Saturday, July 31, 2010

Matt shows his mad rock-climbing skills, or something

Ever since I read a post in Bali What?, a now outdated blog by someone else with Friedreich's ataxia, I have wanted to go rock climbing.

She described her experience with a local adaptive sports group, and I thought: "I could do that."

That was more than a year ago. I looked up some local climbing centers and read about them, but I did not know any climbers or anything, so I just put it on the back-burner ... until I met J.

She mentioned she climbed, I told her I had always wanted to, and she decided we would.

Honestly, she kind of called my bluff. I did want to, but I did not really expect to. It really didn't kick in until Mom dropped me off at Earth Treks in the appropriately named Rockville.

I had e-mailed the woman in charge at Earth Treks, and she said it sounded as it I would be able to climb, so there we were last night: Me and Claren, J, and two of her climbing friends, K and T.

The staff was great. They put a harness around my waist and another around my shoulders, which no one else used, and then we were off to battle the only modestly inaccessible moment.

The climbing walls are all on big six-inch mats and there was no way up at first. So a few people just lifted my chair up. This was my power chair so that was heavy. On our exit, they just put up a sheet of wood to work as a ramp.

It is cool to be with people who don't worry about whether I can do something but instead just use common-sense methods to help me do my best.

Once on the mat, we went to a wall that was probably 20-30 feet high, strapped me to a belaying rope and sent me up. Well, more or less.

K climbed next to me and quickly realized she'd need to help my feet find and stay on the footholds. T belayed her. J belayed me, and I think she was working hard. The belaying rope holds you up so you don't fall much if you lose your grip. It can't pull you up, but J did everything but pull me up. Every inch I climbed she pulled the belaying rope tight so I never went back at all.

I looked down at one point and was surprised how high I was. I loved that Claren had wandered over and was lying right next to my chair waiting for me. I later told J how cool this was, and she immediately burst my bubble. Yeah, she said, she was lying there, "after making the rounds" of our climbing area.

When I looked down and saw how high I was, I was also surprised at how far I still had to go. I swear they have a hidden button that they push and make the wall like a million feet high.

But I finally made it! I tapped the tape marks at the top of the wall like climbers do and we started down, which was almost as hectic.

Normally, you lean back on the waist harness and walk down the wall as the belayer lets the rope out. I am not so hot with walking, so my legs kind of bumped down as I pushed off with a hand and K helped me. But we made it. Claren was glad to see me back at wheelchair level.

They lowered me right into the chair and I spent the next hour recovering, drinking water and watching them and a fourth zip up and down the wall. I figure it took me 30-45 minutes to get up and back.

Earth Treks closes at 10, so I started my second climb about 9:30. K had found what she thought would be a good wall for me to climb and so we did. I think this time I managed it in 20 minutes.

We had learned a few things from the first climb. She really braced my foot on the footholds. We also realized that I was more comfortable with a hip on the wall, rather than facing the wall. I am not sure why, but the result was we kept turning from the right hip to the left and back, whenever I ran out of handholds. The other result is some nasty rug burns on my knees from rubbing the wall through my jeans.

Afterward, I headed to the metro for a longish but pleasant ride home. I climbed a rock wall. I can't wait to go back!

P.S. I had just finished and checked my e-mail. J said she went back to the climbing center today and that I have a fan club of people who saw me and were impressed. WHOO!

Thursday, July 29, 2010

39 rocking years

To be honest, some were more rocky years. But 39 down, nonetheless.

I had a very nice birthday today. I got an unexpected birthday serenade at work, complete with cookies and a card that played "Shake your Booty." It was awesome, and the best part was that it was real unexpected, which makes things a million times better.

Then we has a quick party at home with my little sister and her family, complete with a cake that had so many candles near so many paper parasols that I am still surprised we did not have a fire to explain to Mom and Dad when they get back from the beach and their domino-playing.

After that we had a street party for where the new house is. I met a neighbor who works at Fish and Wildlife so we made some connections there.

Good times. And tomorrow: Rock climbing!

Wednesday, July 28, 2010

I fucking hate breast cancer

As a human being, I hate how it attacks all kinds.

