The good kind of bitter

People like me

2012-01-29T20:49:00.000-05:00

My brother-in-law put up my last two pictures yesterday -- a painting by my sister and this one.

It was just in time, too, because friends from USA TODAY came over yesterday afternoon, friends who had signed the picture.

It was a really fun time.

I still find it surprising and so lucky that such awesome people are my friends.

I know that changing jobs was the right thing to do for me, for countless reasons. Still, USA TODAY was an amazingly special workplace I am not sure I'll find again.

Me and my big mouth

2012-01-27T21:57:00.000-05:00

I had to go downtown today, and while Claren was better behaved, I may have gotten in trouble.

I got to the main Interior building early and was chatting with the head of our division, who is from Alaska.

I told her that I had talked to a co-worker who works in Alaska, and now Alaska is on my list of places I want to go.

I expected her to say, yeah, it's lovely.

Instead, she says, yeah, we can probably make that happen.

You're killing me, Bruce Springsteen

2012-01-25T22:02:00.000-05:00

When Bruce Springsteen announces tour dates, as he did yesterday, I agonize. Every Springsteen concert I have seen this century, I swear it will be my last.

Tickets are costly, but mostly it's because of my worsening hearing. Except for well-known anthems like "Badlands," I spend the first minute of almost every song trying to figure out what it is. Then I try not to lose track of the song.

But to be there! To feel a part of something, a rock 'n' roll exorcism, I believe Springsteen calls it. It is pretty amazing.

Springsteen has such a gift. He can sing about cars and driving, and someone who hasn't driven in years can swear he is really singing about wheelchairs and disability crap.

But I can't hear anything he says in concerts, and I feel so wretched for not understanding some of my favorite songs.

And if he plays from his newer albums, I am totally screwed. It's not that I don't like them, but he really seems to drown out his words with the music, especially on Magic. And the first release from the new album Wrecking Ball does not sound promising. I can hardly hear the words.

I know my hearing is getting worse. I somehow mistook the name of my nephew's Pinewood Derby car as "Felix Jaguar" when he told me the name "Joe's Jaguar."

In my defense I knew it wasn't Felix Jaguar, but I swear to you that is what it sounded like.

I sort of blame the Seeger Sessions concert for my anguish. That is the only recent tour I have skipped. It wasn't going to be convenient to get to and I thought my hearing made it not worthwhile.

Of course, the Washington Post reviewer wrote of that show: "It was the best live show I've seen in at least five years. (And I've seen a few.)"

Tickets go on sale Saturday.

Swimming is super-cool and really cold

2012-01-23T20:52:00.000-05:00

It felt good to get back in the water. I get in via the children's pool, where the water is warm to hot.

The problem is, though, after we left the kiddie pool, it felt much less good.

I still did about 30 minutes of exercise, doing the backstroke for five pool lengths, walking for two and kicking for two. But most of it was just to keep my teeth from chattering.

Not sure how I'll survive without a wetsuit, which might look too odd.

Exercise: Who has time?

2012-01-21T21:57:00.000-05:00

I am going back to swimming tomorrow. I am not sure it will be enough, though.

My legs are quite useless, worse than they were even a year ago. I have started modest exercises, by which I mean exercises that don't take up hours.

But when I wake up in the middle of the night, I can hardly straighten my leg. And it's not because Claren is sleeping on it or anything. It is like the comforter is too heavy.

I suppose I could exercise if I were wealthy and didn't need to work. But not sure how to fit it in otherwise. I could start exercising, not napping, after work. Of course, the naps are needed for the same reason the exercise is: I am so disabled.

Claren is 10 today; in dog years that means she's freaking awesome

2012-01-18T20:37:00.000-05:00

Actually, I think it makes her like 75 or 80. Yikes! But she still has a lot of years left, I suspect, especially since much of her down-time is spent like this.

Jesus changed the calendar from BC to AD, or if you prefer BCE to CE. Claren has had that effect on my life, which went from BC -- "Before Claren" -- to AD -- "After Dog." It also works to say the "Claren Era" and "Before the Claren Era."

I don't really remember my life in years BC. It was certainly less hairy, less fun, too. I had better control of my body, but I was sad a lot.

AD is better, even though my body is worse. I fall more and face way more challenges but I do not face them alone. I now have a partner who, if nothing else, will shed all over those challenges.

A break from the cold

2012-01-16T19:33:00.000-05:00

Everything was fine until I called Mom to tell I was not taking Claren for a walk because it was too cold.

She said OK and asked if everything was all right.

It was so I said so, but then I started thinking: Is it?

I started feeling so rotten. I decided too walk Claren, even though it was cold, to see if it would make me feel better.

It did a little, and it was't that cold.

A good egg

2012-01-14T22:32:00.000-05:00

My family does remarkably well in anticipating my needs and helping me in my life.

You know who is amazing at it -- my niece who goes to college nearby.

I lived with her family for a summer when she was 2, but mostly I think it is just innate compassion. Sure, she has a mouth that would make a mule-driver blush, but her mother has spent her life in a newsroom.

I can't wait to see what she, and all my nieces and nephews, grow up to be.

Bright lights, big city gonna set my soul on fire

2012-01-12T21:41:00.000-05:00

Claren and I trundled downtown today to meet with the director of Fish and Wildlife. Actually, there was not much trundling, we took the shuttle.

