Saturday, December 31, 2011

Go, FA mice

This has been a crazy year. I turned 40, quit a job where I was loved, took a job that is good and is evolving into something more fun, and moved into a new house with my sister and her family.

My Friedreich's ataxia got worse, too.

I know I am not supposed to think I will get better, but how am I supposed to read things like this from the MDA and think it is just a matter of time before I am running.

Do I maintain hope that I might not need a chair forever? Or do I assume science and medicine will never get it?

And even if they did cure FA, would it help me? Or am I too old to benefit from any cure?

Here's to the future ... I guess.

Wednesday, December 28, 2011

It's not my Wii skills my nephew likes

In his own odd little way, my nephew is looking out for me.

Last night, he, his dad and I left a family party at Mom and Dad's early and came home. He and I were playing Wii while my brother-in-law was downstairs in the basement.

I was drinking tea and all of a sudden had to go to the bathroom rather urgently. I made it to the bathroom but just to the bathroom, not the toilet.

With no one in the house but my 7-year-old nephew and brother-in-law, I decided to change my clothes myself. I transferred to my shower chair, got undressed and wheeled to my clothes bins to get some clean clothes.

I am not sure how long he was there, but at that point I heard my nephew from my open doorway if I had taken a shower. I told him no, and he asked, well, why don't you have pants on? I told him I had a little accident and needed to change but was OK.

I then heard him giving my brother-in-law a quick recap and telling him I didn't need help.

At that point my sister came in and helped with the cleanup, so I still didn't do anything on my own.

I want to say my nephew came hunting for me because he needed my Wii skills, but I am the worst Wii player in history. He must like me.

Monday, December 26, 2011

Nicked up

It was inevitable, I know. Maybe I should be glad it finally happened. I put a big gouge in a visible door frame. I wanted to throw up.

It's not that I thought my brother-in-law would hit me. He actually spent the day putting up a flat screen TV in my room.

It's just I have tried so hard to be careful and I made it less than three months. Even less if you count the nicks in my door frame.

Saturday, December 24, 2011

Bruce should be played in church

I went to Mass tonight, and while I love the carols, this is the song that got stuck in my head. Not that I heard it at church.

Wednesday, December 21, 2011

I am amazing, but Claren deserves the credit

Claren got two gold stars for yesterday.

First, I went into the restroom, and the door to the wheelchair stall was closed. I went closer, though, and noticed that it wasn't locked or anything, so I figured it was unoccupied. I opened it and waited for Claren to go in, like she always does. She didn't, and only then did I hear the voice saying, "I'll be out in a minute."

I almost walked in on a co-worker!

At lunch, I went for a walk and after Claren did her business, I bent over to get it.

I heard this voice but didn't see anyone. Then this woman appeared -- she must have been across the street when she saw me -- and asked me if I wanted her to pick up the poop. I said no but thanks. She replied, I guess you do this a lot.

When I admitted I do pick up after Claren regularly, she said, "You are amazing." So just SUCK IT, low esteem.

Anyway, she then told me how she is always so happy when people help her. I agreed, but told her I didn't want to make anyone else pick up poop. Again she said, "You are amazing."

Let me point out here that she was quite a cutie.

She also told me that people in her neighborhood did not pick up after their dogs, and they weren't in chairs.

I considered asking if she lives in my neighborhood because I see the the guy across the street walk his dog but have never seen him with a bag. But I didn't.

I remembered this scene from Spider-Man that includes the line "You are amazing." My encounter did not end as well.

Monday, December 19, 2011

Stander pole: Awesome if you like playing Russian roulette

Dancing with death is never a good way to start the day. Your whole day is tainted.

I did not actually nearly die.

I was holding on to the locking curved grab bar that is on the pole by my bed to transfer. I was just getting to my chair when the lock gave out and I flew into the back of my chair.

What is most disturbing about the incident is that the folks who make the Stander pole are so blase about it.

We called to figure out, you know, WTF, and both times they just gave instructions to reset the locks. It worked but for how long? And who's to say next time I won't fall onto the floor and sue their asses? It has happened before.

Also, it was apparently Opposite Day at Stander. The people said clockwise when it should have been countercockwise and vice versa.

Saturday, December 17, 2011

The shit of the real world

I have read testimonials from people who say Bruce Springsteen kept them from killing themselves.

I can't say this has happened to me -- never having been that close to suicide -- but it makes sense.

One of the reasons I like Springsteen so much is that he is steeped in reality. The people in his songs -- with a few signifiant exceptions like Born to Run -- don't talk about escape. They are more about finding a way to survive the hard parts of life so they can live the joyous ones.

There's Night, where after-hours keeps the singer alive. "Hell all day they're busting you up on the outside; But tonight you're gonna break on through to the inside."

Out on the Street is the same theme. Friends and fun make work survivable. "All day you've been working that hard line; now tonight you're gonna have a good time."

In Badlands he sings about "Workin' in the fields till you get your back burned," but then asserts, "We'll keep pushin' till it's understood and these badlands start treating us good."

And you know you're not alone in struggling.

Surviving in the real world is a theme that runs throughout his music, and I love him for it.

All that said, today I wanted nothing more than Tracy Chapman's Fast Car to carry me away from my life.

I fell when I was getting on the toilet. Not badly. I actually didn't touch the ground except my feet, but I missed the toilet.

The problem was I was sitting down hurriedly because I had to go to the bathroom urgently, and when I missed and struggled I did on the floor. And no, it wasn't that kind of urgency. What came out on the floor was the real gross kind. Oh shit! That's right.

I knew I needed help so I shouted for my sister. She came in and immediately called for her husband to help with the lifting. We got me up and she cleaned the floor.

Neither should have to deal with my shit. I can and do, but they should not have to.

I am not sure what else to do.

I don't have a driver's license, let alone a fast car so even though it was really cold and gloomy, I went for a slow ride on my handcycle, trying to figure out how to survive in this real world.

Thursday, December 15, 2011

More changes

I knew i was I for some adjustment when I turned 40 and started a new job within a few days over the summer and moved few months later. But months later, the changes keep coming.

The biggest one is work. I am becoming the speech-writer for our group, which is quite exciting and cool. But it is a bit more nerve-wracking.

The house is a work in progress. I just ordered a new grab bar after some occupational therapists came over to see the bathroom. I am having some issues getting off the toilet so they helped us find something to help.

I just wouldn't mind boring.

Monday, December 12, 2011

Go, Montana, cut that disabled hunter program

Montana is trying to scale back its program for hunters with disabilities, and the disabled hunters are in favor of it.

It seems that people without disabilities are claiming a disability to get into the program, which allows hunters to use vehicle, shoot elk cow and hunt in places others can't.

The authorities say they see hunters dragging a shot elk over mountain terrain but saying they are disabled.

