Tuesday, June 26, 2007

I'm itching, and I'm too polite to scratch

If I wore a diaper, I'd have diaper rash. Were I a jock, I'd call it jock itch. But I don't wear a diaper and despite my equestrian adventures, I don't think I am a jock. That means I get to name my disease: wheelchair leprosy.

I know it is not unique to wheelchair users to find heat, itchy skin, tight quarters and sweat uncomfortable. Legend has it that one of my brothers-in-law walked into his home, shouted "I hate underwear" and started clawing off his clothing.

But for fellas in wheelchairs, pulling off clothes is not so easy. Neither is putting on powder. You can't stand but are trying to shake powder on to a part parallel to the ground. And you're sitting in a wheelchair all day. talk about tight quarters.

And I don't mean to exclude the gals, but from what I hear they are missing two appendages that add to the discomfort.

I am thinking about not using my seatbelt for a while because it may make things hotter and more squeezed.

Then of course I could fall. But if I wound up in a hospital with broken body parts, I would wear a loose-fitting gown, not clothes.

Everyone who is depressed totally needs little kids around. It is awful hard to be sad when people are feeding you Goldfish crackers and chanting your name. Even if they are 2-year-old nephew and 4-year-old niece.

Monday, June 25, 2007

Here are my medical records. Happy?

I met a woman tonight when I was out walking Claren. This woman, I'll call her Cheryl because that's her name, had a dog, too, and we let our pups meet and made some small talk.

We moved mighty quickly into big talk.

"So why are you in a wheelchair," she asked. Not content to just make me feel awkward, she also asked, "When was the last time you walked?" Because it is neat to make strangers relive the pain of their lives.

She wanted to know more stuff, too, and I told her whatever she asked.

Part of me, a very large part, wants to say, "Ummm, I’ll tell you if you tell me your most private, painful secret."

I accept that I have no medical privacy in doctors' offices. It is not a doctor’s appointment, unless med students come by to watch "the amazing ataxian. He doesn’t walk, doesn’t talk (clearly)."

I really just want to say, "None of your business" to Cheryl and her kind of people.

But then I think about how disabled I am and how badly I want to be cured and how that needs money, maybe from some random person who just donates to a cause because it’s a disease some polite, plucky little guy she talked to has.

Also, that might qualify as mean bitter.

See, I have no choice.

Sunday, June 24, 2007

Where's my spandex, cape and utility belt?

My favorite superhero is Daredevil. When he was a boy, he pushed an old man out of the way of a speeding truck, which was carrying chemicals. The truck hit young Matt Murdock, and the chemicals blinded him but his other senses were heightened. He can tell if someone is lying by the person's heartbeat or smell. He sees with radar, and of course he has great balance.

I am afraid that in reality a disability has no silver linings.

Sure I get a nice parking spot. But you know what I do? I compare myself to others who take the disabled parking spot near my condo. It would be nice for me to park in because I can just roll easily downhill to my condo. Otherwise I have to wheel uphill to get home.

But I rarely get it. I have never seen this one family because they park their van there and leave it unmoved all week. They drive it on Saturdays. But mom has said there is no one with a visible disability. The other person who parks there seems to mainly be overweight. It lengthens her walk to park in the disabled spot but allows her to open her doors as wide as she wants because the spot has open areas on each side.

I am the only one in a chair, so I figure that spot should be mine. If you just use it to keep a car around for a once-a-week drive, that shouldn't qualify. And if I knock the Twinkees out of my diet, I'll still be in a chair.

See, I am a jerk about it, so I'm not sure the parking spot qualifies as a benefit.

A lot of the "benefits" are in the kind of person I am. Obviously my disability has played a role in that development.

I consider myself stronger than most people. My brother-in-law found himself with cancer about few years ago. He went through radiation and chemo and surgery and all the awful things that accompany them.

I wished I had his cancer instead of him. Not just because I think cancer would be easier to deal with than FA. (Sorta, sometimes.) Or because I think I am less valuable than him (I do think this mostly because he has as family, and I figured I am already fucked with FA, why not add a little cancer?) Mainly, though, I just know I could handle it — awful as cancer is.

