Fishtailing in a wheelchair

I could write about how in a fit of crazy anger I head-butted the grab bar behind my toilet. Actually, it was more a fit of wobbliness, but you can be damn sure that inanimate object now knows that I don't take any guff.

Instead, I want to write about my cunning escape from Ole Man Winter's snowy clutches this morning at 5:45. Well, all I did was wait for someone and ask him to help me, so it wasn't that cunning. But I am getting ahead of myself.

I went out this morning to take Claren to relieve herself. I was wearing a big jacket, gloves, hat, scarf and a blanket over my sweatpants and slippers. It was snowy, but the sidewalk seemed clear. It was, but the area next to the sidewalk where I accidentally steered my wheelchair was not so clear.

I sat there for a minute considering things. Claren couldn't pull me to safety. She was too busy playing in the snow anyway. My slippers are LL Bean wicked good slippers but I knew I could not push myself to safety. Even wicked good slippers have no traction in the snow; I learned this when I got stuck yesterday.

I was near a car that I thought maybe I could push against. But it was a Lexus. I did not want to set off a car alarm. I gingerly pushed on the car with one hand and gunned my wheelchair with the other. When the car alarm didn't go off, I pushed harder. But instead of getting back on the sidewalk, my chair was sliding the opposite way, closer to the curb.

I kept trying by pushing or steering at different angles, but no luck. So I just waited. After a bit, a guy came out of my building and I asked if he could help me and he pulled me back. Kind of boring escape, actually, but it seemed more exciting at 5:45 in the morning.

Saturday in the office; no thinks it was the Fourth of July

Saturday work meetings suck.

I am basing this on the one Saturday work meeting I have been to. It was this morning and it came close to featuring everything that makes me sad about my disability. And it was a work meeting on a Saturday!

I should have been prepared for trouble right from the get-go. I called my ride service about 9:05 a.m. and asked for an ETA. "The driver says about 5 minutes," the dispatcher said. When the driver showed up about 25 minutes and several calls later, he apologized and said he got lost. OK, except he had a GPS (which would be in capitals even if it wasn't an acronym). How do you get lost when a computer is giving you directions?

We finally got there and the main entrance, the only one the para-transit bus can really use, was closed. So was the "Handicap entrance," which is not accessible for the tall para-transit bus. I got the driver to let me out in a driveway and wheeled to the building telling my dog that "this is fucking crazy." Oh, you ain't seen nothing yet.

The meeting was in the lovely and welcoming stadium-seating-style auditorium. Lovely and welcoming if you can walk, I mean. Wheelchair users can park themselves in the main aisle unless your chair can climb stairs. There isn't even a cutout where you can unobtrusively park a chair. There is a table behind the first row of the aisle down the stairs. It has a plug for your computer and an ethernet plug. It also has swiveling chairs bolted to the floor at nice intervals to keep wheelchairs out.

One of the first things we were told was where the nearest bathrooms are. I considered raising my hand to add that the nearest accessible bathrooms are on the third floor, but I realized I am the only one who cares about that.

Then they promoted one of my friends. He is a good guy and much deserves it. He works like I wish I could. He puts in many many hours and much is asked of him. I have to leave work at basically the same time or I have to plan to stay late. I can't just stay till the work is done. I am not asked to do a lot of extra things. Plus, my friend is like 10 years younger than I am.

Because the company was making everyone come in on a Saturday, we were met with a nice little breakfast spread on the way in. Of course, someone who uses two hands to propel himself and has to sit in the aisle and has to ride an elevator to use a bathroom probably isn't going to want to eat. Probably. So even when he feels lightheaded from hunger and thirst and each of his bosses offers to get him something, he probably will refuse.

I actually wasn't hating the idea of a Saturday work meeting because I am not a huge weekend fan. Weekends are often lonely. I mostly sleep, and I interact mostly with my family. I was looking forward to talking to some of my friends. But other than those two bosses and greetings when I came and went, I didn't hardly talk to anyone.

I don't know if this is my fault or others' or maybe God's. I like blaming God, but it might be difficult in this case. I want to blame others because my motion is limited. I'd see people walking around and talking at the break, but no one stopped to talk to me but my bosses. David, one of my bosses, realized something was wrong and asked if I was OK. I said I just don't like getting up early on Saturday. What was I supposed to say: I AM LONELY; NO ONE THINKS TO OR WANTS TO TALK TO ME!

I could have wheeled up to a conversation on the main aisle -- there were some -- but I am not the right size to mingle. I wheel up but half the time people don't see me. At least I hope they don't see me. Maybe they are ignoring me. No, I know it is a notice thing.

