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.

Sunday, November 29, 2009

Glee doesn't get a free pass

Anyone who cannot hear well or has a loved one with poor hearing knows that it is profoundly unfunny.

I am disappointed then that Glee played for comedic effect the half-deaf choir director last week.

Perhaps they were trying to show the difference between children, who seemed moved by the deaf choir's performance, and Mr. Shue, who acted annoyed and exasperated by the hard-of-hearing director. But I don't think that was it.

The disability of the director was played as a joke. Like Mr. Shue kept saying "your cellphone is ringing," only to have the director respond to some unasked and unrelated question. It was SO funny.

As someone who doesn't hear his cellphone 90% of the time I am now rooting against the Glee Clubbers, even if they do have a wheelchair user.

Saturday, November 28, 2009

A little catch-up

CLARIFICATION: My friend took exception when I wrote that she said I was overreacting by being annoyed that someone walked right into the wheelchair stall as I washed my hands. She said 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."

When I live in my new house, I will still be tired, which is one reason I have not written for almost a week.

I have been working the afternoon shift for the past two weeks, and I go back to it on Wednesday. It is not such a bad shift, but there is no me to do other stuff when I am late. And on Friday, I worked 9:30 to 7, which was cool when I was there because there is less to do on the day after Thanksgiving and I had time to do some "bells and whistles" that I often have to do without. But I was so tired.

When we live in the new house, however, I will have a place to retire to and write. Or be anti-social, if you will. I can't wait.

So here then are some things that happened this week but I was too tired and social to write about:

I was in the work bathroom drying off my hands and this guy walked in and right into the handicapped stall. "Walked" being the important word here. He had no apparent reason other than that stall is cool. I thought this was a ridiculously bold maneuver given that a person in a chair is in the restroom, watching. I wanted to say something to Claren like "Let's leave the bathroom with a wheelchair stall occupied by a walker." Or something. That is not too juicy a putdown; in retrospect I am glad I said nothing. I told a friend about this and she said I overreacted. Probably, but I am still bugged by it.

Oh, also at the new house (being blogged about now), I will have a private bathroom. I hate my bathroom now because it is off a fairly public area. Also, there is no exhaust fan to hide any odd sounds.

And I am the king of odd sounds. One morning, I was showering and had left the bathroom door cracked to keep it from getting super steamy. When I got out, my sister, who was not there when I went in, said: Wow, your showering tires me out. She was referring to the many grunts and groans I made.

It's true. Showering tires me out, too, sometimes. Showers are supposed to be rejuvenating. I hate getting out a feeling worse than when I got in.

Bruce Springsteen answered this question in a recent interview:
"Does this feel like it might be the last run for the E Street Band?"
"No. We don't even really think of it."
Neither had I, but apparently a lot of his other fans did. I hope this shuts them up but I doubt it will.


Probably more stuff happened. I survived Thanksgiving -- it was actually nice.

Sunday, November 22, 2009

Getting my fat on helps me swim

Apparently, all I need to swim like a pro is a fat suit.

Not like a Monica from Friends fat suit or the one Barney wore recently on How I Met Your Mother. Just a little one, "to give you the fat you need," my teacher said when I saw it.

It was awesome. I swam some well and so independently, the two volunteers had plenty of time to talk to each other about things like SATs and what college they want to go to. Oh, man, I am old.

I did two and a half pool lengths on my own. In the middle of length 3, the teacher was hollering something to us and I thought we were stopping there so I stopped swimming. But we weren't stopping there, and actually I caught the volunteer off-guard and went under for a second. Surprisingly, it went well. I took a quick breath before going under and then held my breath.

After that I did more swimming with the fat suit using my legs. I also walked up and down the pool, but that was hard because of the suit. It tended to ride up on me when I wasn't floating.

We even took it off and I swam on my own for a length or two. Pretty awesome.

Finally, I was blowing bubbles in the water and to make that more interesting my teacher had one of the volunteers and I lock forearms and then he walked backward down the pool, pulling me off my feet, so I was floating and felt like I was really swimming on my belly. He stopped every five seconds so I came up for air. That was fun.

But then the teacher got a bigger volunteer to give me a bigger challenge. The teacher told me to kick, too, and I just lost it. We stopped and started again and he said "ready?" I said "OK" but left my mouth open, got a major mouthful of water and then we decided to call it a day.

It was a good lesson and I almost didn't go because Mom and Dad had gone out and my sister was real busy. But she sucked it up and took me. She even came to pick me up after I said "shit" and "ass" in front of her son.

Wednesday, November 18, 2009

Why is Neighborhood Watch stalking me?

I am working late this week and next, so I just got back from my walk around the block with Claren. While out, I was stalked by a white car with a magnet on the side that said Neighborhood Watch.

OK, "stalked" may be too strong, but they drove past me really slowly twice, and I have lived here off and one for most of my life but have never seen a Neighborhood Watch patrol car.

I was on the sidewalk letting Claren the Wonder Dog relieve herself the first time they drove past, and part of me thinks they just drove by again to make sure I picked up after her.

This would be a horrible abuse of power if true, but I can't really figure out why else they drove past us slowly again.

I mean if they were worried I was a burglar, they are kind of morons. How many burglars have red flashing lights on several parts of their bodies? Let alone the wheelchair.

Actually, if they thought a wheelchair user was a burglar, it would show a remarkable lack of stereotyping, so maybe I should praise them for that.

Nah, they were just morons.

Monday, November 16, 2009

Doomed to repeat myself

I have to put cream on my hands and face to keep them at a dry consistency. If I forget they become like rice paper.

The other night I turned off my light, took off my glasses, then put Aquaphor on the backs of both hands. I put the dispenser back on the shelf and knocked off my glasses, which fell down the crack between the bed and the wall.

