Sunday, October 28, 2007

Christine lives ... in my wheelchair

I have never seen the movie "Christine" about the car that kills off people it sees as competing for its owner's attention, but I think my power wheelchair has.

Unlike Christine, though, instead of killing off the people who hurt or disrespect it, my power chair is trying to kill me.


I don't know whether it has heard the talk that I want a new chair or what, but yesterday was a good example.

I was on my way back from the nearest pet store – about 40 minutes for me. I went obstensibly to get a Halloween costume for Claren – I didn't – but mostly because it was as really nice day after all the rain.

We were on our return trip, and I noticed a crappy curb cut that I had bounced over on the way. It was angled OK, but the edge of the sidewalk, the part that forms the gutter, was about half an inch higher than the regular sidewalk.

My bones and kidneys did not want another jangling, so I went down the curb cut slowly, or I tried to.

My front wheels would not go over the raised gutter lip as the slow speed, so I started giving it more and more power. Finally, the front wheels bounced over the lip, but they were turned and we jerked out into the street. There were several cars coming, but unfortunately for the power chair, I stopped before going into their path. It's tough to say if I could have touched one of the cars if I held out my hand.

Fortunately, the closest car was a little white sedan, not a Christine-like red Plymouth Fury.

Friday, October 26, 2007

A boy needs his mother

I don't want to say I miss my mommy, but my bathtub is getting rather full.

I am a big believer in the power of a bathtub to hold anything that needs more attention than I can give,

I actually survived most of the week -- well, rotten trips to work aside. And it is not like I am left alone: Dad and a sister have done a ton.

The tub really just started filling up a few hours ago. I tossed my rain poncho in there because I have no where to let something drip dry. I left the last one outside, and it got stolen.

Then I had to break out my mop for a quick cleanup. But I couldn't figure out how it worked. There was no way to squeeze it out. So I left it in the tub after I wiped up my floor.

I'll be glad to see Mom; she might not be as glad.

Wednesday, October 24, 2007

Driven to drink

I dreamed last night that I was at a cocktail party (that's how I knew it was as dream. I don't go to cocktail parties).

Anyway, I passed this couple who was talking about taking the car keys away from a father and how he would be happy because he would no longer have to deal with the stress of driving.

I wondered if I should talk to them, tell them that their dad won't feel relieved. He'll feel imprisoned. Unable to go anywhere unless he gets a ride, he'll feel dependent and child-like (and not the good kind of child-like with the wonder and whatnot). It'll just suck, I thought, but do not remember if I told them.

I think I was doing a little projecting on my own lack of driving. A friend was having a little happy hour get-together and if I could drive it would have been easier to go.

It was several blocks from the subway, and several caring people did not really think someone in a wheelchair should be walking in that area. I could have pointed out that I wouldn't be walking, I'd be rolling. HEE!

Plus, it rained all day and I didn't want to go for a stroll in the rain. Wet dog smell can't be real welcome in a bar.

Not that I was real sad. I really didn't want to go. It is so hard.

But I worry that if I don't do some things, people will stop asking me to and I will become homebound.

If I could drive, though, it would be so much easier.

And if I could drive, it would mean I didn't have Freidriech's fucking ataxia.

So this went on over night, and then I got on the ride to work, probably the worst one ever. Here is a copy of the complaint I sent, which I also sent to my elected officials:

Hi, I have reported several scheduling problems in the past regarding service, but today's was the worst. I was picked up on time about 7 for my regularly scheduled weekday trip from my home to my workplace half an hour away. We then drove half an hour in the opposite direction from where I was going to pick up another passenger. We then traveled even farther away from my destination to pick up a third passenger. About 8:15, we started to my destination. About 8:50, nearly two hours after I was picked up, we passed my home again on my way to my destination. I arrived at about 9:45, almost three hours after my trip started. My trip is a 30-minute commute. I expect it to be longer since you is a shared ride service, but not three hours. And while part of the lateness could be blamed on traffic conditions, my drop-off time was after 9, according to the manifest. In other words, you knew I'd be on the bus for two hours.

What was once good service has become increasingly shoddy as you cram more riders together, regardless of pickup times. On Tuesday, for instance, my driver had to make two pickups after mine that were within five minutes of my house. Great, you think. But not really, one of the other pickups was not until 8:15, so after being picked up at 7:25, and getting to the second pickup quickly. We waited.