The program requires a doctor's certification, so the law officers do not feel qualified to question a doctor's note even when they see a person who in no way, shape or form appears disabled.

This does not surprise me. I am confident that not all those with handicapped parking permits have a disability.

I do not blame doctors, who are overworked and want to help their patients.

The problem is people who feel that they are owed everything and are entitled to bend the rules to get what they want. Not just of the disabled hunter program but with almost everything -- the economic problems, executive compensation, terrorism, etc.

Riding an elevator does not require a doctor's note, but I am certain that if it did, I would still run into situations like today.

I pulled up to a packed elevator. No one paid me any mind, so I said loudly: "I'm the one who's supposed to be using the elevator." Still nothing. The people at the front of the elevator just looked at me as the doors shut.

Part of me wants this sort of person to become the prey of a disabled-hunter program. But that would be like snapping the rules in half. So I guess they get away with it. Jerks!

Saturday, December 10, 2011

Christmas for superheroes

It's Christmas time, and I finally have my own toys again! Well, some of them. Others, like Buffy the Vampire Slayer and First Appearance Batman remain hidden in a big box I still need to unpack. I have plenty to fill out Matty's Nativity.

The Big Three are back, in original wooden form. This year, though, they are backed up by the Charlie Brown folks. Should Jesus, Mary or Joseph prove unable or unwilling to perform any required duties, Woodstock, Lucy or Charlie Brown are authorized to step in.

On the far left is Teenage Mutant Ninja Turtle Michelangelo. I figured Michelangelo needed a chance to paint the nativity, less depressing than the Pieta.

Next is Space Ghost from talk show Space Ghost Coast to Coast. who will help provide needed publicity for the savior. As Judas tells Jesus in Jesus Christ Superstar, "If you'd come today, you could have reached the whole nation. Israel in 4 B.C. had no mass communication." Space Ghost answers that need.

Next is Green Lantern who will be the heavenly host. This particular Green Lantern came from a friend who reminded recently me of important things. Green Lantern will easily portray angels, and his oath gives me goosebumps: "In brightest day, in blackest night, no evil shall escape my sight; let those who worship evil's might, beware my power... Green Lantern's light!" I like the box, so I did not take him out. It has nothing to do with keeping in Mint Packaging.

Green Arrow is a fast friend of Green Lantern's so he is visiting the nativity, too. He could be a shepherd, I suppose: They both probably used bows. Mainly though, he is around for protection.

We know, thanks to Stargate and other shows, that aliens visited Egypt and built the Pyramids. I don't know if they stopped in Rome and Judea later. I, for one, am taking no chances. Luke Skywalker is there, manning the anti-aircraft weapons.

Plastic Man, in the rear, is mainly there for comic relief. Things get too tense, he can stretch his face into an amusing appearance and make folks laugh.

Wolverine and Beast, just behind Charlie Brown, can be just about all the animals in the stable, especially Beast who changes from monkey-like to feline to other, depending on the artist.

Between them, you can see the front of Professor X's wheelchair and an arm in his trademark blue suit. If Jesus turns out to be a mutant, Prof. X can help mentor him.

Finally, Superman makes his first appearance in my nativity. I just started this year to warm up to Big Blue. He is mainly here, though, in case Lex Luthor time travels back to wipe out Christmas. He can also make the Flight into Egypt a real flight.

Here are the ones from 2007,  20082009 and 2010. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Wednesday, December 7, 2011

A good day, I guess

Today was full off so many things that were good or bad depending on how you view them.

First, I breathed heavily and for some reason that launched me into the PC tower on my desk. I almost started crying it hurt so much and shocked me. I took the brunt on the tip of my nose and my upper lip. I tentatively reached my hand up, fearing it would come away bloody. Fortunately, it came away clean. The small nose bleed did not start till a few minutes later. And my nose still hurts and coughs up a little blood now and then.

But this injury could be taken as bad or good. Bad because it happened, but good because of the placement. Much higher and my nose and glasses would have broken. Much lower and I think my front teeth would have been at least chipped.

After that I had a good holiday party lunch. Nothing bad there, except I got wine for my gift and I don't drink. But it is a very cool label.

Then I went to the hand doctor. A long wait, but it turns out my finger is not broken. Unfortunately, the doctor wasn't sure what was wrong, but her hypothesis was good. She thinks that I strained the muscle between my pinky and ring finger and that it keeps getting re-strained because my finger is not very strong thanks to Friedreich's ataxia. She suggested I tape it to the next finger and wait a few months.

See? Good it wasn't broken. Not good that we don't know for sure what's wrong and that it'll take months.

I had dinner with someone else in a chair and it felt good to give her solid advice. But she joked about people whose instinct on seeing a problem is to curse. "Hey," I thought, "a little cursing never hurts"

I'm putting it in the good-day category but reserve the right to make changes as needed.

Tuesday, December 6, 2011

My stupid finger

A few months ago, I banged the pinky on my right hand.

I wondered at the time if I broke it, but it wasn't swollen and didn't hurt bad after it happened. So I forgot about it.

Or I tried to.

I am off to a hand doctor tomorrow. My pinky pain has reappeared a few months ago. I thought it was some repetitive stress injury from my wheelchair or computer, but the pain lingers. Today, I banged it again and for a second felt like throwing up.

We'll see what happens. At least I'll know whether my hand was broken.

Sunday, December 4, 2011


Last night my sister and brother-in-law went out for her birthday. This meant that I stayed home with the kids. Not that I was in charge. Another niece, who is a freshman at a nearby college, came over to babysit. I just had to not do anything stupid. Well, it worked for about five minutes.

On the way to Mom and Dad's for dinner, I got stuck in the yard. I ran into some stuff, and my wheels sank. I called my older niece but she couldn't pull it out. she had to go get Dad and my manual chair. I transferred into that and then Dad and my niece wrestled the power chair free.

Wednesday, November 30, 2011

Note to self: Go to bed early

I was checking my text messages today and I noticed one from last night from my sister: "you ok down there?" OK is a relative term, I suppose, and I was not hurt. Still, if I heard the text come in, I would have asked for help.

I wasn't injured, but I was on the floor with my underwear around my knees.

I took off my shoes and socks in the bathroom, so I was getting into bed barefoot. Sort of a stupid move, but getting undressed in the bathroom was required -- and that's all I will say about that.

The other issue was my boxers. They are faux-silk and I kept slipping down my chair. But whenever I pulled myself back up, the boxers did find some non-slippery surface to catch on, so I got to my bedside without footwear and with my boxers at mid-cheek.

I am not quite sure what happened next. I stood OK to transfer to the bed. My feet were both on the welcome mat I have by my bed to stand on. But I think I took too long -- I noticed that my bed had moved -- a leg buckled, hit the hardwood floor and slid along it.

