Wednesday, April 30, 2008


Riding kept me busy yesterday, and writing about it kept me busy tonight.

Monday, April 28, 2008

The ties that bind

Bruce Springsteen's song The Ties that Bind popped into my head this afternoon. Really just the first line: "You been hurt and you're all cried out you say."

What does that feel like – to be all cried out? Sometimes I think I know. It feels awful. Your eyes feel dry and caked. Your throat feels dry and everything reminds you of something sad.

But whenever I think I might be all cried out, something happens to remind me that: No, sucker, you aren't all cried out yet. Try this on for size.

I woke up last night about 2:40 a.m. I was staying at Mom and Dad's, and sort of had to pee. I could have ignored it, but I get an extra hour's worth of sleep at home because Dad takes Claren out. So I decided to get up. In theory.

In reality, I slipped. There is little to hold on to. I was on the floor and I could not get up. I had Claren bark a few times, then reached my cell and called Mom and Dad's. Dad said he looked at Mom and said that at least we know it isn't Matt. He is safe downstairs. Ha! Matt is safe nowhere.

I am not sure which is worse: sitting on the floor in some unsanitary liquid or having to call your almost-70-year-old parents to help you out of said unsanitariness.

They did help me, of course. Without complaint. But I lay there a while afterward hopped up on adrenaline and anguish. That is some bitter hops.

All day I wanted to tell someone. I could even leave out the squalid parts,; just falling at night is bad enough. there are probably three non-relatives I could tell -- i have leaned on them before -- but it is awful one-sided.

Anyway what I really wanted was for someone to ask me how I was. Didn't happen at work, but my little sister asked me. Whoops, Em,

She was great about it, but because we are going to be living together, how could part of her not be thinking "I don't want to deal with this shit." To be fair, though, shit is not an issue. Still...

I asked Mom once if she thought my little sister knew what she was getting into, with me and my disease. Mom said she was sure she did not. I believe Mom was saying that no one really knows what's ahead, disease or not, and one just deals as best as one can (just like the sparrow!).

That Springsteen song ends with "You can't forsake the ties that bind." I think that is what I need to focus on.

Sunday, April 27, 2008

Tired and I didn't even give birth

As I was wandering around in a daze Friday at work (or should it be "wolling around"?), I put together just how much sleep a week of working late costs me. Just sleep, this does not count the other problems: like the "Dr. Who" episode I turned off with 15 minutes to go because I was too tired or the "Battlestar Galactica" episode I missed in its entirety, which I am watching now online, but few online shows have closed captioning and BSG is not one. It also doesn't take into account my stomach, which is just today getting back to normal.

I normally work 8 a.m. to 4 p.m. When I work late -- 11 a.m. to 7 p.m. -- I go to bed a half-hour to an hour later than my usual 10 and get up an hour later. That is about a half-hour a day gained. But I lose about a half-hour a day because I am not able to sleep on my trips much because it is later in the day.

The real pain is I lose my daily nap, 1.5 to 2.5 hours a day. By Friday I am lucky to be alive, having lost 7.5 or more hours total.

Maybe that explains why on Saturday, I slept till noon-ish and was still too tired to take a shower. My little sister tried to make me feel better by saying she had not showered much after she had her first baby. Of course, I don't have things shooting out of my womb. Heck, I don't even have a womb.

Thursday, April 24, 2008

My name is Matt

I just watched a very special episode of "My Name is Earl." Actually, it wasn't that special; it was just wheelchair-centric, and at least the woman was a real wheelchair user.

Not only that, like me she is a challenged athlete, although she is a real one. Katy Sullivan - a bilateral above-knee amputee and U.S. Paralympic Track Team hopeful and now my favorite track star (sorry, S). She had a line that someone kiss sent a tingle down half her spine.

It was a funny episode, for me at least. I wonder if non-wheelchair users appreciated it as much.

Tuesday, April 22, 2008

Bitterness takes a holiday

Oh, who am I kidding? Bitterness doesn't get holidays or go on vacation. Heck, it hardly sleeps. But I rode today. So that counteracts things.

What sort of things? Well, how about starting to cough while holding a cup of water. I managed to put the cup down without spilling much (yeah, me!), but the pasta salad on my lap pretty much ended up entirely on my shirt, pants and La-Z-boy.

Monday, April 21, 2008

I need a spandex suit

Daredevil stands alone atop my pantheon of superhero heroes.

Don't get me wrong, Green Arrow, Green Lantern, Kitty Pryde, Wolverine, Buffy, The Spirit, Batman, Spider-Man ... all awesome. But they just can't hold a candle to Matt Murdock.

Part of it is he is disabled, although where his disability, blindness, improved the rest of his senses, my disability, Friedreich's ataxia, just messes up my whole body, although I guess my senses of taste and smell are no worse than usual.

