Saturday, December 28, 2013

I'm no Moon Knight

In Moon Knight #35 from 1984, Moon Knight fights the Fly. He loses ... badly, and winds up in a wheelchair.

While in the chair, one of his alter egos sponsors ballet performances, which brings him into contact with a crazy mutant who is killing members of the troupe. She kills the male lead while Moon Knight as Steven Grant is watching.

When the baddie enters, MK as SG says to his girlfriend something like "You cover me, Marlene, and I'll ... " Then he remembers he is in a chair and says "... sit here helpless."*

I was thinking about this awesome comic on my trike ride today because at the beginning of the ride I too got to sit helpless and watch a little girl lose control of her scooter and crash.

It was where the bike trail splits near Broad Street. She was on the bridge trail. I was on the lower trail just turning around.

No one else saw her and I was trying to figure out how to turn around and get to her. And then what I had no idea. Fortunately, the mom came into view then, and it turned out to be someone I know.

The girl was OK, so I guess it turned out all right except that feeling of helplessness that doesn't go away. If I were Moon Knight, I could will myself out of my chair (a scene that still gives me shivers even though it doesn't work that way for normal people, just avatars of Egyptian god Khonshu. Hmmm, maybe I need to change religions)

* I paraphrased the comic because while I could find it in five minutes if the comic boxes were accessible, no one else could. It's in the comics I reread a lot box along with the reboots of Green Arrow, Green Lantern, Daredevil, etc.

Thursday, December 26, 2013

Good with a side of crappy

Christmas, as always, brings awesomeness and more than a little crappy:

Probably Claren's last church visit was Tuesday, not that she is dying but you can't bring retired dogs to church. That made me feel bad, but if I think like that, she'll have a lot of lasts.

She, of course, entranced nearby kids at church. One just laid down a few feet away and stared at her.

The kids I live with were also entranced, not by Claren but by Christmas. Fun to be around that. I think their parents get caught up, too, in making everything perfect for their kids, which makes me sad that I don't have that.

Mass was also totally unintelligible. In crowds, a low-level buzz accompanies everything, and while I can hear people talking, understanding the words is impossible. Usually, if they are sequences I have known since childhood, I can follow them. The Church, though, changed a bunch of prayers a few years ago, as far as I can tell, to make us all believe that we are all sinful jerks. The upshot is I get lost.

Christmas was fun, but it reminds me of my many problems -- I wasn't asked to try my luck at Basket Case. And let's be clear: that was probably a good thing because if I was, I'd probably be pointing out how I felt bad having failed at Basket Case.

And through it all, I am so tired.

Friday, December 20, 2013

What's next?

Good news, the lung nodules are nothing to worry about.

I had a test today to compare the nodules to six months ago to see if they had grown. I was a little disappointed because they said the results weren't due till next week. i was actually more worried after I had the test but not the results.

So I called my awesome doctor and left her a message explaining the situation.

And at the end of the day, she called back to say the nodules were unchanged and because they were so small and because I am a low risk for lung cancer, we don't have to follow them anymore.  Yeah.

Now I can worry about whether to get Botox. Really.

Tuesday, December 17, 2013

Saving my dignity

I am writing this even though I am pretty sure my sister will never talk to me again. I have two other sisters, though.

I love my brother-in-law. I know he would do anything for me. I am equally sure he'd make fun of whatever embarrassing situation needed his help. But not until it was taken care of.

But I just could not ask him to help me change my clothes after a regrettable incident.

Instead, I asked him to bring me some clean clothes and changed myself.

It took a lot longer, but I maintained my dignity -- well at least as much as a 42-year-old wearing superhero sleeping pants ever has.

Monday, December 16, 2013

Day grinder

When I was at the dentist the other day, the hygienist suggested I get a mouth-guard because she could see I grind my teeth. And I fully admit it. I am, as the dentist later said, a "grinder."

The thing is while I know I grind my teeth,  I am 100% sure night is not the problem.

I grind my teeth when I fell or when I bang my foot into my chair.

I grind my teeth when works goes poorly or when my computer fails.

I grind my teeth when I think about Friday when I have a scan to see if the nodules on my lungs are anything.

Night might be the one time my jaw relaxes.

Saturday, December 14, 2013

All I want for Christmas is toys

It seems as though Christmas is tomorrow and that I am late. I realize I am not really. The Superhero Nativity is never late.

I finally have everybody to choose from (mostly, one more box), so gathering the visitors was like Christmas. The Big Three return, as do Santa and the Humble-Bumble and Yukon Cornelius. The others, from the right:

We start with Buffy, making a triumphant return to the nativity. She, of course, will be valuable in fighting the forces of evil Jesus is destined to face, like those jackass money changers. She also represents the parable of Lost Sheep. She was lost for years, but I never gave up and bought another. I kept looking, meaning every so often I asked Mom if she had seen a bunch of action figures. Finally, it paid off. She also represents the kind of partnership that we all need in life. I lost her stand, but all was not lost. She fits well on an unused Speed Racer stand.

Freakenstein the Gorgonite from Small Soldiers is next. He can portray any needed animals, I am sure. Plus, the Gorgonites' noted pacifism fits in with the Christmas message.

As opposed to our next figure, Alien Spawn. I don't follow Spawn but am quite confident he is not peaceful. I realize that judging Spawn to be violent by his looks is the very prejudice the Gorgonites faced, but I am sticking to my judgment.

Pops Racer will be there the manger breaks or there are other needed repairs. Joseph could repair them sure, but he is probably busy. Plus, Pops can do wondrous stuff.

I am not sure the Humble-Bumble and Yukon Cornelius will be regulars, but I just noticed they were in last year, so ...

Kid Flash is one of my more valuable figures. Or he would be if he had his own boots (he is wearing Batgirl's boots) and if the main game we used to play with his type of figure was not sliding them down fishing line from a second floor window and trying to knock them off the line into a bucket of mud. As it is, he is just a nice reminder of youth and our friend Robert, the true owner of Kid Flash.

Finally, Darth Maul. His light saber will provide light in the manger, but really he made the cut to allow me to take a stand: The Star Wars prequels don't hold a candle to the originals -- bad dialogue, creepy romance (I never got over Padme meeting Anakin as a little boy), Jar-Jar, Hayden Christensen. But you also get pod races, Darth Maul, Yoda fighting, awesome light saber fights, the battles involving Clone Troopers. They're fun.

Not as much fun as Superhero Nativities ...

Here are the ones from 2007,  2008200920102011 and 2012. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Tuesday, December 10, 2013

Braced for failure

I got some new braces today. They are big honking things that look like Robert Griffin III should be wearing them, not a wheelchair user who doesn't walk.

I think I am the most hopeful about them; no one else seems to think they'll work.

My therapist recommended them, although she was clear to tell me not to get them unless they felt right. My ankles are flexible enough ... now, she says. The problem becomes if I do nothing, and my foot becomes more entrenched in the "drop foot" angle, an angle closer to 180 degrees at the ankle, rather than 90. By getting braces now, I can stretch my ankle and put off problems.

But they don't feel right -- that's why I asked for a test period before buying.

The front of my foot tended to slide out of the brace when we tried it. I think, though, I need to see whether it happens when I am lying down. We'll see tonight. It sure feels odd to be the most optimistic about them.

Tuesday, December 3, 2013

Good torture

When I was leaving work today for physical therapy, one of my co-workers wished me luck at the "torture session."

I love PT, and my therapist is awesome. But that doesn't mean a few of the Geneva Conventions weren't broken.

We started off OK, just some stretching. Then I was supposed to lift my legs up and down and out and in. I was OK on the horizontal but the vertical killed me. My legs did not want to do it.

It got worse. I was supposed to be pulling my toes up but I was not having much luck, especially with my right foot. Unless I spasmed and jerked my leg all over, I couldn't do it reliably.

I'm going to get some stims, she says, referring to electric stimulants. My crappy legs do not feel much, so she had to really crank the power to get them to work. It sort of worked, not great. It wasn't the deus ex machina I am looking for.

Next, we did bridges, which for some odd reason I have really improved at. She still has to sit on my legs, but I no longer almost push her over backward.

Finally, she was working on my balance. She had me sit on the edge of the mat and hold this piece of tape in both hands over my head and then stick the tape in this mirror right in front of me. If you are confused about the logistics of this, that's OK. The only important thing to know is that it was really hard and when I was finally about to get the tape on the mirror, she moved the mirror. Really!

