Thursday, July 30, 2009

Who cares about that nerd, let's hear more about Mom

We have a saying in the newspaper industry, and even though some people might consider me a Web monkey not a newspaper person, I beg to differ. I have run pieces of paper through a hot-wax machine.

The saying is that if you get one complaint or comment or congratulations, then there are a bunch more who feel the same way and are too busy or lazy to contact the newspaper.

I trust it is similar with blogs so when it came to my attention that one reader thought Mom was the real star of the blog, I figured I would feed the beast.

This is my favorite Mom story that doesn't involve me.

Mom is a lot older than one of her brothers, and when he got in big trouble at high school, the school called Mom because they could not get Gram. Gram and Granddaddy were at the store.

She got there and saw my uncle outside the office.

Two things: Mom was real conservative back then -- she voted for Nixon over Kennedy -- and my uncle was guilty of something Mom probably detested.

But she just looked at my uncle and he looked so lost, so alone that she went over and hugged him.

It makes me tear up just thinking about it.

But there's more.

I was just confirming the story with Mom and she said, You know about the car thing, right?

Mom was home with kids and no car. Her folks were at the store in their car. She called my other gram, who worked at the local rectory, to ask if she could come over and watch the kids. Mom was going to call a woman who babysat for us and cleaned our house to try to borrow her car.

But then a car pulled up and my other gram got out. The priest who was driving also got out and gave Mom the keys. She said he told her: not to let them get to you.

Tuesday, July 28, 2009

A little lie wouldn't kill me, would it?

The past week I have been asked several times if I live alone. Neither one was in an obnoxious way or an invasion of privacy, but I miss not being able to say: Yes, yes, I do live alone.

I could lie, of course, but never would. I can't lie to anyone.

I was accosted once in an airport in Greensboro, N.C., by a very drunk woman. I was living alone and had just begun to use a wheelchair for distances and my flight was delayed.

She tried to show she was down with the disabled by telling me she knew "Christopher Reeves." I imagined that a friend would know his name was "Reeve" but whatever.

She asked me to write down my disability. I did, and it was one of the only times my poor handwriting came in handy. She thought I was screwing with her, but I was able to say, rather indignantly, No, I wrote FA; that is my disability.

She also told me I would be cured and got pissed at me when I turned my face so she couldn't kiss me on the lips. I told her that even my mom had to just kiss me on the cheek, and she pointed out that she was not my mother. All together now: EEEEEEWWWWWWWWW.

I would like to think that I allowed this to happen because I was young and insecure. Nowadays, I tell myself, I'd grab the first airport guard and demand she get sent to Gitmo. That, of course, is a lie. Now, I am just old and insecure.

I would like to live alone again, but soon I will move in with my little sister and her family. The good part: My sister will probably take me to airports and she would totally kick that woman's ass.

Monday, July 27, 2009

Where is Elektra when I need her?

I went to the eye doctor today, who was horrified that I had let five years go between my last appointment. I never understood why people without glasses an never go to the eye doctor, but once you get glasses you are supposed to go annually.

It was a totally worthless appointment. I can't say it was the biggest waste of an hour ever because I do watch the movie Elektra whenever I come across it. But this was a close second, and no Jennifer Garner in tight-fitting superhero garb to give it the appearance of value.

It turns out my prescription had not changed at all, and my eyes look fine. It would have shocked me to hear different, even though my eyes are actually pretty crappy when you get down and look -- and by that I mean when you have a top neuro-ophthalmologist examine them.

Yes, I am a doctor snob.

The worst part is the store next to the optometrist had no glasses that are better-lasting than my current frames, which seem to require an adjustment a week.

Actually, that wasn't the worst part. Even worse was that the guy there adjusted my glasses in a way they should have been adjusted years ago when I first got them. They felt like they fit for the first time.

So I didn't get new lens to help me see better or new frames to keep my glasses from falling down or sunglasses to keep me from squinting a lot.

Trying to maneuver around the optometrist, I did get my latest lesson in how inconvenient wheelchairs are, especially if you have a second disability.

