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.

Klonk

I need a signature phrase, like Emeril's BAM!," and I am thinking "klonk!"

I decided this in the shower after I sprayed my feet with too-wot water, which sent me lurching backward into my shower chair, which sent me rebounding forward so my forehead met the grab bar up close and personal.

My immediate thought upon cracking my head was "holy crap grab bars are solid." And yes, I know they have to be solid, but in my defense my brain had just been sloshed around.

I actually forgot all about this head-banging until I got home. I guess if I can walk away from an injury, or roll away, it is just not worth remembering.

Suck on this, depression

On a day when my antidepressant was getting back up to speed, a friend provided me almost all the energy and good feelings I needed.

I told her yesterday that my Thanksgiving was good but had ended poorly. I forgot to take some medicine, I told her, and felt horrible. She asked if I was OK and I told her yeah, except for my throbbing head.

She said she never knows how I feel because I always seem happy, more or less. I didn't hear her that well. I could not believe this, not because some was saying I seem happy (well, not just that) but because I has been meaning to talk to her about this very thing.

I was reading something she wrote last week about superheroes. She was talking about how we all have so much capacity for saving others, how there is courage in love.

The next night one of the aunts on "Pushing Daisies" talked about the heroism of a smile. "Daisies" probably strikes some people as hokey; I love it. Everyone is nice and kind, and Chuck is one of the cutest dead girls I have seen. It is a tossup between her and George. Why do cute dead girls have guy names?)

I told my friend I would rather have a cooler superpower than appearing happy but you take what you can get.

When I struggle with unhappiness, Mom tells me to smile even so. Not to ignore my feelings but for practice, she says, and who knows I might get used to it.

I guess I am getting used to it.

"I have never seen you not make the most of a day," my friend wrote me when I IM'd her to thank her. It was like when another friend called me "vibrant." These people see in me more than I realized was there.

Pretty astounding.

Back to normal

I seem to have mostly recovered from missing a dose of my antidepressant, except for a headache and a little dizziness.

It is quite scary to feel that bad without drugs, and some have said that it shows how much I need them. But I know that's not right. I was not that depressed that pretty much everything I saw made me cry. I think I would be fine now without drugs. I think Claren is why tI am not depressed. But I probably will not know, at least for a while.

I found lots of testimonials on the Web that said how awful it is to stop taking Effexor. I think I will talk to my doctor, though, I suspect her reply will be: You're not depressed, you've got no real reason to stop taking Effexor, so just pop those pills. More or less. Dr. B might not say "pop those pills."

Not thankful for this

I had a bad day today.

It was not a surprise. I am not allowed to have so many consecutive days when the good outweighs the bad.

Mostly, though, it was not a surprise because I forgot to take my antidepressant. And it floored me.

The tiredness, the sadness, the anger, the head-throbbing pain, the ringing in my ears ... It was all there.

I did have reasons: I was tired; my brothers and sisters and their families were going home; Claren did eat one of the several presents her cousin left behind in Claren's pen; I had not showered in a few days ...

So after bursting into tears, I agreed with mom to just stay at my folks house and sleep all day, which is what I did.

The only good part of the day, other than my understanding parents, was when I first got on to the floor to nap. Claren must have known I was suffering, and she tried to lay in my lap. And whenever I asked her to moved, she would just re-settle into my lap.

Of course, she did eat something nasty earlier so I am not sure I should have been so welcoming with her.

This Republican rocks

In October of my third year in college, Mom, my brother and I headed down to Emory University in Atlanta for a bunch of medical tests. Emory had a mitochondria lab, and doctors thought maybe my brother and I had something screwy with our mitochondria.

There was no test for Friedreich's ataxia, and doctors had no clue. They would see me and say: Oh, you clearly have FA. Then they would see my brother and said: Cleary, he doesn't, so you don't either because brothers would not have different ataxias.

Turns out they were right and wrong. Yes, we brother don't have different ataxias but no, my brother really did have FA, apparently just not a text-book case like mine (I so rock).

But that was years later, back to Emory.

The feature test was a muscle biopsy. My only complaint now after 16 years is the same as the one I had back then: They did it too neat so it is hard to see. The other tests included a lumbar puncture, blood work (passed out for that) and 24-hour urine collection. I know one of Mom's memories is walking to our motel near the hospital with these two empty jugs in her hands.

The doctors learned nothing from these tests, and our insurance company decided these tests were not diagnostic but exploratory. And they would not pay. Jerks.

After going back and forth with them, Mom called her congressman to try to get some help. Frank Wolf assigned a staffer to look into it as I recall, and the issue was settled. I don't know if Frank did anything, but I never forgot it. Perhaps, that is why I emailed him after the hellacious para-transit trip.

I like to think I am in a détente with the para-transit company. I had a very unsatisfactory complaint call about that trip, but then my brother, who now works with disability issues, gave me the email of an exec at the company. She seemed to shake some heads, so things have been better lately, not perfect, but better.

Yesterday I got a call about the hellacious trip again. This time, the woman was quite apologetic. I found out why when I got my mail.

I had a letter from Congressman Wolf, who said he asked for a status report on the situation from the company. Maybe I should ask him to find out why God allowed this disease to strike me. Fighting Frank might get an answer.

Crash test dummy

My dream to become a slightly paler version of this guy will have to remain just that: a dream.

