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."

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