It was like doing therapy with my little sister. It's that fun, too.

Monday, December 2, 2013

My rock

Claren may be old and tired, but she is still awesome.

She was on my bed today, and I sat down to do a balance exercise where I just sit up straight with no back rest. I of course, need to hold on to my super pole to not fall.

Or I did until Claren moved to put her big old butt right in my back, giving me the support I needed to sit with no hands.

She didn't even move when I fell over on her.

Tuesday, November 26, 2013

A new moon

We all know about the harvest moon, blood moon and blue moon.

Astronomers today discovered (and by astronomers I mean me) what will tentatively be called the Therapist's Moon.

It happens when your physical therapist has you crawl on your belly 15-20 feet on two very sticky mats while you are wearing shorts.

I don't know that anything was completely out in the open, but with almost every step (crawl?), my PT was pulling up my pants.

And it wasn't like this was private either. We were in a busy therapy room and one of the mats was right next to this other therapist who was working with some woman. They were working on her legs while she sat in her wheelchair, so they did have plenty of opportunity to chuckle with me and cheer me on.

Someone commented that it was easier to do this exercise with me than a 16-year-old boy, who would be mortified. YAY! In at least one way, I am more mature than a 16-year-old.

Saturday, November 23, 2013

The perfect service dog for me

I have written and rewritten this post for a week, both in my head and on my computer screen. Nothing sounded right. Either too sappy or too mean, too adoring or too dismissive. (Although the part about me being named Super Awesome Galactic Emperor was gold!) So here it is with as little schmaltz and as few modifiers as possible.

Which of us looks younger?
On Tuesday, I began transitioning Claren to stay-at-home pet from Service Dog. She is not sick or anything, so it will be a long transition, giving us both time to get used to it. She will eventually be a pet for Mom and Dad, but she will stay with me at night because Mom and Dad sleep upstairs and Claren dislikes stairs.

Claren has been telling me for a while she is tired. She is a little slower, but I am a bad wheelchair driver, so it is good for me to go slow. And when there is food or play involved, she is anything but slow. She still leaps over the wall to get to her ball. She is a little hard of hearing, but she hears my commands or knows intuitively what I need. She sleeps a little more soundly, but wakes when needed. She has recently also become reluctant to pick up metal, like my keys or a binder clip. I assume they bother her teeth.

She may be tired, but she is grumpy when I leave her, hence the slow transition. I am leaving her with Mom and Dad  Tuesday and Thursday morning. I have physical therapy on those days in the afternoons so Mom brings her with her when she picks me up to go to therapy. Eventually, I'll leave her more and more. I may also ask a work friend to keep her.

Claren is not the perfect service dog. She picks up just about anything I ask her to, but she holds it at arm's length so I have to bend to get it. I have always figured she is just trying to et me to stretch and exercise so I never asked her to change that. She sleeps on my bed only for as long as I pet her. She is distracted by other dogs. When we go to puppy plays, it is like I don't exist. After almost failing service dog school because of a reluctance to speak, Claren never speaks easily … unless she is playing or released or I am holding a treat. She is also a big fan of swimming -- once jumping in a friend's fish pond after a day of play.

She knows how to be perfect. Someone who knew her from puppy plays was astonished at how good she was the next day on duty. Being perfect just isn't as fun. And it isn't as fun to be with.

She is perfect at one thing: Being the service dog for me. I cannot imagine a better dog for a sorta lonely, semi-depressed, very quiet 32-year-old.

I will get another service dog. I'm not sure when but I am sure it will be the perfect service dog for me.

Sunday, November 17, 2013

No time

I haven't been writing very regularly recently, but it is not like nothing is happening. Too much is.

I get real busy at work in November, working on this, which is fun but a lot of work.

Mainly, though, I am doing physical therapy on my legs twice a week so am working extra to make up those hours. Not sure that makes sense; I think I should just use sick leave.

The therapy is great. I am doing all sorts of things to strengthen my ankles, hamstrings, quadriceps, butt muscles and more. I am also learning why I have so much trouble with some exercises. My effed-up brain sends a signal turning on the right muscle but also turns on the opposing muscle for some reason.

If only I had a few extra  hours.

Thursday, November 14, 2013

Seeing friends

I went to dinner last night with three friends. 

It was quite loud. I think I must have been smiling and nodding too much because one of my friends emailed me and mentioned the loudness.

I would love to hear better at dinner, but really just seeing three good people who enjoy spending time with me is enough.

Tuesday, November 12, 2013

Another reason to hate the cold

Apparently, when it is cold, you are allowed to act like a #$$*&%$.

At least I assume so after the subway elevator doors began to close on me, and two guys just stared straight ahead hands in their pockets.

Saturday, November 9, 2013

The adventures of Sad-Man

I am sad.

I ran over the puppy today. Claren's skin allergies are acting up and she scraped up her head, which means she needs to wear a cone, which means she can't jump onto my bedd.d She just stands at my bed with her chin on the mattress and looking at me. A friend of the family also got a poor neurological diagnosis.

The last is really the worst.

Whenever someone is diagnosed with a neurological disease, I feel guilty. It makes no sense, I know. No one else should have to go through what I do. I know it doesn't work that way, but I feel like I need to apologize.

My sister heard me say I am sad and pointed out that everything makes me sad.

I said elephants don't. She disagreed, pointing out that they get poached and their tusks cut off. She was right -- I was thinking of the poaching crisis right after I said elephants.

I next tried superheroes. She said they make me sad because I think why can't I do that. Dammit! She  was right again.

I think that is my superpower.

Sunday, November 3, 2013

Bathroom of horrors

When I was younger, I had all the normal fears: that we'd have a nuclear war, that my parents would die, that druggies sitting behind me in church would inject drugs into my back through the pew (really).

I am older now and have put away such childish fears.

Unlike a few Doomsday peepers, I am not too worried about a nuclear war. And if it happens, bring on the zombie apocalypse. Not that I'd live through it, but whatever.'

Unless they get assumed, which would cause all sorts of canonical issues, Mom and Dad will die. It terrifies me to think of all the gaps I will have to fill in my life, just the practical things like driving me to work and emptying urinals. I am pretty sure there is no hope for finding someone to do the really important things like keeping me sane. My SISter and her family will have to bring their A game is all. And that includes their dog, who French kissed me tonight.

As for the druggies, I have decided that:

  1. Needles won't go through solid wood pews,
  2. Druggies would not waste a shot on some random nerd, and
  3. Just because they were jerky bullies does not make certain old kids druggies.
Most of my fears these days revolve around the bathroom.

That room has caused me to shed more blood than Sweeney Todd, but it is my own blood. I take off my slippers or shoes to shower, and hell follows my bare tootsies.

I might catch my toe underneath a part of my wheelchair or scrape my foot on my towel holder. Sometimes my ankle joins in the fun, smacking hard against some unforeseen metal.

Of course, it is not just my feet and it isn't just blood.

I have bruises on my forehead, a sore neck and cuts on my nose because the other day at work, I stood to go to the bathroom, my right knee buckled and my head slammed into the raised seat of the toilet.

Nor is it solely physical pain.

I slipped as I was transferring to my chair after a shower the other day. Not hurt but I did need help to get up. I called my sister and asked her to come help. I was a little surprised that she responded with a long stream of words. So I just said, can you come?

She did, only it was my niece, which is what she was telling me on the phone. She got her mom, but having your 10-year-old niece hesitantly peek in to find you on the floor in your birthday suit is not cool.  She told her mom I was having bathroom issues.

Or there was the fall a few weeks ago that I recovered from by having to put my arm in my trashcan. Eewwwh.

Bathrooms kind of suck.

Wednesday, October 30, 2013

If only I had thought of the Chevy Uplander

Last night I was trying to think of a car that begins with U. Actually, I was trying to think of a car for each letter, and U was the lone holdout.

I thought of unicycle, which led to stilts, which led to thoughts about things I couldn't do when I was little.

Surprisingly, they were not a ton. I did a lot, not well maybe, but I did it.