I was then on the ground.

I considered calling my sister or getting Claren to bark. I also cursed going to bed after everyone else.

I tried getting up, failed, found my slippers, put them on, tried to stand again, knocked one slipper off but got to the bed, pulled up my boxers and went to bed.

Now I need to go to bed now so others are still downstairs when I go to bed.

Tuesday, November 29, 2011

Theological conundrum

My latest theological conundrum: The things that convince me that God is not friendly, is not loving and may not even be there are the same things that make me plead with God for help.

Today, we had an office party for someone's birthday. So uncomfortable. It's loud and I Can't hear. Plus, I wind up staring into people's chests. Then my head started hurting. Then, I coughed and flew into my computer. Then there was an with my wheelchair controller and the metal toilet paper box in the stall at work. I can't believe neither broke.

I finally got home, took some Advil and a little nap. Right before I dozed off I said out loud: ""God, help me."

I am not sure he did. My head still hurt, my glasses were still bent, and my hearing is no better. That's OK; it would have been weird to wake up fine.

Sunday, November 27, 2011

I need more than 10 minutes

Mom's right, of course.

We had just come back from a short ride/walk yesterday -- I rode my handcyle; she walked with Claren.

I was saying that the ride made me sad because I can't even stay in my trike seat -- I keep sliding forward and have to stop and reset myself.

She said that if we spent more than 10 minutes on my issues we could solve them. But all we have is 10 minutes because then another issue pops up.

We were talking about harnessing solutions for my trike and we went in. At that point I hit my heel on the footplate of my chair and remembered that has been a longtime pain.

Mom fixed the wheelchair issue for now by putting some rubber on the footplate but that was after this morning when my alarm clock became the latest issue. The snooze button is so big that I hit it by accident. Then nine minutes after I got up, the alarm went off again. I can't reach my alarm clock without getting in bed, so this morning Claren did not get her continence pill, the bathroom light stayed on, and my door stayed open because I had to get in bed to turn off the alarm.

I was going to go to a store to find a new lock with a more modest snooze bar but no one really stocks clocks. Stores just have them on their websites, but none of those websites really shows snooze bar length. Eventually I ordered one, kind of a guess.

So that is two out three issues solved. Sounds good? It was until my bladder decided it reallyreallyneededtogo. In the ensuing cleanup, which my little sister should not have to do, I missed the end of Once Upon a Time, a fairy tale in real time.

I am pretty confident my story will not have a happily everafter ending.

Saturday, November 26, 2011

Wii may not be for me

When Wii first came out, you saw lots of stories about it being used in physical therapy. Well, let's just say Wii and Friedreich's ataxia don't fit.

It's not that I mind my 6-year-old nephew saying "You're toast" before we started a skiing event or his sister cheering me on when I got half her score in figure skating. I don't even mind my nephew' disappointment when we were on the same team.

No, the problem is I can't even get it to work enough to choose a character.

I may have to try an xBox Kinect.

Wednesday, November 23, 2011

Are you there, God? It's me, Matty

The other night God and I had a chat. Well, no. A chat suggests two people talking. I didn't hear any response to my questions.

I was asking, maybe demanding, that God be there for some people I know who could use him. (I use he and him just for simplicity.) More than me.

I know you are thinking "more than Matt," is that possible?

It is. I like to whine and gnash my teeth, but I'll be OK. I know I will survive what I can and figure out what to do when I face something else. My life is rarely easy, and that pisses me off no end. But I can take it. I suspect that after the despair and pain, or maybe even in the depths of them, I will laugh and I will have family and friends who make sure I do.

I am sure that my friends can take it, too, but I don't want them to have to. Because of Friedreich's ataxia, I expect my life to be fairly miserable or at least really hard. Life should not be like that for others.

God better be helping my friends, so I can get back to feeling sorry for myself.

Sunday, November 20, 2011

I don't feel thankful

It is Thanksgiving this week, but I am not feeling too thankful, more sad.

It isn't that I do not have many things to be thankful for, including a brother-in-law who is up on a ladder right now rewiring the light in my room.

I think it is like prayer: If I am going to thank God for things, I need to be able to blame God when things go awry. But that is not how prayer works. So I don't pray.

I mean I talk to God, asking over and over: WHY? Like why did I drive into a branch from a rose bush on my way home from Mom and Dad's. Sure, I ran into it because it was in my way, but how hard would it have been to bump my chair a little to the left?

Saturday, November 19, 2011

Bad, Bath and Beyond yucky

I should have quit when I was ahead.

After a successful trip to REI for slippers and a swim shirt, I visited Beth, Bath and Beyond for an alarm clock and a mirror.

Big mistake! I am never setting foot or wheel in there again.

First off, the number of handicapped parking spots? Totally inadequate.

But the store itself was even worse. Crap piled up everywhere so I had to pick the aisles I could wheel down. I ran into a display of shower-heads at one point and knocked a bunch into my lap.


Monday, November 14, 2011

Constant companions

The workers building our new house apparently left behind some roofing materials, and now I have them -- shingles, that is.

At least that is what my nurse practitioner assumes. I apparently do not have traditional-looking shingles, but she diagnosed it from my description of the pain.

She said that illness and stress cause it, but she did not know what caused my case specifically. I told her that "illness and pain are my constant companions."

I was pretty tickled with that, but she just nodded.

So now I just have to deal with the pain and discomfort. That's OK, they're my constant companions, too.

Sunday, November 13, 2011

Too much

I like to pretend I am about much more than my disability or my wheelchair. I go to work full time. I take Claren for walks. I try to live my life. But in the end most everything track back to Friedreich's ataxia or the chair or both.

The "pimple" on my back has blossomed into something quite painful, made worse no doubt by the fact that I have to lean against a wheelchair back all day. It might also be made worse by the mold growing on my less-than-a-year-old shower chair.

So now, I need to:

  • Call the doctor and get an appointment.
  • Leave work and go to the appointment.
  • Hope my doctor knows what it is and doesn't send me to a specialist.
  • Call the wheelchair supplier and ask WTF is going on with my less-than-a-year-old shower chair getting mold.

It doesn't seem like much and Mom will do the calling, so it really isn't that big a deal at all.

Except I am disabled.

Everything is a big deal when you are disabled. Getting into and out of bed is  a big deal, and so is everything in between.

Adding something, anything, comes dangerously close to being too much.

Thursday, November 10, 2011

Being disabled sucks, but ...

Being disabled sucks. No two ways about it. It sucks in the morning when I can't get to the bathroom from my bed in time to empty my bladder, even though my bed is 10 feet from my bathroom. It sucks during the day when a tiny pimple on your back becomes a hellish problem because it is constantly squeezed against an uncomfortable back rest. It sucks at night when I slip getting in and out of my comfy chair. It just sucks, OK?

