I miss the guitar I never played

I have been writing since Christmas, but I have not been happy with the results mostly. I also have spent too much time working on my computers, hence my pathetic blog silence. Until now ...

I finished the Christmas season having spent less than $100, including a $200 gift from Claren that we ordered last night. She bought me some computer stuff for my Mac at home. It was a surprise for me, mainly because I had not planned on Claren buying me anything.

But I got an unexpected $250 check last night at dinner from my nephew (actually from my brother-in-law, but my nephew gave him the money).

I didn't really want it.

You see, the check was for my 1972 Fender Stratocaster.

I got the guitar for $200 from the husband of a family my sister baby-sat for. The wife wanted to get rid of the guitar, so I got the deal of a century for the beautiful blond guitar. Even back then it was worth a lot more.

I wanted to be Eric Clapton, I guess. I think maybe I hoped to become popular as a guitarist. It did not work. The person most impressed was a guy who thought Fugazi was as good as it got.

I had no plans to practice night and day, which might have helped for a while, but you run into few guitarists so uncoordinated that they can't walk. Freidriech's ataxia was more cruel to my brother who did practice a lot and still was not able to become a sax teacher.

I haven't played the Strat in years. It was in a closet for a while, then one of my brother's friends used it for a while to see if he wanted to buy it. Finally, it went to my brother-in-law whose son started to play it.

I haven't even seen it recently.

But I am not sure I was ready to sell it. Not that I had a good reason to keep it. I don't expect to get cured and get music in my soul. It's not like I just saw one on eBay for $4,500. (I mean I did, but that is not the reason I did not want to sell it. More money would not make it better.) And it's not like I could put it on my wall; the guitar needs to be played.

At least, my nephew promised to thank me when he wins a Grammy.

Matty is going to Japan!

I got some fabulous news over the weekend, and it came in an envelope addressed to Mom and Dad. I have been invited to study in Japan with other high school students.

Finally! Someone recognizes that I have arrived at the emotional and maturity level to thrive in high school. Granted, I am 36. It would not be easy to pass for 18.

Perhaps I could wax my face. I can't grow a full beard or anything, but I don't look smooth and peach-fuzzy. Other than that, I could probably fit in. They just have to accept my careworn and weathered face as a sign of young wisdom.

Lest anyone doubt that I am on similar levels as high schoolers (except intellectually; I'd smoke 'em intellectually), I very recently came up with the proper comeback to a crude remark from two guys in a bathroom in the language wing after a fire drill when I was a sophomore. (And why do so many of my stories involve a bathroom?)

I won't share the remark, but the proper comeback, which came to me 20 years too late, was "OK, your mother never complains." Another would have been simply "OK, Big Dick." I may actually be regressing. The proper response was to ignore them, which I did.

Why do I still think of retorts to high school bullies? And why doesn't it bother me that I'd get the snot beaten out of me?

I may have some issues. And what better place to work them out than high school?

P.S. Merry Christmas

Aquaman is no virgin

It is with some embarrassment that I admit I spent almost 20% of my waking hours this weekend watching "The 40-year-old Virgin."

I was not checking for discrepancies, Smartie, I am only 36. And I wasn't watching to see his awesome action figure collection, though Mego Aquaman is tops on my want list.

It's not like I had never even seen it before. I saw it when it first came out in the theater.

I spent more than a little time watching it because it is quite funny and more than that I was astonished at all I had missed in the theater.

I know my hearing is bad, but I followed the movie in the theater and thought it was funny. It wasn't till I watched it with captioning that I heard Andy tell Aquaman they were sending him to a farm "So, you and other Aquamen can run around and play in the Aquafields." There was also the confusion between "butt" and "but."

I could point out more hilarious scenes (I missed the Jewish kid in the sex-ed session), but it would get difficult with Mom reading this. Let me just state for the record that not being able to hear is one of the worst symptoms of this crappy disease.

Don't believe me about the 20% number? Let's say that the weekend lasts from when one gets home on Friday to when one goes to bed on Sunday. I got home Friday at 7:30 and went to bed about 11:30, four hours. Saturday I slept till 12:30 and went to bed about 11:30, 11 hours. I got up about 6:30 Sunday and went to bed about 11:30, 17 hours. This, of course, does not take into account the naps I took on Saturday and Sunday. That is about 32 hours waking total. Of those I probably spent six watching "Virgin." Six divided by 32 equals 18.75%.

It is looking a lot like Christmas

I told Mom today that I think she needs to get her grandchildren to decorate the Christmas tree. She actually admitted I might be right.

It's just not as easy anymore. I don't remember having to pick pine needles out of my skin, like I did this year. It is entirely possible I blocked it from my memory because getting Mom and Dad's house ready for Christmas is so wonderful.