  • I was never able to walk on my eldest brother's stilts. My other brother, who also has FA, could.
  • I could not use my sister's full-shoe roller-skates at all. They fit, but no balancce. I could use the clunky clip-on skates.
  • I could not stand with my eyes shut, my knees bent and my arms in front of me. I remember reading that this was a good way to test your balance.
  • I could not walk the balance beam at a local playground.
I chose not to do a lot, probably because I knew I couldn't, but those were four things I thought I could do and wanted to do. Oh well.

Monday, October 28, 2013

Up with people

How freaking ecstatic am I when not one, but two, guys get off an elevator at the subway so I can fit on?

Crazy happy.

I felt like clicking my heels as I left the station. Of course, that is not really doable in a chair. Plus, one of the guys who got off had to excuse himself past others who did not get off. But hey ...

Two people got off the elevator so I could get on!

And that was the only people-affirming incident today.  I was returning from lunch and hit the button to open the door. It didn't work. I hit it a bunch of times thinking the guard might sew me. I also figured someone else returning from lunch was due to arrive and they'd help me.

I then spotted someone I assumed was a co-worker, because she was headed toward the building. She came up, opened the door for me, then left. She wasn't a co-worker, just a good person who saw my futile button-pushing.

Sunday, October 27, 2013


I suppose I won the bet, but I don't feel much like a winner.

On Thursday, I had a handyman come and put up some shelves and remove the Brondell Swash bidet that had stopped working after two years. In Brondell's defense, I sometimes sit down on the seat hard. Not in their defense, the seat moves. I am still trying to decide whether to get it fixed or not.

Anyway, I wanted the handyman to put the original toilet seat back on. It was missing a screw, so Mom warned me I needed to be "extremely careful" when I sit. Oh good, I thought, because I do careful so well.

I told my sister and asked her when she thought I'd fall. She said that night Thursday. I bet I'd make it to Saturday.

I didn't fall in, but on Saturday I did use the toilet and knock it off its hinges.

Another seat is on now so no more extreme care.

Thursday, October 24, 2013

What happens in the stall stays in the stall

Gene Weingarten had an article last week about the embarrassment some people feel about pooping in the workplace. In the toilet at work, of course.

He talked about people upset by their own smells or pooping sounds. I am OK with them -- everybody does it, and it always stinks. But I am not real sure he covered my worry; however, after today I am much more confident.

My embarrassment is sound but not farts. 

There's the near-constant grunting, leading me to believe other people to think I am passing an elephant. Nevermind that I am just grunting as I transfer, pull up or down my pants, reach for the toilet paper or anything else. 

There is also the noise when I am adjusting my chair pre- or post-transfer. Do they think I am birthing a Prius?

But no longer will I worry!

Today I went into the wheelchair stall. The other stall was occupied. I undid my seatbelt and began my transfer, leaning forward to grab the bar on the wall between the stalls. I missed the bar for some reason; my feet slid under the chair, sending my head and hands into the wall between the stalls. My butt was resting precariously on the chair, but I couldn't really recover without using my hands, which I couldn't really use because they were keeping me from falling.

All through that, no response from the other stall.

No response when my hands moved to the floor.

No response when one of my hands slid into his stall.

No response when I finally fell.

I thought maybe he was uncomfortable talking mid-movement, so  when  he flushed and opened his door, I was primed to tell him my stall door was locked but I really would love help. But no response.

Then he left.

I finally was able to pull myself up and no worries and no more embarrassment.

Monday, October 21, 2013

Squished butt syndrome

My office-mate started using a standing desk today. I asked him how it was and he said his buss no longer felt squashed. Not to be a jerk, but that sounds sort of cool. I think my butt is permanently squished.

All I can do is stand up at my super-pole. I don't think that'll unsquish a thing.

Saturday, October 19, 2013

Picked last

I am feeling bad -- technically for my nephew but really it is for me.

He lost an election for Student Council, which his sister is on. Even worse, he said he was picked last in football at recess.

In the primary grades, I remember being chased by older girls, but after that ended I do not remember ever playing games at recess. I never thought it was odd either. I stood around and talked with a few other less athletically inclined guys.

I do remember being chosen last in just about every gym class. How about that for a kick in the old self-esteem? Every week for eight years, I was told I was essentially worthless. Then, for the first two years of high school, it was a lesson learned daily. And people wonder why I am bitter.

Wednesday, October 16, 2013

Health care is so awesome

I have paid about  $7,000 in medical expenses this year.

Some are for Claren -- care and upkeep of a service dog are legitimate expenses -- and some are for glasses and other items I have bought without involving insurance.

Take those out, and it is about $5,000.

My insurance provider, Geha, has a $5,000 out-of-pocket annual maximum, but I am still getting bills. Surely, you say, it must be some error.

So I called to see what the error is.

It's two actually.

  1. The out-of-pocket maximum does not include the out-of-pockets costs from the pharmacy.
  2. The out-of-pocket maximum also does not apply to my wheelchair purchase, which I got in October 2012 but was not billed for till April of this year. Geha did not even process the wheelchair until April, so I could not have paid.

But really, no problem. The health-care system rocks.

Sunday, October 13, 2013

Laughing to death

We joke about how my nephew is likely to kill me at the dinner table with an ill-timed quip. And it's true: My nephew cracks me up. Almost  everything about him makes me  laugh. But I don't need my nephew to laugh to death. Heck, I don't even need people.

Kenny the puppy knows that if he gets to me when I am bent over, I am doomed. I can't ward him off as my arms are trying to keep balance or get me back up (Thank you, weak-ass trunk).

This afternoon I was removing my coat, which required bending over. In an instant, he was on me -- licking me everywhere ... lips, ears, glasses. I had to call my niece for assistance before he tickled me to death. Plus, I laugh beyond the tickling because it is awesome to be around a puppy.

But I don't t even need other beings.

Earlier this week I took my nightly pills, then before swallowing thought of something funny and started laughing with a mouth of pills. Or the other night I laughed at a Daily Show joke when I did not have my seatbelt on.

It probably would be embarrassing but all in all not a bad way to go.

Thursday, October 10, 2013

I'd be offended if they were the Washington Cripples

I don't like Dan Snyder. I am pretty confident that he is  huge fan but that he is also a key reason the failures of the Washington Redskins in recent years. It was easy then to call him a jerk when he told USA TODAY to use caps to write that he'd NEVER change the team name. It is harder to hate him when he speaks softly and from his heart about keeping a name offensive to some American Indians.

It's not impossible. I find it ridiculously offensive that a rich white guy has the audacity to tell American Indians that they should not be offended by a name that mocks their skin color. He says it was so named because the team had several American Indians on it, so it isn't a slur but a point of pride. But, who is he to determine what should or should not be offensive?

This guy I used to work with said society should call be people who are disabled crippled because they are. He would side with Snyder, no doubt, explaining that redskin was originally not disparaging.

That's fine, and if American Indians wish to reclaim the word fine. But the white owner of a pro football team has no business using the word. Change the name.

Monday, October 7, 2013


OK, not to brag, but I have a disability and use a wheelchair. (Cue screaming girls, ala Beatlemania.)

I cannot recall a time when having a disability was frankly just smoking hot.

We have two primetime TV shows where the lead actor has a disability, and in both shows -- The Michael J. Fox Show and Ironside -- disabilidy and living with one are major themes.

Even better, one star (Michael J. Fox) actually really has a disability! Shocking, I know. Even my brother-in-law gave a thumbs-up to The Michael J. Fox Show. It is about a family dealing with the dad's Parkinson's disease. It is hilarious and sad at the same time.

The dad throws a roll at a son who is texting at the dinner table and the son says if that was Parkinson's, OK; otherwise, come on ... I am sure everyone with a disability can relate to people not knowing whether some action was on purpose or disability-related.

It mocks the culture that calls people heroes merely because they have a disability.

Ironside stars poseur Blair Underwood as a detective using a chair after he was shot. I do not know what it is like to lose the use of your legs but maintain normal control of the rest of you. But I think Underwood may be a little more-abled. He had a scene in the premiere that reminded me of the scene in Footloose when Kevin Bacon dances all through that abandoned factory. I almost expected Underwood to leap onto some uneven bars and do flips. And he has a really hot girlfriend, too.

As I said I do not know if it is realistic, but like Artie on Glee loses points for not being a wheelchair user in real life.

Not like say the Push Girls, which I have never seen.

And I just saw a photo of Lady Gaga in a chair. WTF? This is what.