I read an article in The Washington Post a while back about an injured player on the Redskins. “Asked if the injury was better yesterday, [lineman Joe Salave'a] smiled and said, "My 'better' might be a little different than yourself. . . .’”

So is mine.

Every day part of me hurts. A toe, a finger, a shoulder, my back, my head, and that's just the physical pains. None of us have time for me to list my emotional problems. Every day, though, I go to work. It will get better after I move about, I tell myself. Or it is just something FA –related, so there really is no reason to call in sick.

One of my sisters wrote an essay about how I was an opportunity for grace for others, how letting people help you is not easy but it offers so much to others.

She is so right.

I think I force people to think beyond themselves. A little girl not even as tall as my chair offered to help push me through the grass; this same little girl acted like a little brat minutes later to someone else.

This morning, Claren pooped in a little ditch off the sidewalk, so I picked it up but was having real difficulty getting back on the sidewalk. This guy came over, helped me to the sidewalk and continued his morning walk.

I think the presence of someone who relies on humaneness to make it through the day makes people stop and think and hopefully be kind.

Being uncomfortable for much of my day has also made me empathetic. I am still not sure if that is good or bad. Sometimes I feel broken by someone else’s sadness or pain. Or I feel helpless and frustrated because I can’t do a thing. The worst part of it is that the very thing that makes me empathetic — the disability — is what makes me unable to help. I can do very little phyhsically for someone; I think that frurstrates me more.

And of course, there is my eye level, which leaves me staring at gals' chests. Good or bad?

I am proud of all these things, except the gals' chests thing. But I'd give all my comics, baseball cards and action figures to try to become the same kind of good person, but one who could walk.

Friday, June 22, 2007

No, I did not have a nice trip this fall

I thought that I had fallen in pretty much every conceivable way: leaning forward, leaning sideways, tipping over backward coming out of a subway car, being pulled over by a dog playing tug-of-war and countless other ways. Because of these experiences, I usually have an inkling I might fall. The incident this morning, however, took me by surprise.

I had gotten up about 4 a.m. to go to the bathroom, and because my eyes were used to the dark, I left the lights off. That was fine and I got beck to the bed afterward fine. I stood up out of my chair and out my hand on the bed to transfer into it. But in the dark I didn't know I was too far away from the bed so my hand rested on air and then I fell.

Well, first I slammed down chest-first on to the power chair joystick, then I fell to the ground. The joystick is actually just a little metal rod because the cover falls off so that kind of hurt, and it raised the question: What the heck is up with my guardian angel?

I decided it might be a fat couch potato named Doug, who watches my life unfold on a giant flat-screen TV. He enjoys the Three Stooges aspect of my daily falls, so he only lends a hand to keep me alive. Because if I died, he'd lose his entertainment. Of course he is slow getting off the couch, too, so a lot of my pratfalls happen before he can stop them.

It might also be a scrawny little runt of a guardian angel named Inga after Terri Garr's character in "Young Frankenstein." Not the sharpest tool in the shed, either. But she tries.

In the "put the candle back" scene in "Young Frankenstein, Frederick asks Inga to push as hard as she can on the other side of the bookcase. Inga, the character not the angel, backs up, gets up a full head of steam and runs at the bookcase. She succeeds in moving it.

This is, I imagine what happened this morning. Not strong enough to prevent the fall, Inga, the angel not the character, ran at me full force and knocked me so that the metal rod just raked across my chest instead of puncturing it.

Not too reassuring, huh?

I told my mom about the fall and I laughed at how horrified she looked "It isn't funny," she said. I pointed out that if it wasn't funny, I might cry until my tear ducts run dry (actually, I said I might kill myself, but now I am going with the tear thing).

Wednesday, June 20, 2007

You are freakin' kidding me

I thought I had heard it all from my para-transit provider. Lovers, pee-ers, late trips, "we didn't have a van" excuses. But this was a new one: a high point in freakin' stupidity.

My ride did not show up this morning. Not a shock, unfortunately. I called to get an ETA. First, I was put on hold for eight minutes. Then I called back and could not understand what the dispatcher said, so I asked my mom to call. She called me back and was on her way out to get me.

Apparently, the para-transit geniuses (PTG) sub-contracted my ride to a local cab company. The cab company, however, couldn't drive me for some reason. They sent my ride back to the PTG. But, and this is the key part, the PTG's printer or fax was out of toner, so they never got my ride.


