Wednesday, December 30, 2009

Bruce Springsteen on PT requires diversions into God, politeness

Today was my last PT appointment. I think it is because I am in peak physical condition.

As an example of my fine fettle, consider one of my new exercises: It is called toe raises. With my heels flat on the floor I am supposed to raise up the front of one foot then the other. It is really freaking hard. It is embarrassing enough to make me wish I were blind so I couldn't see other people looking at me. Almost ...

My balance when I am sitting seems to have been a happy surprise to Julie, my PT. I suspect it is good because I am a former pony boy, or para-Equestrian dressage rider. I also sit up straight and don't use a back support sometimes when I am watching TV. Usually I have to be in my chair to do it and there has to be a show I want to watch. I can't be surfing through 57 channels.

I also did a little standing at the appointment, and Julie wrote down on my exercise sheet daily standing at a sink. It feels so good to be my own two feet. I have crossed my heart and promised that I would not become a jerk if I could walk. This is the real world, though, and I need to stop counting on a miracle.

I can't help it, though. God has been part of my life for as long as I remember. Even if my soul went walkin', I stayed here, right near my God. Even if I can't believe right now, my very being, my soul driver, if you will, counts on God to care for me. I just do not at all see how God's care could not include good health. His son did not have good health, I realize, but wasn't Jesus suppose to change things?

I know that being in a chair does not make me less of a real man. But who would it hurt if I were completely able? I guess if everyone were cured, Julie would have to find a new job. She'd probably dislike that because she is a good therapist. That, of course, is an "all or nothing at all" view. Maybe only cool people could be healed. Again, though, that would be unfair to Julie because then she'd have to work with jerks. But I don't like this roll of the dice system we have now.

After standing, I looked backward. My chair was where I left it, so I just sort of flopped into it. In Julia's eyes that was not cool. You should reach one hand back to make sure the chair is where you left it, she said. I thought about replying: "That ain't the way I roll, sister," but instead I just agreed. When someone is a great help to you, it is a man's job not to be rude. A woman's, too.

Yikes! There are a few stretches here, but I was trying to reference all the song on Springsteen's Human Touch. See last post's comments. What I found is that it is hard to talk about Springsteen songs without talking about God.

Tuesday, December 29, 2009

Time to be serious

Apparently, I have nice abdominal muscle control.

I know all the ladies out there are swooning and fanning themselves with handkerchiefs, but that is what my physical therapist said today.

Of course, we should probably take it with a grain of salt. She said it because it took me like 30 seconds to sit up from a lying-down position And as soon as she said it I chuckled a little and almost fell off the mat.

I had another good PT session. A friend told me that she always felt better just having the therapists exercise her muscles for her. Mine don't do that, but I like going, I suspect, because of the Human Touch thing. Just by resting a hand on my leg, the therapist helps my nerves calm down enough to do the exercise. Today, for instance, I rode a stationary bike, and the therapist was able to hold my right heel so it did not hit the pedal.

She probably won't come over and hold my heel whenever I want to ride my trike, but I am far away from restarting my own riding, I fear. After five minutes of rhythmless pedaling, we stopped and she said: You had a good minute and a half there of pedaling. She was being generous.

I did, however, show not just my ab muscle control but also my skills sitting without holding on to anything. Not that I am going to do it for fun and again, when she praised me I laughed it off, which caused me to lose balance and nearly fall.

I need to be less jovial.

Sunday, December 27, 2009

Don't think

I spent much of last night killing Romans.

I decided it was payback for the Slaughter of the Innocents because Herod was closely allied with Rome.

Really, though, playing video games (Civilization 3) just allows me not to think about anything: like why, as thrilled as I was to see a bunch of my relatives, I just wanted to be alone yesterday.

Thursday, December 24, 2009

Someone is watching over me

We joke that my little sister is turning into Mom. She should be so lucky, but maybe there is a bit of truth to the theory.

For as long as I can remember, I have laughed during prayers. I hope it is seen as me making "a joyful noise" or something. Prayers at dinner are particularly troublesome.

At dinner each day of Advent Mom recites a prayer: "By day and by night and in every season, you watch over us, oh Lord."

I don't laugh, but I am just not sure I can believe that. I fall far too often to think someone is watching over me ... unless that someone is really in to slapstick. I have prayed too often -- I don't ask to be cured -- just not to get worse. And yet my stumbles keep growing more common.

Mom has said she will believe that God cares for me ... until I am able. And at dinners with my little sister during Advent I have noticed that she squeezes my hand as if to say she believes that for me, too.

Or maybe she is just trying to get me not to laugh.