And there is the Guinness' wheelchair basketball ad that AdWeek says spun circles around competitors in Q3. It does tug at your heart-strings, a bunch of pals playing wheelchair basketball and at the end all of them get out of the chairs but one. You think, What a great bunch of friends. on the realistic scale, again I wasn't sure. I would think wheelchair athletes would have crazy upper-body strength from pushing a wheelchair, not sure friends could learn it.

But who cares? It shows that we are effing hip. I am ready for my close-up.

Thursday, October 3, 2013

Little of this, little of that

I have decided to ride my handcycle every day we are on furlough. I have ridden 8.5 miles so far. That does not sound that impressive, but I am pretty pleased with myself. If nothing else, I am exhausting myself.

I forgot the best moment of Boston. Claren and I, Mom and my oldest sister were heading to the hotel Sunday night after dinner. We at at Legal Test Kitchen, down the street from the hotel so were just walking back.

Two women passed me, one wheeling, one walking.

"Hey beautiful," one said. "Hi babe," the other said.

I'd have been so happy to have been treated like eye candy, but I knew they were talking to Claren.

Tuesday, October 1, 2013

Of course I went to work

My sister came into my room last night and said: Can I ask you something without you getting all angry?

I agreed and she asked: Did you even ask if you could not go in tomorrow? Tomorrow meaning today, the day the government shut down. We cleaned our desks, set our out-of-office reply, forwarded the phones and signed a furlough notice. Then we left. I was home by 10 a.m.

I told my sister no I didn't ask; they told us to come in.

She replied that my bosses seem to like me so they'd probably let me work from home. They do seem to like me and would have let me not come in, I agreed, but I said they told us all to come in.

So why wouldn't I?

Monday, September 30, 2013

It's a wrap, Boston

I realize it has taken me longer to write about my trip than to go on it, but I have been busy.Yesterday I went to a service dog retirement party, for instance. Fun stuff. But back to Boston:

The view from the hotel room was awesome.

The accessibility was just OK. The usual complement of grab bars -- although no vertical bars, a sink that seemed accessible but only if you want to roll 10 inches under it, a bed that was at least 30 inches high.

But everything is much more accessible when you have a 24-year-old nephew who is thinking of trying out for American Ninja Warrior. I woke him up in the middle of the night to be excused. He lifted me out of the roll-a-way bed and into my chair. he even put me in the tub so I could shower. He got the 30-inch high king bed for that.

On Sunday I did not go to the expo. It was so nice out, Mom, my oldest sister and I wandered around the waterfront.

It was nice.

After that, we met Jess from Diary of a Mom and one of her girls. She was as awesome as expected.

And  then we came home.

That's all, except for the bonehead cabbies.

It was like this:  Before Mom and I left, we called Boston's main cab company and were first told that we could order a wheelchair cab, then that we couldn't and finally that we could but since they can't wait for the riders who order them, we could not call for the cab until we were there.

OK, except once we reached the cab line at South Station on Friday, the cab company did not answer the phone. We approached another cabbie, hoping he would call his dispatcher himself. Instead, he merely pointed at the number on the side of his door. Fortunately, it was a different number -- one that a dispatcher answered and promised to send an accessible cab in 10 minutes.

After 15 minutes we decided to walk to our hotel, so we called to cancel the cab. The dispatcher said the cab got there five minutes earlier, didn't see us and left. And he said they called (they didn't). Maybe that's so but I never saw them. I am not sure how the only person in a chair in the cab line can be overlooked.

The return trip had no better results. We asked the doorman at our hotel to arrange for a cab. We assumed the doorman of a premium hotel would have better luck. Nope. He called multiple times to no avail.

Well, not quite. A wheelchair cab did pull up, the driver came up to the door of the hotel, and then turned back to his cab, saying he was not our cab. Maybe he wasn't checking us out, not sure what else he was doing, but …

And it was not just me. The other guy with FA was staying at our hotel. We visited with him, him, his cute caretaker and his service dog as they sat and waited for a ride. He also told of a cabbie turning on the meter and spending the next 15 minutes figuring out how to tie his chair down.


Friday, September 27, 2013

Back to the Abilities Expo

I promised to continue my trip tales, so that means I can't write about this afternoon's insanity, wherein I thought it would be fun to ride over the bike trail's Route 7 bridge. I won't be able to tell you how the hill up did not look too daunting at first, but I realized on the way up that I was effed. I won't be able to say how I tried to turn around but couldn't, so managed to get over OK. But then it was a modest incline that almost killed me, which I won't tell you about. And I won't say how a pregnant woman helped me onto the bridge when I returned, but the  bridge was still uphill. Suddenly, I was flying, though, a biker came up beside me, put a hand on the back of the trike and propelled me over the bridge. That is what I won't tell you.

Mom and I headed to the Abilities Expo Friday about 4. It closed at 5, but we figured we'd get our feet wet. I'll be honest, the biggest drawback: lack of swag. No, wait. I take that back. The biggest drawback was that the accessible bathrooms were behind a heavy door and labeled "Family Bathroom." One would think that any expo drawing people in chairs would make sure they had adequate and well-labeled facilities. But that's me.

On that first day we found Hawaiian Moon Aloe, which sounded hokey and a waste of money but really seems to work. I also got some mints from a booth showcasing a touchscreen caption phone and saw clickithotpacks, which I will be buying. And I saw the tank chair! Well, a knockoff, but still. After that I had a rather disappointing visit to the trike booth. I wanted something like I have -- a high seat with legs out front straight -- but she didn't think they were available.

I ended with a workout on a rowing machine. I want to exercise my legs, and wondered if that was an option. Let's see, the guy said, so we did. It wasn't great. My feet were sliding out of my shoes, and I couldn't bend my legs to bring the seat forward. Just as well, where would I put a rowing machine?

Day was interesting. Mom and I and my oldest sister who lives in Boston went for the day. A few highlights: standing wheelchairs and an exoskeleton, although I wasn't allowed to try either. I did meet a guy from Waypoint Adventure, a company whose purpose seems to be organizing extreme adventure for folks with disabilities. We decided my Boston nephews and I are going to climb a mountain. Either that or help me run a Trojan race.

I also met a 55-year-old with Friedreich's ataxia, which was neat, scary, awesome, worrying ... He seemed to hear better than I, but he talked worse than I. He did have a really cute assistant.

We also watched a power soccer demo, with a girl my sister knows. A lot of banging.

I guess that is mostly it for the expo. Next: the hotel, family and Diary of a Mom!

Thursday, September 26, 2013


It is easy to tell myself I am important and have real value to society.

It is harder to do it when society totally ignores your needs. In Boston, it was the cabbies who told Mom and then the doorman at our prestigious hotel that the accessible cab was en route, or that it came and didn't see us and left, or whatever. Today, it was the torn--up sidewalk that kept me from the comic book store.

It becomes harder still when society does not ignore your needs and set aside a place for you and others with needs like yours -- an elevator, for instance -- and the people of the society say, "You know what?  Fuck you; I am more important."

That is essentially what happened today at the West Falls Church Metro.

I got off a train, maybe 25 feet from the elevator. I got to it in time to see the last three or four people get on it. A few look abashed when they saw me. A few purposefully didn't see me. No one got off to let me on.

These people would not use the elevator if the car wasn't there already. But since it is, they take it. The people who need it? They can wait.

Wednesday, September 25, 2013

I have time to take a fast train

I got back from Boston and the Abilities Expo Monday. It was a lot of fun. I spent Tuesday writing a nasty note to Boston about its cabbies (more later) and now have to decide what to do about the letter. In the meantime, let's start the debrief with the Acela trip:

It was very good. Everyone was most polite. Even the guy who assumed that because I use a chair, I must be mentally challenged, was quite polite when he held the bathroom door for me and asked if I was on the right train. The guys in DC who zipped up in a golf cart so fast they almost hit Claren and did cause her to leap backward and almost fall between the train and the platform were polite, too.

The best thing was folks talked to me, not just Mom. Granted, I could not hear them, but tried.

I was surprised how crowded the train was both ways, but we had no problems. I stayed in my chair -- not that there was a seat to transfer to. I learned five hours is my limit. After that I get antsy but whatever.

