Thursday, July 31, 2008

The secret life of Matthew Mitty

I am having kind of a Walter Mitty week.

Sort of. I just re-read the story to make sure I was correct in my comparison. And well, I am not hen-pecked nor a little misogynistic (although that might be Thurber not Mitty).

I am also not thinking of exciting and adventurous jobs necessarily, just new ones.

I decided I wanted to be an architect after meeting our home designer

On Wednesday, I wanted to gain fame and acclaim as a world-renowned para-equestrian dressage rider.

I went to the aquarium Thursday with Mom, my little sister and her kids, and the trip brought rapid-fire job dreams.

At 11:31 a.m., I wanted to be a dolphin trainer. The dolphin show started at 11:30. Sure, they said you had to know how to swim, but it just looked so fun and cool that learning to swim might be worth it. And the dolphins totally reminded me of Claren. When the treats came out, they often seemed to just run through all the tricks in their repertoire to get the fish.

The best part was when the trainer dived in and was interacting with the dolphin and at the end the dolphin held her feet or something and swam ... fast. The trainer looked like the front end of a motor boat. And the end was cool, too. All the trainers were getting their dolphins to do random stuff. One trainer was doing the twist, and the dolphin started twisting.

But then we started looking at fish.

I have loved fish since I was a kid and my brother had guppies. I worked at a pet store growing up (well, I did after Mom walked into the pet store, which had a Help Wanted sign in the window but had just turned me down, and asked the owner why don't you hire my son?). I had at my peak about 100 gallons of aquarium water flowing in Mom and Dad's. That was cool. And I realized today that I could stare at fish all day. I could totally be an ichthyologist.

I like my job. I am not sure what all these second thoughts are about. And I don't know what to do about them. I mean Walter Mitty ends with him dreaming of facing a firing squad with no blindfold. I don't want to keep my job but wind up dreaming myself dead.

Wednesday, July 30, 2008

Happy birthday

Phrase or two redacted at little sister's demand.

I had a good birthday yesterday even if it didn't start with a visit from the Birthday Bird. Apparently, the Birthday Bird was stumped by the irregular store hours of Great Harvest.

It ended with Mom and Dad playing their grandchildren in Wii tennis. We had atari and all sorts of games growing up. I never saw either of my parents play.

I played a bunch of Wii earlier, learning that I am not cut out for boxing.

Before that the wheelchair technician came by to remove these brackets that daily killed my legs.

The first event was the best. It was a visit with the architect designing the new house. He is good

He seemed to go right along with the jokes of my brother-in-law about dumping my suite in the dark corner of the house and other thing. I am not sure if this is good or bad.

He was a little confused by one of the must-haves on my list for all the doors to be curtains. But my brother-in-law again came to my rescue: You remember the Brady Bunch episode when Greg had his own room with the beads? He really likes that.

Instead of a cool man-cave, I am probably going to get a disco.

The scary thing? I had like four other Brady Bunch references for the house. I was too embarrassed to make, which was just as well, I think.

What I really liked was that he said: What Matt needs for his suits is what we are trying to do with the rest of the house, too. He meant that doors and halls would be wide, not for me but for everyone.

Monday, July 28, 2008

Spur of the moment? Nope

I never wanted to swim until I could no longer get in the pool.

That's not quite true, I guess. I can still get in pools if there are a lot of people to help me or there is a lift. And the community center near work teaches swimming to wheelchair users and has a ramp or a lift.

So it is definitely doable, but spontaneity is gone from my life.

I decided I want to swim today when I watched my niece and nephew take lessons from a college student who I totally did not find cute because that would make me a dirty old man. But I could do nothing about it -- the swimming or the un-cute coed.

I couldn't jump in. Heck, I couldn't even put my feet in the water without significant assistance just to get on the ground and take off my shoes and socks. And I probably would have gotten in more trouble from one of the child lifeguards from Eastern Europe. One had earlier tried to boot Claren.