There I was hunting for my glasses with the cream precariously clinging on my hands. I could not wipe it in because then I'd be unable to turn on or off lights or anything else.

This predicament seems unique. Unfortunately, what follows is something I wrote years ago (when I was still walking a little):

So I go to bed a few nights ago. I have to use too many creams on various parts of my body, and the last one is hand cream. So I spurt some cream into my left hand, take off my glasses and turn off my light. I am getting ready to rub in the lotion, but I hear water dripping. I try to ignore it, but finally I decide I better see if I left my faucet on. So I turn on my light, put on my glasses and close my hand into a fist so the lotion doesn’t get everywhere. I don’t rub it in because then I could not turn off my light again or do many things with slick hands.

I somehow manage to get to the sink, and hold my hand under the faucet, but I can’t feel anything so I decide to turn the lights on to check for sure, as my hands can be a little insensitive at times. As I go to flip on the bathroom switch, I accidentally turn off all the lights, so there I am in the pitch black, balancing with a fistful of lotion. I quickly flip the switches back on and see the faucet is not leaking.

The trip back to bed, with the fistful of lotion, is mostly uneventful. I get back into bed, pull up my flannel sheets, take off my glasses and go to turn of the light. In the struggle with the light, it hits my glasses and I hear the awful sound of a lens bouncing. So I am lying there in the dark, with my fistful of lotion, and I feel around for my glasses. I put my fingerprints on one intact lens piece; then my finger goes through the other side of the glasses.

On comes the light again and I put on my now half-glasses. I find the lens and my glasses screwdriver and with my fistful of lotion, try to get the lens back into the glasses and tighten the screw. Somehow, I succeed.

Finally, I lay back down, turn off the lights and rub in the fistful of lotion. I was too tired that night to think “How much more?”


What I am pissed about, other than the annoying frequency of so's, is that I never say what water was dripping.

Sunday, November 15, 2009

5 yards down ...

In keeping with last week's "do the hard stuff first," I actually did a little swimming right from the get-go.

Mom can even vouch for me. The teacher watched me swim about five yards, told me to take a break, went and got Mom, and had me do it again.

Then I did some walking and some swimming with the floatation belt.

The main problem was that it hardly gave me a chance to warm up. Not that it was even cold today, it was beautiful, but I still get cold in the water.

Also, when Mom got out to watch I started laughing and almost sank.

Thursday, November 12, 2009

Full stop

Because I am sure that I am not really starting to see the good in people, I have decided that my blog is just reaching a wider audience than I realized. Everywhere, people who have to come through Falls Church are saying to themselves: "Don't piss off the guy in the wheelchair; be nice to him or he might skewer you on his blog!"

How else to explain what happened today on a rainy day walk?

I was crossing the street and this SUV stopped to let me across, but about eight feet from the curb, my thumb hit a button on my chair that turns it off.

This is a totally stupid button-placement issue. It has no business being where it is, especially because I have asked the wheelchair salesman where to put your hand to avoid that button and he just more or less put his hand in the same position as mine and said you just don't touch it.

Anyway, the driver just drove on, no honking or nothing. Now that I think of it, I could be bitter he didn't offer help. After all, a wheelchair just dies in the middle of the road! What did he think was happening? Ass!

Ohh, that felt good. I'll give him a pass, though, because of what happened next.

When I got to the sidewalk, Claren immediately pooped in the grass. I was bent over in the rain picking it up, tying the bad and putting Claren on my caribiner so I could keep both hands under my poncho.

Not one but two people stopped, rolled down their passenger windows and offered to help. I said no and let me them go on, but I think I could like it here now that I am properly training the citizenry.

Wednesday, November 11, 2009

The local cops cherry tops ripped this holy night

It actually wasn't too holy unless you count being the eve of Mom's birthday or the eve of the WWI Armistice, but I went to bed right as some kind of ruckus started outside my window.

There were several police cars and their lights were shining right into the window. I tried to watch what was happening, but it is hard to sit up in a bed, especially one that is just a twin. Plus, a tree blocked my view.

I did see the officers looking into the car with flashlights, and I worked myself up into thinking they were searching for someone who had probably jumped out right before the cops arrived and who was probably making his way to our house even now, opening the door I didn't lock. Either that, or the bad guy would see my light, decide I had seen too much and come get me.

I actually got up and went to the family room, allegedly to get a comic to read since the lights were too oppressive. Mostly, though, it gave me a chance to check that the door was locked (it was).

Then the police left. Mom, who had a better vantage point upstairs, said everyone drove off in separate directions. Weird.

Tuesday, November 10, 2009

Do I like people now?

A friend of Mom and Dad's, and the family's really, had a massive stroke last week and died. It was out of the blue.

I went to the funeral parlor today for her husband, I guess. He and his wife belong to a group with Mom and Dad. I wanted to tell him that his wife always checked on me when they were meeting at Mom and Dad's house.

I did tell him, although I am not sure he really heard me. He heard Dad who repeated it, though.

Not a funeral home fan. Too crowded, too loud. Too many too's. But it was good.

I saw other family friends, although one friend gave me a hug, and her handbag got stuck on the wheelchair joystick so I whammed into her shins. She called me dangerous, but I was like ... ummm, your fault, babe. Good thing it was too loud for anyone to hear my thoughts.

One woman, a daughter-in-law of the woman who died, surprised me. She said something, and I told her I don't hear well. But instead of just abandoning me she kept talking and I kept shaking y head that I didn't hear. Finally she came around and sat down and talked right into my face so I could hear her.

Another woman offered to go in front of me to move people out of the way if need be. She said she had the body for it. She was old enough to be my mother but I wouldn't cross her, but no, at that point I just wanted to leave. And on the way out, an old man cleared the way.

