What a silly trade

My favorite visual artist I am related to reminded me that Bruce Springsteen, as cool as he is, doesn't really know about life in a wheelchair.

If he did, I am pretty sure he would never say anything about trading "in these wings on some wheels."

I know he was not talking about a wheelchair's wheels, but I can't help thinking of that whenever I hear the beautiful "Thunder Road." And I think how I would trade in my wheels on some wings … in a heartbeat, even though I'd have to get new shirts that accommodated my wings.

How I'd love to fly like that and be unencumbered by this stupid chair and disease. I know that Claren would hate it, though.

My favorite visual artist I am related to reminded me of the "wings to wheels" thing
with a painting she made recently. She drew a guy in a wheelchair and he had wings … but he was still in the chair. (She also drew the guy on the left for my blog.) The wings reminded me of the wings on the angels in "Dogma," which I really like, but I really hope the painting guy doesn't have wings and still have to use the chair.

I would love to have wings, but only if I was cured by getting the wings – the last f----ng thing I need is another body part that doesn't pay attention to what I need.

I say reminded me of this thought because it has been sitting on a sticky note on my MacBook for ages, waiting till I could figure out how to write about it.

I guess I should thank her for letting me take down that one sticky. And Bruce Springsteen remains my favorite artist I am not related to.

This was bad

Here is the letter I sent my para-transit service today.

Hi, I have filed several complaints recently about poor scheduling that left me on your buses but 3 or 4 times longer than my trip takes. Today was the worst bit of scheduling I have seen in years. Even the driver said it was ridiculous.

He picked me up on time and we left for another pickup at 7:10 a.m. We reached the other pickup in about 20 minutes, although it was not closer to my destination. We waited 10 minutes for the other client to board. He was not late, we were early. We then drove 20 minutes to drop him off, again nowhere near the direction I was heading. In fact, when we finally started driving to my destination, we were farther away then when we started. We even passed where I was picked up. This final leg of the trip took 40 minutes. That is 10 to 20 minutes longer than my trip would take if I went straight from pickup to destination. And I had already been on the road or in the van for close to an hour.

I understand that you are a shared ride service. I don't mind picking up other clients, even dropping them off first if their destination is before mine on the way. But to drive me around for an hour, finally starting my trip at a point farther away than where I was picked up? That is simply unacceptable.

We'll see what they say. I didn't even tell them the worst part. The other passenger asked me, "Hey buddy, you got a girlfriend?"

Why is my love life so intriguing to my fellow passengers?

A skeleton says hello

I was on my way outside at lunch today when a skeleton waved to me as I got off the elevator.

She looked familiar, but I don't like to stare at people till my eyes focus, not even skeletons. So I looked away and wheeled closer.

It was a gal I had not seen in ages. I moved off her floor and she was off having kids. She was always slender, but she was beyond slender now. She said she had been pregnant, then sick, then something else.

I told her she looked thin, and she agreed thankfully. She is too cute for heroin chic.

I told her to gain weight and went to pat her arm for some reason. But I couldn't do it. My hand stopped short. I wasn't afraid to touch her, even though I imagine even in her weakened state she could take me.

I just misjudged where her arm was, like I do the doctor's finger when he has me touch my nose then his finger, which he moves to a new spot each time. I know it serves some important purpose, but part of me thinks this one and most neurology tests are just to make me look silly.

I guess it bothered me because I know how good it feels to be touched (which sounds dirty but isn't). I know that with her children around, I am sure she is not going to the barber shop for a human touch (just once, in North Carolina). But still.

This I got to see

I know what movving company I am going to use when I move next.

I saw the ad on a signpost near my home.

"MOVING?" it asks. Underneath is the answer: "2 men-free truck."

First, I thought it would be two women in like jean shorts and sports bras in the men-free truck.

But I had a new hope: Two orangatauns.

It'll be so cool either way. I can't wait to move.

Taking risks

I read the other day that my friend is starting a company. That is great; she ought to be really good at it and I hope she succeeds. I hope her business partner fails miserably. Is that possible?