I went to the therapy appointment today involving the electronic stim anklet. It was pretty cool. It was moving my foot by electronic pulses that stimulated the muscles. I'm not sure they were too hopeful. My muscles are pretty messed up.`

I was not even a guinea pig. I was just there so the physical therapists there could learn to use this new tool,

So I didn't get to wear it home; I am not now working out my muscles while sitting; I am damn sure not standing.

They didn't even tell me if it could help me definitely.

The best part was being the only guy surrounded by six young women, all interested in me. Until that guy who had a more-fixable drop foot showed up anyway. Jerk.

I'm so vain

I love to look at myself in the mirror. Really.

I normally put on my shoes and pull up my pants while facing the wall. Today, though, one of my shoes was under the sink so I turned my chair facing my mirror to reach my shoe, put my shoes on and stood up to pull up my pants.

I did it fine, although I was very distracted by that handsome fella in the mirror. Actually, I was distracted but it was by that STANDING handsome fella in the mirror. It was so neat to see myself standing and to look around and see my sink and everything far below me, not at my chest level.

Isn't that a silly thing to miss?

My kingdom for a remote

I am teaching Claren a new job. At least I am trying to teach her how to turn the TV in my bedroom off. Twice in the recent past I have turned on the TV, gotten into bed, then had the remote not work when I tried to turn the TV off.

This means I can either leave the TV on all night or go turn it off manually. The last time it happened, Thursday, I decided to leave it on because I was tired. But then I thought: "The TV is like 6 feet away, especially if you get out on the left side of bed; you can do it, lazy ass." Sometimes, I think my mind is just trying to kill me.

I had to get out on the left side of my bed anyway because Claren was next to me on the right, and I didn't want to disturb her. I am so puppy-whipped.

Getting off the bed was easy, and then I did the worm over to the TV, and by worm I mean a worm with no coordination. Then I just reversed till I was at the bed. Then came the really hard part: getting back in bed. There is nothing to grab and my feet were sliding out beneath me so my legs were no help. It was probably comical to watch, in a vaudeville kind of way. Finally, I got far enough on to grab the far side of the mattress and pull me in bed. But I was so amped up and out of breath.

So today I started teaching Claren to do it. I turned the TV on and ...

The first problem is that she does a bitchin' push command, but it is not very precise. It relies on big buttons, so when I told her to push, she slapped the TV itself, even though I put masking tape on the power button to make it stand out. I was a little worried she might knock the TV off its table so I had to take another tack.

I had her do an up, which is when she puts her front paws on a table, and tried to push her head down to push the button. The dog trainers told us we could do this to teach new commands. They called it molding. Claren wasn't having any of that. She resisted and then dropped her feet off the table when I kept on molding.

If molding wouldn't work, maybe peanut butter would, I thought. I put peanut butter on the button and had her do an up. Surely, she would let me guide her nose to peanut butter.

No, she acted as if I were setting her up: trying to get her to eat forbidden peanut butter. Now, she really resisted the molding.

Finally, I convinced her it was OK to eat the peanut butter, but she was daintily licking it, which didn't turn the TV off. And when I tried to push her nose into the button, she again had none of it.

It wasn't a complete failure. She did turn it off twice, which led to the biggest pain of the evening. I was cheering her success and giving her treats that I had in a cup. But I spilled the cup, of course.

I bent down to retrieve it, and whacked the hell out of my head 6n the TV table. I was sure I had opened up my forehead, but no it was just bruised, really bruised.

Maybe I should just replace the batteries in my remote.

Of course, sad songs make you sad, idiot!

I have a playlist on my iPod called "sad." It has, obviously, a lot of sad songs, many achingly so.

I listen to the Cowboy Junkies' "I'm so lonesome I could cry," and I just want to comfort the singer, let her know that she isn't alone. I hear U2 sing "All I want is you," and I can't imagine a sadder song. Singer Bono seems to be truly mourning and yearning for someone out of reach. It makes me want to cry because I often feel that everyone I want, even as a friend, is out of reach because I am different and limited or don't hear or don’t drive. (Wow, I sound whiny. A friend once told me whiny people were better because it means they can imagine a better life. I really hope I do more than imagine.)

But the "sad" playlist doesn't only have sad songs. It is a playlist for when I am sad, and hopefully the music lifts me out of my funk. Mixed in with James' "Out to get you," is Bonnie Raitt's "Thing called love," which reminds me of good times in college. Next to "Brick" by the Ben Folds Five is "Breakfast at Tiffany's" by Deep Blue Something. (Yes, that dorky song makes me feel better always.)

It is not working yet today. The songs are making me sadder. Friday was a bad day.

We had another meeting yesterday in the awful conference room about the buyouts. Turns out I could technically spend the holidays job hunting because if not enough people take the buyouts they will lay people off staff-wide. I cannot imagine a scenario where I'd be cut, but I don't understand a lot of what management does.

I was late to work, mostly because a stupid other rider was not ready when we showed up to pick her up. And she wound up not even riding with us after all, so we sat there 10 minutes for nothing. Then the GPS all sent the driver off the highway to back roads two or three exits early so that added to my lateness.

It also has gotten quite cold. It is only November and I am freezing. I may be screwed.