As someone who has an unrelated disease, I hate how much money and attention go toward it. You can't shake a stick without hitting some new pink product, a percent of whose proceeds go to fight cancer.  There are pink pistols apparently, pink Ford Mustangs, you name it.

And celebrities? Forget it! They have Alyson Hannigan, Emily Deschanel, Kat McPhee, Minka Kelly and Jaime King. An almost every other celebrity known to humanity. As Friedreich's ataxia falls under the Muscular Dystrophy umbrella, we have Jerry Lewis, who refers to those of us who have neurological disorders as his kids. Oh, and don't let me forget Charo. Not that I am ungrateful.

Mostly, though, I really fucking hate breast cancer because someone I love is now fighting it.

Monday, July 26, 2010

Rear Window meets Bring 'em Back Alive meets Air Bud

Claren and her ball in better days.
Claren lost her ball.

I would be inclined to say, "Oh well, it'll turn up," because she is not the sharpest tool in the shed. The ball is also green so it blends in with the grass.

But I am almost sure she left it under the lilacs near my little sister's house. And she may not be the brightest dog in the world -- she probably is, though -- but she loves that ball and can find it almost anywhere.

Then I remembered once again why I hate the builder who built the four homes on Gram's back lot.

One of the families in those homes has a black Lab. Nice dog. He has been in our yard at least once that I know. And now I am thinking maybe more than once, because I glanced into their unfenced yard and saw a green ball.

I know it might not be Claren's, but the thing is there is no way for someone in a wheelchair to check. I can't wander surreptitiously in because well, nothing I do is secretive.

I can't go to the backdoor and knock and say, "I think my dog's ball is in your yard; I am just going to see," because -- and this is why I hate the builder -- all the backdoors are about 10 feet high and open into space ... unless the families bought a deck but the decks are still inaccessible.

The front doors are also about 10 feet high, except for one. It is only about three feet up and recessed in some stairs.

I know it is hard to build a house with front and back doors that are accessible, but this builder didn't even try. When he first proposed to buy the land to build the houses, Mom asked him what about wheelchair users. He shrugged and said, these sell.

With a secret visit out of the question, what did I do: I took a picture, like a Rear Window-reject, so my sister can go up there tomorrow. (Note for EJD: Top right corner. Technically in the third yard from the top but right on the grass line. Green rubber ball that says fetch. Go get 'em!)

Sunday, July 25, 2010

I am not proud of myself

This weekend I was going to have dinner Friday with some friends and try Georgetown Cupcake. Saturday I was going to lunch with another friend. And I would cap it all off by swimming today.

Here is what I actually did: sat on the family room couch, watched a little TV (but none today as I lost the remote), napped a lot, fell further in love with Thursday Next and ... well, that's about it. Oh, I let Claren play in her kiddie pool. And most importantly, I sprayed myself with water to survive the heat in our un-air-conditioned house.

Yes, I am kind of a loser.

I blame the heat, which just hammered me. I was getting over a little 12-hour bug and I felt fine but my body is only now getting back to normal. And the bug bout was Tuesday.

But for the record, I'd still rather be hot than cold.

Friday, July 23, 2010

A little off-balance

You know it's not your day when you can't stand on your own two feet... Wait ... Oh crap, I can't do that normally... Hang on... OK, got it:

You know it is not your day when you can't balance precipitously on your own two feet while pulling up your pants as your head rests in the corner of the bathroom stall providing some stability.

Now before you pooh-pooh my standard dressing method as crazy dangerous, just remember: It works ... usually.

But today, my left leg buckled, and I fell. My cheek hit something smooth and hard, either the wheelchair controller or the toilet, my glasses flew off behind the toilet, and I sort of sat on Claren. Surprisingly, she did not move. I think she realized she was trapped so she just took one for the team.

My pants were up this time, so I was OK if I needed help. I also had heard the maintenance guy in the bathroom, although he was gone when I got out.

I did get back in my chair OK, Claren found and grabbed my glasses. I put them on, washed up, and we went back to our desk.

Thursday, July 22, 2010

Award-winning equestrian

OK, I thought about posting this in my horse-riding blog, but I haven't written anything there sine April 2009, although it did just win a best horse blog 2010. I guess it is just that good.