Matt Murdock is also Catholic, although usually when he is in a church he is kicking ass. When I go to church, I get little girls complimenting me on my cute service dog.

Daredevil has really cute/hot girlfriends. I am not even going to dignify this one with a comparison.

I was reading a review of one of the latest Daredevils and found another good reason, which I certainly knew but never thought about.

When you are feeling stressed out, there is really no better cure than picking up a Daredevil comic. Because no matter how bad your life is going, Matt Murdock's is much, much worse.

Bullseye has killed two of his girlfriends, Mr. Fear drove Daredevil's wife insane. His dad was killed; his mom ran off to join a convent. The man's life is a mess, but that doesn't make me happy.

In the "Born Again" story, my favorite comic book ever, a bruised and battered Daredevil says: "I keep walking ... just because it's hard to ..." I tell that to myself so often: when I fall, when I feel sick, when my ride is late. When I just feel like there is no way I can go on, I often think of Jesus or a saint. Usually, to yell at them or plead for help. Then I think about a fictional superhero and "I keep walking ... just because it's hard to ..." Well, I don't walk, I roll, because that is the way I roll. (Get it? HEE!)

Saturday, April 19, 2008

No buttons for me

I love all my T-shirts and henleys and other pullovers. Every once in a while, though, I wish I could wear button-down shirts.

I guess I could ... if I had unlimited time to get dressed and 20 times the patience of Job. Neither of those is likely.

Friday, April 18, 2008

Off-track fretting

The asphalt track around the pond at work has metal edges. They were probably guides when the asphalt was being laid. Now they are just metal border fences, separating the asphalt from the ground. In some places, the ground has worn away next to the walls, and is an inch or more below the wall's top in some places. One of these places is by the trashcan near the volleyball nets, the trashcan I used today to throw away Claren's poop.

Two of my wheels popped over the wall. I didn't worry about it, but I figured I'd just pop back on. But my main wheel just spun deeper into the ground and my little front cater wheel would not roll at all.

I tried to back up, and that worked a bit, but I was a little hesitant to wheel backward because that headed down a slope into the pond.

I decided that I would just wait -- it was a nice day. Surely someone would walk by.


I got on to the ground myself, hoping I might be able to push my chair back on the track.


Stupidly, I did not grab my cellphone out of my wheelchair bag before I got on the ground, so I had to stretch to get it.

Success, finally.

I called David, my co-worker, who came out and got my chair on track, then got me in my chair.

It does not sound awful in the retelling. Even when it was happening, at no point was I at all concerned about my safety, or Claren's, or my chair's. And it was beautiful out. I sat there and pet Claren while I waited. A Pollyanna might say I was lucky to be outdoors on such a gorgeous day.

Pollyanna didn't know much.

I got so amped up, that I was a zombie when I got back to my desk. I got home and fell right asleep for more than 2 hours.

Sitting on the ground, stuck. That's no way to live. I know I have no choice, but still.

Monday, April 14, 2008

She ain't heavy, she's my service dog

If last night is any indication, cute, furry animals will be the end of me.

I stayed up too late, first of all, watching Return of the Jedi. I'll be honest: I love the Ewoks. How can you not get chills when the spear and sling Ewoks smash logs into each side of a Chicken Walker's head?

In acknowledgement of my nights sweats, which have left me coated in sweat the past few weeks, I discarded my comforter and am sleeping in shorts and a T-shirt. Last night was cold, too cold for the T-shirt but no clothes were near enough for me to grab. But my fleece hoodie was right out in the open; Claren could get it!

I called her and told her to get it and pointed to my hoodie. She came out, looked where I was pointing, went over there and kept going, went all the way around my wheelchair, picked up a shoe and brought it to me. Claren then went and got the other shoe and brought it to me, tail wagging.

How could I not love her?

Of course I was still cold, so I flopped around on the bed till I could almost touch the hoodie and then Claren got it.

That was fine for about two hours. Then I woke up and had to go to the bathroom, having drank too much ginger ale while rooting on the Ewoks. I did take that opportunity to put some warm clothes on.

A stench woke me up a few hours later. Claren had eaten something that went right through her and onto the floor of my bedroom. I cleaned it up, then took Claren out to get anything else out. Then I figured I'd make her some rice for her morning meal in a few hours since I was up.

While waiting for the microwave, I decided to cancel my para-transit ride to work and just work from home today. I called the service and pushed "2," which is the number to cancel trips with the computer system. Unfortunately, it is also the speed dial for my folks and I guess I held it down too long because all of a sudden Dad answered. I just said:"You're not MetroAccess" and hung up. Only then did I realize it was Dad, so I called him back to tell him I was OK and I'd call later to explain.

Finally, I went to sleep on my love seat, but I had to open the patio door because the stink still bugged me.