Again, I am left with the conclusion that society is almost prepared if you have one disability -- bad eyes, mobility issues, poor hearing. Add them together, though, and society is brought to a standstill. You have to transfer out of your chair to see the eye doctor, you have to squeeze your chair into tight quarters to have your eyes tested.

Elektra wouldn't take that shit.

Sunday, July 26, 2009

A swimming sensation

I did not swim a quarter-mile like my teacher said she was going to make me. I did walk two lengths of the pool, though.

I also started getting the arm and leg work synchronized, which I was more pschyed about really.

For the walking, two guys held my arms and I just moved my legs as best as I was able. Pretty neat and very tiring.

Thw swimming was less tiring but awesome. I was getting some real propulsion when I was able to work arms and legs together. It sounds wimpy that I can't do it, like I can't walk and chew gum at the same time. But then I realized I CAN'T walk and chew gum at the same time or totally separate so maybe it is not iwmpy.

I told the teacher that my goal is to be able to do swimming alone. She said she is worried about my swallowing but agreed to work toward that.

Sweet dreams aren't made of doggie diarrhea

On Friday night, I dreamed I was Duke basketball coach Mike Krzyzewski and I seemed to be stocking shelves in a drugstore. This did not strike me as weird.

I was also saying goodbye to Makhtar Ndiaye, a former University of North Carolina basketball player. He was telling me of his plan to transfer to a military academy to finish school. Again, it did not strike me as odd that a player for the arch-rival Tar Heels was telling me, the Duke coach, he was transferring.

I then noticed something that did seem out of place -- a smell.

I woke up and realized Claren had had diarrhea. Not that I could see it but I knew it was there.

I called Mom on the phone and she came down and found the main one. I then found several smaller ones.

After Mom cleaned it up, I gave Claren a pill to settle her stomach and sat with Claren in the family room where she quickly had more issues passing the pill and more stuff for good measure.

Once again Mom cleaned it up and I sat back on the couch and dozed till 9 Saturday morning. About 10, Claren had another bout, this time with blood.

The wonderful people at VCA Herndon-Reston Animal Hospital scheduled us for an appointment at 2 on Saturday, the time they close, according to the website. We were there a good two hours as they did some X-rays and other stuff to try to find the source of the bleeding. In the end, there seemed to be nothing real bad, so we went home with orders for no food till today.

Oh and as soon as they brought Claren into the waiting room she had massive diarrhea on the floor there.

When we were leaving I apologized to one of the staff members for making them so late.

She brushed it off and said, We just want Claren to feel better.

Could you ask for a better vet?

Claren is better. I am still sleeping in the family room but we have been D-free for a little more than 24 hours. And she is so much more active.

I am going to the vet tomorrow for a quick recheck, but I am not too worried about having my dreams interrupted again.

Friday, July 24, 2009

Trott, Matt Trott

As I sat alone in the vet's waiting room today, the central air clicked on.

If I were James Bond, I thought, steel shutters would shoot down over the doors , creating an airtight seal. I would see a gas cloud pouring in through the air vent, would start feeling woozy and pass out.

None of that happened. I am not James Bond. James Bond does not awake from a nap on his parents' porch with a need to get to the bathroom, knock off his glasses and slide off the glider while stretching, get help into his chair and make it all the way to the bathroom but have issues there.

Also, I don't know any women named Pussy.

But, I then thought, life would be much more exciting with an arch-nemesis. And it conveniently turns out that I have one. No, I don't mean my little niece, although she is totally stealing all the attention with her tonsillectomy. (She also hasn't pooped in a week because of it so I am not so jealous.)

I am talking about Friedreich's ataxia, and heck, if we can anthropomorphize God, I can do it with a disease.

The problem is I need a good, villainous name.

I first considered “L'ataxie de Friedreich” from the French or the Italian “Atassia di Friedreich” I wasn't in love with either as an acronym LADF or ADF. I went all through the languages in Google's translation tools and found nothing with the bite of Bond's SPECTRE – the Special Executive for Counter-intelligence, Terrorism, Revenge and Extortion -- although I do dig the Turkish translation for its hard consonants: “Friedreich's kasların koordinasyon bozukluğu,” the FKKB.