A friend who uses a chair but also walks some told me that she has gone to get ready to use her pool on her building's roof only to have it raining by the time she gets ready.

It takes so much planning to live as a person with Friedreich's ataxia. I know I have mentioned it once or twice before. And it is not just your life you are planning: You need to plan who will assist you and how.

I guess I'd just like to fly by the seat of my pants, but I am sure I'd wind up with a wedgie.

Sunday, July 27, 2008

I can do it

My brother who uses a wheelchair went to a retirement party last week with his wife. He said something like: "I didn't have to do anything." Apparently, people were helping him with everything.

"You want to tell them, 'let me do something for myself,'" he added before saying that he wouldn't actually say that.

The darn do-gooders he faced that night might have been servers and waiters who are paid to assist people. What do you think or say when the unwanted and unneeded assistance comes from people who aren't paid to do it and also aren't related? (Related people are a whole nother ball game and discussing them would take me into a minefield that could leave me living at a local Days Inn for the present and without a home to live in for the future, so I will put it aside for now.)

I actually had two recent experiences with unnecessary help and I still don't know what to think. On the one hand, I am just overwhelmed at the kindness or grace or whatever that these people are showing. On the other hand, I am like my brother: "Let me do something for myself."

A few weeks ago, my boss brought me hot water for my morning tea, as he always does, which alone shows his kindness. But I knocked the cup over all over my desk. He heard it spill, asked if i was OK (I was), then came around and said I'll get you some new water and clean this up.

I tried telling him I could do it. In fact I had spilled the morning before when he wasn't there and had cleaned it all up with a handful of newspapers and two old napkins.

He would hear none of it. He brought back a big paper towel roll and a bowl full of water for him to rinse the paper towels in. And cleaned it. My intern even tried to get in on the act when my boss was getting the paper towels, offering to help.

A few nights later I was having dinner with Mom and Dad and a cousin and his fiance. I asked her to pass me the watermelon. She did and I grabbed the spoon in the bowl to dish some on to my plate. But the spoon slipped out of my grip, didn't fall out of the bowl or anything.

But she just very matter-of-factly took the bowl and motioned for my plate and served me the watermelon.

Both of these things I could easily do. I would not even break a sweat. Shouldn't I do what I can because there is so so much I can't? But how can I turn away help?

Friday, July 25, 2008

A costly employee

I asked someone at work today if the company had ever repaired the elevator I broke. It has been a while, so I was pretty sure they had.

He told that the company was trying to find a cheaper repair price than $10,000. Really.

I apparently cost my company almost 20% of my annual salary in one brief elevator ride. Not even a ride, all I had to do was go into the elevator.

I know it was an accident. One of my friends says these things happen so they might as well be really big. His biggest mishap, though, involves borrowing paper clips.

I know my company or its insurance can afford to fix the elevator, but I also know that it would be really nice for anyone not to have that kind of expense on the ledger.

I still want to apologize to someone.

Wednesday, July 23, 2008

I kill myself, almost literally

This is a small thing, but last night, Mom said "dammit" when telling me she forgot something. In turn, I said something like "Dammit, Claren, she forgot."

Soon after I went to the bathroom before going to bed. Or I tried to.

I started laughing so hard remembering my "dammit, Claren" that I could not stand straight, let alone relieve myself. Thank god I have floor-to-ceiling super pole in the bathroom otherwise I might have fallen.

Finally, I had to tell Mom I was dying of laughter, then I calmed down and took care of business and went to bed.

Kids sure are funny folks

I went to a local park that was built to be accessible and is awful cool. I almost wish I were a kid in a wheelchair (physically, not emotionally).

I didn't go to play, but to have dinner a friend and her daughters. It was a lot of fun. We ate and then my friend pushed me around as her kids played.

She had offered to give me a lift home, but when we got to her car the kids were horrified. "How's he gonna stand up?" they worried.