Anyway, I got an email from the U.S. Equestrian Federation naming the members of the U.S. para-equestrian dressage team. I have ridden with one of the team members a handful of times. I am sure she is better than me -- she is a real horse person unlike me.

I beat her, though, when we competed, at least twice.

I guess I'll just have to be happy with my blogging award.

Monday, July 19, 2010

No poop but no fun

Every few months or so, the local chapter of Canine Companions for Independence gets together to recognize the puppy-raisers who are turning in pups.

Puppy-raisers and turning-in are pretty much just what they sound like: The puppy-raisers raise the dogs from 12 weeks to about 16 months teaching them basic dog obedience and good manners. Then the puppy-raisers turn the dogs in to the regional office of CCI, which works with them until they graduate or leave the program.

I am not going to the lunch on Saturday, and I feel a little guilty. I try to go to the turn-in lunches because it is important to me to acknowledge the great gifts the puppy-raisers have given graduates like me.

I am still astounded by the treasure that Claren's puppy-raisers and CCI gave me 6 and a half years ago. There is no part of my life that has not been sharply improved by having Claren in my life and at my side. (Well, except I have to pick up poop now and have yellow hair on every piece of clothing I own.)

I don't know what I'd do without the dog who dislikes speaking unless we are playing fetch, who -- when I release her to say hi to our co-workers -- ungracefully flops down on to her back so they'll rub her belly, who loves me pretty much unconditionally.

I don't care to imagine my life without Claren -- dreary would be one word for it -- and I know that puppy-raisers are the ones who made the magic of Claren possible. Thanks.

Saturday, July 17, 2010

Malaise-y days of summer

I don't remember ever having writer's block like this.

It is not like nothing is happening. I just don't know what to say about it.

For instance:

  • I noticed on Thursday morning a bruise on my inside upper arm in almost a perfect little circle, dime-size. In the middle is a hole. I had no idea what I did until later Thursday as I left a meeting. I swung my chair around to leave and just like I did the day before my arm got smashed between the corner of the table and my chair. People were waiting or me to go first through the door so I just kept going, knowing I'd soon get past the table and be OK. That is how bruises happen.
  • I hate even going to meetings because I often can't really hear, but my boss has been out of the office. So work has been hectic, and I mentioned to someone that I was feeling cranky. She said she had never seen me cranky. I can never tell if that is good or not. I think I hide my crankiness because I am worried that people won't understand Cranky Matt is just temporary. Mostly, though, I think I am just not cranky when I am with people I like and don't want them to deal with Cranky Matt.

I thought this theory fell apart because I thought my family sees Cranky Matt. My little sister is always calling me "Crank-enstein." But Mom said I am sometimes sad, not cranky. Take that, little sister.

  • My shoulder still hurts. It is worse in the mornings but OK once the muscle is warmed up.

I just feel rotten, not physically. Mom said maybe I miss my family, by which she meant my little sister's family. She is probably right.

Wednesday, July 14, 2010


My shoulder is bothering me. The swing-away arm on my wheelchair does not swing far enough away, so unless I maneuver carefully, my arm is unsupported and my shoulder winds up aching.

Normally, I do maneuver carefully, but this week has been hectic and I forgot one day. Now despite plenty of Advil any jarring of my arm hurts like blue blazes. And I go through a lot of jarring in a day. Trust me.

About the only bonus, when the pain causes me to almost throw my cup down at dinner, I do have an excuse.

Sunday, July 11, 2010

Learning to breathe

Turns out that I have been breathing wrong for 38 years, 11 months and 11 days.

All right, not quite. I am just breathing wrong if I want to swim.

Mom is off the hook for this one as I guess I can blame evolution for making breathe like a land animal.

I am not quite sure how to breathe yet, but as my swimming teacher bluntly put it: Yeah, it is something you learn or you take in a lot of water.

I had just admitted to the teacher that while I was being pulled a length of the pool in five-second bursts on my stomach, there was a lot of water in my nose.

It was an interesting experience. I held someone's forearms. When I was ready, I took a breath and put my face in the water. She walked backward for five seconds. I let her pull me off my legs and when they were horizontal in the water, I tried to kick.