Finally, my worst fear is being ignored. It is hard for me if someone says I'll call you or e-mail you later and doesn't. I know rationally there are many valid reasons I might float down someone's to-do list. Emotionally, I feel tossed overboard.

Yesterday, my instant message program was not working. At least I hope it wasn't working. No one responded. I stopped IM'ing because I didn't want someone else to not answer. Rationally, I know it could not have been working right. Emotionally, I was drowning.

And now my "sad" playlist is weighing me down.

Do more with less

My company announced today that it is offering buyouts.

I am not the type of person targeted; I work in the online unit. The buyouts are offered to longtime staffers with little or no online experience. I guess I shouldn't be affected, well except by the rocky atmosphere at the workplace.

For the next several weeks the offliners will be looking at people like me (not me, of course, because I am preternaturally cute) as if we are jerky job-stealers. Try as we might, onliners will start thinking: "She should go; he should go; they can stay."

I suppose it is like this everywhere, the march of technology, of progress. It just makes me want to cry and go to sleep and never get out of bed.

And to bring it on back to the disability realm, the staff meeting was held in the room where the only spot for a wheelchair is the middle of the fucking main aisle.

I wanna be a rock 'n' roll star

My fellow diehard Springsteen fan co-worker went to the concert the next night, and while it was awesome, he said he might have traded nights after reading the setlists. Of course, he also went to the Toronto show because he was sort of nearby, so I don't feel bad for him.

After my ears have stopped ringing and the adrenaline has worn off, what I can't shake is how much I want to be Bruce Springsteen, or even one of the band. I have never seen one person command an arena full of people. Maybe old-time generals had that kind of charisma, but who is there nowadays? Not even athletes really, except Jordan-esque ones.

Springsteen exhorts people to clap and they do. He stands near them and they grab his feet like he is their savior. They know all the words; they sing along; they gesture with him.

I'm not sure he could drive these people from him if he tried. They love him. It must feel so incredible.

I can't think about it anymore. I have to go tape up the arms of my power chair so it is semi-usable tomorrow. It is so not a wheelchair of a rock star. No girlies will be hanging on it.

The stomach ache was worth it

I went to the Springsteen concert last night, and it was so awesome.

My little sister went with me because her husband felt bad. His loss. She is not even a big fan, and she couldn't answer the question What was the last concert you have been to? But she seemed to like it, too.

And we met two of my friends there. Me. Really. One was a big fan and it was great to see how excited she got when they played "Badlands." That was what she came to hear.

Speaking of hearing, my ears adjusted after the first two songs, and I could hear OK. I wore ear plugs and covered my ears sometimes to block out some of the noise. I wonder, though, what a concert sounds like to good ears?

Looking at the setlist, I should have recognized another song; No. 2 was "No Surrender," which I know well.

The seats were almost like a mini-suite without the plush chairs and bar but with plenty of security and a drunk guy or two.

We had four seats together and on one side was the aisle, and on the other was a suite. No seats behind us although people tended to stand behind us, including a group of cops who stopped in to watch for a while. "Don't you feel secure," one asked. Later, a tipsy fellow insisted I use his binoculars.

On the way home my sister said she was going to write a "Dear Mr. Namath" letter except to Bruce. You know, like the Brady Bunch. "Dear Mr. Springsteen, my brother Matty is very, very sick ..."

Trying for neatness almost kills me

Three things to keep in mind as you read this story: 1. I have no balance. 2. I have night sweats. Last night I slept in shorts and a T-shirt and still was covered by a nice little sheen of sweat (because I am so freaking HOT). 3. I have poor aim, so any clothes that I take off in bed don't wind up in the clothes hamper but on the floor nearby.

Last night, I decided to take off my long-sleeve shirt while I was still in my chair.

This was fine until I pulled the shirt over my head. At that point, my trunk flopped over the arm of the chair. I thought I was going to go completely over, which might have been bad.

Instead of slipping out of the chair, I fell on to the arm and my shirt, which was over my eyes, got caught on the joystick. (Yeah, I was in the power chair; that is a fourth thing to keep in mind.) I was too weak to get off the arm, especially since I could not see. The joystick started pressing hard into my stomach; the chair started moving; my legs got caught in the legs.

I banged into this wooden shelf set that backs into the wall, so the chair had nowhere else to go. Not that it stopped trying. I was caught between the shelf and a moving power chair, with my eyes blindfolded essentially.

I managed to turn the chair off, but I was still stuck. I actually thought I might need to call for help – not that I could reach my phone easily. This will probably make someone demand I get one of those "I've fallen and can't get up" dealies. The worst part was that I was still lying on the stupid wheelchair horn, so that pathetic beep was sounding.

At first I thought my hands, which were on the shelf, were holding me up, but I realized I could move them cautiously. My body was wedged in good – it was not going anywhere — so I moved my hands around till I could push myself up.

Now I was upright but still stuck. I also got my shirt down around my body. But what now? I could not move the shelf as it was up against the wall; the chair was too heavy. You know how parents find the strength to lift cars to free their kids? I guess that is what happened. I pushed and pushed, and the chair and shelf moved – maybe a quarter inch.

That was enough, though. I squeezed out. TA-DA! And promptly fell on my wheelchair feet.

My real feet were still kind of wedged by the chair, so I finally turned the chair back on and backed it up, freeing my feet and allowing me to flop on to the floor safe.