Monday, December 21, 2009

Out-of-control ballet dancer

My physical therapists always ask me: Did you fall recently?

I never really know how to answer. "Duh, I have Friedreich's ataxia, don't I?"

But at my next appointment I will tell them about today and I will ask them whether AFOs are for me.

I fell today while transferring to the toilet -- twice. Luckily I was clothed both times. The first one, I sat on my wheelchair joystick, bending it pretty much beyond repair. The second time I sat on the toilet paper holder at home and broke it pretty much off the wall. Neither hurt much, at least physically.

Both happened because I was wearing AFOs, which do not let my ankles bend at all so my feet can't reach the ground from my wheelchair. I slide forward and eventually my heel touches the floor, but depending on the angle of my leg no other part of my foot does. I then pivot around on my heel, feeling like an out-of-control ballet dancer.

Sometimes, it works OK; other times -- like twice today -- it doesn't.

Sunday, December 20, 2009

Gold, Frankincense, Myrrh and lots of super pals

Oh, yes, True Believers, it is time for Matt's Nativity.

A little background: 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 are the ones from 2007 and 2008.

This is a unique edition in several ways. First, Jesus. Mary and Joseph are portrayed by Woodstock, Lucy and Charlie Brown instead of an actual creche representation. Charlie Brown and pals were my Christmas present from my little sister. They are pretty awesome, though, Lucy's headdress is a little wacky. The Peanuts folks are about the only action figures I got this year. I got a DC Crisis three-pack for my birthday, but it isn't opened. Not that I want to keep it well-preserved; I just do not have anywhere to put the figures. All the visitors to the manger are from my niece and nephew. This is another reason moving in with them will be awesome when the house is done next year: They have great toys!

But enough above that; let's see who went to Bethlehem this year and why:

From left to right, after Charlie Brown, Woodstock and Lucy comes X-Man Jean Grey, who is actually my sister's. I know this because I gave it to her for her wedding. It was part of a Marvel Famous Couples two-pack with Cyclops. With that lustrous red hair, Jean Grey is clearly a modern-day representation of Mary Magdalene, who normally does not appear in the birth narratives. Jean Grey has also died and returned from the dead more than I remember so clearly she will be good for Jesus to hang around with.

Animated series Batman represents Job, a man who suffered mightily but didn't curse God. Batman's parents are killed in front of him, he dedicates his life to fighting crime and what does he get? That goofy '60s TV show. Incidentally, I have written about it before but I have always disliked the end of the Job story; God asks Job things like this: "Have you an arm like that of God, or can you thunder with a voice like his?" And Job backs down. I believe Job is right. Question away!

Sampson was strong because he always had hair. He was also a real dope about women. Delilah kept asking him how he could be bound. He'd tell her some lie. She'd do it and call the Philistines to get Sampson. Then after he kicked some Philistine tail, Delialah'd cal him a jerk and ask again. Three times, this happened. Then he told her it was the hair. Yeesh! She better have been hot. Hopefully, Juggernaut, the next figure, is not as dopey. With his helmet, which is missing, he is almost invulnerable. But without it, half-brother Charles Xavier an zap him with a little mind slap and put him down.

Hulk is just there to smash, let's be honest. Herod's soldiers are in deep.

Hulk's cute cousin She-Hulk is sitting next to him. (C'mon, there is nothing wrong with being green!) She-Hulk is also a lawyer. That would make like a scribe or something back then, but we know she was not a jerk like most of them. She is there to provide the required birth certificate so if people question whether Jesus was real, or whether he was born in Bethlehem or a terrorist training camp in Kenya, She-Hulk's paperwork will settle the issue.

Finally, looming over everyone is Iron Man. The button on his breastplate causes him to speak and his hand to light up as he shoots off repulsor blasts. Unfortunately, I could not get this in the photo. Iron Man's alter ego is a womanizing drinker, and at first blush he does not seem like a good fit for the Nativity. But he clearly recalls Biff, Christ's childhood pal, who Christopher Moore wrote about so well. I was sure I had written about my love of this book but I guess not. Suffice it to say, I think Heaven will be much better a place with people like Chris Moore and Biff, and I would not want to deny Jesus a good pal so Iron Man (I-run Man, according to my niece) is there.

That's it. A small crew this year. Next year, I'll be in a new house with all my figure back and they are all coming!

Saturday, December 19, 2009

The Dark is Rising

Every time it snows more than a few inches, I need to read Susan Cooper's The Dark is Rising. Well, really I just want to climb under the covers until June, or May at least, but the book i a little more doable.