Mom came later in the day to help me get the poop all out of the rug.

Claren seems fine tonight. Me? I'm tired.

Sunday, April 13, 2008

What a drag it is getting old

I realized recently that I am in my late 30s.

I figured this because a decade has 10 years and dividing it into early, middle and late makes each third 3 1/3. So the switch from middle to late occurs at 6 2/3 years in the decade. For me that was about March 29.

I suggested to a friend at work that my snazzy new wheelchair might be the equivalent of a sports car for able-bodied men going through a midlife crisis. I didn't tell her that according to pamphlets on Friedreich's ataxia I am on the downside of life (not that I am going to stand for that shit).

My friend laughed and told me that maybe I could find a younger babe. I assume she meant younger than me because I do not have a current babe to trade in on a younger one.

I did tell her I didn't think trophy wives were for my kind of thing … unless they were really hot. She laughed again, which is one reason I like her -- she finds me funny -– and told me it was good to have standards.

I may not need standards, it turns out.

Pulitzer Prize-winning writer Gene Weingarten writes today about an article in the Atlantic Monthly that advises women to settle for a decent guy, not Mr. Right as they get older.

Now Gene suggests that this might not be the worst thing in the world as far as his male readers are concerned. As a successful 30-something (albeit late 30s) straight and single man, I initially was right there with Gene's readers.

As I read the Atlantic article, though, I started feeling kind of bad. I don't want some woman just settling for me because, say, I provide a second income.

Then I started feeling worse because the women are encouraged to settle so they can have help putting kids to bed, changing diapers, etc. FA does not make those things easy. I guess I could change a diaper if no pins were involved and I didn't mind taking a shower afterward because I suspect I would be a full-contact diaper changer. But I might need almost as much help as I provide, so the settling woman might be out of the question.

To sum up, then: I got a wheelchair for a midlife crisis and I am not the type of guy desperate women will even settle for. Jealous as hell, aren't you?

I guess I'll wait for Natalie Portman to realize she has an endearing love for a guy she has never met. It could happen. And I'd settle for Alyson Hannigan.

Saturday, April 12, 2008

Quick and fun wheelchair fact

In the spring, summer and fall, one's wheelchair is likely to track in on its wheels SLUGS. Yes, those slimy, little snails without shells. Or maybe it's slug embryos or slug eggs or slug makings.

All I know is that on several (bordering on numerous) occasions, I have gotten up in the morning and found slugs sliming up Claren's food bowl.

This morning, it was a little guy who I told I would let go free but it was too hard. So I washed him down the drain and ran the disposal after.

Thursday, April 10, 2008

Stupid bikers

I wonder how long it will be before I cuss out a biker.

When I move back to Mom and Dad's, and then to the unbuilt house, I will be right near a bike trail. It is awesome to walk Claren on. It is wide, flat, mostly smooth.

In the past five days, I have walked three miles on the trail and been passed by lots of bikers. One has given me warning that he was passing me.

It's not like it wouldn't be better for them, too. I do not really walk a straight line, especially with the mid-wheel drive chair. I tend to wheel one way, then the other, and Claren moves with me. If I happen to roll to the side the bikers are zooming past on, then they are going to get hurt. I mean, I will, too, and Claren, so it isn't something I will try to do.

This evening I loudly thanked the biker who told me he was passing; I quietly called the biker who surged by an asshole. Who knows when I will speak up?

Wednesday, April 9, 2008


I left my velcro-sealed lunch bag in the refrigerator at work.

Someone opened it, rooted through it, took my pretzels and returned it to the fridge. I can't tell you how grossed out I am.

Tuesday, April 8, 2008

Take this job and love it

Soon after I returned to the northern Virginia area, I started looking for a therapist. For some crazy-ass reason, the new job, the switch to full-time wheelchair use, giving up driving and my return home had not solved all my problems. I was still lonely and unhappy.

I found a good and kind person to talk to and one of her ideas was to go on full-time disability. I guess she thought it would give me time to do more enjoyable things and things I should be doing to get the most out of my body (exercise). Plus, it would certainly be less tiring than working.

I wouldn't consider it, I told her, because it would not allow me to live in the manner to which I was accustomed. This was really sad because journalism is not the most lucrative of careers.

Even more than that, though, I worried that most of the things I'd do with my time off might be enjoyable and easier than work but they would not make me less lonely. I can see writing and reading and sleeping more, none of which are really activities you do with other people. Work is the only place I engage with people I am not related to. That was true then and is still true now.

So when my sister, who has been calling disability groups to find financing for our house, tells me that no one can believe that someone with Friedreich's ataxia is working full time, I don't even consider applying for disability. Even on days like today, after a night when I sat bolt up in bed at 1 a.m. sure the fire alarm was going off only to realize my ears were ringing, when the para-transit kept me on the bus for almost two hours, when all I wanted to do at work was sleep.