The partner is a 26-year-old guy, and maybe that is explanation enough. All 26-year-olds are a bit cocky. But as I read about him in my friend's post about the company and in his own blog, my disapproval grew.

He dislikes "safe jobs," you know, those that pay the bills. Like mine? He would rather take risks.

Wonderful, except I decided he is the kind of person who decided to risk it and not get insurance, which is great until he gets sick and can't pay and society directly or indirectly pays the costs. I also decided he is the type who bought houses he could not afford using interest-only mortgages and who society is now bailing out. And he totally is the type who goes hiking unprepared, gets lost and has to get rescuers to save him ... rescuers who are often paid for by society.

I, of course, have no way of knowing if these are true.

I know I am just jealous.

At no point in my life since college have I not thought about ramifications ... in most issues. I know I was not thinking smart in grad school when I took part in a little writing enterprise that imagined mean things happening to classmates.

I am not averse to risk. I am all about risk every darn day.

If I don't think every little thing through, I wind up on my ass. Heck, even if I do think things through, I fall.

I recently told Mom that the reason I tumble when I transfer is that I don't take that much time and plan it out because 90 times out of 100 my strength or athleticism (that's right) or luck will keep me from falling. It is just those 10 times I fall and make a stink about it.

I am about measured risk, I guess. Failure at risks I take would not affect society, except it would have to survive without my pithy commentaries. No, my risks would just hurt me, well, and family and friends.

But I have changed my mind. I don't want him to fail ... because that is too mean and because then he would take a bigger risk to succeed and his failure, while spectacular, would just drain society more.

And if someone will take me bungee-jumping, holler. I really want to do that kind of falling.

Bruce Springsteen makes my stomach hurt

When my friend told me Bruce Springsteen would be touring with the E Street Band, I got a familiar hollow feeling in the pit of my stomach.

Every time I have seen Springsteen in concert lately, I decide afterward that it will be my last. Concerts are costly and they are loud. Not the kind of loud, though, that would help semi-deaf people like me to hear. The kind of loud that makes all the notes sound the same, so it takes me a while to determine the song. Sitting at home with my iPod is a better way to enjoy the music.

But when I hear about another concert, I remember what it feels like to be with 25,000 people shouting the refrain to "Badlands" or "Born to run." I can close my eyes and for a moment or two the wheelchair, FA and everything else disappears. I swear Springsteen knows about life in a wheelchair.

So I decided to buy tickets, and the hollow feeling disappeared, to be replaced by a dull feeling. I started to worry if I would be able to buy tickets, maybe they'd sell out. Even though all I have to do to get tickets is call the accessible seating office. They call me back and ask where and when.

I got my tickets this morning and the dull feeling in my stomach has been replaced by an empty feeling. I now have to find people to go with. I got four tickets. It doesn't matter that I know plenty of Springsteen fans, both related and non.

When I find people to go, I am sure I will find something new to worry about. I just need to remember the full feeling that the concert will give: It will be too loud, to expensive, but I will belong.


Spend your life waiting
for a moment that just don't come
Well, don't waste your time waiting

Everybody's inconvenienced, but only I have to use the elevator

Everybody's inconvenienced, but only I have to use the elevator

A department at work that I interact with regularly is moving to a different floor.

I asked my boss why and he said to get people nearest other people with similar jobs. I told him I hated the idea and he agreed and said, "Everybody's inconvenienced."

I agreed out loud but what I was thinking was: "Yeah, but everyone can just use the stairway that takes them straight into the heart of the moved department. Oh wait, I can't. I have to take the elevator."

This department helps with projects, guess I won't be doing many of them, huh?

I actually had to go down there today to check on the status of a weekly project. I e-mailed a couple of people, but no one responded.

When I got down to the new floor and back to the department, I saw one of the people I e-mailed. He told me he was waiting for the other person to respond. Of course, that other person wasn't there, and it did not occur to the one who was there to look ... until I ca down there.