I have had calls after past complaints saying you is looking into the problem, but the same scheduling problems continue. This is far from the "quality transportation services" mentioned in the customers' bill of rights. This just cannot continue. Please let me know what the issue is, why a 30-minute shared-ride trip is scheduled to take 2 hours, why we pick up clients who are nowhere near where I am going, or why we pick up clients who live near me but aren't scheduled for pickup until 45 minutes or an hour after me?

I still feel sick about my ride. I was two hours late to work and was all out of sorts pretty much all day.

My boss brings me hot water for tea every morning, and today was no different. I felt like asking him for something stronger than water.

Dad offered to drive me in tomorrow and Friday, but it is a long way for him and I would not ask him to do it regularly.

If only I could drive ...

Monday, October 22, 2007

Commute with romance

I went to bed early last night, even though I wasn't tired, I just felt rotten emotionally and the least oppressive thing to do seemed like going to bed.

It turned out to be a good thing.

I got on the ride to work this morning. I frankly don't know how to describe my ride. The first part was fine. We picked up this regular rider -- I'll call him dude passenger or DP. Then we picked up gal passenger, or GP, and pretty much all hell broke lose.

If you listened real close, I bet you could have heard the smooth mellow jazz as a simple commute turned into the love connection.

GP was saying she could not find the right man. The driver decided to play Chuck Wooolery and asked her just what she was looking for. GP said it didn't matter if they are in a wheelchair or not, then she asked me how old I was. And then with the driver and DP whooping it up, it ended with me blushing like crazy.

Then DP asked if I'd be single my whole life. The driver answered: No, he'll find a wife.

And this really does not do justice to the ride.

Then a co-worker called in sick, and another co-worker and I each did the same work not knowing the other was doing it. I just wanted to cry.

But I IM'd a friend who made me feel better by listening and being funny and mean to me. So I survived another day. Huzzah!

Saturday, October 20, 2007

Little much?

Apparently, even the good kind of bitter can go over poorly.

No, I take that back. Going over poorly suggests that it did at least go over. What I mean to say is it can fall flat on its face and be horribly maimed for life, or at least a few days.

I sent out an email to a handful of folks at work and got a number of responses. One of them said I could be an honorary overnight worker. Here is my response:

Awesome, because in truth, I have never been an honorary member of anything ... But for some reason I feel pressed to give a Family Guy-esque response.

Awesome, it will be so much better than my stint as an honorary Harlem Globetrotter. Cue flashback of Curly Neal dribbling the ball crazily down the court, through his legs, over his shoulders, etc. He whips the ball to me. It smacks me in the head and knocks me and my wheelchair over and everyone just stares for a minute. Then a Globetrotter dunks the ball and the crowd goes wild.

Pretty funny, huh? The Globetrotters would never out a guy in a wheelchair on the court as an honorary member.

One of the respondents IM'd me and said it was very nice, which was cool, but the email silence was a little deafening (as if I wasn't deaf enough).

Granted, they could have been too busy to reply. But they could also have found that a little uncomfortable. I mean, do they laugh or titter or what?

Thursday, October 18, 2007

Finally, I am cool

I got the news today that I have been waiting for ever since I began tripping over my toes in high school.

No, it wasn't a cure for FA or anything like that. You think God would give up his favorite whipping boy that easily?

And anyway, this is better.

"These days, it's cool to be clumsy."

Hot damn.

Wednesday, October 17, 2007

'Reaper" makes me feel better

Several people asked if I saw "House" last week and were quite glad when I said I hadn't. Of course, that made me annoyed I missed it.

I haven't watched "House" regularly since the first season. Last year, "Eureka" and "Veronica Mars" took precedence. This year, I really like "Reaper."

I finally read the recap on twop, and I am glad mostly that I am not watching "House" anymore. I am a little glad I missed that particular episode, too.

It was about a boy and his dog, although the boy was in his 40s. But I am still a boy and am 36.

Fine ... a guy and his dog. The guy has SMA, and the dog is a service dog. The guy passes out and is hospitalized. Lots of tests, failed treatments and snooty doctor stuff later, the guy dies. Then the dog does.