Another post about nice people, what is wrong with me? Snap out of it!

And let me just get this out of the way: When I die, no dark clothes allowed. I want to hear Lionel Richie singing.

Sunday, November 8, 2009

Swimming and walking fool

Oh my gosh, walking is hard! How do you people do it?

As I was taking a break from six or eight laps of swimming, my teacher said: How about walking? Actually, it wasn't really a question. I was eager to do it anyway.

With one volunteer under my arm on my left and the other on my right, i walked the 25 yards of the pool. It was really more like marching because then I can see and feel my feet. It was cool.

It was also exhausting. I think I was really grimacing because my teacher, who was watching, asked: Does it hurt? No, I told her, just tough.

Extra tough because I started with about six laps without the flotation belt and with minimal head-holding by volunteers. We wanted to try the hard stuff before I got tired. It worked.

I did some good almost-swimming, although whenever I feel water coming up to my eyes or over my face, I take a deep breath. Of course, it doesn't matter because the volunteer is right there to keep me from going under, but it seems like a dangerous habit.

Saturday, November 7, 2009

Man down!

I hate the sidewalks of Falls Church. They are old and cracked and narrow and often have utility poles sticking up in the middle of them.

And that doesn't even mention the curb cuts, or alleged curb cuts. They often start an inch off the road and then they are so steep up to the sidewalk.

Normally, then, I always ride on the street. But today, I got to Little Falls Street on the bike trail and after deciding to come home on Lincoln Avenue, I figured I better get on the sidewalk. Otherwise, my little sister would yell at me.

I got up the curb cut, but as I tried to make it up the steep part of the curb cut to the regular sidewalk, there were issues.

My right wheel bounced off the curb. For a moment I balanced precipitously.

"Man down," I warned Claren, and then the wheelchair and I toppled on to our side into the street.

When I was a sophomore in college, I flipped a friend's car during a high-speed reporting trip down Route 29. We were all fine, but when the car came to rest on its roof in the median, I remember starting to panic because I couldn't undo the seat belt.

Similarly, when I hit the street today, I was trying and trying unsuccessfully to undo my seat belt.

I was still trying when this guy came up behind me and said something soothing and helped me unbuckled my belt and then pulled me away from the chair. His wife/girlfriend was pulling my chair upright and onto the sidewalk.

I was trying to show them how to unlock the engine, so the chair would be easier to move, but the guy would have none of it. Just sit still, we got it, he said. Finally, when the woman was struggling with the chair, he moved to help with it, and he said to the gal: Just help him sit.

Claren was just on the leash this whole time sniffing the helpers.

Even more than trying to unlock the engine, I was trying to pull up my pants. I wasn't quite mooning anyone, but as I was dragged away from the chair my pants started slipping.

Eventually, we got me back In the chair, and shooed off at least one driver who stopped and asked if we needed help.

You had quite an accident, the guy said. I didn't disagree, though I was totally uninjured (I am a little sore now and not sure if that is a result).

They waited to make sure everything worked OK once I started driving away, so I stayed on the sidewalk. After a block, though, I took to the streets.

You see why I hate the sidewalks of Falls Church.

The people of Falls Church, however, rock!

Friday, November 6, 2009

Taking a lesson from the Psalms

I want to be cured. I don't care if there is medicine involved or a miracle. I am just tired of being in a wheelchair (and yes, I was tired of it yesterday, too, just too tire to write this).

The Psalms usually make me feel less alone because I can always find someone in there complaining to God in some pretty severe language. And they come up with such ingenious reasons for being cured or saved or whatever.

The writer of Psalm 13 wants to be healed so his enemies don't see his death as a divine judgment against him. In 64, the writer says that if the evil people are struck down, then everyone will believe in God.

The writers weren't afraid of asking for violence either, which cracks me up. I can't even get to an elevator before it closes, and these guys are asking God to make their enemies' "children fatherless ... vagrant beggars, driven from their hovels." Or they ask God to shoot arrows at their enemies or cut off deceitful lips.

And whenever I think I am getting too terse with God, there in the Bible, Psalm 102, verse 3: "Turn your ear to me; when I call, answer me quickly." Even if I hypothetically call God a "son of a bitch," I think I am more respectful than that. (Not that I call God a son of a bitch, I can't write what I call him.)

My one beef with the Psalms is that they usually let God off the hook at the end, saying something like "... but you Lord are great and know what is best so I will worship you."

I think if I wrote a Psalm, it would end "I don't at all get it, God. For someone who claims to be powerful and loving, you don't act like it."

Wednesday, November 4, 2009

Bad genes not germs

I don't think I have the flu – swine or otherwise. Really.

It's just so hard to tell. Is that aching in my legs a result of swimming or falling or a seasonal disease? Damned genes or damned germs – which is which?

Work sent out an email ordering us to go home if we feel bat all ad. I always feel somewhat bad somewhere in or on me. Not sure if that counts, though.

After the email, I was less worried about my health, then about my appearance of health.

I know you are supposed to cough into an elbow (my nephew reminds me), but it is all I can do to not put my face through the computer monitor or fly into the desk when I cough. My germs are then sailing freely through the office, but Friedreich's ataxia is not contagious.

And I do cough. When I drink and the water goes down the wrong pipe ... When I don't drink and my throat goes dry ... When I talk loudly and it tickles my throat ... When I eat pretzels ...

I want a sign: I am not sick, just disabled. The wheelchair probably explains the disabled part so maybe just a sign that I am not sick or at least not contagious. But is that protesting too much?

Monday, November 2, 2009

Getting there

I was too tired to write about swimming last night. After all I had just swum 19 laps, three of them without a belt.