It does, however, force me to ask people to do things you normally would hesitate to ask your spouse. And it gives people a chance to show me just how great their love is. It never ceases to be awe-inspiring.

My little sister, my new housemate, had two such opportunities and she responded with greatness.

Being disabled sucks, but seeing how much you are loved is pretty amazing.

Tuesday, November 8, 2011

Saved by a tooth

I suspect it is because I am tired, but the commute home holds innumerable ways to really piss me off.

There are the walkers who use elevators and crowd me in. Granted, one or two could have an invisible disability, but most of them are just lazy jerks.

I missed the train I normally ride, maybe because I left work a little late or maybe because people held up the elevator.

Then I missed the next train. No, I didn't miss it; I couldn't get on. Not because there was no room, but because instead of moving to the center of the car as they are supposed to do, most people congregate round the doors -- you know, the space for wheelchairs.

I honestly don't get this very popular move. It saves maybe 10 seconds. There us more space, for wheelchairs, strollers or people who need it. And needing to stretch out and read your Kindle is not an acceptable need.

I finally got the next train and got out to the parking lot where Mom was waiting. I couldn't get to her, though, because this numb-nuts blocked the ramp with their truck. Then they stopped and stared and pointed at Claren, instead of moving the F--- out of the way.

This pissed-off mood continued until my 8-year-old niece came down out of bed, worried she had cracked her loose tooth. She was reassured and went to bed for 15 seconds before coming back to say she pulled the tooth out. On the way downstairs, though, she lost the tooth.

It all cracked me up.

Monday, November 7, 2011

Falling apart

I am starting to think my pinky finger pain might be less related to a break and more related to some repetitive stress-type injury.

I had a makeshift joystick on my wheelchair for a few weeks that looked cool -- one of my nephew's bright neon green pencil holders -- but it might have pushed my pinky finger in unfriendly ways. I am back to the boring joystick now so maybe that will help.

The real problem is this tiny pimple on my back, which today felt like a dagger poking through me.

I assume it is a tiny pimple. I can't see it. It is possible, of course, that Mom and my sister are just telling me it is nothing, while in reality I have a huge parasite sucking me dry back there.

I doubt it.

Thursday, November 3, 2011

Uh-oh, fire drill

We had a fire alarm at work today. Total false alarm, but I am not sure I am real down with the evacuation plans for those of us in wheelchairs.

The safety coordinator and the two of us in chairs go into an office that has a balcony -- although it has a step -- and we wait basically. The coordinator calls and makes sure the fire department knows about us so they can rescue us, but that's it.

At my old job, I waited in the stairwell, which friends did not think was good enough. But I was OK with it because the fire chief told me the stairwell was very fire-safe and had all sorts of anti-fire things built into them.

The office we were in did not seem particularly fire-safe. It just had a balcony.

I know an office fire is super-unlikely, and I have told the other person who uses a chair not to worry about it. But today was a little unsettling.

In other news, I have added my right pinky to bones I potentially have broken. It has been aching for a month or more, not real badly but bad enough.

I also need to add Mom's ankle.

We were on our walk and I saw a dead squirrel. I freaked out because I was worried about Claren biting it. And I jerked my chair away and right into Mom. She claimed to be OK, but ... Stupid Friedreich's ataxia.

Wednesday, November 2, 2011

I should have got off at East Falls Church

I think we have established that subway elevators are bitches.

Apparently the warnings about elevator outages suck, too. Their suckiness turned my half-hour commute into a miserable two-hour slog.

I checked my text alerts on the way home. It said the elevator going the other way was out at the West Falls Church station. There was a running announcement on the train, but I suspect even hearing people find it challenging to decipher train talk. I stuck with the text alert, and it didn't mention any issues, so I stayed on the train...

And got to West Falls Church to find the elevator I needed out of order, in addition to the one for trains going the other way.

A kind woman got the station manager for me after she took a picture of Claren. He told me that the elevator was out.

I called Dad and explained the situation, and he said he;d meet me at the next stop. I went to the next stop and waited. But he went to the next next stop, so eventually I got on the train again and went to the next stop, met Dad and got home.

What I did learn, other than to never trust the texts, was that the elevators that are painfully out of the way are -- shickingly -- unused.

Monday, October 31, 2011

Cursing on an elevator

I am sure the subway elevators have security cameras, but I hope they do not record sounds because if they do, someone may have heard words I don't normally use.

In my defense, total idiots were involved.

I got to the elevator in time to see it heading up, with, I assume, people who could walk. But it came back fast enough and I got on.

Then a woman who appeared to have difficulty walking. Then two people who did not appear in need of an elevator. Then to our full elevator car, a fifth chuckle-head squeezed in.

When we got to the upper level, they shot off, leaving me to get out of the far back of the elevator, where I had been jammed. I did not get to the doors before they shut and the elevator headed down again.

That triggered the blue streak.

Saturday, October 29, 2011

I am jealous of my religion teacher

When I was a senior in high school, my religion teacher told us he never set an alarm when traveling because his guardian angel always woke him up at the right time.

I always thought this was stupid because it discounted your internal body clock, the thing that wakes me up before my alarm most mornings.

Lately, though, I have thought it rather nice, albeit naive.

I wish I could believe God takes such an active role in earthly life. God seems less involved than I was with my aquarium fish.

I fed them, medicated them a little, kept their environment friendly.

Here on earth people die of hunger. I have Friedreich's ataxia, which is still getting worse. I got on the floor today to brush Claren. I was right next to my bed, a super pole and my chair, and I still had to call for help. And it snows in October.

Every damn day something happens that should not happen if a loving God is with us. And I know God exists. I suspect God does care about us. It is awful hard then to buy that God is with us.

That is why I think it would be nice to ignore biology and believe my guardian angel wakes me up.

Thursday, October 27, 2011

It's not that cold, but ...

It is getting cold out. Know how I know?

My feet were numb this morning at work and then they started jerk at will. I finally had to take some Advil just to relax them.

They aren't numb now. They are just really cold.

It is Oct. 27. I am so screwed.

Wednesday, October 26, 2011

Where are they at?

When Velma drops her glasses, she acts like she can't see at all, scrabbles around on the ground and is eventually handed them by the spooky Flying Dutchman, who is really Old Man Conroy in disguise.

I drop my glasses, too, but unlike the star of Scooby Doo, I am neither blind nor able to feel around on the ground to hunt for them.

And my big fear is not being gotten by a ghost but running my glasses over with my wheelchair.

That is why I called my sister (and new housemate) into the bathroom this morning. I dropped my glasses on the shower floor and they blended right in.

She found them, though, no problem. And she wasn't too scary.