Turns out Team House was using the right treatment, but the guy didn't take the pills. The dog did. This kills them both.


I am not saying Claren would not eat pills if they were lying on the floor, but I can't imagine a service dog actively stealing drugs.

Also, I get scared if Claren eats a grape (or if I even think she did). I think a service dog partner might check in with a vet after his dog wolfed down pills.

I guess I will just be glad I am hooked on "Reaper."

Monday, October 15, 2007

I think I need more bottled water

My condo posts memos high up above the mailboxes. I can rarely read them but generally make out a line or two. I don't figure I am missing much.

A memo went up last week, and I have been trying to see what it is about. Today I saw it was from the town. I could not read any of it except the bolded sentence "You may drink the water."

Nobody says something like that unless there is reason to not drink the water.

Sure enough, a quick Web search shows that my town "may be in violation of state regulations requiring a maximum amount of bacteria in drinking water."

Let me repeat the refrain to my life: As if I don't have enough to worry about.

And I was going to write a long thing about being asked yet again on my ride to work if I am single.

Sunday, October 14, 2007

A hard day and night

I am overwhelmed.

I can think of tons of reasons why.

The seasons are changing, and somewhere my brain is realizing that I won't be raking or jumping in leaves -- not that I liked raking that much but ... -- or that I won't be enjoying brisk autumn walks -- I needed my hat and gloves last night.

It's getting darker earlier and that always hurts.

I am worried that my legs are losing strength. I have an appointment but it isn't till Nov. 6.

There are others, too, but naming them does not make me feel a bit better. I still feel like my head is so full it may explode. It probably won't, but it feels that way.

Saturday, October 13, 2007

No matter how much they do, it's never easy

Mom said this as we were pushing my wheelchair through the gravel at the wildlife refuge where my uncle/godfather is in charge.

They were celebrating a bunch of things at the refuge, and I went to see all the accessibility features they added. And they added a lot.

Down at the fishing pier, every other station is wheelchair height. There are two ramps leading into their office. All the trails are packed-down gravel.

The gravel would probably be fine if it had rained recently, but it was dusty and my wheels sank into it.

The refuge has done so much to make people in wheelchairs welcome, and it is still so, so hard for me.

Thursday, October 11, 2007

Thank goodness for Macs

I have been thinking that my legs and ankles are weakening because I live in a wheelchair and never exercise them properly.

I decided to get out my walker and use it to stand for like 10 minutes when I was watching TV. My big LaZ-Boy is right behind me, so nothing bad could happen, right?

Yeah, I am stupid.

My first standing was OK, tiring but OK.

Tonight I had trouble standing up, then fell backward after like 30 seconds. I landed on the right arm of my chair and bounced over into the chair.

But my head got turned around and the right side banged into my laptop, which was sitting on a little table to the left of my chair. It flew off but luckily landed on my trash can.

And, of course, because it is an awesome MacBook, the fall did not break it.

Tuesday, October 9, 2007

My legs are worse than jimmy's

Maybe it is a good thing I do not have a lady friend (except Claren) because I would never want to kick a woman out of bed. But my legs ... Well, they are just crazy enough to do it.

They kicked my nephew in the face on Sunday. I lost my shoe, and he retrieved it and started to guide my foot into it. He must have touched something, though, because next thing I know my foot is shooting up into his face.

Even though he is just 2, Joe shrugged it off. Thankfully, because his mother was almost doubled up on the ground in tears as she watched. And yes, they were tears of laughter.

This morning, I put one foot into the shower no problem. The next one, though, decided to take a giant step into the tub. The result: a resounding clang between a knee and one of grab bars, which resulted in a rather hurried sit onto the edge of the tub, which in turn resulted in a thigh getting wedged under the tub faucet. Not too cool.

Now I now people refer to this as the jimmy legs, but I am thinking that this is my chance at eternity: The Matty legs.

P.S. Claren's biopsy showed it was a benign cyst. Yeah!

P.P.S. Happy birthday, Meghan.

Monday, October 8, 2007

I really do like it hot

I said something to mom today that I immediately wished I Could take back. On the ride home, I said: "I like the warm weather, but this is a little crazy."

I said this because it is Oct. 9 and the temperature is above 90.