Also, one of the volunteers started letting go of my head without telling me. It was pretty cool.

Saturday, October 31, 2009

Long-legged, lanky people need not apply

I don't like to sound prejudiced, but I have decided I can't be friends with any tall people.

I was riding the elevator down to lunch with a co-worker who could, I think, step in for Jim from The Office and no one would notice. He not only looks like him but also has Jim's height.

On the elevator, I was able to pick up some of the conversation because it was just the two of us in a small elevator, but he kept talking on the way to the cafeteria. I just kept grunting in acknowledgement, hoping I wasn't agreeing to wear a puffy shirt or something.

I guess to be fair and logical, I need to come up with a cut-off height. Then I get a cardboard cutout of the Atom holding a ruler and saying: "You must be this short to be Matt's friend ... or you can duck when talking to him."

Thursday, October 29, 2009

Wheelchair pinball

I was riding down the elevator staring at the elevator glass, wondering how in the hell I broke the glass in the elevator last year.

What on earth could have possessed me to head into an elevator so fast?

Then I remembered the other day when I was trying to get an elevator to the garage.

Let me set the scene: Three elevators. I press the button at the center car. The one on the right opens. I get over there just in time for it to shut on my face. I press the button at the right car; the center one opens and I get there just as it closes. I press the center button again and the right one opens. This time I made it in, but I felt like a pinball.

Tuesday, October 27, 2009

Hurry up and get well

Mom said her current hospitalization was not to be fodder for good bitter. If she meant that, she ought not to have stayed at the hospital an extra day, which may have provided her with a good, needed rest, but more importantly it has boosted my worrying about her.

I mean, first she tells me it is a minor thing in an area boys and their mothers do not discuss. Then I learn that it is 3.5-hour thing, minor or not. Not she is still in the hospital, going on two whole days. I swear. Moms are trouble.

Sunday, October 25, 2009

Quarter-miler feels old

This is the first night in three that I have not gotten down on the floor and done a few exercises. I m trying to do little exercises each day, but tonight I am taking a break after swimming a quarter-mile! Actually, a little more.

I feel old, though, because I was several years older than both of my helpers put together.

My teacher did make fun of me when she met Dad, calling him "the infamous driver, I mean father."

Saturday, October 24, 2009

This is not dedicated to A.J. Jacobs' wife

In The Know-It-All: One Man's Humble Quest to Become the Smartest Person in the World, my new favorite author A.J. Jacobs fumes about Dante and Petrarch dedicating their works of art to married women they had loved from afar for years. "Stalkers," is the word A.J. uses.

I agree with him, although I am not sure The Inferno is really a love poem. I know nothing about romance, action or getting some, but if I were wooing a woman I would not say: "Hey, I just wrote a long poem about hell and its inhabitants and I dedicated it to you." I mean maybe that is the way to a Goth girl's heart, but how many many Goth girls am I likely to woo?

The bigger problem: I think I am in love with A.J.'s wife, Julie.

He makes her sound perfect for introverted, weird writers. She does stuff and brings him along, getting him out of the house, or at least tries.

What won me over to her completely is his story on page 163, where Julie wrote "Where's Julie?" at the appropriate point in the j's. I'm still not sure why, but this may be the coolest thing I have read. It made me all tingly.

I am not sure how she feels about wheelchairs and nasty disabilities, but I have faith in her.

I have just started A.J. Jacobs' next book, The Year of Living Biblically: One Man's Humble Quest to Follow the Bible as Literally as Possible, and I am already getting bombarded with the coveting my neighbor's wife thing. Boy, is somebody nervous?

Friday, October 23, 2009

She probably wished it was an obscene caller

If I don't write this, my little sister will bitch and moan about how I ignored her. So shut it.

Mom and Dad are out tonight and I had just come back from a walk with Claren, the 10th wonder of the world (Andre the Giant is the eighth and I am the ninth). On my return, my seat belt again came unbuckled. I am starting to wonder if I am doing it when I bend over.

I fell out of my chair -- there is nothing quite like the feeling of not having the seat belt grab you when you were sure it would -- and to make matters more interesting, I needed to use the bathroom, of course.

I was not at all hurt and tried to get in my chair but failed. Breathing a little heavily I called my sister for help. She came right over, apparently scared it would be worse because I was breathing so hard.

Thanks, dearie.

Wednesday, October 21, 2009

My career as Thumb Wrestler -- down the tubes

Turns out that people with Friedreich's ataxia have a perfect excuse for losing at Thumb Wrestling.

Of course, we have an iron-clad excuse for not dominating any sport, but I just learned the Thumb Wrestling one today at the Muscular Dystrophy Association's FA clinic.

You and an opponent assume the Thumb War stance and the opponent starts pulling back but keeping his grip. You will find your thumb getting lower and lower. It is pretty odd.

It was my first time at the clinic, so I had to do the same battery of tests I have done for years. The thumb one was the only new one.

I'll get back to the tests in a minute, but one of the reasons I went was to get some advice on my AFOs, or ankle braces. Now I wonder: How do I tell the folks who made them that the guy at the clinic (albeit from a rival orthotics company) said they totally suck, are made wrong and no wonder they hurt? He made a persuasive case to me and Mom, but I mean what do I do now? He said the company I used is not great, and if what he said is true, I have no confidence in the company. I mean they did not seem so great to me anyway, and it pisses me off my rehab doc recommended them. But I know they won't give me my money back to get AFOs elsewhere.

Anyway, back to the tests: Doctors have me touch my nose and then their finger. They hold my head and have me follow their fingers with my eyes. They drag sharp objects on the bottom of my foot. The poke me with pins. They test sensation on my hands and feet, They try to get reflexes and pull my arms and legs to test my strength.