Then there's my nephew. He wanted me to go upstairs and see something and his mom pointed out that I don't climb stairs. "If he'd just get out of the chair," he apparently replied.

Monday, July 21, 2008

A nice little breeze

It has been really hot the past few days, and that always reminds me of Granddaddy McCauley.

I don't really remember him at all, and I never know if the images of him that I hold in my heart are from my memories or from some mix of photos, slides and memories of other people. I think it more likely is the mixture because I was just 7 when he died.

I was at just the wrong age to know him: a little older and I might remember him, a little younger and I might have gotten a chance to stay with him a lot when others were at school. This is how my little sister remembers him.

I can almost see him in a chaize lounge outside in long pants, even on the hot days, and hear him saying that the weather was not so bad, there was a nice little breeze. I am certain Granddaddy did not have Mom's voice, but I have heard her talk about him so much that he does in my mind.

Darned if he wasn't right, too. Any time I am outdoors, if I can find some shade, a little breeze comes along to revive me.

Saturday, July 19, 2008


I watched three hours of TV after my Nero incident.

First was Joan of Arcadia, in which Joan begged God to let her paraplegic brother walk again. God alleged that she (God was in the form of a little girl) put a lot of thought into the universe and its rules and now played by them. Handing out miracles showed favoritism.

Now I now Joan is not canon, but my problem then is what gives with Jesus? He showed favoritism left and right.

Next I watched Doctor Who, in which someone sacrifices herself for the greater good. We have to wait till next week to see if her sacrifice pays off.

I finished my evening with a totally silly and funny Psych.

I then went to bed and got up 12 and a half hours later.`

Friday, July 18, 2008

If only I knew the violin

The house was not burning and I was not fiddling, so I guess technically I am not like Nero. But as I threw the ball to Claren tonight while a load of urine sat on the floor of the bathroom, that is how I felt.

I did not have much choice; no one was home and I could not reach the mops and rags. That did not make it any better, though.

I was off Monday and Tuesday, but I started feeling rotten as soon as I went to work. I was not sick but having issues keeping food in my stomach for very long. I think it was stress, a schedule change and some pork.

I was also supposed to go to a memorial service tonight for someone who raised service dogs.

I canceled that this afternoon, came home and fell asleep with one shoe off.

Mom and Dad went to a friend's for dinner and just woke me to say they were leaving. Dad asked if he should put my shoe on and I said I'd get it. Then I dozed off again.

I woke up and tried to put my shoe on, but it required all sorts of gyrations and I soon had to go the bathroom badly. When I got my shoe on, I transfered to my wheelchair and headed in. I ran into a chair, which slowed me a bit, and then grabbed the bathroom door but it slipped out of my hands. I got in finally, but it was too late.

I was going in the middle of the floor and there was nothing I could do to stop it. Really. I attempted squeezing things, but then what?

Finally, I finished up and I was able to transfer to the shower, where I took off my dirty clothes and cleaned up. I cleaned up despite having maybe a centimeter of soap in the shower. I tried to call my little sister, too, but she was out.

I then had to go get some clothes. And then I went to play. Well, first I made sure I could not fit into the laundry room to get the mop and stuff.

My sister called back and I just asked her to get me something when she came home. She wouldn't, though.

She insisted on cleaning it up herself.

Wednesday, July 16, 2008

Claren and I need to go on vacation

My 3-year-old nephew molested my service dog today. I got harassed at the bank, but I suspect it was more traumatic.

My nephew came down from a bath at Mom and Dad's all wrapped up in a fuzzy towel. He walked up to me and said "viola!" as he threw his towel off. I suspect his mother had a hand in that but not what followed.

He "voila'ed" Mom when Claren was right in front of her and got a start when he felt Claren's tail on his loins. After the initial surprise passed, my nephew realized he enjoys the feeling of a dog tail on his nether regions and kept moving so Claren kept brushing him.

