Nicked up

It was inevitable, I know. Maybe I should be glad it finally happened. I put a big gouge in a visible door frame. I wanted to throw up.

It's not that I thought my brother-in-law would hit me. He actually spent the day putting up a flat screen TV in my room.

It's just I have tried so hard to be careful and I made it less than three months. Even less if you count the nicks in my door frame.

Where are they at?

When Velma drops her glasses, she acts like she can't see at all, scrabbles around on the ground and is eventually handed them by the spooky Flying Dutchman, who is really Old Man Conroy in disguise.

I drop my glasses, too, but unlike the star of Scooby Doo, I am neither blind nor able to feel around on the ground to hunt for them.

And my big fear is not being gotten by a ghost but running my glasses over with my wheelchair.

That is why I called my sister (and new housemate) into the bathroom this morning. I dropped my glasses on the shower floor and they blended right in.

She found them, though, no problem. And she wasn't too scary.

Lice!

OK, has everyone's head stopped itching? No, I'll wait.

I came back from a nice lunch and visit to the comic book store to finds the DTs (the new house) in full crisis mode. The nephew who had laid on my bed this morning had lice. (OK, I'll wait again till you all stop wigging out.)

A traveling lice technician/therapist/person came over and checked the other members of the household, except my brother-in-law who does not have enough to support a louse, and we all were clear but my nephew had a trying day.

I did, too. My comic book store forgot to pull my issues of Green Arrow for me, and even worse they subscribed me to Justice League International, not Justice League of America. Argh!

Also, I am on my backup Mac because I dropped my nice one and it started making sad noises.

How do I survive? Well, for starters I may go sit on my new toilet, which has a seat warmer and bidet.

What a kid!

My nephew reminds me why I love living in my new home. And he makes a wheelchair look comfortable!

Downsizing

I threw away my autograph of the Baltimore Orioles' mascot today.

Granted, it was just a scrap of paper with "The Bird" written on it, but I have had it for 31 years. I got it at my first Orioles' game.

It didn't take up any room really, but it was the idea of thinning out my stuff. I tossed a bunch of videotapes with stuff from TV, including the first Mad About You. I also am giving away my movie videotapes and a VCR. I an even planning to get rid of some toys and my Doc Savage books.

I just don't have room anymore. And even with the shrinking that took place today, I still have too much stuff. But how can I get rid of my original iMac or my baseball cards?

But I am kind of attached to my stuff. Next week, I may scribble "The Bird" on some paper just to have it back.

Not much help

My brother came up this weekend to help my brother-in-law on the new house. It is 10 p.m. When I got up at 9:30 a.m., they were out there. They are working on my room. Have I mentioned how muchI hate being in a wheelchair?

Convenient?

A few weeks ago Mom and I were discussing where to keep my growing stash of vitamins and food supplements. We originally decided to keep them on the shelf in the kitchen with all the other medicines.

That's not very convenient for me, I told Mom. Her reply: Nowhere is convenient for you. She wasn't being mean, just honest. I love this house, but it was not meant to house someone in a wheelchair.

The new house will be more convenient, with a private bathroom, so I can use the bathroom even if a big family gathering is taking place in the family room.

I just think that Mom, who was just talking about this house, is actually correct about life with Friedreich's ataxia and that nowhere will ever be convenient.

The pills just sit on the dining room table right in front of me each night.

Lucky

Sometimes, it is just too hard.

Life. Friedreich's ataxia. Everything.

This week has been one of those times, and it isn't over. I waited for the new year to get glasses because I thought it was one set a year and I bought sunglasses over the summer. I see now it is once every two years, so either wait another year -- not an option -- or suck it up and pay.

But as hard as it has been, there have been clear reasons why I can keep going. And the reasons are certainly not because I found some vast font of grace within me. I am just lucky.