Fifteen minutes later I was back on that floor, this time for an ice cream party. It was tasty.

They held it in a big open area of the second floor, sort of. Actually, it was in a conference room off the big open area. Instead of being free to move around. I squeezed into the conference room, squeezed out and returned to my desk. Party!

I know nothing was done to me particularly. I am like collateral damage. But that doesn't really make you feel better; you're still damaged even if it was unintentional.

You've ruined the bathroom experience for me, Sen. Craig

Not that I liked it that much to start with, but at least I wasn't scared.

Now I worry that every unplanned twitch or reflex might draw the amorous attention of some totally heterosexual senator in the next stall.

And if a hand appeared under the partition, I think it would be all over. I would probably laugh, which is what I do when I am nervous. That might further encourage the totally heterosexual senator.

His hand might reach toward my shoe, which would get a response. But, oh lord, I would be doomed. I would jerk my foot away, which would unbalance me and cause me to topple off the toilet.

And all of a sudden, the totally heterosexual senator would see a guy with his pants around his ankles on the floor of the stall next to him. My only hope here is that he is too busy thanking his lucky stars that I can struggle up and get away.

What would he make of my bathroom experience today, I wonder.

I stood up and pulled up my shorts but couldn't pull up my pants, and in the struggle to get them up lost my balance and banged back down on the toilet. I think I even scared Claren.

I guess I'll just have to hold if if I ever go to Capitol Hill.

Party hardy

I am always surprised how much people seem to like having me at parties, really hjow much they just like me.

They don't seem to mind hoisting me and my wheelchair up four or five steps. People I have never met offer to bring me anything, at least that's what they say. I'll bet if I said: "Bring me a hookah and dancing girls. Chop, chop," they wouldn't. But I have never tried, so whose fault is it that I am hookah-less and dancing with myself?

I went to two parties over the weekend and on Sunday Claren's puppy-raisers came over for lunch. I was totally a social butterfly.

I wish I enjoyed it more.

It is the hearing problems that are most painful at parties. I can't follow a group conversation, so I wind up just sitting there. At Lisa's book party, one of my friends there kept throwing me softballs to get me into the conversation, but I couldn't even here the softballs.

But I heard Lisa and her good friends talk about the book and her dedication. And then another friend of mine came and we chatted a bit. Then it was time to go. I had asked Mom and Dad to meet me at 9. Lisa even told me how much it meant to her that I was there.

On Friday night I stopped by a big company party to celebrate an anniversary. Just for about 15 minutes. That was loud, too.

I was able to have a few one-on-one conversations. This one gal earned my undying affection when she came all the around a table, just to tell me the cupcakes were good.

The only downside of all this partying is I am so tired. I don't know how Lindsay and Paris and those girls can party so hard. Drugs? Drugs might also help the sunburned face from my Sunday lunch.

I am invincible!

I felt really good 15 minutes ago.

That's because about 25 minutes ago I almost died, and the adrenaline rush that kept me feeling righteous started wearing off 15 minutes ago.

I am not even sure what happened. I was transferring to the manual chair from my recliner when I somehow overbalanced the chair. It tipped over to the right. Because I was facing it, I fell over to the left.

The left side of my recliner is rarely clean. There are books and papers and Claren's toolbox. All on a hardwood floor.

Somehow, though, none of these these cracked my back, broke my skin or otherwise damaged me. In fact the worst pain was when I tried to sit up, lost my balance and caught myself on my elbow.

Now, though, I am out of breath, my elbow hurts, my back and butt are sore. But I did cheat death yet again. In your face, reaper-man!

Planning for the wrong thing

A friend of mine is having a book release party, but I am not sure I can go.

And it isn't because she's too young to be an author. Lisa's my age, so it's cool. I am not jealous (well, not much).

I even RSVP'd that I'd be there, but that was before I openly declared myself the biggest dork in the world.

