was essentially a mean nerd. I was definitely a nerd.

I blamed her for being a typical annoying high schooler and added that I was coming to grips with a deadly disability.

This is not the first time I have used this excuse. I told one of my nieces that even though her SAT score was higher than mine I was coming to grips with my disability. (Plus, she got to use a calculator and write essays. Just give me a 1600.)

Nobody buys this reasoning. My sister tells me to shut up and says I did not even know about Friedreich's ataxia. My niece says she took the test when her dad had cancer and she thought he was dying.

These are all valid considerations, but I think mine is, too.

An insecure, withdrawn teen trying to figure out why his body just doesn't work right.

Of course, I didn't think it was anything truly bad ... at least consciously. I had people I trusted tell me I was out of shape. My family thought I'd grow out of it. I was less clumsy than my brother. I never considered asking my doctor.

My sister was just one more thing in my life that I could not control. Maybe that is why I yelled at her for putting down the top on the convertible instead of waiting for me to do it.

Yes, it was mean and awful.

Yes, I was a jerk. The FA made me do it.

Sunday, July 15, 2012

Slip-sliding away

Last week I went to Target for what is an all-too-regular trip to get my glasses straightened. 

While I was there, I also bought some shorts.

Shorts and pants that feel comfortable when I am sitting tend to slide down when I stand up. So I prefer shorts with elastic bands.

One of the pairs I bought was a pair of athletic shorts. They are made of quite slick material, so I slid a bit on my wheelchair seat. But nothing too bad ... until I went to bed.

It is a quick trip from bathroom to bed so I didn't have my seatbelt on. I bent over to pick up some Claritin that had fallen, and I slid right off the chair.

My head flew into my bed and knocked the mattress a foot off the mattress pad. My face then smacked into the mattress pad, then the floor.

I picked my face far enough off the floor to see if there was a pool of blood. There wasn't. I felt my face and only felt a little liquid, so the next step was getting up.

It was after 11, so I did not want to call Mom and Dad. My sister and family are on vacation.

Fortunately, my shorts allowed me to slide easily, which I did. I got to the pole near my bed, wheeled my chair close to me, then stood up using the pole and got in my chair.

I then went and  checked my face in a mirror. My nose was cut and still hurts a bit.

Luckily, though, I did not mess up my glasses.

Saturday, July 14, 2012

Life is not so Good

I like Life is Good clothing. Very happy-looking and it seemed like a good company.

The problem is that most, if not all, the stuff their cartoon character does on the designs is stuff I can't imagine doing. Stuff like, you know, walking.

So I emailed them, asked if they had ever considered putting their character in a wheelchair. I didn't expect them to agree, but I did think they'd email me back. I even got an automated email Tuesday saying they'd respond within 48 hours.

Maybe the response got lost or it's in the mail. But I am starting to like them less.

Wednesday, July 11, 2012

Fine, it was lazy

I think I was a very bad disabled person today.

I got home, I was tired, and it was warm.

Rather than spend 15 minutes wrestling my shoes and pants off, then putting on shorts and shoes, I asked my sister for help. So I could nap sooner.

She did, of course, although she laughingly said I was being lazy and exaggerating how long it would take me to change.

For the record, it took 15 minutes even with my sister helping before I sat down and snoozed.

Monday, July 9, 2012


I hurt myself today.

It hurt really bad.

I focused on the pain, and for a moment there I was pretty sure I was going to throw up.

The door of the wheelchair stall sits half open. I like this. Normally, the doors to wheelchair stalls close  when they aren't in use. This means you have to try the door to see if anyone is in it. Or look under the doors.

Today, though, the half-open door was bad. I ducked through the door but only my right leg got past. My left leg stayed on the other side of the door.

My reaction time, I think I have mentioned, is not good, so I kept driving my chair into the door. The door responded by opening wider, or trying to. It was unable to open because of my left leg, which slammed into one of the metal parts of the chair.

I scrambled then to jerk my chair backward. I somehow managed to ram it farther into the door, which rammed my leg into the chair farther.

It was at this point that I tried to relax, focus on the pain and take my time backing off the door. As I said I almost barfed.

Then the joystick knob came off.

Then I backed the chair up.

Then I went in the stall and tried not to cry.

Friday, July 6, 2012

Olympic sadness

Last week, before we lost power, I was watching the Olympic swimming trials.

Besides convincing me that I should  learn the breaststroke (oh, how my swimming teacher will laugh), the trials reminded me of an email conversation I had with a former beach volleyball pro.

Really, I know a former beach volleyball player. Of course, I knew her when she was well into her second career of career counselor.

It was probably in 2004. I was telling her that as much as I liked the Olympics it was so hard to watch them because I couldn't imagine doing what these athletes do.

She agreed, but pointed out ed that 99% of the population can't do what athletes can do. And she mentioned a story at the time about an Olympic hopeful who just missed the Games and killed himself.