Each year the box come down with the ornaments and figures wrapped in tissue or wrapping paper. Mom sent the ornaments of each child to us when we got older and had our own tree. (Most of us, anyway. One brother said he wanted her to keep them for her tree. It was not as kiss-up as it sounded.)

You are almost always surprised to find certain ornaments you had forgotten. For me this year it was the huge goldfish, which is mine but would not fit on my tree.

I missed my siblings, who all allegedly had other things to do (like their own families or in-laws). I was the only one to help Mom and Dad decorate..

I guess I just love my parents most. I will be expecting proof of this on Christmas.

Really short day

I did my part to ensure that today was the shortest day of the year: I slept until about 12:30 p.m. That left me with four or five hours of daylight, I guess.

Let's see: What did I do with it. I took Claren for a long walk; I watched a rerun of "Orangutan Island," which may be my new favorite show; and I took a nap.

Maybe I was tired? I think that part of it is that I am feeling a little down and a lot whiny. That results in my being tired. I also think I need to exercise some, but then I remember that after the first of the year I have aqua therapy. That will give me a reason to be tired.

Is that too much to ask?

When I got home last night, all I wanted to do was eat dinner and fall asleep on my couch while watching bad TV.

It's been a bad week.

It has been cold, and several days have been quite gloomy, so that is part. I guess today is the shortest day and longest night of the year.

I am also working a late shift, so my body is all tangled. Work has not been too busy, but my boss was sick for the first part of the week. I just felt behind and I could not catch up.

Mostly, I think it was because the buyouts took effect this week. I don't think there is a way to really do buyouts well, and I recognize privacy concerns, but I found it frustrating that knowledge about who was leaving came by word-of-mouth and gossip. I don't do either, not by choice. It's just that I don't hear well and I don't get much gossip.

This leads me to a regular worry: I worry that I need and care for my friends, more than they need or care for me. It always strikes me as odd that the person in the wheelchair does most of the visiting at work. Not many people come and visit me at my desk; some do and it makes me feel great because it is always as surprise. I know it is stupid to worry about this, but it is one of the most frequent worries I have.

And that I didn't fall asleep on my couch, watching bad TV. It is something I am scared to let myself do. I worry that I will wake up all groggy, fall during a transfer and it will be bad. So I just went to bed.

If there are any awful errors in this entry, it is because I used my speech recognition program to write it.

No, people are great

For a few days now, I have been thinking about my winter in Chicago (well, Evanston, a close suburb) and this girl.

I was in grad school and she was in another program but also lived in the graduate dorm. I forget her name; I want to say "Michelle."

Like any winter in Chicago, it snowed a lot. Unlike anywhere else I have lived, though, life goes on pretty normally. You wear multiple layers and brave the elements.

There was some serious "braving" going on because I was still walking at the time, but not steadily. I had a homeless guy wander by me and make a crack about me being drunk. For some reason it was very important to me to track him down and tell him I was disabled, not drunk. Like that's better. Man, I'd give anything to wake up with a hangover but able to walk.

One day it was snowing, and by the time I left for home it was up to my calves. I saw this girl and she said: We need to help each other. I knew that she was going to be doing most of the helping, and I am sure she did, too. But she put it in such a way that I could not turn down.

And so we helped each other home, or she helped me.

On time but still a rotten trip

Once I realized my trip this morning would go straight by my building without dropping me off, I wanted to pitch a fit.

Not because I was worried about being late. The other rider's destination was close enough to my job that I knew I'd still be on time and I was.

The other rider just rubbed me the wrong way. She was polite to me but kind of condescending to the driver and she seemed to blame the driver for making her late.

I hate my para-transit service. With a few exceptions, the drivers are its salvation. Even the one with ... shall we say ... eccentric habits.

We dropped the other rider off and then I learned the whole story. She was moaning about being late, but the driver had to wait at her house for 15 minutes, stop at the mailbox and wait for the woman to put her dog in.

Man, I hate people.

It's just a joke, God, really

I like to think that God has a sense of humor.

I think he must. Is there any better sound than laughter? I used to have a friend at work who sat nowhere near me, but she had a wonderful loud laugh that would make me smile whenever I heard it.

I got some ecumenical proof today when I read that Muhammad had a buddy called the "jester of the prophet."

I really hope God does have a sense of humor anyway. Otherwise, when I die, God is likely to be plenty peeved about my nativity.

When I lived in North Carolina, Mom sent me some Christmas stuff for my first Christmas away from home, It had decorations and a box that said "Gram thinks you should have one of these." In it was a real simple nativity, wood carvings of Jesus, Mary and Joseph.

I am not sure I started that year, but I realized I had plenty of action figures to fill out the nativity. The first time, I think my various toys were assigned parts, like my Borg foot soldier was one of the three kings.