I could also consider FFA for fucking Friedreich's ataxia or make Dr. Nikolaus Friedreich the bad guy in a blame-the-messenger deal.

If I could consider my FA my arch-nemesis, then when a few minutes ago my legs gave out on me in front of the toilet and my forehead slammed into the raised toilet seat, I could shake my fist at the villainous wretch XXX. Instead, I had to reassure my little sister and Mom I was OK and then want to cry, scream and hit something real hard.

Wednesday, July 22, 2009

What if ...

I got a bulk e-mail the other day from the DJO Class of 1989 rep telling me enthusiastically that my 20th reunion is coming up and that I should come.

That is how I knew it was a bulk e-mail. I knew who the rep was, but I am sure she doesn't know me. We never said a word to each other.

I am sure no one in my class realizes I would pretty much rather die than go to a reunion or relive the torture that was my high school years.

It wasn't just that I wasn't invited to parties. I didn't even know about the parties.

A friend of mine told me that even popular kids look back on high school with horror. I humored her by agreeing with her, but I hope few people experienced what I did. I wasn't bullied; I was just invisible, and I can think of no time with more regrets about my life.

I thought I liked What if ... comics because they often had kooky premises ... What if Iron Man was trapped in the time of King Arthur? But maybe I was thinking about all the What ifs that still haunt me 20 years later.

Probably somewhere among all my papers is a compatibility list that the Key Club or some group sold. I was thrilled that the girl of my dreams was ranked first. As I recall, it was a low score, like 50%, but who cares? Of course that just became another What if.

And of course, the biggest one: What if I had known that I was disabled, not just a scrawny, uncoordinated child?

I act like that would have imbued me with self-confidence. Not that it has yet.

I doubt it would have changed a thing really. But I look back on high school with such regret that I grasp at anything to excuse my unhappiness.

Sunday, July 19, 2009

I am not a slob

As I was getting ready to go the White House today, Mom said, I need a little bit of your brother to rub off. This was further proof that my brother and I, while having a ton in common – including Friedreich's ataxia – have very different approaches to life.

We both know, for example, that the bats above Bolg's army are “like a sea of locusts.” We know that Cutter's soul name was Tam. And that “showoffs always get hurt.” (No link for this one. It was just something a friend shouted to his brother who was showing off his skateboarding skills in the St. James parking lot. He turned back to answer his brother and slammed into a fence.)

What Mom was wishing was that I had just a little of my brother's sartorial splendor.

The invite to the private tour of the White House said no shorts or jeans. That takes away about 100% of my weekend wardrobe during the summer, but I figured to wear some dockers and a golf shirt. See, the key word for my wardrobe is easy.

I wear a coat and tie to weddings and funerals. The only buttons I allow on shirts are ones I don't have to do, so polo and golf shirts remain open. I wear a lot of T-shirts. I feel I am being pretty stylish when a friend tells me I look like Michelle Obama because my T-shirt is earth-tone argyle. Not that I want to be First Lady, but if I did ...

My brother, though, yikes; his dress routine wears me out. He wears contacts. Glasses suck, but they are a small price to pay for not having to touch your eye. Next he puts on a button-down shirt, then a tie, and that's just for lounging around at home on Saturdays.

OK, I am kidding. That is his work outfit, but when he is home he still wears more elegant clothes than I would even consider. I still haven't bought him a T-shirt from the Bruce Springsteen concert even though he and his wife gave me tickets because I am just not convinced he'd wear it. I gave him a T-shirt a few Christmases ago that said “Monkey Crossing,” which is awesome, trust me, but I have never seen him wear it.

I am not a slob, but it is a pain to get dressed up, letting others button your shirt.

I did just that today to go on the tour of the White House from a friend who works there. What I liked most was all the paintings. I'd never get any work done because I'd want to sit and stare at Washington crossing the Delaware or the other art that line the walls. It felt like a library, and I wanted to whisper. I was disappointed only that Claren and Bo the First Dog did not meet.

