Sunday, August 31, 2008

I'm itchy and I don't know where to scratch

I have no doubt the above title, taken from a blues song on a tape one of my uncles gave me, has a very high sexual connotation. But this is Matt we're talking about. Get real.

Surprisingly, I am not referring to the many bites from the f---king mosquito horde that lives around here. I cannot remember getting bit in such odd places before, fingers, thumbs and other places with essentially no blood.

But no, that wasn't it ... unless the damn mosquitoes have figured out a way into my body. My heart or brain have felt all itchy since Friday. I haven't felt like sitting still and writing (It is taking a lot to write this. I have already gone online to find the song, then download a few from iTunes and listen to them.) I haven't really wanted to watch TV either. I want to do something, go somewhere, be with someone or a group.

This is the challenge: figure out how to invite people to do something when I do not have a home really that people could come to and when I do not like to go out because it is so freaking hard to go out. And I am having to fight against my FA and almost 40 years of shyness. Plus, maybe internal mosquitoes.

Wednesday, August 27, 2008

Of all the bathroom stalls ...

Two people stopped to make sure I was OK when I was waiting for my ride outside the garage. One offered an umbrella because it was spitting drizzle; another actually sort of offered me a ride home. That sure was cool. Why was I outside waiting for my ride?

I left work 10 minutes early to go to the bathroom on the way out. I got there and found some joker in the wheelchair stall. In his defense, there were only five other empty stalls. I actually contemplated saying to Claren, "No, I didn't really have to go to the bathroom." I didn't, though; I just went outside to await my ride.

Sunday, August 24, 2008

How to get clean

I spent most of this morning trying to figure out how to get clean without having to get out of my chair or expend any energy.

Calvin once suggested a vacuum cleaner, but I don't think that would do much for the stinky, dirty feeling. It also would not be the answer for removing dead skin cells.

Garrison Keillor recently wrote an essay about being bathed. This had some appeal, but I'd still have to get out of my chair and out of my clothes. Plus, I might kick my bather and she would also be rendered into a quivering pile of jelly by the cut of my jib.

So I went to shower. What could happen, I reasoned.

Famous last words. I fell getting into the shower. Well, no, not really. I do not consider it a fall unless I lose my grip on whatever I am holding. I never did. I just missed the shower chair, wound up on the floor of the shower and had to call upon my herculean reserves to get into place, then spent a few minutes catching my breath.

I may need to take a second look at the vacuum cleaner idea.

P.S. And later, in the same bathroom, I broke the controller off my wheelchair.

Saturday, August 23, 2008

Friday night's not all right for crying

I can recall really really crying just three times in my live, not counting sad events like Gram's death. I don't mean getting teary-eyed. I mean weeping and moaning, uncertain the crying would ever stop and not really caring. Not surprisingly, they all were because of Friedreich's ataxia.

Very surprisingly, last night did not become the fourth.

When living in Winston-Salem, N.C., I lost it while on the phone with my oldest sister and once with Mom. That was awful. I kept saying I'm sorry and taking deep breaths to calm down, but the breaths let sobs and wails escape. My sister claims she owes me because I used to talk to her on the phone while she was having a miserable time in grad school. She has more than repaid that debt.

Mom ... I just hope she never tries to collect on me. She bore the brunt of crying spell No. 3. That one, at my condo in Herndon (still for sale by the way), came about as I cursed the concept of fairness.

I am not sure how I held back Friday. I know I was so afraid that if I did start crying I would never stop. I couldn't stop the tears, but I did my best to ignore them and the anguish.

I fell. Not that shocking, but it was. I haven't been falling much lately, but I did this week in the bathroom at work and then Friday night.

And it hurt. I was getting into my chair in the living room from the floor, and I was standing in front of it with my legs bent. I remember thinking, Now just straighten your legs, then it all went to hell. Maybe my legs did straighten, just too fast. Who knows? Before I knew what was happening, I fell against this big old armchair. My head bore the brunt. The left side smacked the arm and the back rammed into the wing. I was just lying on the floor when Mom came in to check on the noise. I knew I was OK, but the insides of my head felt all sloshed around and it was just so damn frustrating.

I told Mom that you think you can get used to FA and deal with it, but you really can't. I can't anyway. I guess that is why I have people I can cry with.

Friday, August 22, 2008

What does Mom know?

Last night as I was going to bed, Mom brought up this cheery thought: Have you given any thought to making a will? (She really did.) She suggested that it would be a good idea to prevent issues with the house my sister's family and I are building.

I guess she has a point, but we're not there yet. Not that it is my fault.

We had our second meeting with the architect, and let me just say: I am in the tank for him. The house he proposed was like a cross and my room were in one the arms. I told him he could start tomorrow. My sister and brother-in-law had some changes in mind, though, so we aren't starting tomorrow. Jerks! (Just kidding.)