I tell jokes ("Only one doctor ever got reflexes"), offer information ("my feet are really bad") or make small talk ("that's a new one" in reference to the thumb test. The doctor told me it was an old one, just one of several ways to test whatever). When I am with doctors, I am on. I need to shine. They -- and it is always a they with me, doctors always bring their students to see me -- need to walk away thinking: "That does it, I am changing my specialty to neurology and will not rest until we cure this accursed FA." If they are cute female med students, they are also welcome to marry me.

After the appointment, where I also learn that the latest potential treatment is not turning out well and the doctors mostly ignore the anecdotal evidence that my elimination issues are related to sitting in a goddamn wheelchair all day, it hits me. I have failed these tests ... again.

Mom says it is not a test like that, there are no F's. She is right, of course; I know this in my head.

In every other part of me -- heart, soul, etc. -- I have proven to be disabled. And I still need to tell off the AFO company.

Tuesday, October 20, 2009

What's wrong with dessert?

It was such a nice day today, and I was off work so I could enjoy it.

It was so nice, in fact, that I considered going outside after lunch and lying on the ground. My sister would no doubt freak when she brought her son home at lunch to find her brother lying on the ground.

The joke would have been on me, though, because she didn't come home at lunch, meaning I'd have been stuck. You have to be willing to suffer for a joke, but that would have stunk (and yes, I am exaggerating because I would not have been stuck).

I decided Calvin of Calvin and Hobbes would do this kind of thing ... if Calvin used a wheelchair and had a really sick sense of humor.

After Sunday dinner, though, I know I am nowhere near the Calvin in my soon-to-be household.

At that meal, my almost 5-year-old nephew waged an ultimately unsuccessfully attempt not to eat the three grains of rice his mother put in front of him. Actually, it wasn't even that. He was trying to not eat the rice but still eat dessert. But because he is, like Calvin, a "dessertetarian," I guess it was almost the same thing.

It was, as his father said, an Oscar--winning performance. He laughed, he cried, he crumpled into his mother's arms, he wandered away from the table, he did it all.

It felt like it took half an hour, and I realized how much trouble I am in if he does this at our new dinner table. His parents will hate me because I will totally fall for his show and undermine their efforts to teach my nephew to eat more than yogurt, breakfast foods and dessert.

Think of all the cavities he will have. They will probably make me pay for them.

Monday, October 19, 2009

Boring old FA

I had my annual physical today, which depending on the health insurance I have, can be an every-other-year event. There is very little to report. Friedreich's ataxia, for all the talk in neurology circles about being the "hot disease," is kind of boring.

I am going to a specialist to check out some stuff, but for the most part my doctor and I just chalk things up to FA. Can't hear well? FA. Can't sit straight? FA.

Don't get me wrong; I do not want a worse disease, but FA is not too mysterious.

Sunday, October 18, 2009

Next step: Wetsuit

I got to try out my long-sleeved diving shirt today at swimming today. It was OK. I can see how it would work well under a wetsuit because I was quite toasty when I was going into swimming wearing just it and my jacket (Well, and my suit and swimming suit).

I'll probably wear it again, but the biggest service it provides? It is so tight it clearly shows all the muscles I don't have.

Anyway ... swimming was good. I probably did 10 pool lengths and then worked on my legs mostly. It was pretty pathetic that I could not stand in the pool, hold the edge and kick my right leg out to the side. I did the left with no problem.

My helper let me off the hook, telling me it was OK to stop. I'll still probably be sore.

He is a good guy, my helper. I asked him why he helped out and he said that we spend too much time helping ourselves and it just feels good to help other people. If I am just going to leech off others, I am glad it makes them happy.

Saturday, October 17, 2009

I am heartily sorry

Two public apologies to make after I took claren for a long walk on the bike trail today.

I am sorry, but I was unable to pick her poop up. It was on a slope next to the trail and between the trail and the slope was a small ditch with water. I went to the top of the slope and tried to get the poop by going down toward it, but I was a little worried I might get stuck.

I also apologize to Jackass McAss (I am sure that was his name) for the colorful language I used after he almost hit Claren and I.

I was crossing West Street at the bike trail in the crosswalk. No cars coming, I checked. Because it was raining I had a hood on so I didn't have much peripheral vision. As I was crossing the center line, I saw movement and stopped. Mr. McAss in his green SUV was attempting to drive between me and the edge of the road.

I mean really? Give me a break! I am in a crosswalk, in the rain, in a wheelchair, and you are trying a jackass stunt like that?

That is essentially what I yelled at him so I am sorry I was mad and used bad language when you almost killed me.

Tuesday, October 13, 2009

I do not need a 200 pound lawn mower

I was watching my little sister mow her lawn as we prepared to remember my grandmother's death.

Actually, it was not that creepy. We were celebrating her life, but we do it around the day she died. Her birthday is March 1, though, which doesn't invite outdoor celebrations. Maybe that is why.

I have talked about this before, but it is odd what you miss when you are in a chair.

I hated mowing the lawn, unless I got to use the riding mower. That was awesome. I am sure I could still do that, but I am equally sure that I would not be allowed to, so I don't try.

Mowing the lawn was cool at first -- I remember I was 9 or 10 when I got to cut the grass. I tackled Gram's front yard first and it took me an hour, about double what it took when I knew what I was doing.

I went around and around the yard in smaller and smaller squares. This couple of young adults walked by and the girl came up and said her boyfriend said it is faster to go in lines. It is. That is what I did later but that day I just said thanks and said I was going in squares.

It was tiring, smelly, sweaty and I always got blisters from holding down the lever that kept the mower running.