I survived. I did take in a lot of water. It sort of rested in my nose and if I did anything nose-wise the water rushed in.

It was tiring, too. But I'm still alive.

Saturday, July 10, 2010

At least there was no elevator music

I had a few run-ins with elevators this past week but nothing unusual. I was, therefore, surprised when elevators popped up as a major plot device in my dreams last night.

In real life, an elevator started to close on me because my foot rest had just crossed the threshold but the doors didn't notice, and twice I found myself pushing the call button and rushing to the elevators only to have it shut in my face. One time I had to push the button three times before I made the elevator. But as I said, nothing unusual.

Apparently my subconscious had enough, though.

I had a dream with chapters that were tied to different rides on the elevator. Or non--rides.

In the first chapter, my brother's organization, which works with people in chairs, was meeting in my building, which had been made over to look like a big hotel. I was with him on floor 2 and a bunch of people in chairs were trying to get on the elevators but the doors kept closing too fast. Eventually, a security guard called in other guards to use security keys to hold the elevators open for the people in chairs. I remember leaning over to my brother and telling him we should have them do that all the time there are people with chairs.

In another I got off on the wrong floor and had to deal with the trauma of the elevator again. In a third, a friend was using a chair. She is one of the most non-disabled people I know, but there she was wheeling around.

The final chapter shows just how screwed up my dreams are.

I was in the back corner and this small person with what looked like a backpack got on. The doors did not shut tightly, so someone asked the person to move. He said he couldn't and we noticed the bundle on his back was stuck in the door. It turned out not to be a backpack but several layers of mothballs that were somehow lashed to his back. He shrugged off the bundle and came in, and I realized it was just a kid.

The woman in front of him somehow indicated he was her son, then she gave him a big kiss on the lips because, I guess, "THAT's how it is in their family..."

The mom then pointed out that her son smelled like mothballs, so as the door opened, another woman picked him up and shot him with the trick flower squirter she had on her lapel. The water came out like it was from a hose and it looked like the kid had gorilla fur.

Finally, she put the kid down. The mom asked if the woman covered the kid's eyes. The woman said no, and sorry to leave you hanging but that is all I remember.

But I am sure that is enough to analyze me to death.

Wednesday, July 7, 2010

We kid cuz we love

Mom told me recently about some problems the daughter of a family friend was having.

The gal dropped her kids off at her nearby sister's house, then went home and had a seizure of some sort that affected her brain somewhat. She called the sister and told her she could not find her kids.

Now, I have no kids (that I know of, haha). But I tense up when I am outside reading and look up and can't find Claren right away. I can only imagine that losing your kids must be the absolute worst thing that could happen to a parent.

The sister must have been really spooked, too, but she got her sister to the hospital. Turns out she has epilepsy of some kind and she is on medicine to keep it from happening again. All in all, a good outcome and I am sending lots of good thoughts her way.

My question to Mom after the story: How long before her siblings start making fun of the near-tragedy?

I'm not saying something really mean-spirited, but maybe asking where her kids are when they are all in plain sight. Perhaps you mock the sister for hiding the kids.

Now, I can hear people from my un-air-conditioned spot on the family room couch: "Jeez, Matt." "Be nice." "Jerk."

But I have been conditioned to make fun of the people I love, no matter what, usually with a self-deprecating angle. Maybe it is only to their spouses or parents, but it's important.

Obviously, I use jokes to lighten a disease or a tragedy, usually only if it turns out pretty OK or not as bad as it could have been. Also, I have to make fun of my people because if I treat them with kid gloves, I tell myself, then they will get worried they are dying or something. Third, one of the ways I relate to people is with humor, and if I am solemn I lose that. Finally, maybe it makes them laugh and helps them deal with the crap.