Apparently, some people also didn't learn to throw away their own trash. Three girls (college-age) got on the train, sat at one of the tables on the train, ate and drank, and then left all their trash. I stared at them as they left. A stranger cleared their trash.

The wheelchair bathroom on the train was passable -- nothing great. So I was quite surprised how many people used it as a first option. They would walk right by the restroom for able people and go to the accessible one. Idiots.

The one Acela complaint: They put out a little ramp to get you from the train to the platform. The one at the Boston station was an inch or two wider than my chair, or so it seemed. Not very goodd.

Later, the hotel and expo.

Wednesday, September 18, 2013

Do it again

This will come as no surprise to anyone -- I like routine.

My former boss made gentle fun if me when we went out for Indian food on my last day at work. He wondered where my I'd get my PB&J. My sister and brother-in-law make less-gentle fun but still bring me a mug of hot tea after dinner, even on the hottest days.

I have good reasons for embracing routines. If I know what is coming, I can get ready for it. And since it takes me ages to get ready for anything, I like the extra time routines provide.

I know, of course, that even a routine is no guarantee of the future. But it is a good predictor.

Nevertheless, I am abandoning routine for the next few days to go to Abilities Expo in Boston.

Monday, September 16, 2013

This is not good

Mom sent me an email last night asking if I was still mad. My sister asked me earlier if I was cranky.

I was up at 4 this morning, someone shot up a place I once worked (the Navy Yard), and I ran over Claren with my chair.

Nice start.

Thursday, September 12, 2013

It's not hard to be humble

I am certain that someone using a wheelchair is an arrogant jerk.

But for me using a chair provides experiences either painful or embarrassing or both, that serve to keep my self-esteem from going wild.

Maybe I fall when doing a simple transfer I have done hundreds of times. Perhaps it is having a co-worker pick me up off the floor of the bathroom.

Or maybe like this morning my f-ing bladder chooses not to behave. I thought I had just leaked a little, so I asked my sister to come in and change my wheelchair cushion. Only when she said: Is this water, did I notice my little leak was all over the damn floor.

Monday, September 9, 2013


Several years ago my older sister gave me the lamp from A Christmas Story, a copy anyway. We all know the mom broke the real one. I was thinking how alike the lamp and I are.

When he saw the mailing box, the dad pronounced fragile as "frag-i-LE."

That's how I am feeling.

Anything can send me into gloom.

Thursday, September 5, 2013

I dreamed a dream of Catwoman

I think I have feelings for Anne Hathaway.

I was going to say I am sort of obligated, her being Catwoman. But then I read a New York Times article suggesting that Ms. Hathaway is not very popular and is in fact hated. Yikes!

My feelings remain. Sure, it was just a fanboy crush after The Dark Knight Rises. It deepened, though, after watching her in Les Miserables. I love just about anybody who sings "I dreamed a dream."

That song almost always makes me cry.

I can never get past the line: "I had a dream my life would be so different from this hell I'm living."

Granted, my life is not hell, or not like Fantine's is. I don't have sell my hair, then myself to pay a slovenly couple to care for my daughter.  My hell is having to have my brother-in-law pick me up off the bathroom floor the past two days. I wasn't hurt, just slipped getting in the shower chair, but I was nekkid.

It's not hell, but I would never have believed it if you had told me at 5, 10, 15, even 20 that at age 42 I would be living with my sister, unmarried, unable to stand. I don't really recall dreaming about my future, but I wouldn't have thought any of these even remotely possible (although I am glad to say my sister and I now get along).

I don't want to see any dreams shattered, so maybe I will just dream about Catwoman.

Wednesday, September 4, 2013

Who is that masked man

Here is how I buy new glasses.

Me: Show me the most durable frames you have.
Salesperson: These.
Me: I'll take those, pointing to the ones that look similar to my current ones.

Or maybe I should say here is how I used to buy frames. Not this time.

I was all set to do the usual, but the strong ones that looked like mine did not have rims on the bottom. I trust the manager at Target Optical who assured me of their durability but couldn't do it.

That left two other durable frames, both of which would be way different. One was a style I think of when I think beatnik, black plastic rims. The other pair was curved and I realty liked it. The manager said, I don't normally like those frames, but they looks really good on you.

It wasn't until my brother-in-law, who was the only one at home or work to remark on the change, called me Spider-Man that I realized why I like them: They totally remind me of a superhero mask.

Sunday, September 1, 2013

Our Father

Last night I prayed the "Our Father."

I don't say it often. I am not really a fan of God's work. I find God full of loopholes. We praise God for the good things in life, but are told that God bears no responsibility for the bad things. (I do not accept this, however, and let God know it.) God makes us "in his image," but again is not at fault when the DNA God made or the brain matter goes wrong and leaves us struggling to sit. (Again, I hold God responsible.)

This is all to say that when I pray, I usually go to Mary or a saint. Let them deal with God.

Last night, though, I went to the source. I was so mad, and I wanted to make sure God knew it.

I fell, transferring from my chaise to my chair before bed. I was hurt not at all, but it was late and everyone else had gone to bed.

So I tried to get up, several times. I succeeded in scratching my back really painfully. And I had to call my sister for help anyway.

She got me up and I went to bed. While waiting for the Advil to kick in,  I prayed the "Our Father."

Saturday, August 31, 2013

Not just me

After a meeting the other day we were talking about energy-saving steps in our building. This woman says: You know what my pet peeve is? People who use the automatic door opener but don't need to. Oh yeah, preach it, I thought.

She went on to say how people probably considered it more hygienic but with everyone using it, the button is dirtier than the door.

Just fun to hear someone else yell about able-bodied people taking advantage of tools made for those with disabilities.

Thursday, August 29, 2013

Come on, Mom

In a fit of morbidity earlier this week, I was thinking about how SOL I'll be when Mom and Dad aren't around. I don't expect anything soon , but eventually.

It's OK, I thought, I'll tell Mom my worries and she'll tell me she'll be around a while or something else to make it fine.

EXCEPT that's not what she said.

I know, she said, I've been thinking about that, too. You'll figure it out; maybe you'll hire somebody.


Tuesday, August 27, 2013

Sorry, Claren

Dear Claren,

I love you. You are the best dog in the world. Please forgive me for allowing Kenny the puppy on my bed while I was dozing this afternoon and playing with him once he was up there.

In my defense, when I felt something hit the bed, I just thought you were moving around.

Also in my defense, you never get up on the bed anymore, but it isn't  because you can't. You actually do get on the bed but just when I am asleep.

Finally, Kenny makes me laugh. I think you'd like him if you but him. Then he'd treat you with a little respect instead of acting like he is the dog.

Your human

Saturday, August 24, 2013

Just a little fall

I guess falling over on my bike was the worst thing that happened today, but my little fountain act in Mom and Dad's driveway was not cool either.

I think no one saw the fountain bit, so we'll pretend it didn't happen.

The fall, though, was in public.

I was passing these two walkers and my feet slid off the footrests, which also serve to keep me in the seat. I slid forward off the seat but my seat belt kept me from falling off completely. I turned off the trail to pull myself up, but the side turned out to be steeper than I realized, so I rolled to a stop and then tipped over.

A jogger and the couple I passed helped me up, so it really wasn't that bad.

Tuesday, August 20, 2013

New glasses

I went to the optometrist today ... unwillingly.

The people who fix my glasses were asking every time I visited if I wanted to make an appointment, and it was getting old.

My glasses are also worn out and need replacing, but you need an updated prescription to get new glasses. So there I was at the optometrist.

It's not that I was scared. But my glasses are fine (I thought. Apparently the new prescription is a big change.), so why go?

It is hard to see anybody who requires you to put your face on machines, which are often in small spaces not meant for wheelchairs. Or who requires you to transfer to their chair  (and you really should offer to help, not more or less ignore the person until he transfers).

Now I am good for a few years at least.

Sunday, August 18, 2013

Too much

It is hard enough to deal with the odd sadness that accompanies the changing seasons four time a year.

But summer becoming fall in August? And then going back? I hope. Too much.

Thursday, August 15, 2013

Don't zip my bag

I don't like having my wheelchair bag zipped. It is hard for me to unzip.

The most valuable thing in there is a bottle of Advil, so why close it?

This does not stop people from trying to close it -- on elevators, in my office, anywhere.

I tell them not to worry about it. Often doesn't work.