I say "openly" because it is not that big a surprise -- I do have shelves full of action figures -- but I do like to maintain a facade of coolness, no matter how thin.

I got the Evite and saw it was a cocktail party at Chez Solomon. "I wonder if the restaurant is accessible?" I thought.

That is one of the biggest annoyances of being disabled: You have top plan everything in advance. Can I get there? How? Can I go to the bathroom there? Can my service dog come? Where's the curb cut? Will someone be there to assist me? Someone I trust?

I could go on and on.

I got Mom to call Chez Solomon to check on accessibility. She hears better on the phone than I do.

Apparently, Chez Solomon is just a person's home, not a restaurant. I still would have had to check on accessibility, but I feel so foolish for not realizing that it was a home. Apparently, my mom and the husband had quite a laugh about it.

I am not sure why actually. It doesn't sound d so horrid now that I read about it, but I cringe when I think about it.

Just buy her book.

Sharing stinks

It's the shared-ride aspect of my para-transit service that kills me.

In theory, it means they pick up other clients on the way to your destination. In practice, the shared rides are why I have been nearly an hour late to work the last two days.

The specifics: I have a daily trip at 7:15 a.m. That means the ride can show up as early as 7 or as late as 7:30. My trip to work takes as little as 20 minutes and as much as 40 minutes. Or it should.

On Monday my driver picked me up at 7:10. Awesome! But then he told me that the next pickup was scheduled for 8:30 and was five minutes away.

Even the driver thought that was stupid so he tried to take me to work first, but chickened out when he saw the highway traffic. He could have made it, I am sure.

We got to the other client's house at 7:30, so I was ready to wait about an hour. Luckily, he came out early, about 8, so I only waited 45 minutes or so since my pickup.

This is problem No. 1: "On the way" means different things to me and to the dispatcher.

Problem No. 2 with sharing rides kept me from really napping while I waited.

The other client rides farther than me, so I get off first. But there is only one entrance and exit for wheelchairs. The driver secures me in to drive to the other client's house. When the client comes out of his house, the driver unstraps me, I get out, new guy gets in and goes to back of van, driver secures him, I get in front and driver secures me. Driver wipes away sweat from all the running around and we start driving. This takes probably 10 minutes.

I was similarly late on Tuesday. My driver showed up at 7:35 and said the next pickup was at 8 (later, he said 8:30) near my work. It was, quite near, but Dispatch didn't drop me first. Instead we picked up another person in a wheelchair. The driver had had me sit in the way back at first so I did not have to get off at this woman's pickup.

She had to get off at my work, which makes things later for her, but I did not really care. See, this is the third problem: You become rivals with the other passengers, wanting to be the one to get dropped off first.

I think it was OK on this trip because the woman was rude. She had the driver turn off the air without even a glance back at me. I sort of sympathize because the person in the front spot gets a blast of the fan right in the back of the head, but you suck it up, because the vans are really stuffy. Especially if the other client has dipped herself in perfume.

And she kept telling the driver: Drop me first, then him. He kept saying no and she would raise her hands in offense and exasperation. She was more exasperated when the driver made her get off at my work so I could get off.

Is it bad the driver and I shared a smirking look?

Just a Chihuahua-size one, II

I decided to reply in a new post because I am wordy.

I like "The Book of my Enemy Has Been Remaindered" even though it doesn't rhyme and I am not sure a little kid can be my enemy (excepy my arch-nemesis Katherine).

It reminded me of the Johnny Cash song, "The man who couldn't cry." The mistreated protagonist dies end ...

he went up to heaven, located his dog Not only that, but he rejoined his arm. Down below, all the critics, they took it all back. Cancer robbed the whore of her charm. His ex-wife died of stretch marks, his ex-employer went broke. The theologians were finally found out. Right down to the ground, that old jail house burned down. The earth suffered perpetual drought.

Although I guess if it is victory over ones enemies, you really can't do better than Conan (via Liberty Meadows): "To crush your enemies, to see them driven before you, and to hear the lamentations of their women."