It's good to know how important I am to the PTG.

Oh, and I think someone got fired today because of something I did. Her fault, though.

Monday, June 18, 2007

Some like it hot, and some are just lazy

On my ride home from work, the car thermometer said 98 degrees. It was pretty warm.

I came home and put on a T-shirt. I considered putting on shorts, especially because you get a little sweaty down there sitting all the time, but it is so much trouble.

I have to take off my shoes. That's easy; they're slip-ons. My socks are killer to take off. Claren can help but it still not easy. But I may use a wheelchair and be a bit of a dork, but no way am I wearing dress shoes and shorts. My pants aren't bad, either. Then I have to put on the shorts, new shoes, maybe socks. It takes like 15 minutes and wears me out.

I don't turn on the air conditioning because I am not a central air fan, too enclosed, but also because natural gas costs about a million bucks.

So I melt. Maybe this is how I keep my boyish figure.

Wednesday, June 13, 2007

Too many rivers to cross

In a classic Calvin and Hobbes strip (I know, they're all classic), Calvin breaks a dish and his mom says "Your problem is you've got no common sense."

Calvin tells her he has plenty of common sense; he just chooses to ignore it.

Perhaps I ignore my common sense, too. What better way to explain why, when I was falling into my dresser this morning, I consciously stuck my face out front.

Really, like a horse stretching for the checkered flag. Only instead of being crowned with a blanket of roses, I smacked smacked the dresser.

Nothing like cleaning your sinsuses with a quick bash to the nose, cheek and upper lip. And surprisingly little blood. But it still feels wierd, maybe 5 broke my nose again.

Work was blah. Another wheelchair passenger on my ride in this morning wanted to use my company's bathroom. I told him it was not wheelchair accessible because the first-floor ones aren't.

I am not sure, but it looked like he took matters into his own hands out in front of my office. I didn't look. That way I can honestly say I saw nothing, thank you Sgt. Schultz.

I was riding down the elevator later in the day. Claren was in front of me; my back was right at the elevator doors. Next to Claren was a woman, who elbowed past me to get off. I had started off the elevator and had to stop for her. Next time, maybe I won't stop. Or I'll tell her, "Wheelchairs get the right of way, hootchie."

And all day, I was beset by loneliness. I feel a little gullty because I was in a horseback riding show over the weekend and had lots of folks cheering me on. But back at work, I was reminded that none of the people I consider my closest friends at work wished me luck when I told them about the show. Heck, none even responded to the e-mail about the ride.

I have worried for years that I like people more than they like me, that they get bored or creeped out by me. My family doesn't count. I told my mom that this worry remains because only once in a great while does someone do something to challenge it.

More often, it is reinforced by something that happens. Even something that means nothing but takes on great significance when I am sitting here alone again.

Calvin's mom seems to think breakage results from ignoring common sense. Someone else said: "Faith is believing in things when common sense tells you not to."

I will keep chatting with people, hoping they aren't bored or worse. Whether this is faith or asking for more breakage, I just don't know.

Tuesday, June 12, 2007

It's always opposite day here

I had a delicious dessert tonight. I was at my folks, and I had cake, fresh raspberries, sherbet and whip cream. It was good even though my brother-in-law had to pick it up off my lap and put it back in the bowl.

It was not my fault; I just tried to cut a piece of the cake to eat, but it had been in the refrigerator so it didn't cut. It just slid in the bowl and pushed everything out.

Moments like these, which happen far too often, make me want to cry.

Instead, I laugh.

I don't want to make everyone else feel bad, so I laugh at myself, letting them know it is OK to laugh, too. Plus, if I cried at every slip, I would dry out in like two days.

Thursday, June 7, 2007

Public pee-er (not me!)

As you can imagine, I am quite sympathetic to bladder issues, but I am not sure what to do about this.

My driver pees in parking lots.

He does not just whip it out and whiz right on the asphalt. He stands in the driver's side doorway and pulls the open door around him. Then he goes in a cup.

It is pretty subtle. The only reason I realized what he was doing is that he then tosses the contents of the cup out onto the parking lot.