I want to write a memoir and title it "Yes, your butt does look fat from down here." It really is a different level -- wheelchair height.

So I wait for my friends to stop by and they don't. I know they don't realize how they break my heart.

And I am terrified that telling this will prompt my mom to don her black business suit and go protest my workplace's inaccessibility as she often threatens.

The nose knows

Every time I look at my face without my glasses, I am reminded of Robert Parker's cool-as-heck private investigator Spenser. Spenser was a boxer and he describes his face like this in "Back Story": "It was the face of a guy who used to box -- the nose especially ..."

But I never have boxed or even gotten into a real fight (the screwdriver fight with my cousin Danny was interrupted before it started). My nose should not be all bent and twisted, but it is.

I can't tell you the number of times I have smacked face-first into a floor, a wall, a counter, a book, and forced my nose to bear the brunt.

Even when my nose avoids a bashing, like this morning, it can't avoid a scarring.

My alarm went off, and I knocked it off the bookcase turning it off. I wish I could say I didn't do that often, but my alarm clock flies off the bookcase most mornings. Call me clumsy.

As i was putting my alarm back, I dropped it right on my face. My glasses took the heavy hurt, and the bridge of said glasses slammed into my poor nose and I soon felt the drip drip drip of blood.

I just wish I boxed.

The Fissure King

Most of the neurologists I have seen have pooh-poohed my digestive system problems, saying they are not caused by FA, I find this a little odd because my brother who has FA has similar issues and support groups on the Internet are full of others with digestive problems.

My digestive system issues are significantly aggravated by sitting all day, especially in a wheelchair, which are not the most comfortable of chairs.

That is part of the reason things are acting up on me lately. I have been at my parents' house for the better part of two weeks, first because of the snow, then because my sister and family were there.

This works out great for me for the most part. My dad takes out my dog in the mornings so I can sleep in. I have lots of people to help me. I have little kids to make me laugh. But I wind up sitting in my chair a lot, which leads to fissures, or tears in my skin near the old poop shoot.

It also raises problems because my schedule changes when I stay at my folks. A change in schedule means a change in when I eat, etc. I'm not good at that.

The neuros may not care because the issues are not caused by FA but it seems likely to me that they are an effect of FA, so somebody ought to be worried about it.

My personal physician does care; I like her.

P.S. I could have titled this "The impacted stool king" too, but that is not as catchy or clever. Plus, it's pretty gross.

Non-disability bitterness

We here at Bitter Inc. are not just bitter about our disability. Sure, that is Raison de Bitter 1, 2 and 3. No. 4 for instance might be modern short stories. Half of them seem even more pointless than free verse. They seem to follow standard conventions: A hook into the story, sometimes interesting, sometimes not. There is always a sex scene, always, even if the writer has to bring in some mystery character to sex up some other character. It apparently is totally OK to bring in random characters at the last minute, too. These people are published. Not me. But that is about to change. Here is my short story:

The tall man jostled past Susan in the ice cream aisle of her Harris Teeter. Not hers, of course, but that was how she thought of it. "Watch it, jerk," Susan muttered under her breath. In fact, though, she didn't really mind. He was not her type -- she liked being the tall one of the couple -- but it was the touch of another human and it had been so long for her. Plus it was a male touch, which was more than she could say for her ... Well, you know.

Susan was at Harris Teeter picking out dessert for her Saturday night alone. She was trying to decide between Chunky Monkey and Cookie Dough ice cream. She knew each would be delicious. at the last minute, though, she grabbed a can of rocky road ice cream. She grimaced as she thought what that might portend.

As she got in the checkout line, she noticed that the tall man was in line one person in front of her. He had bought a pack of pork chops, some broccoli, altoids and an almond joy candy bar.

When she saw the almond joy, Susan thought: "Do they even make those anymore?"

After the cashier had swiped the altoids, the tall man put them in his back pocket and it created a bugle on his left butt cheek. For some reason Susan felt lightheaded and grabbed the rack where all the tabloids are. "Anna Nicole Smith shared White House bedroom with Britney Spears," a headline blared.

when she reached the cashier, Susan knew it was fate. The tall man had left his credit card on the check-writing platform. She glanced around and quickly pocketed it. Then she began to dream of what the tall man was like. She would find his address then go take him his card back. One thing would lead to another. She was sure.

She found a phone book and looked up Arthur Dequater. He lived at 302 Wasaw Street downtown. She was sure if she hurried he would invite her in to eat the dinner he had just bought. She even brought dessert.
Art Dequater heard the knock at his door as he was cooking dinner.

"Mr Dequater? I'm afraid your girlfriend was killed today in a car crash," the police officer said grimly.