I always thought the big issue for my will would be who gets my comic books. I mean the Mego action figures could cause a minor ruckus, but just a minor one. I was content to let these issues sit unsettled because I just didn't know. But now I will have to lay everything out. And I'll have to name heirs and beneficiaries, even though I don't feel 37, let alone near death.

I will have to apologize to my brother for removing him as my 401(k) beneficiary. We were each other's beneficiaries, but then he went and got married. Who knows if I am still his beneficiary?

Who gets my bitterness?

Monday, August 18, 2008

I could be cool

With my nephew on his way to college tomorrow, I wonder how my own life might have turned out if I had answered one question differently.

My first night, I was in the bathroom, and one of my party-hearty neighbors asked me what i was doing. I did not know at the time he was a party-hearty guy, just that he was a neighbor asking me about my plans.

I told him I was just going to go to bed after a long day. He said he understood and we went our separate ways: Me to a college career where it took me almost two years before I started enjoying myself, him to drunken parties, fraternities and girls.

I have always wondered: What if I asked him if I could go out with him.

Friday, August 15, 2008

You know how hard it is not to stare at breasts?

Actually, not too hard, but I wanted your attention.

I have mentioned my blessing and curse of being in a wheelchair, which puts me at eye level with gals' chests. But a new trend is developing.

Thanks to a confluence of fashion, bad hearing and a cute dog I have found myself recently on the receiving end of more than women want to show me. I assume.

The women, wearing loose shirts (the fashion), bend over to talk to me (the bad hearing) or pet Claren (the cute dog). The result is that all of a sudden my eyes are now staring down the inside of a loose shirt.

Being a gentleman, I don't look, but it is hard not to stare at breasts. Not that way. But just try obviously not looking at something. I feel like it is crystal clear what I am not looking at and I feel like a buffoon. It is like Austin Powers with Fred Savage's character "The Mole."

I swear, breasts are nothing but trouble.

Thursday, August 14, 2008

MMM, doughnuts

One problem with people doing things for you on a regular basis is that when you don't want said thing done, you have to explain why.

For instance, today is doughnut day at work. Each Thursday morning my boss brings me a maple frosted doughnut from the box that is brought in for everyone. The only time he doesn't is when he has to bring doughnuts, then I get a chocolate frosted.

He brought the doughnuts today so the first time I saw my boss was when he dropped the chocolate frosted off at my desk.

The only problem: I did not want it. I am having issues with my stomach this week. It might have something to do with the early shift I am working, or any of the other ninety-leven issues running through my brain (a condo for sale, a house to build, Friedreich's ataxia, a dog who is having sympathy stomach issues or maybe I am the one having the sympathy issues in some twisted O Henry dealie).

Whatever, the last thing that I really wanted was a big honking doughnut no matter how tasty. But if I tell my boss that I don't want it, he will ask: Do you feel OK? If I say yeah but I am not in a doughnut mood, he won't believe me. He knows me well. And if I say no, then I am a pariah at work ... like Typhoid Mary, even though FA is not contagious.

Stomach be damned (it already is anyway); I ate the doughnut.

Monday, August 11, 2008

My bowling shirt

My little sister was mad at me for not writing more about my bowling evening. Here is something: Everyone liked my T-shirt.

Lucky Strike Lanes has some weird attire rules, including one banning motorcycle club colors. But I threw caution to the wind and wore the T-shirt my brother and sister-in-law gave me for my birthday. Unlike the disputed podiatry exam, the T-shirt was my sister-in-law's idea. That's what she said.

It is from a company called Apparelyzed, and it shows a picture of a handicapped parking permit. It says "I'm only in it for the parking."

The website has a bunch of other good shirts: "I'm disabled, not deaf," "If you can ssee my butt, please put me back in my chair" or "Hop on, Baby."

I also like "Keep staring, I might do a trick" but that one is really close to being bitter bitter.

Your sin is forgiven

Mom and I went for a walk tonight and she was telling me how she still feels guilty about not picking up some dog poop when she walked my uncle's 20 years ago.

We were walking/rolling down Greenwich Street, when I looked down and said: "Speaking of poop." I had just rolled through a pile of the stuff, which was sitting in the road. Of course, it smushed into my wheels.

I guess that is what they mean about the sins of the parents being visited on the son. Except Mom was the one who cleaned it off when we got home, Mom and my little sister. I think it at least absolves her of her 20-year-old sin.

Sunday, August 10, 2008

Too old for this

I went out last night with a handful of folks from work. I was easily the oldest ... probably by close to 10 years.

It was fun. I didn't bowl but turns out I could have. Everything was surprisingly accessible.

Afterward, some folks, me included, just sat around at a bar table in a pedestrian mall and talked. And talked and talked. I missed a lot but still enjoyed it. I had to leave because I was so tired. They were still going strong.

Friday, August 8, 2008

She must have been really good

A friend of mine says that if you are good, in the next life you come back as a dog. If you are really good, you come back as a service dog.