We were headed to the main Department of the Interior building, which we refer to as MIB. Before I knew that acronym, I thought it was kind of cool that so many people wrote on their calendars: "MIB for birds" or whatever. Birds could use the Men in Black.

Alas, it is just a building.

The shuttle has a chair lift in the back and about 15 rows of seats. Claren got on OK and when I was loaded in, I called her to come back to me. She stood up from the second row where she was, looked around and went outside to look for me.

Sharpest tool in the shed? Probably not, but she is cute and fun.

The driver brought her back onboard, and she took her spot in the second row again even though she saw me.

We got to the meeting OK, and the director was making some good points. But no one was paying attention to Claren so she started pawing the director's chair. He laughed, which was good, because I didn't feel like correcting her in a meeting. I may have to, though, if she keeps it up.

We went for a walk after the meeting and the only grassy area was a park where the grass was set off from the sidewalk by a three-inch metal wall. Instead of pooping near the edge of that wall, Claren did her duty about as far as possible from the wall.

I had to loosen my seatbelt, edge out as far as possible and then just managed to snag it. I made quite a sight. I was surprised no one offered to help. I guess I wasn't that amazing today.

Good, but just for a moment

2012-01-11T20:51:00.000-05:00

In a bit of good news, I have concluded that the fall did not make me sad. So I can fall all the time, which is a relief because I already do.

I decided it wasn't the fall because I can't really remember it, but I still feel sad.

It's not like I am drowning in despair. I have had fun with relatives this week -- my oldest sister came down from near Boston to take her daughter back to college and her oldest son joined her. My middle sister was here for a bit, too.

Let me say for the record that I am very glad my niece goes to school near me.

I went to the mall with her and my little sister and had fun. I also learned something odd. All the purse manikins in Nordstrom were naked. If I had no clothes, the first thing I'd buy would be underwear, not a purse, but whatever.

But it is like someone tosses me a life preserver that works great for a little while. But as soon as Game of Thrones is over or the last joke is told, I start sinking.

The bad thoughts overwhelm the good ones. I am not sure why, and I don't like it.

One fall is not the same as the others

2012-01-09T19:49:00.000-05:00

I fall fairly regularly, and while I rarely get hurt, I never know how a fall will affect me.

I fell this morning. Claren was only too happy to speak for help -- since it meant she'd get fed earlier. And my sister came down and helped me up readily.

I was fine -- no injuries, no unwanted pee, no problems. But why then has the fall stuck in my head and left me feeling so sad?

Independence is overrated

2012-01-04T21:46:00.000-05:00

Dad volunteered to pick me up from work today because it was cold out.

He did the same yesterday.

When he said I'll pick you up because it is supposed to be really cold, part of me wanted to say no, I'll get the subway.

But then I thought, I really hate the cold; a ride would be nice.

I don't know if it makes me a bad disabled person to embrace help so often. I don't even try to do some things anymore because I know if I wait, someone else will do what I need -- usually more quickly than I could.

Needed: Masseuse

2012-01-03T21:47:00.000-05:00

I need to marry a masseuse.

My left shoulder hurt over Christmas. I blame an ergonomic keyboard I was trying out.

I went back to the regular keyboard, which helped, but what would have really made things better -- other than a massage -- is not using my left arm for a few days.

That isn't really an option when you use your arms for just about everything from movement to standing to communicating.

As the pain in my left shoulder eased, it didn't disappear. It just moved to my right shoulder, I assume, because I was not using my left shoulder as I normally do and was compensating by overworking my right shoulder.

Now the pain has moved again, to my neck. This time, I assume, I have been compensating for two underworked shoulders.

I'll survive -- I always do -- but it would be ore fun to thrive with my masseuse wife.

Nice neighbors, too bad I can't visit

2012-01-01T21:13:00.000-05:00

Of the seven houses have been built on Gram's property, ours is the only accessible one.

The others aren't just inaccessible, they are downright wheelchair unfriendly. They all have significant stairs to get to the doors or right inside the doors.

And fairly narrow stairways so two or three people cold not carry someone else in a chair in. Big elevators would be needed to get into them.

When we sold the first four lots after Gram died, Mom asked the architect is he ever gave thought to wheelchair users. These houses sell, she was told. In other words, no.

Of course, accessible houses would sell, too.

Go, FA mice

2011-12-31T20:44:00.000-05:00

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.

It's not my Wii skills my nephew likes

2011-12-28T22:18:00.000-05:00

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.

Nicked up

2011-12-26T19:45:00.000-05:00

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.

Bruce should be played in church

2011-12-24T22:00:00.000-05:00

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.

I am amazing, but Claren deserves the credit

2011-12-21T20:57:00.000-05:00

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.

Stander pole: Awesome if you like playing Russian roulette

2011-12-19T20:49:00.000-05:00

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.

The shit of the real world

2011-12-17T21:20:00.000-05:00

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.

More changes

2011-12-15T21:27:00.000-05:00

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.

Go, Montana, cut that disabled hunter program

2011-12-12T21:51:00.000-05:00

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!

Christmas for superheroes

2011-12-10T22:19:00.001-05:00

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, 2008, 2009 and 2010. These posts also have some background. And God must be amused by this because I have not been struck down yet.

A good day, I guess

2011-12-07T20:35:00.000-05:00

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.