"Girlfriend?" said Art confused. "But I'm gay," and he opened the door to show a family portrait of him and his male partner.

Now it was the officer's turn to look confused. "Is this your credit card?"

Art reached for his wallet, but mistakenly grabbed the altoids. Without thinking he popped one in his mouth, found his wallet and slapped his forehead.

"Of course, I left it at the grocery store. She must have picked it up. I wonder what her story was?" he said to no one in particular.

I want to be a rat*

I spent last night at my condo last night, the first time I have been home in a week. I was kept away by snow and ice and the failure of the condo company to clean the sidewalks. Actually, no one cleans sidewalks in my neighborhood; at least no one cleans curb cuts. There were two curb cuts cleaned on my street, so Claren and I went for our walk in the street.

It was wonderful being home, even if it means taking my dog outside myself and having to get things myself. Everything is reachable and fairly easy to use. My bed has the nice stripper pole next to it so I can get in and out easily. I can watch TV at will, and "Napoleon Dynamite" was on.

Starting about 9 p.m., though, none of that mattered. My mom called and said that Mary's family was not coming till Monday night and that my niece had the stomach flu.

I should have felt bad for Mary, but all I could think about was how scared I was of getting sick. Barfing terrifies me. It is not feeling bad or not eating, it is the hurrying to the bathroom. I am really not built for speed and the result can be messy and uncomfortable and just plain rotten.

It is the morning and I have not gotten sick. I am tired, probably because I got up at 6:30, but I am still a little worried.

* -- Rats can't throw up. That is bad because they can't get rid of poison, but they have cool tricks to avoid poison and I am totally willing to go that route.

The unbearable rightness of peeing

Actually it is totally bearable.

The building where I work has about 30 to 50 men’s rooms. I can use four of them. Ten percent, not bad, you say. But it is bad. The usable four are on the floor I was on and the floor I am on. If I am anywhere else, it is a trek to an accessible bathroom.

For instance, I was in the “war room” today on another floor. I have asked that this room be renamed to something less militaristic. People laugh, but don’t seriously consider my “peace room” plan.

Anyway, it is way on one side of the building. About an hour into my work there, I realized a trip to the facilities would be most welcome. But I only had a half-hour till I went home, and going to the bathroom would take close to that half-hour because I’d have to go all the way back to the elevator, ride it to my floor, go to the bathroom, check to make sure wheelchair stall is both empty and unclogged, use the bathroom, return to the elevator, go to war room, get my coat and leave.

I did not choose that path, hence the glory of peeing when I got home.

Separately, my condo company is letting me down. After the first snow a few weeks ago, the workers cleaned the curb cuts without me asking them to. It was the first time they did that in the five years I have lived there. Should have known it was a fluke. My mom was out at my place today to pick up some stuff. I have been staying with my folks since the big storm. None of the curb cuts are clear. Jerks.

Take a back seat, Mr. Hillary

I have been at my parents' house for a few days, and today after work I faced my arch-enemy. No, not my niece Katherine; she is my arch-nemesis, although to be honest she is pretty great. My arch-enemy is the upstairs shower.

My FA set in when I was a late teen-ager so my parents never had to worry about me climbing stairs when I lived at home. Now, they have a ramp to get in and a nice big bathroom on the first floor, but sometimes you need more than a sponge bath.

I set out to climb my Everest about 5, just after I fed Claren. I set up a base camp to catch my breath at the top of the stairs and others at the entrance to the bathroom, on the chair outside the shower and fully clothed on the shower chair.

Then my mom turned on the water. After the initial burst of cold water, I realized why I had undertaken this challenge. Few things feel as good as a hot shower, and imagine a shower when you are pumped full of adrenaline and covered in sweat with a hint of stinky. It's awesome.

Getting down is no easier. I slide on my butt mostly. And my legs don't bend gracefully, so the sliding on the stairs often goes a little faster and bumpier than
I would like.

But then I am down. I could strut around (well, wheel around cockily) after climbing my Everest. I could sing my praises to the highest high.t

Usually, though, I am so tired I take a nap. But I dream about being the S---.

You can pick your guards and you can pick your nose ...

To lighten the mood:

I thought it was an unwritten rule.

No, wait. To be honest, I didn’t ever think about it. Somewhere, deep down in my body, beneath the depressing dumb brain, probably above the distressing fat stomach, it is just imbedded in the code: You do not pick a stranger’s nose.

But my building guards are taught different, and to be honest I am not sure whether that is good or bad.