The book is part of a wonderful series of children's book full of Arthurian and Welsh legends. It takes place around Christmas, but the reason it is my must-read on snowy days is that the bad guys stir up an awful snowstorm. Just about everyone in the town has moved to a giant mansion to conserve warmth and just help each other through it. But the dark and its cold keep coming. Snow falls down the chimney and the fires go out. The snow is so oppressive.

But then the good guys strike back! The cold breaks, and the snow turns to rain.

I wish there were good guys who could alter weather like that in real life. I know everyone feels snowbound with storms like this. I just wish I could do something, anything to free myself, like shoveling. I feel so powerless, and the worst part is that my books are in storage, so I can't even read my book.

I really need the tank chair.

Friday, December 18, 2009

Snow go

I hate living life according to what might happen. But it is not always up to e.

I did not go to Delaware because of the impending snow.

If I could drive and weren't disabled, neither the threat of snow nor snow itself would stop me.

Thursday, December 17, 2009

Medical vacation

Today was the first day in this week of my Christmas vacation that I did not have to be in a medical office. Monday I had physical therapy. Claren ad a test Tuesday, and I had the ultrasound yesterday. Friday, I go to Delaware's DuPont Children's Hospital for hearing tests.

To celebrate I slept till noon.

Wednesday, December 16, 2009

I am not pregnant

I had an ultrasound today. Thankfully, I am not with child (that would be a wacky and disturbing virgin birth, huh?).

My kidneys also checked out, so did my bladder. The radiology doctor, I think, was a little put out that the guy in the wheelchair has no kidney or bladder problems. Why did your urologist send you for these tests, she wanted to know. Maybe she was bored and hoping for an interesting case. I am not sure my answer: to rule things out, was satisfactory either. Nevertheless, she gave me the good news so I am a fan.

My hearing is also surprising good, although my awareness leaves something to be desires.

They instruct you to show up with a full bladder, which seemed like an iffy proposition for someone who has continence issues. But right after they take a few pictures of the full bladder, they have you go to the bathroom and drain your bladder. Then they check to see if your bladder really did empty. Then they scan your kidneys.

In the bathroom, I failed the awareness test by not noticing I had pulled the string marked "pull for help." I am still not sure how I did that. I was just glad I hear well enough that when my radiologist hollered in: Are you OK, I was able to say yes. She then asked me kindly to his the red cancel button on the wall.

After I got back in the ultrasound room, the radiologist looked and said: Yep, your bladder is empty, good work. The radiology doctor said: Really clean, you didn't use a catheter, did you?

I like praise and pats on the back as much as ... no, more than the next guy. But I did not feel like I had done much. My bladder works ... WHOO ... PARTY.

Sunday, December 13, 2009

My cookie shame -- vanquished

Last night, I went to a fun party, played a hardcore game of Taboo and finally managed to get a monkey of my back.

Back in grade school, we were having some party and I brought in these fabulous cookies called Chinese Noodle Cookies, which are basically peanut butter, Chow Mien noodles and butterscotch chips. The ones I brought to school even had chocolate chips and little marshmallows.

With horror, I watched as no one at them and then I had to take the whole batch back home. Darn my classmates! Plus, really stupid. Those cookies were awesome!

I have carried this shame for close to 30 years ... until last night.

Most 38-year-olds are probably not in any position to ask their moms to make them cookies to take to a friend's holiday party, and if they are in the position, they probably just wouldn't. Most people aren't me. I am lucky to have a mom who will bake for me and I am shameless enough to ask her.

And what did I ask her to make: Chinese noodle cookies.

People even ate them. I told one of my friends at the party about the grade school experience, so she pointed it out to everyone else there, but that's cool. As long as people ate them.

Matt or Tiger Woods: Who is the real cripple?

The attack atheist I used to work with was also very anti-politically correct. He wanted to know why he could not refer to me as crippled because it was clear that my legs didn't work normally.

I remember telling him that, in fact, my sisters did call me “crippled,” which another person heard causing her to cry out: No!

I had to explain that they did it as a joke, then I had to explain to him that being called “crippled” for real was pretty mean and that it was pretty arbitrary. How did you define normal? I am smarter than some people, I told him. Does that make them mentally crippled?

I am sure he didn't buy it, but I have been thinking about it lately with regard to knucklehead Tiger Woods.

I clearly have more common sense than he of the many, many affairs, alleged. I win hands down on integrity, too. I don't know for sure either, but I bet I could take him in a math test.

It seems to me that this superstar athlete is the real cripple here, what with below-average common sense, integrity, maybe math.