Lest you still think that I am a jerk, remember how I said I was conditioned to use humor, let me tell you some of the conditioning:

  • I flipped a friend's car at high speed on Route 29 on Election Day in my second year of college. Still don't know why. Panic, I guess. We were all OK, though, despite the car rolling into the median and landing on its roof. I remember sitting right about where I am now on the family room couch at that Christmas (I think) when my dear brother-in-law walked in from the living room and said: "So [his wife/my sister] says I can't make fun of your car accident." That was it.
  • I have mentioned how another brother-in-law calls me “Crash.”
  • My three sisters refer to me as the “little crippled boy,” whenever I get too self-pitying and maudlin. I am pretty sure one of my brothers and my third brother-in-law have used this sobriquet.
  • Even Mom has gotten into the act. When those idiots were driving the area shooting people, I told Mom I was going for a walk with Claren. I was pretty depressed at the time, and half-jokingly said, If they kill me at least it will solve my problems. Mom replied, with your luck, they'd probably just wing you and that would make things worse.
So I really hope one of her brothers asks the daughter of our family friend if she plays hide and seek with her kids.

Tuesday, July 6, 2010

I know life is not fair, but why must it be such a jerk?

On The Rising, just about every song Bruce Springsteen sings makes me cry. Well, maybe not tonight because it is 100 freaking degrees and I have no moisture free for tears. Not that I prefer cold.

But the song that did get me, despite the heat, is Countin' on a Miracle.
I'm countin' on a miracle
Baby I'm countin' on a miracle
Darlin' I'm countin' on a miracle
To come through
I guess it tells the story of someone who lost a significant other on 9/11, and the singer is forced to hope for a miracle to keep living. Or something. Maybe the singer wants the old life back. I don't know. I imagine Mrs. O'Clisham, my high school English teacher, would have a field day finding meaning in most Springsteen songs.

For me, I hate that life is so hard that we are not able to live it on our own, that we have to count on a miracle every day. Maybe that is the point, that humanity can't survive the world alone.

But it really sucks that so often you need a miracle, or even a little break, and you get crap.

Monday, July 5, 2010


When I started looking for a condo to buy, I would get into the front seat of my Realtor's sedan and he would load my manual chair into the trunk or backseat. Sometimes, my little sister would come, too, and she'd be on wheelchair duty.

I didn't give the loading and unloading a second thought until about halfway through the process he bought a brand new white Ford Escape.

I can remember saying something like: It'll be a relief to get that first scratch on it, won't it? Because, my thinking went -- and still goes -- everything gets scratches on them. As long as they work, awesome.

This was not the way my Realtor felt. Oh, I hope I never get a scratch, he said, and just like that, getting into and out of his car became fraught with peril as I tried not to scratch the Escape.

I am going to feel the same way when we move into the new house. My brother-in-law and sister are pouring their blood, sweat and tears into the house. And here I come with my wheelchair and bang the heck out of a wall or doorframe.

I was thinking of buying a manual chair to use in the house. Insurance put the kibosh on that plan, although it is hard actually to call what I have insurance.

For durable medical devices like wheelchairs, the plan covers 80% and you pay 20%. You also have to pay a deductible -- $1,500 for in-network, $2,500 for out-of-network.

I might manage to meet the in-network deductible because of a $200 pharmacy bill every three months for just two drugs. Once again, it is hard to call that kind of coverage insurance.

But ... there are no in-network providers within 100 miles. Seriously. Insurance is on the list. I hope Teddy Kennedy is haunting insurance execs these days.

I know my sister will say it'll be fine and my brother-in-law already calls me "Crash," so he is probably expecting it. But it's not about them only. I don't want to ruin my house.

Sunday, July 4, 2010

I've never played I never

I forget what it was called, but it was similar: We took these tests in college to see if we were "good." You got like a point for all the questions you answered yes to and then totaled up your points and low score was more "good."

If I was on your side, there was a really good chance you'd win because there are an awful lot of things I had never done. Still haven't.

Once we were playing and halfway through this girl decided she didn't need to keep score because she had done so few of the things. She was a challenge, but I managed to beat her.

I wish I'd lost more.

Thursday, July 1, 2010

Riding forever on the elevator

Claren and I were returning from a nice walk around the pond with two friends. I got in the elevator at the Terrace level and my wheelchair immediately made some error beep and died.

As we were passing floor 1, I was turning it on and off a few times, but I kept getting this weird error about something being missing.

At the second floor, I started thinking about telling my friends they would need to throw my chair in neutral and drag me off the elevator.

As we approached 3, my floor, I desperately mashed all the buttons on the handset and it started working.

I was worried I would be like that guy who got stuck on the MTA.

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