Let me explain: I got to work one day a while back and a relatively new guard opened the door for me. As we were going up through the lobby, he said, you got something on your nose. I have allergies pretty much from April to October and colds the rest of the year, so I am in a continual fight against “hangers,” and I appreciate such warnings.

I reached for a Kleenex (I know, I know; it should be tissue but besides the children of my copy editor sister who says tissue) and wiped my nose but apparently missed the offending nose candy.

That’s when it happened. The guard said, I'll take care of it, and before I knew what’s going on, right there in the middle of the lobby a guard was very gently picking my nose. It took him a try or three but he got it, wrapped it up in the Kleenex and gave the wadded-up Kleenex back to me.

After I convince people that this really happened, they are at a loss. Imagine, then, how I felt after my nose cleansing. Violated, yes. Embarrassed, yes. And, just stunned that people exist who will do a distasteful job for someone else without thinking twice.

Still a little grossed-out, though.

A prayer for Matt

I always mis-remember the beginning to "A Prayer for Owen Meany." This is the first sentence: "I am doomed to remember a boy with a wrecked voice — not because of his voice, or because he was the smallest person I ever knew, or even because he was the instrument of my mother's death, but because he is the reason I believe in God; I am a Christian because of Owen Meany."

My mind has shortened the opening of this book, which I first read in a Religion and Modern Fiction class. The class was taught by a man with cerebral palsy, and looking back I think how amazing that man was — to teach and to be despite a pretty hard severe disability.

In my mind, the sentence is much shorter: "I believe in God because of Owen Meany." I like my short and sweet opening better.

If anyone writes a book about me, they can just tweak that sentence: "I believe in God because of my family."

Where is your God now? I just don't know

I have prayed all my life. When I was younger I prayed with words people have used for ages. As I got older and as my body grew more and more disabled, my prayers became more personal and more angry, but no less holy. I was still talking to God, begging for help or demanding to know things that he wouldn't share. (I use the male pronoun only for convenience.)

I always petition God. He is the one who said knock and the door shall be opened. A lot of times I feel left out in the cold all night. I want to be made whole. Hardly a day goes by that I don't make that prayer or wish or whatever. God promised everyone life to the full, but a life stuck in a chair hardly qualifies. That is the way it feels so often. My sister Mary wrote once that I was an incredible font of grace, that by being open to help I bring grace into the lives of the helpers. And that is great. But what's in it for me? I get so tired of having to be cared for by people I love and who love me but have their own issues to deal with.

It seems to me that when you are disabled, you ought to get a pass on the rest of the world's problems. You have enough troubles. And this goes for your loved ones, too. Their lives should be peaches and cream because you are going to cause problems for them.

They aren't easy, though. Things get heaped on and on, and I yell at God and curse him for not being here for me. At Mass, we say "only say the words and I shall be healed." The spirit is what we are talking about. But how can a spirit be easier to heal than a body? I can hardly say these words without wanting to cry or spit or both.

I went to Catholic school for 12 years and I was Sister Charles Borromeo's pride and joy. I learned all about the different types of prayer: Petition, adoration, reparation and thanksgiving. If we are supposed to thank God when things go well, why can't we blame him for things that go wrong?

And I know that God didn't give me my disability, but I also learned in school about the two types of sin: those of commission and those of omission. How can God not be guilty of a sin of omission regarding me and so much in this world?

I guess the worst thing is that God is no comfort to me. I get so mad thinking about that. I just can't believe he is close by, or if he is, I can't believe it is worth much.

You think rush hour is bad?

So my sister Emily thought I should include in here the marvelous misadventures of the para-transit system that gets me to work every day. They do get me to work and usually on time, but the rides often enter the realm of the surreal.

There was the time a few years ago that the driver cursed out my building guard for not opening the gate for him. Or the driver who started snapping photos of an HOV violator. Then there was the van whose door opened a bit as I was riding. These were all subcontractors, not the actual para-transit company.

Not that the company is any less dull. I recently had a ride with a guy in a large wheelchair; I believe he was paralyzed. His chair took up so much room. I was turning my chair to get on the lift and I hit his chair. I turned a little sharper and it felt clear. Then I heard him say: "Whoa, dude, you're crushing my toes." I looked back and sure enough I was bending his foot. How stupid am I? Not that he didn't deserve it a little because he was late coming out. Kidding, all my fault and unintentional, too.

Cold cheats, wins

The cold won a round tonight, but it had some help.

Right as I sat down to dinner, the fire alarm in the condo building went off. With the TV on, I could sort of ignore. But it got too annoying, and I couldn't tell if the fire fighters were there yet to turn it off, so I figured I would just take Claren for her walk.