What kills me especially (other than that he was allegedly cheating on a really attractive woman):

Here I am struggling to put together life, a full-time job and exercise, which leaves my legs aching and tired and thus more unreliable than they already are. I can't quit my job to work on my issues. I'd starve.

But he can and did (at least for a while) quit his full-time job to work on his issues, which are his own fault. As far as I know, there is no genetic disease that makes you cheat ... a lot. People are even praising him (“Tiger Woods' golf hiatus is a good first step,” reads one headline).

Where are the newspaper articles about me and all the other supposedly “crippled” people who work every day and deal with their disabilities as best they can? Those who don't have the luxury of quitting their jobs to learn how to be a better person or whatever we need to learn?

A friend accuses me of always trying to get my picture on the front page of our newspaper website. I am much more deserving than Tiger Woods.

Friday, December 11, 2009

There's no I in PT

I am quickly learning that physical therapy this time around will be both time-consuming and not something I will be able to do alone.

I went to the hospital at 7:30 this morning, just like I did yesterday. The difference? Today I had an appointment; yesterday I sat there until the receptionist told I was 24 hours early.

My therapist for the day and I went over a few things. I got her to explain how I could do the seated exercises in my chair rather than a couch. She also tweaked some exercises I was doing. Well, not changing the exercises, just the reps.

When we got to the lying-down exercises, she gave me some new ones and added the idea that I would probably do better with someone holding my knees when the exercises call for bent legs. With her keeping my knees steady, I was even able to do a bridge – raising my butt off the mat. I haven't been able to do that in a while; failing to do a bridge is one of the reasons I went back to PT.

My 5-year-old nephew could hold my knees, too. There is really no strength needed. The person just keeps them steady.

I know my nephew would get bored and wander off. My point was that even a child could do it. But I am pretty sure that he is not yet ready to be a member of Team Trott.

Tuesday, December 8, 2009

You want me to exercise how often?

I had my first non-evaluation physical therapy appointment today, and it went well until I asked my therapist of the day (I have a different one each of the first three appointments) how often I should do the exercises.

I was thinking every other day. She says: You need to do them at least twice a day.

It is not that they are hard and there are only six at the moment. But four of them require me to lie down on a flat surface. A bed works but a mat is better. Mats have less traction and I am sliding my feet around.

Even if I do the exercises in bed, I need to take my shoes off. I would say then that the six exercises that I need to do twice a day will take a minimum of 20 minutes to do once. That doesn't sound like a lot of time, but you also have to count recovery time.

When I get tired, my movements become jerky and rapid to the point that I am sort of a danger to myself.

And then there is the unexpected, which you can't plan for, but is expected with Friedreich's ataxia.

I think some of the issues are because the therapists are all 20-somethings who have not done much work with permanently disabled people who still work full time.

My physiatrist who retired in fact thought exercising was a bad idea. Maybe one exercise a day, she advised. She had plenty of experience with people who are disabled yet have full lives.

Of course, maybe I am just trying to wuss out of exercising.

Monday, December 7, 2009

Taking the plunge

I finished my second session of swimming last night with a bang. And I don't mean the dinner after class that I went to.

We went to lane 2, and I started off with 10 lengths of swimming. I had on the vest, and they weren't holding my head at all. I know this because I kept running into the lane's side ropes. When they are holding me, I glide pretty straight. But last night I was all over the lane.

i know your head acts as the rudder of your body so you turn the opposite of the way you want to go, and I was trying. It was easier to just push off from the lane ropes.

After the swimming, I walked three lengths. That was really tiring.

Then I just did different leg exercises while a volunteer held me up.

I was done for then. But I still put my face in the water a few times, and then had one of the volunteers pull me through the water, so I get used to being on my stomach. I was supposed to kick but I couldn't. It is surprisingly hard to get pulled through the water.

Finally, instead of lifting up the lane rope, I went under it. Whoo!

As for the dinner, it was nice. It was at a local pizza place, and I couldn't hear. That was why I was so tired yesterday, I think. Too tired to write.

Saturday, December 5, 2009

Giving braces another try

I am back in AFOs these days and so far they don't suck.

My original ones allowed me to bend slightly at the heel. But they also rubbed against my ankle bones something awful. I could not wear them, even though I liked how they kept my foot at a good angle when sitting.

The new ones are real restrictive, just one piece of molded plastic from calf to toe. No hinges like the other ones. They padded throughout, too. Nice.

It is going to require some re-learning how to transfer, though. Actually, I'll just have to transfer the proper way consistently. You generally want to slide forward in your chair to transfer, but that of course takes time and patience. I often just get up. No doubt, this is part of the reason I also fall a lot.