I could sleep on disability, but who wants to awake and alert if I am the only one around.

Monday, April 7, 2008

Matt the athlete

I got an athletic scholarship today; how's them apples, Coach Hayes?

Actually, Coach Hayes would be quite happy I got financing from the Challenged Athletes Foundation. He liked me, just thought I was hopelessly out-of-shape; no one knew about Friedreich's ataxia.

Instead, suck on it, everyone who ever laughed at me because I was small and uncoordinated and skinny and nerdy. I am an equestrian athlete!

Sunday, April 6, 2008

Maybe I'm a shaker, definitely not a mover

We are packing me up. Soon, I will move back home so I can get my condo cleaned up and on the market. I want to sell it as fast as possible, so I have more money to contribute to the new home my sister and brother-in-law are building.

I packed the first several boxes all excited because I was moving forward, but yesterday, when we were packing up my Mego superheroes, my X-Men, some of my Star Wars stuff, I realized we're not going to be unpacking them for a while.

I did not say good-bye to everyone, so there is a very real possibility that Green Arrow or Batman or slave Leia might not remember me or be mad at me. But more than that, I am casting myself willingly into a kind of limbo for the next year or two.

Of course, this limbo has two devoted parents, including one who will care for Claren in the morning so I can sleep a little later. And it has three home-cooked meals a day and laundry done, and my sister and her family next door.

It won't be that bad, and it totally makes sense. So why am I so scared?

What an eyeful

I think I owe the Internet an apology.

I did a Google search this morning of eyeful, expecting to be inundated with sites of nekkid ladies. The first result seemed promising but turned out to be a news story about a mom breast-feeding in public.

I had to go to page seven of the search results to find a definite hit for nakedness. I assume the link "Yvette Gives An Eyeful" was to a questionable site. I didn't look. Really.

On the first six pages were results about celebrities, science images and photos in general. That is basically what Merriam-Webster would expect to find: It says that eyeful means a "a full or completely satisfying view." In my defense, "a strikingly beautiful woman" is definition number two. But apparently the Web is not just about babes. Who knew?

Unfortunately, when I say "I got an eyeful this morning," I don't mean I opened the door to Natalie Portman.

No, I mean Metamucil gushed into my eye.

I was having my morning toddy (definition No. 2, Metamucil is better warm, but no liquor), and during the drink I coughed. This threw me off-balance, and my arm jumped. The drink spilled and somehow went under my glasses and in my right eye. I don't think my eye, which has been savaged by allergies already, needed the fiber. It still stings.

I really wish Natalie had been at my door instead.

Thursday, April 3, 2008

My brother hogs the spotlight

I am working on two posts. One is about superheroes; the other involves Ouija boards, drinking games and chicks. But you won't read them tonight.

You also won't read about a longstanding problem with the church or about how my nephew responded to a heartfelt email from me with a similarly engaging note that was signed "sincerely, his full first and last name."

Or about these stories, which left me scared to ride and which made me think Big Brother might show up at my condo to make me work.

When I got in the van to come home today, Mom said: Somebody is always competing for attention. Your brother fell and hit his head and is going to the hospital in an ambulance. She knew little else, but he wasn't unconscious or anything.

My brother has Friedreich's ataxia, too.

The ride home was pretty quiet. Dad focused on the road; Mom was probably praying. I was talking to God, too, but I was using words Mom is not a fan of.

My first thought after Mom told me was: What the hell did he do?

This is not so much an indictment of my brother as of FA and probably every disability. My little sister met my brother at the hospital until Mom and his wife got there. She said he stood up to put on his coat and immediately thought: I probably shouldn't do this; I might fall.

No matter how long I am in a wheelchair, I will do stupid things. I just forget how limited I am. This evening I came back from a quick walk in the rain and was struggling to get my poncho off. I was bent forward and the poncho got stuck on my head and then it hit my wheelchair joystick, which I had neglected to turn off. All of a sudden, the back of my head smacked the door. It didn't hurt, but I could not figure out what happened at first. For a second, I thought Claren leaped into my lap.

My point is not to give Mom and everyone near heart attacks, but to say that one of the crap parts of disability is you can remember doing something one way easily. No one tells you when it becomes a dangerous way to do it. You learn by smacking your head.

And hopefully you survive to learn a new way to do that something.

Tuesday, April 1, 2008

We survived

Claren was back at work today, moving a little slowly but she is on the mend.

The wheelchair guy came by, too, and put on a nice swing-away arm on the controller so I can sit at desks and tables. Not sure why he didn't give me that one to start.

The only problem now is I need to get up at 5:30 and take Claren out myself, instead of Dad doing it.

Blog Archive