Saturday, October 22, 2011


OK, has everyone's head stopped itching? No, I'll wait.

I came back from a nice lunch and visit to the comic book store to finds the DTs (the new house) in full crisis mode. The nephew who had laid on my bed this morning had lice. (OK, I'll wait again till you all stop wigging out.)

A traveling lice technician/therapist/person came over and checked the other members of the household, except my brother-in-law who does not have enough to support a louse, and we all were clear but my nephew had a trying day.

I did, too. My comic book store forgot to pull my issues of Green Arrow for me, and even worse they subscribed me to Justice League International, not Justice League of America. Argh!

Also, I am on my backup Mac because I dropped my nice one and it started making sad noises.

How do I survive? Well, for starters I may go sit on my new toilet, which has a seat warmer and bidet.

Wednesday, October 19, 2011

What a kid!

My nephew reminds me why I love living in my new home. And he makes a wheelchair look comfortable!

Monday, October 17, 2011

Elevator revelation

Finally, I have it figured out: The walking people who use elevators aren't lazy, they're F---ING IDIOTS.

I came to this conclusion today when I got off my train and went to board the waiting elevator. Two walking people slipped on before me. A third was already on, but I give him a pass because he had some luggage.

I said, I need to get on there, thinking they'd make room for me. Nope. Just a little shuffling.

Even louder, I said, I'm supposed to be on it not you! One person moved a little to hold the door open button but did not move herself off the elevator. The guy near the door motioned that there was room or something. I guess he assumed that a) my wheelchair would automatically shrink to fit, and that b) I could leave Claren to take the next elevator.

Eventually, I just waved them away in frustration and got the next one. I learned then why those delicate souls were unable to move: A puddle of liquid kept them frozen to their spots lest the soles of their shoes touch the water.

When you get on an elevator in the metro, it says "Please give priority to seniors and persons using wheelchairs," so even if you ignore the many signs, you really can't miss that the elevators are for those like me.

Like I said: F---ING IDIOTS!

Sunday, October 16, 2011

Why grow up?

Fairly often, I preface a thought with: When I grow up.

For instance yesterday while using the bathroom in Mom and Dad's, I though, "When I grow up, I am going to have a huge bathroom."

I have a better bathroom now in the new house. It is bigger, and will be better once I get used to it and get another grab bar and get the bidet hooked up.

The latter two should happen this week, the former when my stupid body figures things out.

But ... I am 40. I have probably lived half my life, maybe more. I am older than half the people in my office. Why don't I feel grown up at all?

(And it isn't the toys on my bed's headboard. Or the toys in the boxes that haven't come out yet. Those are just symptoms of my feeling like a kid.)

I think it is because lots of people do lots of things for me.

Mom helped me unpack some books and set up the aforementioned toys on the headboard. Dad makes me breakfast and lunch and drives me to work. My little sister lifted all the heavy boxes for me. This morning, she came and got my glasses, which I knocked on to the floor. Heck, my niece and nephew are at my beck and call if I need anything. So is my brother-in-law, though, if I ask for help I have to accept the mocking that comes with it.

All I really need to do in life is take care of Claren and myself. Everything else is taken care of.

Who needs to grow up then?

Friday, October 14, 2011

How not to win friends and influence people

My boss asked me to write a short news release on this fellow employee who won an award, so I emailed the guy and asked him for a quote. He didn't get back to me, so I called him this morning and while I could not hear much, I did hear his busyness and offer to try to get me something.

I decided I better tell my boss I had the release ready except for the quote and I wasn't sure if he wanted to wait or get someone else to call the guy and get the quote.

Instead, our deputy came over and called the guy and got the quote and then wrote up notes from her interview and emailed them to me. And I finished the release.

And then he emailed the quote.

Not hearing is so rotten.

Wednesday, October 12, 2011

Turn down that racket

Another bad thing about not hearing well: My 6-year-old nephew just wandered into my room and told me he could hear my TV out in the other room. I turned it down, apologized, and then he left.

Monday, October 10, 2011


I threw away my autograph of the Baltimore Orioles' mascot today.

Granted, it was just a scrap of paper with "The Bird" written on it, but I have had it for 31 years. I got it at my first Orioles' game.

It didn't take up any room really, but it was the idea of thinning out my stuff. I tossed a bunch of videotapes with stuff from TV, including the first Mad About You. I also am giving away my movie videotapes and a VCR. I an even planning to get rid of some toys and my Doc Savage books.

I just don't have room anymore. And even with the shrinking that took place today, I still have too much stuff. But how can I get rid of my original iMac or my baseball cards?

But I am kind of attached to my stuff. Next week, I may scribble "The Bird" on some paper just to have it back.

Saturday, October 8, 2011

Out of service

I got out early on Friday, but I didn't get home till the normal time.

I got to my subway station, but no one was waiting for the elevators. Huh? Where were all my fellow elevator riders.

Then I saw the signs: The elevators were both broken.

It was a nice day so I started rolling.

And rolling. It turns out I missed one stop because I was on the wrong street. I finally saw the station I was headed to.

I got to that elevator: Out of order.

I gave up then, called Dad for a ride. But by then, it was rush hour so it took him a while to get there and a while to get home.

I still don't know how my other elevator users got home. I hope they had better luck than I. Oh wait, they probably just walked 20 yards to the stairs.

Wednesday, October 5, 2011

No days without an accident

I must be getting comfortable in the new house: Last night I sat on the couch to watch Glee and Reservoir Dogs and this morning I did something stupid and fell.

Our floors are wood -- ash if you are wondering. Every morning I put on my shoes tightly so I don't slide getting out of bed.

But this morning, I didn't tighten the laces and one of my shoes fell off while I was still in bed. No problem, I thought, I'll just grab it again.

Then the part of me that is trying to get me killed spoke up.

You can easily get out of bed, dude, it said. It used "dude" to put me at easy and make me think it was cool.

It then reminded me that the transfers in the bathroom on the no-slip tile are going smoothly. What could happen on the wood floors?

Turns out that ash is really, freaking slippery. I eventually got off the floor by putting my other shoe back on.

To make matters worse, this was the first morning my sister did not get up to oversee my feeding of Claren.

In other news:

  • We did move into the new house, hence my silence. Tired, no Internet, then Glee and Reservoir Dogs are my excuses. The house is a work in progress but awesome.
  • You know what really pisses me off, besides bloggers with life-threatening conditions who stop writing with no word of warnings? Gentlemen who urinate standing up in the wheelchair stall but do not feel the need to either raise the seat or clean their pee off the seat. Special place in hell, guys.
  • Speaking of special places in hell, I got to my subway stop and got to the elevator as seven walkers packed in. One woman, bless her heart, got off for me. The other jackasses just squeezed a bit to make a tiny bit of room for me. Assholes!
  • And finally, a woman came running out of a restaurant as Claren and I walked to the subway and was like, Can I take a picture of your dog? 