I don't mind people who ask. But it is odd that people assume I need something, but apparently can't ask.

Monday, August 12, 2013

Three hours

It  was one thing to wake up at 6 a.m. on Saturday, three earlier than planned. I watched Cool Runnings, then fell back asleep till it was time to get up. John Candy and Jamaican bobsledders, it doesn't get much better.

This morning, I woke up at 3, again about three hours earlier than planned. Again, a good movie was on: The Man with the Golden Gun -- Bond and Tattoo. But that is where the similarities end, and it explains why I was working from home today.

I woke up to jumpy feet. Advil relaxes me so I took some and tried to let it work. Finally, I turned on the TV to forget about my feet. It worked. But when I closed my eyes, my feet got all restless again. Not to be out-done, my hands started getting jumpy, too.

So at 5:30, I got up, showered and started working by 6:15. Uggg.

Thursday, August 8, 2013

Always look on the dark side of life

Good things are happening, and all I can think of is how bad they are.

My brother and sister-in-law worked all weekend on fixing up Gram's yard. It was so overgrown it looked sad. Now, it looks great. Good, right? I focused on how much I wish I could have done that yardwork.

My brother and sister-in-law also built my new bookcase. My sister then put the shelves in and Mom put up all my books. Again, it looks great, and all my books are out of storage. Good, right? I focused on how many books I had to give away to fit on my shelves. That and that I lost Assassination Vacation.

My sister and her family came home. i had missed them so. good, right? I focused on how sad it is Claren wants nothing to do with their great puppy.

I could go on. But what the hell is wrong with me?

Sunday, August 4, 2013

I have to laugh

It is standard at life-changing events in our family to have these beautiful blessings that Mom develops. It is also standard for me to laugh during them.

So it was yesterday as one of my nephews prepared for college.

I hope people know that I am laughing to keep from sobbing.

The blessings are so wonderful, and they talk of the loving God who holds us in the palm of his hand and answers our prayers.

Of course, I wonder where my answers are and wonder if the palm of his hand is wheelchair accessible because I don't feel God's love and protection.

Friday, August 2, 2013

Matt and Siri not meant to be

I know I am not cut out for voice recognition.

I used Dragon Dictate, the industry leader, for a while, but I spent more time trying to train the program to my slurry voice than I did writing. And that was even when I didn't play music, which I like to do when I write.

So I didn't have great hope for Siri when I bought my iPhone 5. It did not disappoint.

Mainly, I keep it turned on for comedy value ... and for my nephew, who can't imagine nor activating every feature popssible. I think my iPhone purchase may have been the best present ever for my nephew.

He has a Games folder with 16 apps, mostly free ones. Two of them are mine. His sister had a folder called K's Games, but I just now noticed it was renamed Games 2. HA. He's awesome.

Anyway, back to Siri. 

Last night, my houseguest brought home frozen yogurt, and we ate it while watching American Ninja Warrior. I knew my nephew would like that, so I wanted to text my sister and tell her. I didn't want to type it all into the phone, though, so I tried the voice recognition.

Here is what I said: "frozen yogurt and Amèrican Ninja Warrior with Doherty."

This is what Siri heard: "Screwed Sinewell girl and bear guy named Joe Gloria our lives authorities."


It was so good I then had to send it to my sister with the addition: "The above was Siri translation of 'frozen yogurt and Amèrican Ninja Warrior with Doherty' which was my night."

She liked it. I hope my nephew did.

Tuesday, July 30, 2013

It's gotta be the bat-cycle

I put away the Batman belt when I got my new chair because the chair already had a chest strap, but recently I have been using it again when I ride my trike -- as a utility belt.

It holds me in the seat, which is a plus, but it also gives me a place to hand my water bottle, or should I call it my Bat-refresher, and a pouch with my phone, or should I call it my Bat-communicator.

Now if only I had a cool weapon or maybe some Carousel Reversal Spray.

Saturday, July 27, 2013

Reason no. 5,423,302 why I hate being disabled

Actually, this is a repeat complaint, so maybe it is only no. 5,423,301.

I hate that you can never do something stupid.  I mean, you can, but 99.999 percent of the time it bites you in the butt.

Take yesterday, for instance.

I got up and decided I needed to sit on the toilet. I knew I should not do this without something on my feet, so I decided to reach down and grab my slippers.

I knew my seat belt wasn't on, but wasn't too worried -- I had lined myself up so my shoulder would rest on a door-jamb so I couldn't fall.

And I was right. I didn't fall. I bent over, leaning on the door-jamb, my feet slipped, I fell forward and I wound up stuck -- bent over, unable to fall because of the door-jamb but unable to sit up or reach the phone.

I got Claren to speak a few times, but our houseguest mustn't know that's the "Oh shit" signal. Finally, I managed to fall and called MD (our houseguest) who came right down and helped me.

Thursday, July 25, 2013

I'm not a Rock

Years ago one of my sisters was struggling through graduate school, feeling very alone and sad. In true little-brother fashion, my solution involved a box of Ho-Hos with the lyrics to Simon and Garfunkel's "I am a Rock" written on it.

I don't remember but suspect Mom did not send my present. Who can deny, though, that life is much easier as a rock. "A rock feels no pain. An island never cries."

Being a rock may be easier, but except for this guy, no person can be a rock.

It is easy when I am able to revel in my own misery -- to believe that my problems are the worst in the world and that nobody knows the troubles I've seen.

But the something happens ... My brother falls, my sister's puppy gets really sick, a friend loses a job. And I am reminded that feeling pain is OK when it is someone you love is hurting.

Yesterday, a friend shared some painful stuff she is going through. Today, I learned another friend just died. Both made me sad. Neither deserves what they are getting/got.

But I am glad to be their friend.

I'll leave being a rock to pro wrestlers.

Monday, July 22, 2013

It's not porn; it's "The Sessions"

People looking in my window this afternoon probably wondered why I was watching porn during the day. And in their defense, there were naked people. Well, just one actually, but Helen Hunt often was not wearing clothes or was in the process of disrobing. But in my defense, it was a well-regarded movie called The Sessions.

It is the truish story of a writer who is in an iron lung who really wants to have sex. He asks his friend, the priest, who says that he thinks God will give him a pass on the sex-outside-of-marriage thing. So the writer engages sex therapist Helen Hunt. If I ever get a sex therapist, I would like her to look like Helen Hunt. This is her second movie of ministering to a disabled person, too, so maybe I should just ask Ms. Hunt on a date.

It was pretty enjoyable, even without the nude Helen Hunt.

The writer talks to the priest throughout, and the priest presents a good character, which is rarely seen, admitting he doesn't know things and seeming real.

The writer also has an encounter with a woman who says she love him but platonically. Disability, I suspect, desexualizes the person with the disability. That's been my experience. That's fine; I guess. Beggars can't be choosers. I'll just laugh with my friends.

Thursday, July 18, 2013

These dreams go on when I close my eyes

I wish I could remember my dream from last night fully because it was a rollicking adventure.

It was set in Boston in a dystopian future when the government had a shadowy group that spies on its people malevolently.

The shadowy group killed my family or the family of the main character. I can rarely tell if it is me in my dreams or if I am watching a movie.

The hero was a wise-cracking good egg -- a Bruce Willis/Spenser kind of guy -- who was trying to stay off the grid to avoid being killed himself.

At one point, he impersonates a priest as he is hiding in a church library or something. A woman befriends the priest -- platonically -- and the hero eventually drives her off for her own safety.

At that point, there was something about dogs and hockey.

Then I, or the hero, was looking for somewhere to hide out. I am going to say it was me now because there were touches from my life.

My brother-in-law from Boston was helping me find a place to lay low, but as we were getting ready to  go find a hideout, the bad guys showed up.  We eluded them, but they were always just one step behind us.

At one point, there was a boat involved, and another time I escaped the bad guys by trapping them in a video game. But then I went to a hotel in a bad part of town. No, not bad, but like the old part of town. To get there you had to go through a long tunnel guarded by soldiers.  I was able to lose the bad guys on the way in by mixing with the crowd.

I got to the hotel and was recognized because I went there regularly, which makes me wonder how smart I am at staying off the grid. I kind of gave up then, or at least decided to stop running.

Then I ran into some co-workers. There was a scene in a room with a laundry chute. I was wounded, too, in the leg, not sure how but it was bloody.