Explain to me then why I was watching my sister enviously. I even started thinking of adaptions that would enable me to cut the grass myself. If the mower weighed about 200 pounds, then it could support me. Of course, I would not be able to push that much of a mower so I would need it to be self-propelled, but real slow so I could walk behind it still.

Really, I hated mowing the lawn.

Thursday, October 8, 2009

Fear! Fire! Foes! FA!

I am testing out new ways to get assistance after a near-incident last night.

I like loudly saying "Awake! Fear! Fire! Foes! Awake!" the Horn-call of Buckland from The Return of the King. But part of me thinks that might attract too much attention. Kind of like why his parents tell my 4-year-old nephew that when he is outside he cannot sing "Somebody call 911 shawty fire burning on the dance floor."

But I need something.

Last night I was brushing Claren the wonder dog while sitting on the couch. Mom was at the computer across the room.

I leaned too far forward but instead of falling on to the ground I fell into my wheelchair. My left arm was pinned against the chair by the rest of my body, and my head was grinding into one of the metal pieces on the chair.

My right arm was flailing about aimlessly in the air. I swear if it had had legs, I think it would have been running back and forth waving a tissue.

I was not in drastic trouble. If Mom had not been in the room, I would have moved my head and slid down the chair, probably just scraping myself up.

But Mom was there, so I said "Can you come here?" thinking she would look and come immediately to help. Maybe I said to too softly, but long story short: She didn't come over.

In increasing loud tones, I added "HELP." "RIGHT NOW." I wasn't yelling but was loud enough to worried I might wake Dad who had just gone to bed.

She came over quickly then, and pulled me back up using my stupid girly arm. And I felt guilty for demanding help.

Tuesday, October 6, 2009

Yes, I can

After an appropriate amount of time -- say long enough to tell I was not concussed or likely to die from my fall yesterday -- Mom asked me a question I am sure everyone who has ever helped me up probably wonders.

Could you get up if I didn't help you?

I love the help and assistance, even if I do not always properly show it. It makes life so much easier.

But in all the time I have been falling, I think there has only been once that I could not -- given enough time -- get up on my own.

That was when I fell out of my chair and broke my collar bone. I needed the strangers who stopped to pick me up and get me back in the chair. Then I gutted out the 20 yards back to my condo and called for help.

To be sure, I will whine about it later, maybe make it sound real dire, but I have yet to meet a fall I could not handle.

Monday, October 5, 2009

One big safety violation

My 4-year-old nephew yells "safety violation" whenever he sees my sister, his mom, riding his scooter without a protective helmet. In fact, she told me, he actually ran in front of the scooter to stop her last time.

When my 20-year-old was young,  it was seat belts. "Safety first," he'd announce when he got in a car. "Buckle up for safety," he'd say, and his parents always did.

I am a longtime believer in buckling up for safety. One of the last trips to the emergency room was because unbuckled,  I reached forward to get a cup off the floor and kept going until I hit the floor. Good times.

Now I buckle up everywhere, but lately it hasn't mattered.

For the second time recently, my seat belt came undone somehow and I did not know until I leaned forward expecting to be held safely in place-- only to bash into something, this time the back door.

I hollered for Mom and was about to get back in my chair myself when she came down and helped me.

I still don't know what happened but if I don't get my seat belt straightened out, I may need to start wearing a helmet.

Sunday, October 4, 2009

Of course I am lame, why else would I use a wheelchair?

My swimming teacher called me lame today and it wasn't because I almost drowned or almost mooned a volunteer.

To be fair, she called getting my parents to drive me everywhere lame, and I suppose it is as I am 38. But I have decided that as long as they are willing, I will get a ride. It is miles better than the para-transit service, which is my other option. Anyway, I got bigger worries than getting my parents to drive me places, like you know, my actual lameness. (I don't mind her calling it lame really. She makes me laugh)

I almost made a really big splash as I was getting into the pool. I float over the water wheelchair usually, but my suit snagged on it. It came free fast but I felt water right against places my suit should be. I quickly pulled it up.

I had a big swimming day. I did eight lengths of the pool using my legs only, kind of frog kicking and bicycle kicking. Then I did six doing arms and legs. The hardest thing there is I keep whacking the other people in the lane. We stay in lane 1 so the teacher can watch us but so do other folks. It is full.

The last two lengths were without the floatation belt. I did a lot of floating on my own and worked to keep my belly full of air and floating.

My little sister can testify to this. She drove me and was sitting there when the teacher started yelling at her to "come here. " She did and saw up close I was floating.

To end the lesson, I went under water facing a volunteer, then I let my legs float up. I did it once, although water went up my nose. I said I could do it again – my teacher did ask if I could. I started fine, but my head dipped under too fast, before I was ready, so I popped back up but then rolled and went under not on purpose. After that we decided I was done.

Friday, October 2, 2009

Watch me walk

We have a health fair at work next week. One of the tests they offer, in addition to like blood pressure, is gait analysis

It might be because it was a long week and I was feeling a little punchy, but I asked one of my friends at work how amusing it would be for me to ask the gait people for an analysis.

I don't think I really could. Even if somehow I could justify making someone that uncomfortable, there is no way I could not laugh.

Wednesday, September 30, 2009

Wasting away again in listserv ville

I fell today getting into the shower.

Sort of.

I didn't hit the ground or anything, just slipped and scrunched up my foot getting on to the shower chair. But I never was in any danger.

I am wondering now when the first time I fell in the shower was. I had no grab bars until I moved back to Virginia 10 years ago, but I suspect I fell at least a bit before then.

The day I left Winston-Salem for Virginia, I was headed to the car and Mom was in the parking lot but not next to me. And SPLAT! I fell right flat on the sidewalk. I forget why or what happened. All I remember is being unable to breath and trying to get my breath back.