Thursday, September 29, 2011

Not with a bang but a whimper

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

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

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

Last night was round 2.

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

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

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

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

That probably qualifies Round 2 as a draw.

Wednesday, September 28, 2011

Does the Hall of Justice have automatic doors?

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

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

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

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

Monday, September 26, 2011

Stupid radiator

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

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

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

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

It hurt!

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

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

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

Sunday, September 25, 2011

Driving under the influence

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

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

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

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

Wednesday, September 21, 2011

Who's that girl?

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

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

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

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

I did meet him officially after the meeting.

Monday, September 19, 2011


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

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

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

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

Saturday, September 17, 2011

Not too deep!

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

At least Mom doesn't.

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

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

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

Still, I figured I better ask Mom.

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

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

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

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

Thursday, September 15, 2011

Footplate of doom

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

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

Like the other night.

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

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

Like the other night.

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

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

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

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

Tuesday, September 13, 2011

I really am lucky

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

Friday, September 9, 2011

Thanks, MetroAcccess, for wasting my afternoon

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, September 7, 2011

Mr. Matt Fantastic

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

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

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

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

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

Monday, September 5, 2011

I am not a wimp

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

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

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

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

Sunday, September 4, 2011

Happy to be in a wheelchair

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

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

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

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

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

Saturday, September 3, 2011

Not much help

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

Tuesday, August 30, 2011

I want to choose

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

In the subway.

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

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

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

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

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

Sunday, August 28, 2011

"I hate my life" sorta

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

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

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

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

Saturday, August 27, 2011

Wheelchairs -- yea or nay?

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

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

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

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

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

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

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

Fitting under tables -- not so cool either.

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

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

Monday, August 22, 2011

An exciting, but gross, fall

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

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

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

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

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

I long for boring falls.

P.S.: But I still exercised..

Saturday, August 20, 2011

Routines are everything

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

At least I do.

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

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

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

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

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

Sunday, August 14, 2011


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

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

I think it got electrocuted by the electric wires.

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

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

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

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

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

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

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

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

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

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

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

Saturday, August 13, 2011

Metro gets its kicks from just driving me down

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

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

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

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

Instead, though, it went up.

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

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

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

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

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

But nothing is ever really easy.

Wednesday, August 10, 2011

Almost there

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

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

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

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

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

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

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

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

Sunday, August 7, 2011

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

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

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

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

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

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

Friday, August 5, 2011

Not as smart as I think I am

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

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

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

Monday, August 1, 2011

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

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

The main thing: I survived!

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

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

Sunday, July 31, 2011

You would cry, too, if it happened to you

One of my nieces was telling me how my 6-year-old nephew started sobbing at the end of the movie Beezus and Ramona because he was just so happy. I know how he felt.

Not that I cried at Beezus and Ramona. I haven't seen it.

But last night, after folks had gone home from my party, Mom gave me a little one-arm hug and said, Nice party.

For some reason, I just lost it then. I started crying and it took several deep breaths to keep me from just total breakdown sobbing. Not sure why. Mom just patted my head until I recovered.

I had never had a birthday party with friends. I am sure Robert was at some of my parties growing up, but he was really my brother's friend. I was just their sidekick, a well-loved sidekick, but still.

I knew people liked me and would come, pretty sure anyway. I didn't really think people would say they were coming and then not show up and it would turn into some awful prank like in Carrie. Really. I didn't. At least not from my friends. My little sister and certain in-laws, however ...

It would be more fun if I heard better. I do OK in small conversations. In groups, whether it is friends or family, I often can't make out the words. I hope no one dares to think my silence is because I am unhappy.

I doubt they do because I often laugh. I may not have heard the story just right, but sitting around people who like me gives me more than enough reason.

Friday, July 29, 2011

Stressed and 40

Today I turned 40. A week ago I left a workplace I loved and co-workers who loved me. Tomorrow I have my first birthday party that includes more than relatives. By first I mean first ever, first in 40 years, etc. Monday, I start a new job. On Tuesday, my employer runs out of money to pay bills.

Most of these things are good stress, but my stomach tends not to know the difference.

Monday, July 25, 2011

GQ: Gentlemen's Quarterly or Gawky Quacks*

Years ago while watching an episode of Will & Grace, I was shocked to see the caption read Grace laughs "retardedly." Really? The caption writer is such an idiot that he or she described goofy laughter as "retardedly?"

At least, though, this was just a caption writer, not a journalist at a major magazine. The caption writer probably did not have editors either. Surely they would have seen the adverb as offending and hurtful and changed it. Plus, our society is better at realizing the power of words. That kind of word usage would never happen anymore.


GQ apparently referred to Boston's fashion sense as "Style Down Syndrome." I say apparently because GQ had the good sense to reword it on the Web. But the editors and writers have not apologized that I have seen, or even admitted that was a bad, offensive word choice.

Bad, bad call.

* There are few bad words starting with G or Q.

Friday, July 22, 2011

Thursday, July 21, 2011

Penultimate farewells

Apparently, Michelangelo was on to something. The last supper may have been serious, but the penultimate one? That was "a real mother of a blowout."

At least that was the experience today at my penultimate day at work.

A bunch of friends took me to lunch at an Indian restaurant. It was cool. Butter chicken is really good. The company, of course, was better. We left about 11, and my party at work started at 1.

We got back at like 1:01, and there was already a bunch of folks gathering.

The head of distribution (my work group) kicked things off. He noted that the people at the party came from print and dot-com and how I was one who really helped build the bridge between the two. He ended by saying that he asked my boss what to say. "Just tell him we love him and'll miss him," he said my boss said. So he ended: "Matt, we love you and'll miss you."

Oh gosh. I was ready to lose it there, but there was more.

My boss spoke, saying that he'll miss being able to turn around and ask almost any question and be confident I'd give the right answer. (Side note: I was totally stumped this morning on getting a printout of a full webpage. And it turned out to be a webpage for my party, which I hope to post later.)

He said lots of other stuff that proves he is a great boss and greater friend. I asked him for a copy of his speech because I knew Mom would want to see it. It passed muster with her.

 He also unveiled my presents. One was the webpage, which I have to get a electronic copy of. It is good. They also had one of our artists do this picture and signed it around the edges. My boss is going to bring those by my house after they are framed. They also gave me a single cup tea maker because my boss will no longer be there to get me water for tea every morning. Then I got a mug and stuff.

I know, holy cow, right?

Then I said a few words.