I discovered that it is mom's fault I am not published, too. Reading the little kid's website, it turns out she wrote stories in her diary and the mom read them.

I have been writing a journal for ages, but did mom ever violate my privacy like that? Thanks a lot, mom. Just like not making me take swimming or piano lessons. Geez.

Actually, now that I think about it, thanks a whole lot, mom.

And I know the only thing to do about suicide is put it out of my mind, maybe drive it before me, and to hear the lamentations of its women.

Just a Chihuahua-size one

For the record, kids should not be paid authors with six-book deals, especially those who write "I want to do things to change the world. I think kids like us can."

And yes I know I am jealous and cynical and this is not the good kind of bitter, but come on: Throw me a freaking bone.

I am already spending part of my day thinking about suicide. Not me, I am much too cheery for that (hee).

But people on the e-mail list are debating that guy's death. And they say nothing personal, then slam him for killing himself. His friends respond that he was the bravest, smartest, most inspiring person they will ever know. And that it was his choice to his disease.

I want to write in to the list, but I don't know what questions I should be asking myself about this. It is just icky.

Plus, my fantasy football team is losing.

Love Story may be sad, but how about these tear-jerkers?

I saw two movies this weekend that almost made me cry.

On Friday, I joined my sister and her family for a movie night with Uncle Matt. We watched "Cars." At least the kids did. I watched "Cars" until the kids heard music in the movie. Then I basically watched them flail widely about.

I kept getting goose-bumps whenever Lightning McQueen did something kind or when he saw Doc with his racing wheels. And I admit my eyes were a little damp when he pushed the King over the finish line. In my defense my allergies are acting up.

Then on Saturday, I was flipping around and came upon the end of "Blazing Saddles," when they are crashing into other movie sets and end up running off the Warner Bros. lot.

My first thought on seeing that running of the actors: "Man, that looks like fun; it would be cool to do that." I was thinking along the same vein I do when I see Superman fly (in movies. I know no one has caught him on tape).

Reality then hit and my second thought: "Damn, everyone can do that."

What?

I went to an open house party today. My friend retired last month and is leaving for South Africa on Sunday.

I met her because she raised service dogs, so a lot of people there were comfortable with disabilities. Not all those people, though, know that I am awful hard of hearing.

At noisy gatherings, I normally just try to fudge it if I don't hear somebody. I nod, say "OK" and smile. That didn't work tonight.

This guy asked me something and I nodded, said "OK," then smiled. After each one, he still looked at me kind of confused and kind of expectantly.

I stuttered and smiled some more, but the darn guy just continued to look at me expectantly.

Finally, I just said, "I'm speechless." He stopped looking expectant, now he just looked confused.

Probably because I just said I was speechless when he asked how old I was or something.

Nothing heroic in this tragedy

One of the saddest times I have ever experienced is when a friend's daughter died. She had cerebral palsy and he did most everything for her.

He just seemed broken. I guess he was.

I was thinking about this after I read an e-mail about a guy my age with Freidriech's ataxia who killed himself recently.

The note on the Internaf, an e-mail list, said that he had "been arranaging for an assisted-suicide for some time now" and that he "refused to let FA win."

We are supposed to believe that he refused to let a disease win ... until of course he gave in to the disease 100%? Fighters don't choose easy ways out.

The e-mail says he was a "people lover." But his death seems a repudiation of the very people he knew best: his family.

This is why I thought of my friend. I am sure that the guy with FA and many others see his death as freeing his loved ones to enjoy life without the weight of an FA patient.

Does his mom or dad think that today? Do they really think: "Gosh, how nice not to have to care for the boy I brought into this life. I think I will sleep in."?

I can't imagine my friend being happy he doesn't have to care for his daughter.

And how can the FA guy's sister feel? She also has FA. Did her brother just set a timetable for her? Is she not as good a person if she does not kill herself?

One of the hardest things about FA, really about life in general, is accepting help. This guy decided not to, and that is the tragedy here.