Finally, as I was headed the other way in the tunnel, the view pulled back to snipers taking aim at me.

No wonder I was tired in the morning.

Tuesday, July 16, 2013

Can no longer be a misanthrope, maybe a lycanthrope

I learned two key lessons over the weekend:

  1. Try as I might, I just can't argue that everyone (except my family and friends) is a big jerk, and
  2. Bike helmets are really, really important.
I learned the first over the course of two events. The second is less lively, so I'll start there.

I was heading to the car after having lunch with a friend. On on side of the sidewalk I was on was a fenced-off area for diners of a local restaurant. On the other side was an area for a tree. It is a grate instead of a sidewalk, so I avoid them because my chair has never met a bump it liked.

I did not notice the planter box hung on the edge of the dining area ... at least not until I smacked into it with my chair, ramming the fence into an empty table and knocking cutlery onto the ground and breaking at least one plate.

Before the restaurant staff came, some random diner came up and started picking things up and asking if I was OK.


But the bigger event came Saturday, on my bike ride. My new handcycle is awesome. Usually, I ride four bike trails, turn around (at Little Falls), ride back two trails (to Oak), meet Mom and Claren, and head home on the streets.

The way I ride is really modestly downhill on the way so I go 8-10 mph in higher gears, which is awesome. I go slower on the way back. 

I turn in the street because I have a big turning radius.

Saturday, I was going too fast when I started to turn or my tire went off the curb wrong or something. Anyway, before I knew it, my trike was turning on its side and my helmeted head smacked the pavement hard. I was fine, though. And before I knew it , I was circled by bikers helping me up and asking if I was OK.

My sister said they got their ticket to heaven for that. What about me, though? What do I get for being this font of grace?

And Mom said I had to slow down. I figured that since I survived once, I could keep doing it But no.

Saturday, July 13, 2013

I want to be this kind of disabled

I know that you really should not compare yourself to others with disabled parking passes, but it is hard when you have just spent 20 minutes looking for a parking spot as my brother-in-law and I did this afternoon when we went to the movies. (We saw Pacific Rim -- monsters and robots throwing down, so who needs a story? AMC Theaters closed caption device is less cool than the Regal glasses. At AMC, it is a little thing that sits in the drink holder on the arm rest or you hold it if you are in a wheelchair.)

Anyhoo, we left and as I was wheeling up the ramp into the van, an Audi sedan with a parking pass pulled in next to me. Out popped the driver, a twenty-something with no apparent disability. She walked to the trunk, lifted out a stroller, opened it up, walked to the back seat, lifted a baby out of a car seat and put it in the stroller, and pushed the stroller toward the store. And in case you are wondering, there was no one else in the car.

Monday, July 8, 2013


I am in a bad place. Unfortunately, I don't mean physically.

I blame my bladder. It hasn't gotten over the kidney stone trauma.

A friend suggested that a lawsuit maybe in order, but no. I think the only one I could sue would be the God that decided, "Hey, a little screwed-up DNA is A-OK." I hear he has good lawyers, and if you are winning, he trots out the old saw about he created the world.

Also, my urologist said it could be months before I am back to normal. My bladder was, to use her medical term, "jazzed."

The incontinence saps my strength, my energy, me. Yuck.

Wednesday, July 3, 2013

Toilet is less funny in person

Bill Cosbiy has a hilarious take on getting drunk and throwing up. It involves the drinker resting his head on the toilet and referring to it as his friend because it is so pleasant to rest against. It must be alcohol-related because my head did not feel so good resting against the work toilet today.

I got cocky, and I really paid for it at work. I had to go to the bathroom but was trying to finish some work so when I did go, I was a little too ready to go. And afterward I slipped on the floor.

So I was sitting on the floor OK, but I kept trying to get up. At one point I fell flat on my back bouncing my head on the toilet. I did not think "thank you, toilet," as Bill Cosby's drunk does. I thought, GROSS!

Finally, someone came in and I got him to help me up. It really angers me that I couldn't.

Tuesday, July 2, 2013

Everyone's looking out for me

My sister and family left for their month-long summer vacation. She is a teacher so she is off all summer. My brother-in-law will fly home mid-vacation, work for a while, then fly back.

But I have been alone for maybe an hour.

Mom and Dad were here for dinner, and Mom will be back at 10 (for her own peace of mind, she said).

A good friend of my brother-in-law is staying here, too, and he just came home, and told me to call him if I need anything.

My sister also sent me an email from our neighbors who said to tell me to call them for anything.

Wow, how am I supposed to get in trouble with all this help?

Friday, June 28, 2013

You went to law school for this?

It is possible I am being sued.

I got a call yesterday at work and the recording told me that "I need to serve you papers at your home or office. Please call 877..."

It never called me by name, though. And when I called the number, a message asked me to leave my name. I declined and hung up.

If it is not some scam, I suspect the woman who I replaced was the target. Ever since I started almost two years ago, I have been getting calls for her from people for her. They aren't friendly calls, either.

I support her in this instance because this is lawyering at its sleaziest.

Wednesday, June 26, 2013

This is healthy?

My doctor has again pronounced me in good shape after my physical. I'd like to add a few caveats.

  1. I still have Friedreich's ataxia, a monstrously horrid condition.
  2. I have some, ahem, rectal bleeding. This is no real surprise, but she thinks I should get a colonoscopy. Short of sleeping on the toilet, I am just not sure how I could survive the prep for this test.
  3. I have kidney stones. They are still in my kidney and we hope they will gather much moss and be there till I die, which might not be that long because ...
  4. I HAVE NODULES ON MY LEFT LUNG! WT-holy flying-F? My doctor is not worried because they are small and I am a low-risk factor. She said they are most likely scar tissue or something benign. She added that we should not panic and wants me to have a test in six months to look at them and see i they have changed My sister said her google research also showed cancer is unlikely, but I have to wait six months to find out. And of course, I am panicking. I just know that I already have worse lung cancer than a 23-pack a day smoker or tuberculosis to rival Doc Holliday's.

    I have never smoked, ever. But I blame the cigarettes I found after one of my great uncles visited or maybe after Mom and Dad's dinners years ago. I didn't smoke the cigarettes. Mostly, I just remember opening them up on Gram's back steps.
Six months of this? Maybe I'll worry about the colonoscopy.

Monday, June 24, 2013

Going gray

I saw my urologist last week, but let's forget the kidney stones and real with the real issue.

When did you get so old, she said. Your hair is so gray. Later, she said she thought I was dying my hair to look like George Clooney.

I'd write her off as a quack except I have been noticing how gray my hair is, too. Ugh.

Friday, June 21, 2013

I am a Sally Jewell man

I do my best not to get political here. BUT

I don't think it is political to say I am firmly in the tank for Interior Secretary Sally Jewell.

I met her today, and she is impressive and personable, probably like all politicians.

What won me over, though, was that when we were chatting, she squatted down to look me in the eye. No just bending over or looking down.

It was the best!

Wednesday, June 19, 2013

My sister has a rotten night

I have had worse nights than last night -- none springs to mind -- but I am sure they exist.

I woke up at 3 and did not have to go to the bathroom, but I thought to myself, well, I better use the urinal just in case. This seems to be code telling my bladder that it reallyreallyREALLY has to go.

I would have been fine, but I fumbled putting on my glasses. They fell on my chest. So I tried to use the urinal without seeing clearly. The first clue I missed was the warm rush in my hand. Then I felt it all over, including my chest where my useless glasses were. I managed to call my sister but also called Mom and Dad because I was being delicate with the phone since my hand was wet.

My sister helped me change and put towels all over my bed, then left. I lay there and cried after she left. What a horrid failure, I thought. But it got worse.

About 4:30, I woke up and decided to shower because the towels were no longer keeping me dry. I got to the bathroom, and my bladder did its reallyreallyREALLY thing again and I peed on the floor and my wheelchair cushion. I managed to get in my shower chair and thought I'd be able to go from there on my own. Right.

My glasses fell off again and I could not find them, so I found my sunglasses and put them on -- I had taken my clothes off for the shower so was wearing nothing but the shades. Then I listed off the wet wheelchair cushion. It quickly fell out of my hands into the shower stall, at which point I figured I better call my sister.