I began using a wheelchair full time when we got to Virginia.

At my apartment in Falls Church, I used to put a man purse on my shoulder, and using a walker I would head down to the mailboxes to get my mail. I could do it unless someone walked by and said hi, which would startle me so bad I would fall and they would feel guilty.

I used my walker a bit at my condo in Herndon to walk to the back of the condo from the living room. It was a narrow hallway so it was hard to fall, but I found a way. I also used to stand to do my dishes in Herndon. This worked but left me one hand to do the dishes so it took forever. I also was able to stand mainly by locking my knees, which my therapists were not too happy about.

These days I stand mostly to transfer or in the swimming pool.I do miss it, but I think I have demonstrated a fairly strong degeneration in my condition over the years. And there is so much more if needed.

Why, you might ask, am I proving to you that my Friedreich's ataxia is getting worse? Simple, because I am a wimp.

I wrote a while back about how I missed the crazy flame wars on the INTERNAF, the ataxia listserv, that used to pop up over tiny things. Now, Pudding-heads can say whatever they want and no one cares. I quote: "... i said to myself this is no life [using a wheelchair] as i always had been a active sportsman and look at me now." He goes on to say how the disease is not degenerative and that anyone who just sits in a chair will have issues. He says he can walk now, slowly, after exercising two hours a day.  It is not perfect, he says, but "it's much better than wasting away in a wheelchair."

Oh my god, fuck you.

If I was brave, I'd post the preceding paragraph on the mailing list.

Sunday, September 27, 2009

Another Sunday without drowning!

I made my return to the pool today, fun as always, even if there were lots of new people.

It was more the absence of people I knew that worried me at first. My teacher wasn't there and I did not see any volunteers until the last minute. Then one of my regulars showed up, and I worked with him and also a first-time volunteer who I suspect was many,many years my junior. Thankfully, she didn't call me sir.

I learned that I am better holding my breath under water than trying to blow bubbles. When blowing bubbles, I run out of breath and inhale through my nose so I can keep up the bubble stream. Or I start to. I remember as water pours into my nose: Don't do that! And I stop, too late to keep out the water but soon enough not to drown.

I also need to figure out what to do now that it is not hot out. My teeth started chattering while I was still in the water, and I wasn't even cold. It could get ugly. I am off to google for options other than a wetsuit.

Saturday, September 26, 2009

When I think of God, I groan

“The grace of God means something like: Here is your life. You might never have been, but you are because the party wouldn't have been complete without you.”


— Frederick Buechner

I stole this quotation from The Dude Abides, the blog of the Chicago Sun-Times religion columnist; the title is from the Psalms.

Ever since, I have been thinking about meeting Jesus at a party. I want to be in my power chair.

I used my manual wheelchair when I went to that birthday party a few weeks ago. It is harder to run over people in the manual. I would hit a foot and role backward.

The power chair is more like the irresistible force. It hits things and bounces up and over them. A friend stopped by work a few months ago, and in my rush to give her a hug, I ran over her foot. Fortunately, she was wearing some hulking Doc Martens things, so the chair probably took more damage.

Mom insists that God is answering my prayers to be healed, just not in the way I want them to be answered. (I am not oblivious either to the fact that Mom helps me take off my shoes almost every night, probably an answer to my prayers. I just realized, what if Mom is saying God can't fix me, so I really appreciate what she does? She is devious like that.)

I figure at the party, I can accidentally roll over Jesus' foot, and unlike my friend, we will probably be wearing sandals or nothing on his feet. I don't want to cripple him, just remind him of problems that need fixing.

"Oh, I'm sorry, buddy," I'd loudly say. "It's just so hard to navigate in a wheelchair. I sure wish someone would heal me so I didn't need one. You know, like someone who alleges to be a parent but has a far way to go before actually being one. It's pretty hard to enjoy all the good things on earth when your body is so damaged you can't even ride your trike around the block."

Maybe he'd get the hint -- or is it too obtuse -- or maybe he'd tell me to just watch where I am  going and enjoy the party.

Thursday, September 24, 2009

Dieting the FA way

The last two nights, I have not eaten all my dinner.

I am not sick and I was plenty hungry when I sat down on the couch to eat.

But both nights, I started coughing uncontrollably. Not choking. I could breath, but last night a piece of carrot lodged under my tongue and tonight a piece of turkey burger tickled my palette constantly.

My plate or bowl was on my lap, so I suspect anyone knows what happened next.

And now you know not only how I stay thin but why Mom has to sweep constantly in the family room.

Sunday, September 20, 2009

Go, go Claren legs

I have been missing the one form of athletic competition I ever had, horseback riding competitions. I don't miss the practices, but the competition riding when it was just me and the horse. And that is the riding I can't do anymore.

Perhaps what I miss is the thrill of competition, so swimming could maybe fill that void. Of course, I was just too tired to go today, so don't  count on me taking the swimming world by storm.

I could always race my nephew. He is faster than i am, but it would be really easy to "accidentally" run him off the race track.

Mom and I decided that it didn't help my competition disappointments to see the ribbons I had won riding when I went to bed every night, so she took them off the wall by my bed. I'll find a place for them in the new house, but I just can't have them in so obvious a spot as the foot of my bed.

In their place, she hung the original, non-computerized version of the drawing at the upper left, me wheeling on the bitter tightrope.

I love that drawing. Even though I use a power chair most of the time these days, I still think it is perfect.

But, I just realized Claren isn't in it.

I thought at first she could sit on my back and hold either an umbrella or a long stick that tightrope walkers use because she keeps my ventures into the dark side to a minimum. But then I thought: Claren doesn't ride on my back.