It was all anticlimactic after that. I lay there for a bit. Claren came over after watching the whole scene, probably wondering: "WTF?" Then I got into the chair and into bed and then took off my shirt, which is lying on the floor now. To hell with putting it in the hamper.

OK, maybe it wasn't worth it

You know those full body stretches everyone feels the need for every so often? The ones that start at your toes and stop at you forehead. The ones where you don't really have a choice about them, your muscles just stretch.

And they feel so good.

Claren has the best stretches. When she wakes up, she starts to walk forward, but her back legs don’t move so she just stretches her body. Then she bends her back and bows down to stretch her front legs. I am jealous whenever I see it.

I had one of these stretches the other morning. Unfortunately, it wasn't when I was in my chair or in bed. I was standing up when every muscle in my body needed to stretch and did.

As I was sitting on the ground recovering from the expected fall that followed, I decided that maybe the fall was worth it. I was not hurt badly, and the stretch felt so awesome.

Today, I have a big, ugly bruise on my right hip. It doesn't hurt too much unless I touch it. Maybe I should just stretch in bed, to kind of head this issue off. It would be no where near as satisfying.

I'd rather write than work anyway

I Am able to post this because my ride, which was supposed to arrive between 10 and 10:30 am, got rescheduled for 10:59 a.m. Traffic, I am told.

I also spoke to them about my complaints and was told that my trip is 18 miles and therefore can take up to two hours. I pointed out that there is public bus service that could do the job in an hour and was told that it did not matter because those were county buses, not city buses. So since the city buses do not run to where I live, a two-hour trip is equitable.

I can't begin to say how sick I feel.

I was feeling pretty good when I left my doctor appointment yesterday.

The appointment actually was not with a physical therapist but with a doctor of rehab medicine. I told her all my problems and she told me where to go for treatment.

I left with a handful of prescriptions.

One is for aquatic physical therapy, which has me pysched. That is to treat my legs and improve general conditioning. She gave me a script for a regular PT as well to work on similar things on dry land.

One is for occupational therapy and another for speech therapy to work on swallowing and voice.

I got one for a new wheelchair and a seating clinic with a good wheelchair company not the piece-of-crap company my insurance company sends me to.

The coolest one is for a electronic stim anklet, which is just coming on to the market. I will be a guinea pig for it. But it is supposed to tell my ankle to hold my foot up by reading my nerves in my calf. The doctor was pretty excited and said it might even lead to standing. I think she is a little optimistic, but it will start me toward my lifelong dream of becoming a cyborg.

But then I started thinking more about insurance and cost. I have to pay $1,500 before my insurance starts to cover therapy, and then it is still only 80% a visit. Who knows about the wheelchair?

Mom says if any of it makes me more fit, it is worth it. And it probably is, but if I use all my money for getting fit, what then? I can be fit and homeless? One of my sisters and her family are planning to build a house with an in-law suite for me. It would be a dream come true, in so many ways, but it costs money. Money I am about to spend on therapy?

Friedreich’s ataxia is a jealous bitch

I spent the morning thinking about crude oil, Pakistan, the Redskins, fantasy football (I won!), Natalie Portman (she is my desktop background), horseback riding and why the hot water flows through the bathtub faucet fine but not the shower.

In short, nothing about my goddamn genetic disease.

I don’t think it liked that. As I was getting into the shower, my right leg went in fine. My pants and shorts would not slide off my left foot, though. I bent my right leg so I could unhook my foot, and my leg gave out on me completely.

I was holding the grab bars so I did not fall, but I could not get to a place I could sit comfortably. Finally, I managed to wedge myself onto the tub side, although my rear still hasn’t quite forgiven me. From there, I got all in the shower. The pants had fallen off my foot in the struggle.

I am going to a physical therapist tomorrow, and I will talk to her about my legs. They seem to be losing strength and coordination, even what little I have.

I think I often write about this being the worst thing about FA or that being the worst thing.

The scariest thing, at least now, is watching your body disintegrate in front of your eyes and not being able to do a damn thing.

Definitely an accident

Dad and I had a rather tense moment today, and unfortunately it involved a wheelchair, not camping (get it? HEE)

I am still at my folks' house even though Claren seems OK now. We had a little party for my folks' birthdays, and I didn't want to miss it ... unlike a certain sister who lives next door.

I was also at their house this morning, and in the same room as Mom and Dad, when I was getting ready to go horseback riding and reached for a shirt.

It was too far in front of me, and I flopped forward and could not get back up. I had my seat belt on, so the concern was the whole chair falling forward, not just me.

I was inching ahead to grab this big shelf and straighten up when Dad yelled: "WHAT ARE YOU DOING?" That is precisely why I did not ask for help.

I did not want panic to set in and I certainly did not want to be yelled at for falling, so as he was helping me upright I was yelling back that I wasn't doing anything on purpose and it was an accident.

Then he took me to riding.

We all do what we have to do, but it would be a hell of a lot easier without FA.

Can my muse be like Salma Hayek?

In the first sonnet ever written, Astrophel says:

Biting my truant pen, beating myself for spite--
"Fool," said my Muse to me, "look in thy heart and write."

I use a computer, which totally ruins what I was taught was a metaphor for getting real friendly with yourself, but my muse has been telling me to write, too. "Bashing her fist against the inside of my brain" telling me, or so it feels. And there has been a good bit to tell, a lot of it not so good.