But I could not find my phone. I had to call her from the house phone, so I had to wheel over in my nakedness and sunglasses to that phone. Once again, she came and fixed everything. Then she asked if I wanted her to stay downstairs while I showered. No, I assured her.

I am an idiot.

I fell getting out of my shower chair and had to call her again. And again she came and helped with everything.

I am worried the whole Matt Trott experience is too much for her.

I told her this, and she said let's put you out on the street, see if someone picks you up.

I just hate all this.

Sunday, June 16, 2013

Suck it up

When I first told work about my kidney stone, to a person they said take it easy, get better.

When I started teleworking as I recovered, several folks told me to not overdo it and get better, to not push it.

They didn't really get that my only problem was a need to be near the toilet.

But the larger  issue was that people wanted me to trust my body, which is a lying sack o' crap.

If I only did what my body wanted, I'd never get up.

I, and I imagine most folks with disabilities, have to push ourselves.

That's one reason I found myself in the car going to Richmond yesterday to celebrate the graduations of two nieces and a nephew. It is usually two hours each way, and my rule of thumb is I need to stay longer than the time in the car to make it worth my while. This would not meet that rule but you can't always listen to how you feel.

Traffic was miserable so we turned around and it still took four plus hours to get home.

But I survived.

Tuesday, June 11, 2013


The various parts of my body are so F-----G pathetic.

Take my bladder, for instance (Please, take it. Thank you, Henny Youngman). I don't have t o go to the bathroom, but I go anyway. I am fine heading to the bathroom. I get in the stall, and all of a sudden, I have to go like no one's business.

And it doesn't help that my idiot fingers are fumbling with my pants buttons and zipper or that my stupid legs are wobbling as I try to stand or transfer.

But in good news, I believe that all these flawed parts have combined in something similar to the Three Stooges Syndrome to make me indestructible.

I say this because I fell as I was transferring back to my chair on one of the no-accident visits to the bathroom today. SMACK onto the tile floor. My forehead hit with a bounce, I saw stars, then was fine. No blood, no pain.

As I said: Indestructible.

Of course, I did have to peek under the stall door to get someone to come help me up.

Sunday, June 9, 2013


I babysat my nephew and niece last night ... in theory.

I say in theory because even though I am 41 and my niece and nephew together are 18, I am not sure who was looking out for whom.

True, I did get them in their sleeping bags about 9:30, as requested, but after that, I am not sure who was in charge.

At 10:30, I was getting ready for bed and went to take Claren out. My niece saw me and got up and opened the door.

Then as I got into bed, I knocked off a wheelchair leg. Ten seconds later, I heard my door open as my niece checked on me.

Saturday, June 8, 2013

Play ball

If you were to ask my sister, I am writing infrequently because I am wasting my time on a baseball game.

It is true I am playing Out of the Park Baseball a lot because it is awesome. But I am not writing because of my still-over-active bladder.

I am not comfortable getting out of my chair yet, and it is hard to write in my chair.

So I play ball.

Wednesday, June 5, 2013

What a friend

A friend of mine is turning 50, and his wife asked friends for remembrances. Here's mine:

...  I think the most memorable for me was March 12, 1994, the night D saved my life. D and I were there as Northwestern unbelievably beat Michigan in basketball, and as the game neared its end D  turned to me -- his small, balance-challenged friend -- and said, "They're going to storm the court," which they did. I was fine, though, because D stood in front of me with his hands on my shoulders, bracing me against the riotous fans.

Thursday, May 30, 2013

Kidney stone vignettes

I was unable, of course, to fit all the awesome moments of the last week in the last post.

No wonder it hurt
After the surgery, the surgeon apparently said to Mom and my sister in the waiting room: "This ain't my first rodeo." There were horses galloping down my urinary track?

She's one of us
My niece has a different last name but is totally a Trott. She walked in to my room when I got home Friday to welcome me home. She came up to hug me, but then stopped and said: Wait, you're not sick, are you?

I am Austin Powers
You remember the scene in the first Austin Powers when he gets thawed out and pees forever? That is how I was when I got home from the surgery. And whenever I stopped, I would move on the toilet and that would start it off again. This was when I realized my brother-in-law really loved me. My sister wanted him to help me off the toilet, but I was worried standing up would start me peeing again. But he didn't mind. (Maybe he just really loves my sister.)

But I am not Anthony Weiner
My sister made me promise not to post a photo of my taped-up private part with its string hanging out. Like I'd do that? Well, maybe if the nurse did swoon.

Would he pull it?
My sister didn't tell my nephew the specifics of my operation because, she said, he would want to see the string.

Blame it on the electric razor
After  a week of not shaving, my electric razor did not make a dent in my stubble. I called Mom to see if she had an extra razor at her house I could use. She did, but then we agreed I probably should not shave myself. So Dad came over to do it. The problem was I found it funny. Not cool to laugh when a blade is at your throat. But I am very clean-shaven now.

Monday, May 27, 2013

Awesome Memorial Day: Kidney stone, hospital dreams blasted away

I have watched hospital shows all my life -- Emergency, MASH, ER, House, Scrubs, even an episode or two of Grey's Anatomy when it could not be helped or when Summer Glau was on.

But when I was hospitalized Friday for a bitch-ass kidney stone that was blocking up my left uteter, it was nothing like any of them. I was quite disillusioned.

For instance, when I was transferred to the OR from the ER, the guy moseyed along. No one sat on my chest pounding away, yelling "Don't you die, dammit!"

There was no steamy love connections, at least that I saw. I was assuming that when the female nurse catheterized me, she would swoon, so overcome by my manhood. Word would spread and all the women in the hospital would suddenly find a reason to visit ER Room #9. But no. (I told this to my sister after my surgery, and she was shocked I said it in front of Mom.)

The one thing the shows got right. All of the folks were kind and dedicated, even if several tried to move the power chair by pushing it, not using the joystick.

But that's OK, like I said, not a  Frank Burns in the bunch, although I am not sure even Frank Burns would have been a jerk. It is not easy to be rude to me, even harder to be a jerk to Mom. And if someone did act jerky, my little sister was there to tear their fucking head off. Almost would have been worth a jerk to see that.

I guess I should start at the beginning. I went to work Friday feeling fine, but as I ate breakfast I got a pain. Gas, I assumed, although it felt different. I went to the bathroom but felt worse. I came back to my desk, felt clammy and nauseated and returned to the bathroom. I called Dad from there and recovered enough to go back to the office, email my boss I was leaving and go meet Dad.

But at home, the pain got worse. I told Mom we better go see about it, so luckily a nurse practitioner had an appointment almost as soon as I could get there so off we went, with a trash can in case I had to barf.

There is a stomach bug going around, the NP said, but fortunately she did not leave it at that. She scheduled me for a CT scan, which showed the bitch-ass stone. While Mom and I were at radiology, my little sister called and when she heard where we were, said, I'll be right there. She's great, folks! I almost feel bad for being mean to her when we were kids, but she was such a jerk.

From radiology, we went to the ER. Totally empty. I highly recommend mid-afternoon Friday as the time to get sick.

After that, I got processed and IV'd. The doctor came by to say the urologist was on his way. My sister googled my issue, the treatment and the urologist.

The ER doc wanted a urine sample. When the urologist got there, he did not seem to care, but by this point I did. I had been getting fluid and really had a full bladder. Nothing was coming out on its own, though, thanks to the stone. So they catheterized me. Felt good. I did not take the offered morphine.

My primary care doc stopped by, convincing me she is awesome.

Then we moseyed up to the OR, they asked a few questions, gave me a hairnet and wheeled me off.

As I was leaving, Mom bent down and kissed me, and I almost freaked: Am I going to die, I thought.

But no time to worry, they wheeled me in, lowered the gas mask and I was out.

From the lingering discomfort what then happened was (in layman's terms): The urologist threaded the wire to an Atari 2600 joystick up my penis and played Asteroids to bust up the stone, then he stuck in a balloon and an air tube and blew up the balloon to make sure things stayed open wide enough. And for a neat addition, the balloon is on a string hanging out of my penis, so tt they can remove it easily. I'd be more worried about the removal, but I am more concerned about the tape holding the string in place.

I won't bore you or gross you out with the recovery, suffice it to say that bladder control, never a strong point of mine, is not improved by these things. But no one complained. Well, my sister told me I should have written this sooner.

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