I watched this year, noticing the fractions of seconds that separated success from also-rans, and I understood a little more what she was referring to.

I guess I can imagine what swimmers do (at least backstrokers) and dressage riders, and how hard it is.

But track and field? How do you stand, let alone run or jump or throw something? Even beach volleyball is mind-boggling to someone with no dexterity.

I'm sure I'll watch the Olympics this year. I am also sure it will make me sad.

Wednesday, July 4, 2012

Powered up

Finally, got power back last night.

We had a generator to power the important stuff like the 60-inch TV, but I am pretty helpless without power.

I spent one night at Mom and Dad's recharging my chair, so I never ran out of power. But I could not do much but watch TV. I couldn't really get out of my chair. We had Internet, but typing while in my chair is tough.

How whiny do I sound?

Thursday, June 28, 2012

Faster in my mind

In This is Spinal Tap, the band had their amps go to 11 because it was one louder than 10.

I have been having a Spinal Tap moment lately with my wheelchair.

A few days ago, I got bored in a meeting because I couldn't hear anything, so I started playing with my wheelchair settings.

I found one that let me switch it to the metric system, but I could not get it to switch ... at least so I thought.

The next few days, I have noticed my wheelchair is going faster -- not really but the speedometer says so.

I finally figured out that I did change measurement system, and the speedometer was showing kmph not mph.

It still felt faster.

Tuesday, June 26, 2012

Tarry night

To get from the actual subway station to the "Kiss and Ride" lot where Dad picks me up, I have to go down one curb cut, up another and down a third.

The only other option would be to leave the station completely and have Dad meet me on the street.

Not really much of an option, but I should have considered it today.

Each of the curb cuts was 75% blocked off, and a strip of new asphalt ran the length of each.

I now have asphalt all over my wheels. Nice.

Sunday, June 24, 2012

Remembering it all

I swam four lengths of the big outdoor pool mostly on my own yesterday. My teacher just barely held my head and sometimes -- as the snouts full of water I swallowed will attest -- not at all.

All told, I swam a quarter mile.

But those four lengths without a vest, or a fat suit, were  so cool ...and so hard.

Nothing about floating comes naturally to me. My teacher says it is because I have no body fat. Whatever, it is just hard.

Remembering everything I need to do to keep afloat taxes my brain -- I need to relax, keep my belly up, trust my hips forward, don't jerk, oh yeah, and breathe.

I cannot remember to breathe. My teacher has to remind me.

I suppose this is similar to life with FA. You don't just take a shower: You transfer to a shower chair, buckle yourself in, line yourself up under the shower-head, grab the soap, which is in a stocking to keep it from getting away from you, blah, blah, blah.

I would not mind having things easy, just once.

Thursday, June 21, 2012

Handicapped parking spots or jackass drop spot?

Apparently, all these years I have been operating under the wrong impression about handicapped parking spots.

I have long thought that they were areas to park in for people who have some kind of mobility issue.

Turns out they are just spots for jackasses to leave their shopping carts.

I learned this at Target today. We had to go to a second spot because a cart was blocking the better spot. When we left, a second cart had appeared.


Wednesday, June 20, 2012

Something else to worry about

Apparently, I no longer need to worry about urological disorders. 

This does not, of course, mean I will stop worrying. Something bad would happen if I did, I am sure.

It just means that my urologist gave my a clean bill of health. This was after she told me that she described FA to the nurse as something you don't want to have. Amen to that!

She said:
  • The kidney stone is tiny and no big deal. 
  • My bladder is a real hoss. It holds a ton and empties well.
  • My prostate is not that much bigger than usual.
So yay!

But I heard from my primary care doctor. My cholesterol is not too groovy. My bad cholesterol is not that bad, but my good is pretty poor.

It would be nice to get back to just worrying about the monstrously devastating disease I have.

Tuesday, June 19, 2012

Come on, Bruce, caption this

I read this story and I really want to watch the video. I tried, though, and could not follow it at all. I wonder if it will ever get captioned? I am skeptical.

Sunday, June 17, 2012

In the water outside

I went swimming in an outdoor pool for the first time ever yesterday. It was awesome.

The last time I was in an outdoor pool was about seven years ago on a family vacation, and I have been swimming for just three years.

We are on a break from classes, but my teacher offered to meet me at her pool and help me. How could I say no?

Mom and I thought it might be a fast lesson because it wasn't super-warm out, but after the initial jolt getting into the pool -- made worst because I got in via a lift, which is real cool but dips you in SLOWLY -- it was so comfortable under the sun.

I did  a lot of work, too. I learned the backstroke where you swing your arms backward -- like you see in the Olympis. Just like that, really.

The pool was longer than I am used to, and wow, did I feel it. But I made it.

The only problem was the sun made it hard to stare into the sky when I was on my back, even with tinted goggled borrowed from my teacher. I wanted to close my eyes but then I lost all sense of where I was going.

Oh well, still awesome.

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