The new AFOs require me to slide forward because they do not let me extend my foot at all to reach the floor. I need to slide to the edge so my foot hits flat on the ground.

I am not in love with them because someone else needs to put them on me. Not real independent, so we'll see.

Just like Tiger Woods, I too know the pressures of fame. I am not an idiot to sleep around on my wife or whatever "transgressions" mean, but I am writing the first clarification for this blog. A correction was sought, but I stand by my writing.

I wrote on Sunday that a friend at work said I was overreacting by being annoyed that someone walked right into the wheelchair stall as I washed my hands. My friend took exception, saying that she felt it was uncool but did not believe the guy deserved to die. I responded that I did think he should die (I may have said that if I had a hand grenade, I'd have tossed it in the stall. This was, of course, a lie. Do you have any idea how long it would take maintenance to repair and clean up grenade damage?) I pointed out that given my execution stance she did in fact think I overreacted. Hence, no correction. But to clarify, she does think the guy was majorly uncool, like school in summer: "No class."

Thursday, December 3, 2009

Even a service dog's poops are important

In hindsight, I totally should have listened to Claren's poop.

No, of course the poop didn't talk, are you crazy? It was metaphorical ... well, real poop, metaphorical talk.

I went to the first of several physical therapy appointments to help get my legs to work better, or at least to try. Claren had no interest in being excused in the 15 minutes we were outside in our yard, but the little circle of grass by the flagpole in front of Virginia Hospital Center apparently smelled just right.

After I had stretched out to nab the flagpole poop -- there was no curbcut up to the grass -- I made it o the appointment. Mom had dropped me off in front of the hospital, gone and parked, and she still beat me there. Partly because of the poop, partly because I dropped my folder with medical info outside the honkin' big revolving door. Luckily, a woman grabbed it and brought it in.

The appointment was just an eval, but I think we have a plan. They got to see how wussy my legs are, and they also seemed surprised by how much I fall.

After the appointment, I went to work. That was OK until the afternoon when I went to the bathroom. I was sitting in my chair afterward and I fell forward, maybe I coughed, I forget. I was kept from hitting the ground by my head, which smacked into the stall wall.

I kept trying to stand. I had hold of a grab bar and I put my feet under and pushed. But instead of rising up, my feet bent at the ankles and my feet flopped over.

I am glad no one came in because I was on the floor for a while. I started thinking of the Springsteen song Wreck on the Highway, and wondered if I would be calling out "Mister, won't you help me please?"

Luckily, I got up eventually, just in time to go to a meeting on our company restructuring, which was kind of pointless since I hear poorly at meetings and couldn't sit up front because it was held in the cursed auditorium that has stairs to the front.

One thing a lot of people may not realize is how tiring and hard it is to try to listen when your ears are really not up to the task. My head was pounding and I was so tired. Of course, I then had to go do the work I missed while I was at the meeting.

My ears do work better on metaphorical talk. In case you are wondering, the poop was screaming "GO BACK TO BED!"

Tuesday, December 1, 2009

Many rivers of evil carp to cross

I read a headline this noon-time that said "Fish kill eyed."

My immediate reaction was to think, "Goddamn carp," because they were the fish in the story. "I have eyes. Are they somehow coming for me? Like I don't have enough to worry about?"

For all I knew, Osama bin Laden had perverted Dr. Evil's dream of sharks with laser beams or at least some angry mutated carp. Or maybe these toys had come to life.

I then read the story and it turns out that officials were planning a fish-kill to try to control the invasive carp. Carp are not targeting the masses with eyes.

This was a load off my mind, especially because five minutes later I got an e-mail that said the company was firing 26 people.

I wasn't among those let go, and I didn't know most that well. But who cares? People lost jobs, and this round of cuts was a real shock. I honestly thought things were getting better.

I spoke a while back of the Springsteen cover of Trapped and how I felt Trapped. Another Jimmy Cliff song Springsteen covers is sitting in my mind today: Many Rivers to Cross.

I doubt Jimmy Cliff, or Bruce Springsteen for that matter, and I have much in common. They probably don't know the anguish I have been experiencing lately as I find my legs failing to help me back into my chair or onto my bed. Do they know what it is like to stub your toe pretty innocently but have your skin be so thin the bathroom floor becomes slick with blood? (There is actually some still there tonight.) Or just to be alone, in a world of couples? The problems change, but everyone's

Got many rivers to cross
But can`t seem to find my way over.

But with my luck, the rivers I have to cross will have bloodthirsty carp.

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