I considered letting Claren pee on one of the little gardens out front that have bushes, just so we could leave our presence at the White House. But then I remembered what some old-timer (Bear Bryant, I think, but I see it attributed to Jim Brown, Walter Payton and others) said about scoring touchdowns: Act like you've been there and will get back. Plus, they'll be pulling Claren hair out of their rugs for decades at least.

Saturday, July 18, 2009

Is distinctive good?

A friend at work who sits in a high-traffic area was telling me she is starting to recognize the gaits of her co-workers. The person who works next to her, for instance, or the friend down the hall.

I figure I am easy to hear coming: whether it is the electric hum of my power chair, the rattle of my manual chair, Claren's tags or her feet hitting the tiled floor. Claren's feet are how she knows it's me, she said.

But another person chimed in that they know it is me by my laugh, which she said was very distinctive.

That's pretty awesome. Maybe I am more than my wheelchair and disability.

Wednesday, July 15, 2009

I could be God

I worked with an atheist at my first job. Not just an atheist. I liked to call him an attack atheist. He's probably still at it, until the world realizes Ayn Rand is the true god anyway

There was the profanity with which he greeted the Christians prostiletyzing in his apartment complex. at least that is what he told us. The Christian said, God bless you. His reply ended with a you, too.

It boggled my mind that one could be so intolerant of others' beliefs, especially people he hardly knew.

I roomed with a Jewish guy one year in college and was horrified that I wished his mom a "Merry Christmas." She just said, thanks. I guess if she had been brought up like my atheist she would have ripped me a new one.

But it wasn't just strangers. He mocked his co-workers for blindly following rules. I could never convince him that I didn't kill people because I did not think it was a good idea, not because it was a commandment.

I could also never convince him that if I was going to lie to myself to feel better, I would tell myself Buffy the Vampire Slayer is real and lusts for me. I would not make up an omnipotent, loving being who won't heal you, won't even, on many days, seem to hear you.

If I were God, people who need me most would not find me so inaccessible. People who are ill or injured or sad or all three should be the ones who get a little nudge from God to say, I got your back. Instead, these are the people who keep falling or getting sadder often with no one to lift there soul out of the black.

I am lucky; I have many people to keep me out of the black, who will believe in God's love for me.

I am putting God on notice here and now: Shape up, bub, or there might be someone else gunning for deification.

Sunday, July 12, 2009

New swimming challenge

I have reconsidered my challenge to Michael Phelps. Now, after my second lesson, I am just thinking maybe I can beat Kelly.

Kelly and I went to kindergarten and high school together. She was kind to me in high school even though she was a thousand times cooler than I.

For one thing, she was a swimmer. Athletes were everything at my school, as they are at most. As I recall, her upper arms were the size of my thighs.

Now, I am counting on her being out of shape and sluggish, so that my time in the back stroke will beat her. Also, I hope she will have really poor sight and won't notice the guy holding my head above water.

The teacher is well-aware of my choking habits and doesn't want my face going under water. For now anyway.

But I "swam" -- I use quotes because of my head holder -- 6.5 laps today, with some exercises in between. That is about 275 yards for those counting at home.

The hardest exercise was actually just trying to put my feet down on the floor of the pool and standing.I think it was because the water was high enough that my body wanted to float.

I just realized this was the year of my 20th high school reunion. Maybe at 25, I can slap Kelly with a glove.

Saturday, July 11, 2009

God does answer prayers*

*It turns out the son of a ... just has a really f----d up sense of humor.

My little sister was having some friends over tonight and asked me to join them.

I didn't really feel like it, but I did not have a good excuse. I had slept until 11, taken a long nap, and the most work I had done was watching Mom give Claren a bath.

I came back from my walk with Claren and Mom thinking I'd just pop into the bathroom and head over to my sister's -- I mean it was outside so there would be no wheelchair problems and there were s'mores involved.

Out of regard for the easily grossed-out, I wont detail what took place in the bathroom, only that afterward Dad had to tighten the toilet seat, Mom had to clean a little, and I had to shower.

Needless to say, I did not go over to my sister's.