Now, though, the toys themselves are the visitors to the manger, and one of my favorite parts of Christmas is setting up the nativity and telling everyone why.

Here it is, then. Sadly, I can't post music with it. The music was "The March of the Toys" from the "Nutcracker," but not any old "Nutcracker." It is from "A Child's Introduction to the Nutcracker Suite with Bob Keeshan," which my siblings and I listened to. All the songs have words, and my little sister says she didn't know the real Nutcracker does not have lyrics until she was in college.

Claren is good practice

If Natalie Portman or Jennifer Anniston is reading this, I am totally fine with being a 25 watt bulb standing next to a shiny star. Currently, it is Claren.

Whenever she stays home from work, I am inundated with questions. Even people who don't know me want to know where my friend is. I am used to this mostly.

On Wednesday a photographer took her picture for inclusion in a going-away present for someone at work leaving because of the buyouts, and that was nothing compared with what happened Tuesday.

We went to the vet because I suspected Claren's ears were infected. (I was right.) The nurse who took her temperature said: Everyone likes it when Claren comes; she is so sweet. After the appointment, we were in the waiting room and a nurse I know came out with a new nurse and said: This is Claren. The new nurse was like: I've heard so much about you. And both of the nurses then fawned all over my dog. I was totally in the way. Then another customer came in and told me how great Claren is and started telling stories about the Lab she had as a girl. On the way out, another customer told me how sweet my dog is.

If I was with Natalie Portman or Jennifer Anniston, I would not be jealous of pretty young things fawning over my dog either, so it's a win-win.

I wish I believed

I wrote last night about solving the future sorrow of loss by getting hit by a bus. One of my sisters (the best one if we judge by recent blog comments, not that we would ever judge by that) wrote a wonderful response that I wish I could agree with. Here is my response:

Yeah, I think I am as likely to throw myself in front of a bus as I am to praise God in the dark.

I am not saying there is anything wrong with the dark, but the light is preferable to me. And if God is so omnipotent, surely it would not be a problem to light a candle. Mom will say God can't without disrupting free will, but if God is so great, surely God could figure out a way to light a single freaking candle without breaking all the rules, God's rules. And by lighting a candle I mean fixing me. And by dark I mean the world of disability I navigate, the mutilated world I live in.

And before you say Claren is a candle or Mom or any of the good and wonderful people I know, tell me how they are God's doing? If you allege that God is lighting candles in my life by bringing Claren or others into it, then isn't that proof of the fracturing of free will? Or at the very least aren't you crediting God for something others are doing?

I don't know. I am not a fan of the mutilated world, at least not mine. I think it is far easier to praise the mutilated world when you don't have to live it every second of every day with the only certainty being that you will get more mutilated.

I believe in God with every fiber of my body. I want so much to believe that God is present with us and that God cares. I really struggle with those questions. I feel like Natalie Wood in "Miracle on 34th Street." She is trying to believe in Kris Kringle, and she says: "I believe. I believe. It's silly, but I believe."

I am neither as strong nor as faithful as little Natalie.

Mostly I can't believe you didn't back me up on the Superdance speech.

Beware of dog

Dad will say it was a joint parental decision, but if one polled the kids, I am sure we would say he is why we never had a dog or cat growing up.

After my friend told me her dog died this morning, I am not sure to thank or yell at him.

Her dog was older and had been in and out of vet hospitals for the last few months. When I saw her yesterday, she told me that Simon was really bad and not eating. She and her husband went to the vet today and ended it. She said that it was awful and peaceful at the same time and that they'll really miss him.

I can hardly think straight when I imagine the yellow furball next to me retiring. Claren's death is going to kill me.

Roger Angell talks in his memoir "Let Me Finish" about people who trusted him enough to fall asleep when he was driving. I would not expect anyone to sleep if I was driving, unless they were to pass out from fear, but Claren is the only person to trust me enough to sleep by my side. As long as she can feel my arm or leg, things are OK for her.

I guess it is no different for love in general. My high school has a big fundraiser every year to help find a cure for cystic fibrosis called Superdance. The former principal gives a speech about a family who is the reason behind Superdance. It probably does not change.

He talks about this boy who confided to him that he did not want to get to know one of the girls with CF because she was just going to die and break his heart. The principal told the girl and she said it was the boy's loss. The principal relayed this to the boy, who did become friends with her, and she did die and break his heart. But the boy told the principal it was worth it and spoke at the girl's funeral.

Schmaltz-y, yes. Of questionable veracity, yes. (And would it kill them to dance for me?) But true sentiments, I guess.

Maybe Claren and I will get hit by a bus as we are crossing the street and save us both the pain.

Stupid disabled person

One might think that I would be empathetic to people running late for the para-transit bus. I know all too well the many dangerous delays that await people with disabilities. For example, falling into your basket of dirty laundry, dropping the soap and spending what seems like an hour fishing around for it behind your shower chair, spending an eternity getting the water not too hot or cold.