On Sunday, I went to a Halloween party that my friend throws every year. It is very much a family party, and I may have been the only single person there, except for the legions of children. I actually spent a lot of the time alone, not because nobody likes me (I don't think that was the reason). Instead, it was because everyone else was looking after a kid or two. I would be talking with someone while they gulped down their dinner, and then they would say, "excuse me, I got to go" find my child, help my child, check up on my child, stop my child, etc. If it wasn't so damn beautiful, I'd have been pissed.

I saw this one guy open a bottle of beer, not even take a sip — just put it in his back pocket — and play with his daughter.

It is no different with my parents, I guess. Usually they don't check up on me that much, but I think that has more to do with my age than their love for me.

I stayed at my parents' house Sunday night and Monday morning was yet another example of their love, unfortunately. I asked Dad to put my shoes on while I was in bed because my bladder is fine when I am lying down but when I get up it remembers that it is FULL. I didn't make it to the toilet and so had to call Dad from the bathroom using my cellphone and ask him to bring me a change of clothes. He did, no problem.

The rest of Monday was OK, though I had to give up on one of my favorite TV shows. "Heroes" has just gotten too stupid for words.

Tuesday came and my ride to work was acceptable, which means it took an hour but I was on time. But work was so busy, and my boss is away, and the other guy I work with was getting a new PC so he had to go for training, which left me alone. I even worked on stuff at home for an hour or two after I got home. Claren started showing some signs of stomach problems, too, but seemed OK later.

My ride Wednesday was late and I got to work an hour late and felt so sick all day. I was mad and feeling behind all day even when my co-worker came in. I just had so much to do. I came home and worked for three hours on stuff that night. Claren seemed so fine I gave her dessert — beans. Stupid.

I woke up at 5 this morning and smelled something bad. I didn't see anything so I prayed Claren just had gas. When I got up at 5:30, I saw she had a little more than gas, all over part of my bedroom rug. Four years without an accident; now two in as many months. I hope it's a coincidence.

I called Dad and asked someone to come out early to clean it up. They were already coming to take me to the dermatologist for warts. Dad did (yes, I know I am lucky).

Work today was awful, too. It was busy; my co-worker got his new PC and was fiddling with it for a long time. To top it off, a program I beta-tested got released with my Imprimatur, but they changed it after I signed off on it and there is a big error. Plus, the dermatologist froze my warts off so my knuckles on my left hand have hideous and painful blisters — real fun when going through narrow doorways.

I don't if my muse is satisfied or if she really wanted me to … you know … But I feel better to get that off my chest.

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.

Really.

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.

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.

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 ...

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!

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?

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.

'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.

Ugh.

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."

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.

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.

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.

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.

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.

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.

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.

More

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."

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.

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.

What a silly trade

My favorite visual artist I am related to reminded me that Bruce Springsteen, as cool as he is, doesn't really know about life in a wheelchair.

If he did, I am pretty sure he would never say anything about trading "in these wings on some wheels."

I know he was not talking about a wheelchair's wheels, but I can't help thinking of that whenever I hear the beautiful "Thunder Road." And I think how I would trade in my wheels on some wings … in a heartbeat, even though I'd have to get new shirts that accommodated my wings.

How I'd love to fly like that and be unencumbered by this stupid chair and disease. I know that Claren would hate it, though.

My favorite visual artist I am related to reminded me of the "wings to wheels" thing
with a painting she made recently. She drew a guy in a wheelchair and he had wings … but he was still in the chair. (She also drew the guy on the left for my blog.) The wings reminded me of the wings on the angels in "Dogma," which I really like, but I really hope the painting guy doesn't have wings and still have to use the chair.

I would love to have wings, but only if I was cured by getting the wings – the last f----ng thing I need is another body part that doesn't pay attention to what I need.

I say reminded me of this thought because it has been sitting on a sticky note on my MacBook for ages, waiting till I could figure out how to write about it.

I guess I should thank her for letting me take down that one sticky. And Bruce Springsteen remains my favorite artist I am not related to.

This was bad

Here is the letter I sent my para-transit service today.

Hi, I have filed several complaints recently about poor scheduling that left me on your buses but 3 or 4 times longer than my trip takes. Today was the worst bit of scheduling I have seen in years. Even the driver said it was ridiculous.

He picked me up on time and we left for another pickup at 7:10 a.m. We reached the other pickup in about 20 minutes, although it was not closer to my destination. We waited 10 minutes for the other client to board. He was not late, we were early. We then drove 20 minutes to drop him off, again nowhere near the direction I was heading. In fact, when we finally started driving to my destination, we were farther away then when we started. We even passed where I was picked up. This final leg of the trip took 40 minutes. That is 10 to 20 minutes longer than my trip would take if I went straight from pickup to destination. And I had already been on the road or in the van for close to an hour.

I understand that you are a shared ride service. I don't mind picking up other clients, even dropping them off first if their destination is before mine on the way. But to drive me around for an hour, finally starting my trip at a point farther away than where I was picked up? That is simply unacceptable.

We'll see what they say. I didn't even tell them the worst part. The other passenger asked me, "Hey buddy, you got a girlfriend?"

Why is my love life so intriguing to my fellow passengers?

A skeleton says hello

I was on my way outside at lunch today when a skeleton waved to me as I got off the elevator.