Tuesday, July 7, 2009

The Little Engine That Could didn't have FA

Sometimes, I think I could run if I could just remember how.

Not necessarily walking, it is definitely running that I think of as a memory lapse.

It just seems so simple. Everyone does it. If only my stupid brain would remember how to do it.

I know it doesn't work like that. I am not going to run, walk or whatever just because “I think I can.”

When I had just given up driving and after I had failed miserably in my attempts to use hand controls, I told a woman at work of my predicament. Oh, I am sure you will get the hang of hand controls if you keep trying, she said kindly but totally missing the idea of FA.

It often seems that I get nothing out of trying so hard. Except being tired, that is.

The spirit is willing but the flesh is weak, and for that, I blame God.

I dreamed a few nights ago of God, played by Wilford Brimley, saying to me, We'll do this together. I woke right up and my first thought was: Wilford Brimley? Really? But it was a dream; I didn't really pick him.

I felt pretty good about this dream, too, until I woke up and kept right on falling and wobbling like I did before.

Sunday, July 5, 2009

Beating you with a wheelchair tied behind my back

I told a former co-worker once that I was surprised how much I enjoyed competing in horse shows because I did not consider myself competitive at all. But that's not quite true.

I am competitive when people talk about their issues, and I think to myself: “You think those are issues? Those kinds of things don't even keep me up at night!”

The Washington Post Magazine's XX Files weekly column is easy to find – right next to the crossword so Dad has almost always creased own up work the puzzle – and I read it religiously, even though it has nothing to do with that awesome TV show its name plays off.

Actually the XX doesn't refer to an FBI case but chromosomes. I am actually not sure if I lose guy points for reading it, but I am confident in my manhood. And sometimes you read really strong stories, like one about a dog and a somewhat crazy man who while petting the usually scared dog told its owner: “Animals like me because they know why I'm sad."

But you also have to read ones like today's column in which a 28-year-old feels she is being left behind because her two siblings have gotten married and have one child each.

Oh please; 28 practically is a child! (The following may not be so much the good kind of bitter as pathetic rant – does it make it better that I know this -- and I am sure the 28-year-old is a wonderful person.)

Try being on the edge of your 38th birthday and the only single one among six siblings in a family where family life is of high importance. Try having no expectation of your marital status changing in one year or 10.

Try being one of two siblings (my brother who also has Friedreich's ataxia is the other) without children. The one brother who has kids has one daughter. Dad is an only child, so goodbye family name.

And I am not even directly playing the wheelchair card.

Saturday, July 4, 2009

Give me raspberries or give me death!

I know that following the “ataxia diet” recommended by the Ataxia Center at UCLA will not cure Friedreich's ataxia. I am not sure whether it will kill me.

I kid, of course, but the diet cuts out cakes, muffins, donuts, pies, even unsweetened fruit juice, and brown sugar. What is oatmeal without brown sugar? White goo.

I am not even sure what “unsweetened fruit” is. Isn't fruit naturally sweet? I guess lemons and limes, but who eats them?

The thing here is that I can't walk. I have no girlfriend and that is low on the list of likelihoods. I fight depression regularly. I fall.

I don't want to take things that make like worth living like watermelon and peaches and mangoes and brown sugar. Raspberries!

Life sucks; it shouldn't taste bad, too.

Wednesday, July 1, 2009

That fall? I own it

I read a story the other day about how Michael Jackson patented one of his signature moves: leaning far forward without falling.

Granted, he actually patented “a shoe 'system'” to enable dancers, or anyone really, to perform the signature move, but I have plenty of signature moves; I should be churning out patents

There is the show-stopping fall when transferring to or from the wheelchair. Who would not want to perform that one? My shoe system would be simple: Wear roller skates but do not skate. Walk.

And who would not want to do spit-takes with regularity? For that system, I will need only pretzels, but as an added bonus I will toss in tips to make coughing while drinking a snap. Talk while taking a sip. Lean your head back. I will not rest till all my patent users are choking regularly.

My various bathroom escapades alone would keep a patent attorney busy for decades.

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