One might think I'd be empathetic, but one would be wrong. I get up earlier enough that such delays don't make me late.

So when I have to spend 10 minutes (really 25 but we were early) waiting for another client only to have him cancel, I want nothing else than to curse, suggest someone perform an anatomic impossibility or something else equally mean-spirited. Especially after the night I had yesterday.

All day yesterday, I had felt kind of blah. Mom said it was the weather because she felt the same. Of course, after three bites of dinner (pizza for my nephew's birthday), all the food in Mom's body did not decide ithadtogetoutnow. Not that it is a contest.

I was fine afterward; the screwed-up muscles aren't limited to the ones in my legs. They are in my little tummy as well. But I didn't want dinner or the Spider-Man cake for dessert.

When I got home, I figured I'd just brush Claren, take my pills, watch the Simpsons and go to bed. Hahaha.

First, my pills weren't near my chair so I planned to get them later. I brushed Claren and watched the Simpsons, at which point my bladder decided it really had to empty itself. I got in my chair as fast as I could, pretty fast, although one shoe came off. Anyway I hurried to the back without the shoe.

To make a long story shorter and a little less gross, I did not make it entirely. I had to shed my clothes, so I was standing in the bathroom bottomless. I put a towel on my chair and wheeled out to get a change of clothes. I got them but could not get them all the way up because I was wearing just socks and they could get no traction on the rug. I then decided to switch wheelchairs -- why I thought this would work I don't know -- but it didn't. My feet kept sliding and could not support me so I wound up on the floor, with my pants around my knees, and Claren curled up in front of me (where she always goes when I fall). Finally, I got in my power chair, although the seat cushion got wedged behind my back. I had to wheel over to my stripper pole to stand up, push the cushion down and sit back down.

Then I had to go take my pills, take Claren out and go to bed. And given the digestive issues I had earlier, by then I was so hungry.

And I was really hungry this morning, when I had to sit and wait for a turkey who canceled.

Falling

I hate falling in front of people. Falling by myself is not that great either, but I just hurt myself.

When I fall in front of my mom, she curses. This might not sound like that big a deal, but I am not sure I have ever heard her say anything harder than damn outside of disability discussions, which sometimes follow falls.

I tend to laugh off falls in front of my little sister. Her kids make this possible: her almost 3-year-old son who offered to help me up yesterday and his 4-year-old sister who cracks up whenever I choke at dinner. (I hope this is just because she is nervous about me, and doesn't really know what to do.)

Falling in front of strangers is awful. The first such incident I remember was morning rush hour in a crowded subway station. I backed off the subway car because the cars are higher than the platform, and not for the last time, my anti-tip wheels failed. I fell out of the subway car as my chair fell over backward on to the really hard subway platform. Somehow, I did not get hurt at all and I scrambled back into my chair with lots of helping hands and got the heck out of Dodge.

The worst, though, is falling in front of Dad. He always helps me. But Dad is an only child, and he dreams of being in control. Six kids mostly cured him of that. and this disease very clearly takes from him any last semblance he has of being in control.

Plus, falling hurts.

Work intrudes on my vacation

I am off for a few days, but I just talked to my boss. The people leaving my company by way of buyout have been announced: Claren will not be pleased.

My department is losing four people. One doesn't work at HQ, but I knew him and am kind of surprised. One is a nice guy that I did not really know that well. One is a woman I worked with a lot and am quite sad about. She is a big fan of Claren's.

I thought the last departing member was leaving. She came up to me and said, "Can I take Claren for a really long walk before I go?" I said sure, although I wasn't sure where she was going. I had an idea, though.

For the last couple of years, she took Claren out at lunch when I could not. She took her happily in the rain, the snow, the heat ... I got spoiled having her, knowing there was someone who knew how to take Claren out and loved it. I guess I will find someone else.

I am a cartoon character

Like all of my muscles, my neck ones aren't that great, so when I nudged the soap and shampoo container this morning, my head went Klonk, Kllonk, Klonk, ricocheting between the soap holder and the grab bar.

I thought that would be the worst thing that happened today. I would be wrong.

I was sitting on my chair in the wheelchair stall at work, buttoning my pants. I was also sitting on a piece of newspaper. That started sliding, and all of a sudden I was on my rear in the stall.

I was not hurt but was terrified of someone coming into the bathroom and seeing this pair of feet scrambling to stand up but not getting traction. It was like a Bugs Bunny cartoon where somebody runs off a cliff and his legs keep moving but he doesn't go anywhere. That's what it was like ... except I was in a wheelchair stall in the bathroom of a Fortune 500 company.

I eventually got up, but it seems kind of silly that my life resembles that of Wile E. Coyote.