Claren, like most service dogs, leads a beautiful life. She gets to go almost every where with her good pal and alpha dog, me. She spends a lot of time napping or playing or eating. And she is so adorable, people chase us down the street just to meet her.

Mom and I were walking around the block, and coming down Highland Avenue we passed a house where a whole family was out in the yard. We kept walking and while we were crossing Pine Street this woman came up behind us holding a little girl about 3. Can we meet your dog, she asked.

Claren was not wearing her service dog vest so I said OK, and the woman put down her daughter and went to say hi in the middle of Pine Street. I kept moving till we were near a corner and had Claren sit and then the mom and daughter just pet her and said how pretty she is.

I assumed Mom knew the woman, but then Mom said, do you live around here. The woman said yeah and that they were the family out in the yard and the girl saw Claren pass and wanted to meet her.

Wednesday, August 6, 2008

Buy my condo

My condo went on the market today. I saw the pictures and almost regretted moving. It looks nice. I just hope it sells super-quick, like tomorrow. Then I can buy Mom and Dad an anniversary present.

Monday, August 4, 2008

Do I move to Nevada?

I have perhaps an unhealthy interest in Nevada's ladies of the evening.

But come on, prostitution's legal there. A crime in 49 states is just business in Nevada. How crazy odd is that?

One of the victims of this obsession is my friend who lives in Reno.

I IM'd her once to ask if "hookers" is proper terminology for a legal profession. "You can put lipstick on a pig, but it's still a pig" was her reply. And when I saw a story about high gasoline prices hitting Nevada brothels, I naturally had to express my concern for her state.

I am sure it is all old hat for her, but to this naive little East Coaster it is just lunacy even though I know it is not like there is a brothel inside the local McDonald's. It's still like that Seinfeld where George does the opposite of everything and gets a job with the Yankees.

My friend got back at me, though.

She told a mutual friend who was visiting Reno recently to tell me that he had not seen a prostitute in his tour of the city. He did tell me ... along with a handful of other people on an e-mail list.

He did, however, get asked by the cab driver on the way from Reno's airport if he liked to party and wanted to go to the Wild Horse, "one of Nevada's classiest adult entertainments resorts."

How crazy is that?

Sunday, August 3, 2008

Christmas comes early for Mom

Mom has been badgering me for a while now: Why don't you go to the podiatrist to get your toenails cut? Your brother does.

I love my brother like, well, a brother, but he is only going to the podiatrist because his wife is making him.

My brother, who also has Friedreich's ataxia, also has health insurance. Don't get me wrong, I have something that pays some of my medical bills, too. It just isn't very reassuring to me.

It costs $40 just to go to a specialist, any doctor other than my primary care physician. That's $4 a toenail.

Mom bought that argument but said I should then let her cut my nails. Whatever, Mom.

She said I could really hurt myself, but I use clippers not scissors or a blade.

I finally gave in, though. I could not think of anywhere to cut them myself in my folks' house. I hope Mom is happy and is not expecting a Christmas present now.

Saturday, August 2, 2008

Even asleep, I am f---ng clever

Even Mom knows the phrase "get [the hell] out of Dodge," a reference to Dodge City, Kan. Gunsmoke's Matt Dillon was the lawman in Dodge and he used some version of the saying on bad guys.

I dreamed last night that we were on a family trip in the wheelchair-accessible Dodge Grand Caravan. We arrived at Busch Gardens and people were getting out. One of my nieces was not paying attention so my little sister said to her daughter: "K tell E to get the fuck out of the Dodge."

I don't know who was more shocked when I retold it this morning: Mom when I used the f-word or my little sister for retelling it in front of Mom.

Into the danger zone

My little sister pushed me far outside the comfort zone yesterday, but it worked out well and was fun even if I missed the Dr. Who season finale and had to stay up till 12:30 to watch the rerun.

It was sad, too, leaving me teary at the end as all the Doctor's friends went off with others and he was left alone but soldiers on.

The evening started with what was just a little get-together at my sister's (yes, right next-door to my parents), two other couples with their kids. Nothing big, my sister had told me, we'll just order pizza.

And we did, but then one of the couples had to leave to put their kids to bed. They live like three houses away so everyone else was like: Oh, we'll just bring the pizza to your house.

I said OK, I'd go but even as I said it I was getting scared and worried. I am using my power chair a lot nowadays so I was thinking: What if the backyard is inaccessible, what if I get bored, what if I have to go to the bathroom, will I get to see Dr. Who?

No one seemed to worry, so we went. The backyard was no problem, but people were up on a deck that was up six stairs. My sister offered to run home and get my manual chair so the guys there could lift me on to the deck. I did not want to, thinking I might want to leave to see Dr. Who.

That seemed OK. People sat on coolers or the steps or broke out lawn chairs and we sat in the yard. People brought me pizza, Claren water, and just made me feel comfortable.

I did not even go home early to watch Dr. Who even though it would have been easier to hear the Doctor and his gang; they have close captioning.

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