I had thought about what I wanted to say for a while, but didn't write it down. As I told them: Writing it would have made my leaving more real than I wished. But here is the gist of what I said:

Thank you all for letting me be a part of your stories, both those you wrote for the paper and the stories of your lives. When I look back 10 or 15 years, I can see I am a much better person. I give Claren a lot of the credit for that. What credit she doesn't get goes to all of you. You have all made me a better person. Thank you.

I spoke loud. My speech therapist would be proud. I even made eye contact. I got through it then without crying, though I did tear up typing it and telling Mom. During the speech, my emotions seeped out via my legs, which crept higher and higher as I spoke. At the end, my legs were parallel to the ground.

A friend I went to college with added something then. Or she was before I talked, I forget. She reminded me that one of the nicknames I had at the college newspaper was "Pound for pound, the most powerful man at the Cavalier Daily." (Because I weighed so little, and had a fair number of votes in the organization.) She said that was still true, although I do weigh more now.

Then we all toasted me and had sugar-free chocolate cake and lots of people wished me well.

One of my friends was weepy, and she almost made me cry, but then she spilled wine on me so I recovered. A couple others told me they cried, including one who escaped jury duty for a day to make the party.

The Money copy desk stopped by after the party. They come in later and had gotten me a card and some stuff for me and Claren.

I am making the right choice, I know. Lots of people, not just ones I am related to, assure me I will bring out kindness and friendliness in others. But, gosh, I LOVE THE PEOPLE AT USA TODAY.

(I stole these photos from Facebook. Thanks Emily and Sandy.)

Monday, July 18, 2011

Easy is for wimps

If I only did things that were easy, I might never get out of bed.

I certainly would not transfer to a normal toilet to do my business. My manly parts are cheering this news after being squished this morning when I slipped and sat down on the toilet seat in an awkward position.

I would not stand at a toilet either. Here, it is my head that is cheering. I stood up today, had too much speed and bashed my head into the wall.

I would not have taken a new job either. I am pleasantly surprised that I am looking forward to the new job, but it will still be hard.

I might still swim -- backstroke is not that hard -- but I would not put my head underwater and let someone drag me across the pool and back in five-second increments on my stomach. I certainly would not let the dragger decide to start counting only when my legs were at the top of the pool. Surprisingly, this was pretty neat. Exhausting, and I did suck in some water, and the dragger told the teacher I panic and thrash at the start of every five-second drag -- maybe because I can't breathe? -- but it was cool.

I would not have stayed for the potluck after swimming to celebrate its 20-year anniversary. This meant changing at the rec center -- not as nice as home -- and eating something that totally screwed up my digestive system. But I did get to see my indefatigable swimming teacher whip out her blue fiddle and start playing, leading me to wonder if there is anything she doesn't do.

An easy life would be awful boring.

Thursday, July 14, 2011

Slurry with FA on top

A friend of mine warned me that things will be emotional next Friday, my last day at work, and I am already feeling it.

I was heading out and saw another friend who is off next week. We said our goodbyes and shared a hug and that was it. A good thing, too, because I had started to tear up.

Great, I am falling apart in my penultimate week. That's no good (although I did get to think of penultimate, which leads me to Monty Python).

I speak poorly as it is -- very slurry. For the curious it is known as dysarthria, another gift of Friedreich's ataxia. It gets worse when I get emotional. One of the treatment suggestions is to reduce stimuli when communicating. Like that'll happen next week.

My mouth gets dry and my nose clogs up and makes speaking more difficult. I gulp and laugh and talk all at the same time.

I took some speech therapy where I learned to take breaths after every phrase and SPEAK REALLY LOUDLY (for me). I rarely remember to do it. I am sure I won't next week. I wish I were John Cleese.

Tuesday, July 12, 2011

I'm missed

People at work are still learning I am leaving, and I am flabbergasted at the kindness shown me.

I know I am good to have around -- not just because I work hard but because I am nice, funny, smart, whatever. And I knew my good friends would be sad I am leaving.

But I am surprised how many people will miss me, not my work but me.

It's pretty awesome. Makes leaving hard.

Sunday, July 10, 2011

Working the knees

Today was the first swimming class of the session. It wore me out.

I asked the teacher if we could work on my knees especially.

They are locking up on me when I stand, which is fine when I am standing. But they tend to buckle when I need to lower myself from a standing position. I think that is what caused the recent near-death experience.

Now, after the exercises my legs are tired and jumpy, and I think I will take an Advil cocktail go to bed.

Friday, July 8, 2011

Matt takes a new job when Uncle Sam comes calling

When I was a child, I saw a show on TV starring Kurt Russell (always awesome. I mean, have you seen Big Trouble in Little China?). He played this teenage secret agent. He was always pulling out these cool gadgets, and when his friend asked where he got it, he'd say, "My uncle gave it to me." The uncle was Uncle Sam.

Today I resigned after 12 years at USA TODAY. I love working there, but my uncle called and I came running. Granted, I asked the uncle for a job.

Here is a version of the note I sent a handful of friends:
I wanted to tell you in person, but I lack the powers of Jamie Madrox, Multiple Man (semi-obscure comic book reference in farewell note: Check). Plus, if I told you in person I might tear up. This would make Claren sad. In turn I would try to cheer up, but would invariably make awkward sobbing noises. So email is best.
I am taking a job in the communications office of the U.S. Fish and Wildlife Service. My dad and a grandfather were lifelong civil servants and my uncle works with Fish and Wildlife now, so I am excited. I will be mostly working on an internal newsletter, writing speeches and stuff. They are also switching up their CMS so maybe I will stick my nose in there.
When I started here in '99, I quickly thought I might retire here. I enjoyed the job, but more than that the people were more awesome than I could imagine. Both of those things remain true today, but you are the reason I am still  here. And as happy as I am to take this new job, I'd be lying if I didn't say I'm scared, sad to leave and more than a little guilty for abandoning you. 
Short term, I think that's a huge plus for you. I feel so bad for leaving you, I'll do just about anything I am asked.  
Thank you all for making me a better thinker and a better journalist. Mostly, though, thank you for making me a better person.
PS -- And yes Claren is coming with me.
PPS -- my last day will be July 22. 

Making it even harder was that everyone was happy for me, and when I apologized for leaving, told me I have nothing to be sorry for. (Well except for the one friend who said she was mad because she had just finished her eye makeup.)

I am so nervous but excited, too. I know it'll be fun and challenging, and I know I'll be good.

I think of my grandfather's government service a lot. He got a presidential medal from Eisenhower. Dad worked for the Commerce Department his whole life. My real uncle is going to be on a panel with the Interior secretary. If I do half as well as any of them, I will be a success.

Tuesday, July 5, 2011


Being a tough, yet sensitive, guy, much like Robert Parker's Spenser, I didn't really know how to deal with my near death today.