I made sure to take Claren out after her traumatizing experience so she could roll around in the grass. I wish someone had been there after my trip to the bank to help shed the creepy.

I just went in to confirm that an account was closed. It was, my banker said, then she asked if I had looked into the information she had given me earlier. It took me a while to figure out what she meant then it hit me: the pyramid scheme of health, stem cell enhancers.

I gave some non-commital answer and she kept after me. Finally, I told her that I thought creating more stem cells was probably a bad idea for me because my cells, and I assume my stem cells, are screwed up at a genetic level. Of course, she had the answer: A daughter of a friend blah blah blah. So what do you think, Matt? she asked.

I told her it was not for me and she asked why. I told her there was no information about negative side effects. She seemed to buy that and let me leave. I am sure next time I am in there she will have the answer to that, too.

What really bugs me is I can't say to her LEAVE ME ALONE. I don't know why it is so hard for me to be rude. But it is not even rude; she is the rude nerd with her nosiness. It is not flight or fight; this woman was not threatening me. I'm not even sure she could take me and Claren, although she probably is juicing on stem cell enhancers. We could at least get off a good yell before she hulked out probably.

Probably all of my sisters will want me to get her fired; my little sister definitely does. I wish I could do that. But she can say she was just trying to give me a better life, no matter how misguided it might have been. And it is such a hard economy out there; I would not be able to sleep if I got someone fired. Just because someone is a jerk does not mean he or she is not a person.

But I am taking the rudeness on me, rather than letting them bear the responsibility for it. And what if she does this to someone else? Someone not as supremely well-balanced as I? She could hurt them. Her products could turn out to be little better than some gunk from a medicine show.

I just don't know, and if I did go out and roll around in the grass, I'd just get lots of mosquito bites.

Monday, July 14, 2008

I root for the coyote

A few weeks ago I got an e-mail from a friend of mine. She said she was listening to a coyote howl and was thinking "Matt would think this was cool." She was totally right. I don't get out among wildlife much. Seeing deer along the toll road is always a highlight for me, even though deer are about as rare as mosquitoes in Northern Virginia.

What is even cooler than the coyote, though, was that she thought of me. Me?!

My biggest fear, bigger even than getting fired for breaking an elevator, is that I am out of sight out of mind. I remember someone telling me about some get together and saying something like "We should have invited you."

Even family members, who I totally know think about me, are not immune from my paranoia. When one says, I'll call you tonight, and they don't for whatever good reason, I have been known to freak. And not in a good way.

I am getting better, a little, sort of, I think ...

My sister and I made plans to go see Wall-E
with her kids today. But her daughter got pink eye so we didn't go. And I am OK with it. Even though I wanted to see it, really bad ... My niece's eye wasn't that pink either. Maybe she is just weaseling out of going somewhere with her uncle. Or maybe my sister is making excuses because she doesn't want to think about me, let alone be in public with me.

Sunday, July 13, 2008

The Nats lost

My sister-in-law asked me if I was going to call today an adventure with my brother and sister-in-law. When I told her no, she wondered if I would call it a misadventure.
No, again, I told her. Today deserved a four-letter designation.

We went by subway to the Nationals baseball game at the new park. It is lovely, but apparently three people in wheelchairs cannot sit together unless there are two people with them using normal seats. At the park, there are plenty of spots for two chairs and one chair, but not three, at least not together.

So my brother and sister-in-law sat in two wheelchair spots, then there was an empty seat, then a post, then me and Dad in a regular seat.

At least the seats were under cover because it was hot and sunny. We were spared the sun but it was still so hot my sitting region felt like it was drowning in sweat. And of course, I can't get out of the pool.

The Nats are a bad team, too, which is OK. But the announcer tells the fans to stand and honor the flag, and it is the same as at Mass. I feel like shouting back: "Don't you think I'd like to, jackass?" At least at a ballgame, they might not hear me; at church everyone would.

Also, I left Claren home, on purpose. Stupid.