She looked familiar, but I don't like to stare at people till my eyes focus, not even skeletons. So I looked away and wheeled closer.

It was a gal I had not seen in ages. I moved off her floor and she was off having kids. She was always slender, but she was beyond slender now. She said she had been pregnant, then sick, then something else.

I told her she looked thin, and she agreed thankfully. She is too cute for heroin chic.

I told her to gain weight and went to pat her arm for some reason. But I couldn't do it. My hand stopped short. I wasn't afraid to touch her, even though I imagine even in her weakened state she could take me.

I just misjudged where her arm was, like I do the doctor's finger when he has me touch my nose then his finger, which he moves to a new spot each time. I know it serves some important purpose, but part of me thinks this one and most neurology tests are just to make me look silly.

I guess it bothered me because I know how good it feels to be touched (which sounds dirty but isn't). I know that with her children around, I am sure she is not going to the barber shop for a human touch (just once, in North Carolina). But still.

This I got to see

I know what movving company I am going to use when I move next.

I saw the ad on a signpost near my home.

"MOVING?" it asks. Underneath is the answer: "2 men-free truck."

First, I thought it would be two women in like jean shorts and sports bras in the men-free truck.

But I had a new hope: Two orangatauns.

It'll be so cool either way. I can't wait to move.

Taking risks

I read the other day that my friend is starting a company. That is great; she ought to be really good at it and I hope she succeeds. I hope her business partner fails miserably. Is that possible?

The partner is a 26-year-old guy, and maybe that is explanation enough. All 26-year-olds are a bit cocky. But as I read about him in my friend's post about the company and in his own blog, my disapproval grew.

He dislikes "safe jobs," you know, those that pay the bills. Like mine? He would rather take risks.

Wonderful, except I decided he is the kind of person who decided to risk it and not get insurance, which is great until he gets sick and can't pay and society directly or indirectly pays the costs. I also decided he is the type who bought houses he could not afford using interest-only mortgages and who society is now bailing out. And he totally is the type who goes hiking unprepared, gets lost and has to get rescuers to save him ... rescuers who are often paid for by society.

I, of course, have no way of knowing if these are true.

I know I am just jealous.

At no point in my life since college have I not thought about ramifications ... in most issues. I know I was not thinking smart in grad school when I took part in a little writing enterprise that imagined mean things happening to classmates.

I am not averse to risk. I am all about risk every darn day.

If I don't think every little thing through, I wind up on my ass. Heck, even if I do think things through, I fall.

I recently told Mom that the reason I tumble when I transfer is that I don't take that much time and plan it out because 90 times out of 100 my strength or athleticism (that's right) or luck will keep me from falling. It is just those 10 times I fall and make a stink about it.

I am about measured risk, I guess. Failure at risks I take would not affect society, except it would have to survive without my pithy commentaries. No, my risks would just hurt me, well, and family and friends.

But I have changed my mind. I don't want him to fail ... because that is too mean and because then he would take a bigger risk to succeed and his failure, while spectacular, would just drain society more.

And if someone will take me bungee-jumping, holler. I really want to do that kind of falling.

Bruce Springsteen makes my stomach hurt

When my friend told me Bruce Springsteen would be touring with the E Street Band, I got a familiar hollow feeling in the pit of my stomach.

Every time I have seen Springsteen in concert lately, I decide afterward that it will be my last. Concerts are costly and they are loud. Not the kind of loud, though, that would help semi-deaf people like me to hear. The kind of loud that makes all the notes sound the same, so it takes me a while to determine the song. Sitting at home with my iPod is a better way to enjoy the music.

But when I hear about another concert, I remember what it feels like to be with 25,000 people shouting the refrain to "Badlands" or "Born to run." I can close my eyes and for a moment or two the wheelchair, FA and everything else disappears. I swear Springsteen knows about life in a wheelchair.

So I decided to buy tickets, and the hollow feeling disappeared, to be replaced by a dull feeling. I started to worry if I would be able to buy tickets, maybe they'd sell out. Even though all I have to do to get tickets is call the accessible seating office. They call me back and ask where and when.

I got my tickets this morning and the dull feeling in my stomach has been replaced by an empty feeling. I now have to find people to go with. I got four tickets. It doesn't matter that I know plenty of Springsteen fans, both related and non.

When I find people to go, I am sure I will find something new to worry about. I just need to remember the full feeling that the concert will give: It will be too loud, to expensive, but I will belong.


Spend your life waiting
for a moment that just don't come
Well, don't waste your time waiting

Everybody's inconvenienced, but only I have to use the elevator

Everybody's inconvenienced, but only I have to use the elevator

A department at work that I interact with regularly is moving to a different floor.

I asked my boss why and he said to get people nearest other people with similar jobs. I told him I hated the idea and he agreed and said, "Everybody's inconvenienced."

I agreed out loud but what I was thinking was: "Yeah, but everyone can just use the stairway that takes them straight into the heart of the moved department. Oh wait, I can't. I have to take the elevator."

This department helps with projects, guess I won't be doing many of them, huh?

I actually had to go down there today to check on the status of a weekly project. I e-mailed a couple of people, but no one responded.

When I got down to the new floor and back to the department, I saw one of the people I e-mailed. He told me he was waiting for the other person to respond. Of course, that other person wasn't there, and it did not occur to the one who was there to look ... until I ca down there.