Sure, I joked about it at work, but when I got a chance to think about it, I was like: Holy Shirts and pants, I could have easily snapped my neck. I told Mom the story as we were leaving and she was quite for a while, so I asked if she was all right. Just trying not to throw up, she replied. That's still how I feel.

I went to the bathroom, and I guess my foot slipped a bit. I did not fall, but I headbanged the grab-bar at full speed. I took most of it on my left eyeglass, which snapped right out of the lens, which broke.

That's pretty much it. I am trying not to think about all the what ifs or the little pains or whether my eyesight is failing so I'll spare you.

I tried working without my glasses but I really can't see. After that I put some paper over the left lens so I could use my right eye. My left eye works fine. It was just impossible to use glasses without both lenses.

One of my friends thought I looked stupid so she made me this. You can hardly tell the difference, can you? I like my friends.

Monday, July 4, 2011

Muscular legs here I come

That crazy-ass dream is actually paying dividends.

In it, I used an exercise bike that required me ride shoeless.

Well, I recently bought a motorized leg exerciser. You put your legs in, plug it in and voila.

Only, not so much voila. It kept sliding away, and my feet kept sliding out.

I had the idea of sitting facing the couch so we could block the exerciser from moving. But Mom had the idea of riding shoeless.

Worked great! I realize the exercise is not as good as say swimming but that starts upp again next week.

Sunday, July 3, 2011

Without help but far from helpless

One of the first times I used my wheelchair at work, a friend and I were headed in together. They knee about the chair and my issues so it wasn't at all a surprise. As we were rolling/walking to the door, she finally said: I'm going to push you because it'll be easier to talk.

It was, of course, much easier. I wasn't laboring to push or watching where I was going.

More important it also made sense to me. She didn't think I needed help and she wasn't just being kind. She had a good reason to help me.

I turn down help sometimes, annoying the person offering. They always offer out of kindness, but I turn it down because I read in their offer a sense of pity or a belief that I am helpless. I am not.

Saturday, July 2, 2011

A real leg show

It has taken the better part of 40 years, but I have finally found love. Or at least a part of me has. And who am I to argue if it is a mite incestuous: Beggars can't be choosers. The part is my legs.

I go to bed like I always do, with my legs not touching. But for the past few months, when I wake and it doesn't matter when, my legs are together.

I think the right leg is the pursuer. Usually, it seems to be the one that moves during the night. I often find it crossing my left leg at the ankle or bent at the knee and resting under my left knee.

I am so confused by this behavior. I hardly ever stir at night. Why now? What is going on?

It is also a pain because I can't tell where my feet are. So I feel something on my left side, try to move that leg, but it is in fact the right foot over playing footsie.

Why does love have to be so hard?

Sunday, June 26, 2011

Dinner table talk

It started with my niece saying she loved au gratin potatoes. It ended with me being the James Bond-esque hero of a comic book with a jetpack in my wheelchair bag..

After the potato comment, her little brother told my niece: Well, why don't you marry it.

I told him that he would then be brother-in-law to a potato, which my niece decided would be a hilarious comic book. She then wanted to come up with some other ideas for comic books.

My sister then suggested they write about the adventures of someone in a wheelchair. She was thinking of the amusing little situations I get into every day, like how my nephew seems to regard me as a chair.

But my niece said: Like if he was a spy. And his wheelchair had all kinds of cool gear.

These are just the latest niece and nephew to have this idea. I am still waiting for one of them to follow through.

Thursday, June 23, 2011

Good doctor's appointment; really weird dream

I went to the cardiologist today who said my heart is fine. He said he could not say for sure but that it was "very unlikely" I would develop any of the heart problems associated with Freidriech's ataxia. As far as the light-headedness goes, he basically said: Watch yourself; you have low blood pressure so you will really feel a drop of 10 points. This was great news, but the dream I had last night was too odd not to tell ...

Last week, when we were waiting to see the cardiologist, I started telling my little sister all the doctors I have seen. I got up to the neurologists and geneticists of NIH and lost track. Last nigh, I got a chance to see them all.

I dreamed I went back to NIH for a follow-up. It was not promising.

I got there and recognized many of the doctors as they introduced themselves. The first test was to ride a stationary bike that also had an arm exerciser. The doctors called in a therapist to make sure everything was safe and I was warmed up. I was hoping it would be one of the therapists I am still in touch with, but instead it was someone who looked like Sue Sylvester from Glee. She proceeded to get on the bike, ride a bit, announce her muscles properly stretched and leave.

Mom helped me onto the bike. It required me to take off my shoes, but I still rode well. I thought I did. The doctors said things like: Is that the best you can do and Not so easy, is it?

From there we headed to another office. I wanted to stop at the bathroom, but there was a baby in there being catheterized or something and a mother blocked the door, daring me to go past her.

I went back later. Holy cow! What a bathroom! It had fountains for bidets and lots of stalls. There was also a row of bike-like devices. But best of all: a self-serve soft ice cream dispenser. It seemed that the women's bathroom did not offer ice cream because several women were in the men's room getting cones.

Afterward, I went back and waited for my next appointment. NIH had changed. It had become kind of a hospice spot. I saw a lot of dead people, mostly older.

That was more or less fitting because when I finally got in to the appointment, the doctor told me there was "substantial" decline in my systems from the Freidriech's ataxia. They had only expected a "moderate" decline so they thought we should get "aggressive" in treating the FA. I don't know what they suggested. It did not involve radiation treatments. At least, any more radiation treatments. They told me that one of the doctors at an earlier NIH visit had treated me with radiation, which they said they do not use anymore. But don't worry, they said. (JUST TO BE CLEAR: Never had radiation treatments.)

That's all I remember. It wasn't all awful, though. I also won a pair of round-trip tickets anywhere in the USA at some town fair.

It was not limited to the continental U.S., and my top four choices were: Alaska, Hawaii, Puerto Rico or a U.S. territory in the Caribbean. It was so weird airline, like Scandinavian Air.

I was trying to decide if I should take the friend who encouraged me to play the carnival game where I won the tickets.

Apparently, I am not going to die because of the light-headedness; I am not so sure about the FA radiation treatment.

Tuesday, June 21, 2011

I want to be Clarence Clemons

For years I have wanted to be Bruce Springsteen. How cool would it be to have people striving to touch you or even your boot? As I read a bunch of the obituaries for Clarence Clemons, I think I may have chosen the wrong resident of E Street.

I know me as a 6-foot-5 black sax player? That would be so awesome.

It was this Clarence quote from the Washington Post's obit (misplayed, buried in the B section) that changed my mind: "Somebody said to me, ‘Whenever somebody says your name, a smile comes to their face.’ That’s a great accolade.”

I don't imagine I will ever be that famous, but that is all I could want.

This is the song I think of when I think of the Big Man.

Blog Archive