The trip home was almost entirely a cornucopia of crap, a broken wheelchair here, a wrong turn there, to top it off: a broken elevator at our destination stop.

Dad went up, got the car and met me at the stop near home. My brother and sister-in-law rode one more stop and went back to get to the original destination to get a working elevator on the other side.

The trip was saved by a cute gal waving at me when I was waiting for the elevator at my final stop. I finally realized it was a friend from work. Not to blow off my relatives, seeing non-related friends always energizes me. Imagine if she had come to the game with me.

Saturday, July 12, 2008

Dad, God and I are in trouble, 'Joan' is back

I need to get cable in the family room at Mom and Dad's ... for the sakes of both Dad and me.

It is usually not too bad in the summer because most shows are on break and all I really watch are shows that come on late, so Dad just goes to bed. But yesterday I discovered that Sci-Fi is running Joan of Arcadia reruns at 8 on Fridays.

Sci-Fi is showing the first season, when Joan was consistently good, not the second season when it became less special and started getting called "Joan the devil slayer" near the end. The first season was so good that I even was willing to overlook that a guy just out of high school could become fact checker and then reporter for the local newspaper. Journalism -- it's so easy anyone can do it! No training or editors required.

The pilot episode was last night.

I said for Dad's sake because he is more a Law & Order guy, with shows wrapped up in an hour. He doesn't like things that are serialized and he doesn't like shows that rely on unknowns and unsolved mysteries.

I said for my sake because this show, with God and a wheelchair user (the journalist), always makes me want to cry.

Here is what had me fighting tears last night (I got the transcript from here):

Thinking of her son, the wheelchair journalist, Helen, Joan's mom, asks a priest who is out in a parking lot collecting money - What is God thinking?
Priest - Excuse me?
Helen- What's He thinking? Um. What's He up too? You know, the parking lot version.
Priest - Well, it's not really something I'm prepared to answer.
Helen - Why not, you got the collar on. Says to the world you got some sorta handle on it.
Priest - What you're asking is complicated.
Helen - Well, give it a shot. Starting with why He lets people suffer? (The priest struggles to find the words) I'm putting you on the spot. Um, I'm sorry. I'll just be going. (Helen starts to walk away, then turns back and puts more money in the basket. She is nearly crying.) He's a father right? He's supposed to be a father. What father wouldn't fix his kids problems if He possible could? And He's master of the universe, so He's pretty capable. Is He out of ideas? Is He bored? What?
Priest - Maam, I can see youre in a spiritual crisis. (Helen laughs) and if you would like to make an appointment, you could come down to my parish, I would be more then happy to.
Helen - (cutting him off) No, no. I'm sorry, I'm pretty emotional right now. (She starts to walk away) Good luck with the homeless.
Priest - No, wait. Look, I'll pray for you.
Helen - Really! What will you say?
Priest - Help that emotional woman from the parking lot.
Helen - Ok. Sure. (She walks away)

Instead of crying, I opted for: "FUCK, yeah, Helen!"

Friday, July 11, 2008

Not small enough

When Claren is not with me, I feel smaller and less significant, both physically and emotionally.

Almost everyone says where's your dog, even people I don't know. And they ask immediately, not at least looking at me to see if I look vaguely OK. Which I don't without Claren.

I definitely am physically smaller and I don't have to worry about crushing her with my chair, although I am still apparently not small enough to walk down a hall with a friend as I tried to do Thursday.

I drifted over and smacked a barrier with my chair, running my chair's controller up on a railing.

Fortunately, this time I didn't break what was a glass barrier.

I am glad Claren recovered and was at work with me today, although as I got in the elevator to ride home, I went too fast and came darn close to breaking another elevator.

Wednesday, July 9, 2008

Dreaming of NYC

I sent my RSVP for that book party, saying I just could not figure out how to get to NYC. Mom argues that that is not exactly true.