I had to switch wheelchairs, and the alarm was getting more and more annoying so I went out with just my parka, hat, scarf, gloves, mask and blanket. No snow pants or poncho. I admit I didn't want to look too dorky to the firefighters either.

I guess it was nothing, though, because by the time I got back from my walk everything was quiet. Too quiet, but it remained calm actually.

Damn you, auto-flush

I don't know who invented auto-flush toilets, but I hope they burn in hell, or at least get a really nasty cold.

They can't save water, at least not when I am around. The toilets at work flush a minimum of five times when I use one.

I went to the bathroom this morning, did my business, stood up to clean myself and immediately froze like folks in movies who are trying to elude a motion detector.

The auto-flush had gone off, but the toilet was stopped up. I knew I couldn't get away from the toilet without setting off more flushes, but the water was rising so I didn't dare sit down.

Finally, the water stopped at the top of bowl, relieving the overthrow threat. But I could not move because another auto-flush would be a disaster.

So I sat back down on the toilet cautiously and waited ... and waited ... and waited. Clogged toilets will drain eventually, but it takes a while.

I actually pulled out my cellphone to call my boss and tell him I was delayed, but it was too embarrassing. I also took some toilet paper and covered the auto-flush sensor.

When the water was low enough to risk it, I edged out and opened the stall door and sent my dog outside. Then, holding my breath I swung off the toilet and onto my wheelchair.

And the toilet didn't flush. I felt like yelling "TA-DA!"

When I reappeared I had to explain to my boss what had happened. Not just for his sake. If I tell someone, I can laugh and forget there kind of things. If I don't they make me want to cry.

Sorry, Dad

I almost knocked my dad out tonight.

It upset me on many levels.

My dad is the one who physically does the most for me. He drives me home from work four days a week, makes my lunch, does my laundry, picks things up for me. So an injured would definitely be a blow to my lifestyle. Others would step in, but he would be missed.

I also felt a little guilty because I often feel my disability has hurt him most -- other than me, I mean.

I know he doesn't regret me or anything, but I am also sure that by his 70th birthday he did not plan to have to be chauffeur and butler his youngest son.

It wasn't entirely my fault either, and I guess I was a little annoyed at the situation, too. He went into my condo ahead of me and the door shut behind him, which was fine. It's cold out. I was in my power wheelchair so when I got to the door, I just barreled into it and knocked it open. He was right there reaching to open it; hence the near concussion.

I should have known he would open the door. My dad tries to do everything for me because, I guess, it is easier for him to most things than it it for me. Of course, I neither want nor need someone to do everything, and I react poorly sometimes. That is another reason I feel that the disability must pain him so much -- my reactions to kindness, albeit over-kindness but still kindness.

Another balancing act

Besides balancing on the bitter-funny line, I also try to balance on a horse. The bitter-funny line is harder to stay on, think.

Jawas rule

Real quickly, I have totally been kicking the cold's butt recently, and I owe it all to those little guys from Star Wars.

I had been wearing my rain poncho to keep out the wind, but I was disappointed in how little it helped. Then I pulled up the hood.

I look just like a Jawa, well if Jaws wore ponchos made of blue rubber and used wheelchairs. Of course they don't. No one in Star Wars uses a wheelchair. In fact, isn't Darth Vader the only disabled person in the Star Wars universe? And he is the bad guy? How convenient.

The thing about Jawas, though, is that they must have no peripheral vision. I mean I can't see Claren, which is bad enough, but I just cross streets on blind faith, emphasis on the blind.

But I am warm!

Sign, sign everywhere a sign

I need a few signs. They would say basically the same thing "stay the hell away," but they need to be put a little better.

One would go on the back of my service dog. I have a patch, that asks people not to pet her, but it blends in with her work vest. And people either forget or choose to forget that they have been told to leave my dog alone. Or some say to
me, "I know I am not supposed to pet her but I can't help myself." Surprisingly, I help myself when I want to run over their feet with my wheelchair.

A woman with a guide dog got on the bus I was taking to work. Her dog ha a big sign that said "please don't pet or flirt with me." I liked that, but I don't have an obvious place to put it on my dog. She doesn't have a big harness like guide dogs, so I think I need something that really stands out. I am thinking of a three-inch bright red button but what to say?

I need a similar sign for the wheelchair stall in the big men's room I frequent at work. There are seven stalls; I can use one. So when someone else either is in there or has stopped up the toilet, well I am out of luck. No one else in my building uses a wheelchair. I even tried today to use the semi-accessible stall, which has bars, but my chair wouldn't fit. I know i should be more understanding about the bathroom, but come on, try having to go to the bathroom and not being able to.