Fifteen minutes later I was back on that floor, this time for an ice cream party. It was tasty.

They held it in a big open area of the second floor, sort of. Actually, it was in a conference room off the big open area. Instead of being free to move around. I squeezed into the conference room, squeezed out and returned to my desk. Party!

I know nothing was done to me particularly. I am like collateral damage. But that doesn't really make you feel better; you're still damaged even if it was unintentional.

You've ruined the bathroom experience for me, Sen. Craig

Not that I liked it that much to start with, but at least I wasn't scared.

Now I worry that every unplanned twitch or reflex might draw the amorous attention of some totally heterosexual senator in the next stall.

And if a hand appeared under the partition, I think it would be all over. I would probably laugh, which is what I do when I am nervous. That might further encourage the totally heterosexual senator.

His hand might reach toward my shoe, which would get a response. But, oh lord, I would be doomed. I would jerk my foot away, which would unbalance me and cause me to topple off the toilet.

And all of a sudden, the totally heterosexual senator would see a guy with his pants around his ankles on the floor of the stall next to him. My only hope here is that he is too busy thanking his lucky stars that I can struggle up and get away.

What would he make of my bathroom experience today, I wonder.

I stood up and pulled up my shorts but couldn't pull up my pants, and in the struggle to get them up lost my balance and banged back down on the toilet. I think I even scared Claren.

I guess I'll just have to hold if if I ever go to Capitol Hill.

Party hardy

I am always surprised how much people seem to like having me at parties, really hjow much they just like me.

They don't seem to mind hoisting me and my wheelchair up four or five steps. People I have never met offer to bring me anything, at least that's what they say. I'll bet if I said: "Bring me a hookah and dancing girls. Chop, chop," they wouldn't. But I have never tried, so whose fault is it that I am hookah-less and dancing with myself?

I went to two parties over the weekend and on Sunday Claren's puppy-raisers came over for lunch. I was totally a social butterfly.

I wish I enjoyed it more.

It is the hearing problems that are most painful at parties. I can't follow a group conversation, so I wind up just sitting there. At Lisa's book party, one of my friends there kept throwing me softballs to get me into the conversation, but I couldn't even here the softballs.

But I heard Lisa and her good friends talk about the book and her dedication. And then another friend of mine came and we chatted a bit. Then it was time to go. I had asked Mom and Dad to meet me at 9. Lisa even told me how much it meant to her that I was there.

On Friday night I stopped by a big company party to celebrate an anniversary. Just for about 15 minutes. That was loud, too.

I was able to have a few one-on-one conversations. This one gal earned my undying affection when she came all the around a table, just to tell me the cupcakes were good.

The only downside of all this partying is I am so tired. I don't know how Lindsay and Paris and those girls can party so hard. Drugs? Drugs might also help the sunburned face from my Sunday lunch.

I am invincible!

I felt really good 15 minutes ago.

That's because about 25 minutes ago I almost died, and the adrenaline rush that kept me feeling righteous started wearing off 15 minutes ago.

I am not even sure what happened. I was transferring to the manual chair from my recliner when I somehow overbalanced the chair. It tipped over to the right. Because I was facing it, I fell over to the left.

The left side of my recliner is rarely clean. There are books and papers and Claren's toolbox. All on a hardwood floor.

Somehow, though, none of these these cracked my back, broke my skin or otherwise damaged me. In fact the worst pain was when I tried to sit up, lost my balance and caught myself on my elbow.

Now, though, I am out of breath, my elbow hurts, my back and butt are sore. But I did cheat death yet again. In your face, reaper-man!

Planning for the wrong thing

A friend of mine is having a book release party, but I am not sure I can go.

And it isn't because she's too young to be an author. Lisa's my age, so it's cool. I am not jealous (well, not much).

I even RSVP'd that I'd be there, but that was before I openly declared myself the biggest dork in the world.

I say "openly" because it is not that big a surprise -- I do have shelves full of action figures -- but I do like to maintain a facade of coolness, no matter how thin.

I got the Evite and saw it was a cocktail party at Chez Solomon. "I wonder if the restaurant is accessible?" I thought.

That is one of the biggest annoyances of being disabled: You have top plan everything in advance. Can I get there? How? Can I go to the bathroom there? Can my service dog come? Where's the curb cut? Will someone be there to assist me? Someone I trust?

I could go on and on.

I got Mom to call Chez Solomon to check on accessibility. She hears better on the phone than I do.

Apparently, Chez Solomon is just a person's home, not a restaurant. I still would have had to check on accessibility, but I feel so foolish for not realizing that it was a home. Apparently, my mom and the husband had quite a laugh about it.

I am not sure why actually. It doesn't sound d so horrid now that I read about it, but I cringe when I think about it.

Just buy her book.

Sharing stinks

It's the shared-ride aspect of my para-transit service that kills me.

In theory, it means they pick up other clients on the way to your destination. In practice, the shared rides are why I have been nearly an hour late to work the last two days.

The specifics: I have a daily trip at 7:15 a.m. That means the ride can show up as early as 7 or as late as 7:30. My trip to work takes as little as 20 minutes and as much as 40 minutes. Or it should.

On Monday my driver picked me up at 7:10. Awesome! But then he told me that the next pickup was scheduled for 8:30 and was five minutes away.