In the book, the guy yells at his dad for not being there to help him through life. I told Mom I am similarly mad at myself because I cannot count on my body for basically anything, such as easily getting to NYC.

Mom was not buying the comparison. She said that I could get to NYC ... if money was not an issue.

In a way, she is perhaps correct: If I did not mind spending $500 to $1,000 for a weekend, I could fly or train up, stay in a nice hotel and return Tuesday.

But I will never be rich enough to disregard the extra costs I must pay because of my shiftless body.

A friend of a friend had this status update on his Facebook page: "is thinking about going to NYC one of the next two weekends. Got a couch I can crash on? :)"

How many people have a wheelchair-accessible home and bathroom? Even in my family it is not the norm.

I don't "crash." I wish I could, though. I'd also like to drive and to walk and to run and maybe a pony.

Sunday, July 6, 2008

The big question

How am I supposed to not be tired of sitting in a wheelchair all day?

I was agitated last night, unable to get comfortable or find something to do before bedtime. I was sick to death of being in this chair. I wanted to stand or get on the floor or anything but sit in my chair or anything else.

Put me in coach

Dad put a drawing at the foot of my bed. It is from the 1982 NFC championship game when the Washington Redskins demolished the evil Dallas Cowboys. It shows the offensive line paving the way for John Riggins, who is shown as a tractor-trailer.

I must have looked like an offensive lineman when I went for my trike ride yesterday. Well, except I am not 6-foot-6, weighing 300 pounds. Actually, the only linemen-ish thing was that my feet were wrapped tightly in ace bandages.

I talked to a therapist about how my ankle splays when I ride, and she suggested an “AFO.” This kind of brace should help, but the wraps did mostly the same thing. They kept my ankle from giving out, so it was a good ride.

I want to get some new bike shoes, more high-top than my current shoes, and with the fancy laces that my new shoes have. You just pull them up and they lock, kind of. And I want to e-mail this guy and see if he uses any kind of braces, but I am more hopeful about riding than I have been in a while. Not that I'll be setting any speed records.

Friday, July 4, 2008

Yankee Piddle Dandy

As the country commemorates its freedom from tyrannical kings, I too am celebrating a liberation, too: from a tyrannical bladder.

Ever since I moved back home, I have been having to get up early in the morning to use the bathroom. And it is on the other side of the house. And urgency is a definite issue. It hasn't always been a leak-proof morning is all I will say.

Part of it is that Dad takes out Claren in the morning so I can sleep. This is great, but my stupid bladder misses that early-morning purge.

Like John Adams and the other founding fathers we took action. We ordered a urinal to keep by the bed. And this morning at 5 a.m., I used it.

Not that it is easy to pee when lying down. I may ask my 3-year-old nephew for tips. I was lying there, the urinal and body parts in place, and I was too nervous. I was screaming at myself to relax my muscles.

It reminded me of this test I have had twice. It involves a catheter, which fills your bladder so the doctor can see any trouble spots, like an Iraq in your bladder. You are supposed to tell them when you are full.

The first time I had it done was in a hospital and there was a friendly doctor who was marveling at my capacity. I told him I was full and he said, OK, just go. Talk about unrelaxed muscles. There was only a catheter down there. Finally, they hit me with a sedative and that apparently solved the issue.

The other time was in a doctor's office. No drugs in sight, except for a little numbing agent to get the catheter on it merry way. Again, I said I was full and the doc said just go. It didn't work then either.

Finally, I relaxed enough this morning and as I peed I hummed the Star Spangled Banner.

Thursday, July 3, 2008

Movin' on up

I got invited to the book release party of that graphic novel I wrote about recently Too Cool to be Forgotten. I think for the first time in my life I want to go to a club in NYC. Heck, it might be the first time I wanted to go to NYC period. But it is next Monday at like 5 so I doubt it is in the cards.

I guess someone related to the book saw the post as I have no contact with its publisher. That's kind of cool.

Blog Archive