This heat would be awesome actually ... if I could wear shorts to work. As it is, I get home and am hot but changing is a pain. I miss my pants with zipper legs.

Friday, October 5, 2007

Hakuna matata, well except ...

I am finally back in my condo. It is great to stay at my folks' and be so near my sister and her kids, but being home is wonderful.

Claren seems recovered. I still have medicine for her, but she seems fine. She was so lethargic yesterday and that was unsettling. I know that it was mainly because she had not eaten, but it was still yucky.

Now I just have to wait for a biopsy on this growth on her head to come back. The vet, not my normal one, noticed the growth and suggested biopsying it. I agreed because I had noticed it, too, but maybe I should have waited till things settled down.

Plus, it's my 13,217th day with a crappy genetic disease.

Wednesday, October 3, 2007


Reynolds Price, I think, tells the story of asking God how much more pain he'll have to face. God simply says more.

Let me tell you about my "more."

I came home from work and had to ask movers to move the ramp that was blocking the entrance to my condo. They did, and I went in.

It stunk. Mom and I thought it was just the diaper pail I use for Claren, so I fed Claren while Mom sprayed Lysol. I included in Claren's dinner some rice because she had been having some loose stools.

Diarrhea loose, it turns out. The diaper pail did not stink, so Mom and I wandered around looking for the culprit. Mom found it: several piles of muddy poop on the rug in the back room.

While she cleaned, I took Claren out where she promptly lost her dinner. It ran right through her. I actually was able to bag most of it, which I then ran over on my way back to my condo. You see, to avoid the mover ramp, I went out a back doorway that is at the end of a narrow hall so I was holding the bag close.

Mom came and cleaned my wheel and the walk where I ran over the bag. Then I made a vet appointment and asked mom if I could come home with her. I just was overwhelmed. Plus, Mom and Dad would help if Claren had another accident.

I had to get the movers to move the ramp again and the traffic was miserable, but we got to my folks' house, home. My sister brought her two kids over to say hi, to let me know they cared and to let my niece show off her Supergirl Halloween costume, which may be the coolest thing I have ever seen.

After they left, I kind of lost it. They were tears of joy, though, sort of. I am so loved, and people put up with such crap (literally) for me. It makes me feel guilty and wonderful at the same time.

And my sister came back after dinner, and another sister called to check in and mentioned something about my 13-year-old nephew making out with an 18-year-old. I must have misheard something, but even so I am jealous. And my other sister emailed.

I guess all I can do is follow the advice of my 2-year-old nephew (who may get a Batman costume, which has the potential to be cooler than Supergirl). When my sister told him I was sad and having a bad day, he said to tell me "to take a deep breath."

Tuesday, October 2, 2007

Ask and you shall receive. Yeah, right

I feel God all around me. I know I am loved.

It isn’t enough.

Jesus says to ask and it shall be given you. He says that if you evil humans wouldn't give your child a serpent when he asks for a fish, think how much greater God will give good things to those who ask for them.

Leaving aside the fact that Jesus called humanity evil, I must have missed something. I ask to be healed; I am not healed. I ask not to get worse, I get worse.

So how am I praying wrong? Do I need to use some more four-letter words to get God's attention?

I had an incident at work that required I come home and shower (trust me, no one wants to know more). I called mom and she came right away to get me. I know Dad would have, too.

Are they just too good? Because in my view they sure put my alleged heavenly father to shame. And God allegedly has so much power, yet he can't spare me a drip.

And I know that someone will say my wonderful parents are the answer to my prayers, but they love me unconditionally, prayers have nothing to do with it.

God really pisses me off some days, but I know I am not alone in my anger.

Monday, October 1, 2007

It's beginning to look a lot like Christmas

Or sound like it at least.

On my ride today we picked up this guy who is mostly non-verbal. He just sits there and listens to Christmas carols on his headphones. Sometimes he sings along. He has a pretty amazing vocal range; sometimes he sings in a very deep voice, sometimes in a high one. He never sings in a language all his own.

Some drivers tell him to quiet down, and he does. Not today, not this driver.

She caught a snippet of "Silent Night" over his headphones and joined in. She had a beautiful voice -- she must have choral experience. He was singing he rythym.

It was pretty cool, even if it is Oct. 1.

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