Even the driver thought that was stupid so he tried to take me to work first, but chickened out when he saw the highway traffic. He could have made it, I am sure.

We got to the other client's house at 7:30, so I was ready to wait about an hour. Luckily, he came out early, about 8, so I only waited 45 minutes or so since my pickup.

This is problem No. 1: "On the way" means different things to me and to the dispatcher.

Problem No. 2 with sharing rides kept me from really napping while I waited.

The other client rides farther than me, so I get off first. But there is only one entrance and exit for wheelchairs. The driver secures me in to drive to the other client's house. When the client comes out of his house, the driver unstraps me, I get out, new guy gets in and goes to back of van, driver secures him, I get in front and driver secures me. Driver wipes away sweat from all the running around and we start driving. This takes probably 10 minutes.

I was similarly late on Tuesday. My driver showed up at 7:35 and said the next pickup was at 8 (later, he said 8:30) near my work. It was, quite near, but Dispatch didn't drop me first. Instead we picked up another person in a wheelchair. The driver had had me sit in the way back at first so I did not have to get off at this woman's pickup.

She had to get off at my work, which makes things later for her, but I did not really care. See, this is the third problem: You become rivals with the other passengers, wanting to be the one to get dropped off first.

I think it was OK on this trip because the woman was rude. She had the driver turn off the air without even a glance back at me. I sort of sympathize because the person in the front spot gets a blast of the fan right in the back of the head, but you suck it up, because the vans are really stuffy. Especially if the other client has dipped herself in perfume.

And she kept telling the driver: Drop me first, then him. He kept saying no and she would raise her hands in offense and exasperation. She was more exasperated when the driver made her get off at my work so I could get off.

Is it bad the driver and I shared a smirking look?

Just a Chihuahua-size one, II

I decided to reply in a new post because I am wordy.

I like "The Book of my Enemy Has Been Remaindered" even though it doesn't rhyme and I am not sure a little kid can be my enemy (excepy my arch-nemesis Katherine).

It reminded me of the Johnny Cash song, "The man who couldn't cry." The mistreated protagonist dies end ...

he went up to heaven, located his dog Not only that, but he rejoined his arm. Down below, all the critics, they took it all back. Cancer robbed the whore of her charm. His ex-wife died of stretch marks, his ex-employer went broke. The theologians were finally found out. Right down to the ground, that old jail house burned down. The earth suffered perpetual drought.

Although I guess if it is victory over ones enemies, you really can't do better than Conan (via Liberty Meadows): "To crush your enemies, to see them driven before you, and to hear the lamentations of their women."

I discovered that it is mom's fault I am not published, too. Reading the little kid's website, it turns out she wrote stories in her diary and the mom read them.

I have been writing a journal for ages, but did mom ever violate my privacy like that? Thanks a lot, mom. Just like not making me take swimming or piano lessons. Geez.

Actually, now that I think about it, thanks a whole lot, mom.

And I know the only thing to do about suicide is put it out of my mind, maybe drive it before me, and to hear the lamentations of its women.

Just a Chihuahua-size one

For the record, kids should not be paid authors with six-book deals, especially those who write "I want to do things to change the world. I think kids like us can."

And yes I know I am jealous and cynical and this is not the good kind of bitter, but come on: Throw me a freaking bone.

I am already spending part of my day thinking about suicide. Not me, I am much too cheery for that (hee).

But people on the e-mail list are debating that guy's death. And they say nothing personal, then slam him for killing himself. His friends respond that he was the bravest, smartest, most inspiring person they will ever know. And that it was his choice to his disease.

I want to write in to the list, but I don't know what questions I should be asking myself about this. It is just icky.

Plus, my fantasy football team is losing.

Love Story may be sad, but how about these tear-jerkers?

I saw two movies this weekend that almost made me cry.

On Friday, I joined my sister and her family for a movie night with Uncle Matt. We watched "Cars." At least the kids did. I watched "Cars" until the kids heard music in the movie. Then I basically watched them flail widely about.

I kept getting goose-bumps whenever Lightning McQueen did something kind or when he saw Doc with his racing wheels. And I admit my eyes were a little damp when he pushed the King over the finish line. In my defense my allergies are acting up.

Then on Saturday, I was flipping around and came upon the end of "Blazing Saddles," when they are crashing into other movie sets and end up running off the Warner Bros. lot.

My first thought on seeing that running of the actors: "Man, that looks like fun; it would be cool to do that." I was thinking along the same vein I do when I see Superman fly (in movies. I know no one has caught him on tape).

Reality then hit and my second thought: "Damn, everyone can do that."

What?

I went to an open house party today. My friend retired last month and is leaving for South Africa on Sunday.

I met her because she raised service dogs, so a lot of people there were comfortable with disabilities. Not all those people, though, know that I am awful hard of hearing.

At noisy gatherings, I normally just try to fudge it if I don't hear somebody. I nod, say "OK" and smile. That didn't work tonight.

This guy asked me something and I nodded, said "OK," then smiled. After each one, he still looked at me kind of confused and kind of expectantly.

I stuttered and smiled some more, but the darn guy just continued to look at me expectantly.

Finally, I just said, "I'm speechless." He stopped looking expectant, now he just looked confused.

Probably because I just said I was speechless when he asked how old I was or something.