She could drag a net under me to catch me since she helps me bounce back from my bad bitterness, but come on she is just one dog. I doubt she is strong enough to pull a big net and line it up properly.

Finally, it hit me: Tomorrow at the vet's I will ask about getting Claren some legs like Dyno-mutt or Inspector Gadget. With mechanical legs that extend she can walk next to me on the balance beam and keep me safe.

She and I can also fight crime, which should keep me from missing competition.

Tuesday, September 15, 2009

Feel like I'm fixing to die

Everyone is worried about the flu these days, and they are saying to wash your hands often and for a long time. I have heard that you should sing happy birthday or the alphabet song while washing to make sure you are getting rid of all the evil germs.

Who wants to sing those little ditties, though?

I am singing the refrain from Country Joe & The Fish's classic “I-Feel-Like-I'm-Fixin'-To-Die Rag.
And it's one, two, three,
What are we fighting for?

Don't ask me, I don't give a damn,
Next stop is Vietnam;

And it's five, six, seven,
Open up the pearly gates,
Well there ain't no time to wonder why
Whoopee! we're all gonna die.
At least that is the song for today. It may change tomorrow.

Claren had more stomach issues this morning, dropping a load of yucky on the family room floor. It seems to have been a one-time thing, and she is OK now.

In addition to working without her, which makes me feel crummy, I am wondering why she keeps having these issues. I blame the food and am going to change it as soon as I can. Actually, I blame the holistic vet who told me to put her on a beef food. I don't think it is right for her.

And I also think about the R-word for Claren. Is she tired of working? Would she be happier if she retired? I don't really think so, but I can't shake the thoughts.

I blame Claren's absence for the following event. If she had had my back, I would have said something. Yeah, right.

I go to the bathroom; five stalls empty; wheelchair one taken. This actually happened twice today, which kind of boggles my mind, but anyway. The person in the stall the first time is standing and appears, through the cracks in the stall doorway, to be a member of the maintenance staff. I wait a little, and he comes out and nods at me. I go in: There is a paper toilet seat cover still on the seat. It has been touched by a liquid at one place so it has a nice papier mache look. The toilet appeared clogged.

I backed out and left, while he sang the alphabet song at the faucets.

This is what kills me: If I called maintenance to come clean the toilet, this turkey might get the call. So why, in the name of all that is holy, did this a-hole treat the wheelchair stall like his garbage can? And a bigger question: Why didn't I say anything?

It's enough to make me wash my hands to the chant Country Joe led at Woodstock.

Monday, September 14, 2009

Matt the Jock

I got back to swimming on Sunday, which was awesome. It prevented me from watching Daniel Snyder's catastrophe, but even better I actually did some solo swimming.

Mike the volunteer was right there to grab my head but I floated on my own and then the teacher had me do a little motion with my arms to propel me. Not much, and I didn't go far, but it was pretty cool.

I suspect that whenever I start swimming on my own, I will find it much easy. I am too self-conscious, and having three people intently watch me makes me laugh, which of course kills the floating.

I also held my breath under water for five whole seconds. And only once, in the four times I went under water, did I inhale through my nose. I actually managed to exhale most of the water back out so I did not die. Nowhere close.

I also need to get some goggles.

I told the teacher that I use my eyes to do almost everything, and I do. But she has me wear them when I duck underwater. I think it does help me to keep looking, but I think goggles would work better. They would also prevent the problem of me splashing myself in the eyes and losing my floating balance, another plus.

I was telling this guy at work that I was swimming now, not riding horses. He said I was becoming a jock, so maybe I will be the one to rescue the Redskins. I know instead of an armchair quarterback, I'll be a wheelchair one.

Sunday, September 13, 2009

Social butterfly

It remains unclear whether I was the only one over 30 at a party I went to Saturday, but I am sure I am the only one who brought Mom's Congo cookies.
And of course I don't mean cookies made with Mom's recipe. I mean Congo cookies Mom actually baked for me. Well, she  and my nephew, who I am sure did all the hard parts like licking the beaters and taste testing.
I got to be a social butterfly Saturday, going to lunch with one friend and then to another's birthday party.
Both were fun. There were a few glitches with the party, but mostly amusing in retrospect, especially since my arms did not fall off.
I called from the main door into the complex and was sure she said she was in building 2023, which was way down a gently sloping hill. I was in my manual chair, so while the party girl offered to come looking for me, I went looking for her building. 
I admit that I got a little drunk on cascading down the parking lot, not realizing until I was almost at the end that she must have been in the main building where I was. The birthday girl and I talked again, she confirming that I now had to wheel back up that slope, which now looked about as gentle as Everest. 
Somehow I made it back up, even over the speed bumps, which weren't even noticeable as I went downhill. I turned onto the road the main building was on, and I saw two people. I had my hopes they were friends, but one had a really weird bun on the top of its head.
Thankfully, it was no mirage. The birthday girl, wearing a party hat with streamers, and another friend were at the main door so they came and helped me the rest of the way.
Apartments also do not have bathrooms wide enough for wheelchairs, but our wily birthday girl took me down to the public bathrooms by their gym. Very wide and wheelchair-friendly.
I also found out that Schoolhouse Rocks lies: Three isn't the magic number, it's 10. 
When we left for the bathroom, there were less than 10 people and I could follow conversations. When we got back, some other folks had arrived and I was lost. I felt like Matt Murdock when he can't control his super-hearing. Not that my hearing is at all super, but it was just too much. I could not hear anything. People kept coming over and chatting, though, so it was OK. Claren made it easier, too. As always she was a hit.
It was cool. In the end I guess it doesn't matter that someone asked about my Green Lantern shirt, and then asked if Green Lantern is a band or what. Or if I was the only one over 30.

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