Wednesday, November 28, 2007


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.

Tuesday, November 27, 2007

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.

Monday, November 26, 2007

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."

Sunday, November 25, 2007

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.

Wednesday, November 21, 2007

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 d├ętente 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.

Tuesday, November 20, 2007

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.

Sunday, November 18, 2007

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?

Saturday, November 17, 2007

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.

Thursday, November 15, 2007

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.

Tuesday, November 13, 2007

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.

Monday, November 12, 2007

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 ..."

Saturday, November 10, 2007

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.

Friday, November 9, 2007

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.

Wednesday, November 7, 2007

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?

Monday, November 5, 2007

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.

Saturday, November 3, 2007

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.

Thursday, November 1, 2007

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.

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