He is a very nice man, a good driver, and I don't want to get him fired. Plus, how do you tell a grown man that one can't urinate in public?

The first time it happened I told my boss I was conflicted. On the one hand I was grossed out, but I was glad he had not stopped at a gas station and make me late.

But today he did it (well ... actually, yeah, he "did it") on my parking lot where I might wheel. Oh man.

Sunday, June 3, 2007

A cavalcade of inaccessibility and a moron trio

My brother-in-law, brother and I went to the movies last night. So did Claren, my service dog.

We got the tickets but when we handed them to the ticket taker, she said the elevator's I out. She was not too helpful, but the manager came out, apologizing and offering to take us on the service elevator.

Soon we were wandering in the bowels of the mall to get to the service elevator. The manager was very nice but not that skilled at opening service elevators. My brother-in-law did that, and we got in and rode to one floor and got out. Turned out to be the wrong floor so we rode to another one, but the manager couldn't find the way into the theater.

Finally, we rode back up and waited while she got the assistant manager who knew where to go. It was on this ride that I noticed the big sign in the elevator: THIS IS NOT A PASSENGER ELEVATOR. Only freight handlers and the elevator operator allowed on this elevator. I guess I am freight.

We went back to one of the earlier floors and the manager went into the theater and opened the necessary "exit-only" doors that got us in. I asked her how we'd get back up, and she asked my walking brother-in-law to come up and get her. She also said she'd give us passes and stuff. My brother-in-law noticed that the "exit-only" doors said "to 4th parking level," and asked the manager if they did do that because we parked on 4. She assured us they did.

The actual theater was dark when we got in, always fun to maneuver a chair in the dark, and some folks were sitting in the wheelchair companion seats. One did move, though, so we got situated and watched Pirates of the Caribbean: At World's End. Definitely better than Spider-Man 3, and there is something about a woman pirate. Or maybe the something is about Kiera Knightly, whether she is a pirate or not.

Of course, this is not the end of the story.

We decided to forgo the free passes and just go straight out the "exit-only" doors to the garage. We did. It took us right to the … third floor.

We rode a working elevator up to the fourth floor and my brother-in-law held the door for me and my brother. My brother made it out, but before I could get out these three people walked straight out the door, too. Two others stopped for me, so I went out, and thankfully my brother-in-law said something to them, like "You just cut off the wheelchair I was holding the door for."

I say thankfully because I don't think they heard my sighing, eye-rolling or grinding of teeth. The girl in the trio did look embarrassed, although she also looked at her companions like she was annoyed at them for getting her into this. Of course, she was in the lead, so I don't know; her companions just looked clueless.

And then we went home. But you can be darn sure that if I had a woman pirate with me, there would have been blood shed.

Friday, June 1, 2007

Give me some sugar, doctor

My dad got some really great medical news today. The treatment really seems to be working well against his prostate cancer. I am always a little conflicted when I hear good medical news. Of course, I am thrilled that dad is doing well. But when, I wonder, will be my good medical news?

Probably about 15 years ago, I saw a neurologist who told me that FA was the hot disease and that there would be a cure in five years. Oops.

My mom remembers this, too. She also remembers doctors telling her parents the same thing in the 1950s when her sister had leukemia. My aunt died, and they still can't cure leukemia even though it apparently was the "hot disease."

This is what passes for good medical news for me: I had my physical this week, and my doctor told me I was in pretty good shape all things considering. Saying someone with a big-ass systemic failure is in good shape, though, seems like when my sister told my parents she liked everything about the hot dog she was eating except the taste. Not minor things, FA and taste.

My doctor also said I might want to try a new antidepressant, because it might give me a little more energy.

I had never heard of Cymbalta so I looked it up. I found a site called crazymeds.org that is just folks collecting experiences about mental health drugs. They had a mixed review of Cymbalta, but then I read about my current drug of choice: Effexor.

They call Effexor one of "two last resorts among the modern meds to cure the deepest, blackest depression ..." I didn't know I was that bad.

They follow that up with this: "Effexor (venlafaxine hydrochloride) is a medication people utterly loathe to have taken. It is not uncommon for someone to fire doctors during or immediately after they quit taking Effexor (venlafaxine hydrochloride)." Neat.

They could at least give me a placebo.

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