Here is a rundown of my week:

Sunday: I got into the new house only to realize the bathroom is too tight. My brother-in-law has a solution involving barn doors that sounds awesome. But it is aggravating to find that out.

Tuesday: My sister got sick, which is bad for me not only because she entertains me but also because I worry that she infected me.

Also Tuesday, I took Claren for a quick walk and got home and had all of a sudden to be excused. I didn't make it, and it took me twice as long as the walk to get me and the bathroom cleaned.

Claren could not help at all, but God love her, she did her best. She sat on the couch waiting for me, leaving me about 10 inches to squeeze in. She didn't even flinch when I sat; She just dozed right there, as close as possible. I already know she'll help me through anything, but she seemed to be saying to me forcefully: We will get through this.

Wednesday: I went to the bathroom at work and the toilet stopped up on me, almost overflowing as it auto-flushed. I was not ready for it either because what came out of me was not clog-the-toilet worthy. A janitor walked into the bathroom right then and saw the situation as I exited the stall and promised to take care of it.

Thursday: The janitor cleared the clog, but whatever caused it was still in the pipes. It smelled like a dead squirrel had been flushed down the toilet. Needless to say, it is hard to go to the bathroom if you can't breathe. SPOILER ALERT As I hurried out of the stinky stall. I did not buckle my seat belt.

I took Claren out for a walk and decided I would be excused after the walk and would use the lobby bathroom, which doesn't have an auto-door but is pretty private so no one would hear any banging to get in.

While I was out, Claren went to the bathroom and I all of a sudden had to get to a bathroom, too, and I can't use just any grassy area like her. I bent forward to get Claren's poop and just kept going. I had most of the poop in a bag, but I think I rolled on some. I never found it on me, though.

I was stuck for a minute as one arm was pinned under my body. Thankfully, the urge to go went with the fall. Again, Claren thoughtfully just laid down with her back to my back. Finally, I got my arm out and worked my way back to the chair and grabbed my phone.

I called my boss and asked for a younger friend because I didn't want to strain my boss. The younger guy was not at his desk, though, and my boss said he'd come. He did and picked me right up like I was nothing. Claren chose this point to wander off out of site but came wandering back when I called.

Back in the office I was telling a friend who said she was going to make me a spring thing I'd wear on my chest to bounce me back into my chair. She even promised to make it look superhero-y. More importantly, she told me I could call her for help.

Now, on to the glasses place.

Tearing down the new house

This morning bodes poorly for living in the new house my brother-in-law is building.

I was exiting the bathroom, not fast at all, but off-centered.

I hit the door jam, tore it not-quite off, ripped the paint next to it and popped a nail almost out.

Dad hammered the nail back and kicked the jam back into shape. We are more or less OK; the paint is ugly, but it is not obvious.

This, or something similar, will happen in the new house. No maybe's. This, unfortunately, is who I am.

I know my brother-in-law and sister are aware of my crash tendencies and still offered to let me live with them. But I still feel rotten.

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!)

Crash

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.

My very own Greek chorus

In the comedy/tragedy that is my life it is good to know that people are watching and commenting on the action, even if they are unable to help.

Mom and I went for a quick walk last night despite the foreboding clouds. I wanted to see the likely color schemes that my sister had painted on the side of the new house. We didn't get any farther. The rain started coming and it intensified fast.

As the rain got harder I gave Mom Claren to run in the side yard while I kicked it up to fifth gear and motored up the driveway. I had some trouble getting lined up for the ramp in fifth. One set of wheels, then the other went off the side at the beginning. Mom came out with an umbrella and we got in. I was soaked totally and took a shower to clean off, which is where the story ended, I thought until today.

I mentioned to my sister what happened and she said, Oh, that is why K was going crazy. Then she mimicked her 7-year-old daughter K:

UNCLE MATT! OH NO, UNCLE MATT! THIS CAN'T BE HAPPENING!

The only question I have is why on earth didn't my sister come over to check on me after that performance from my niece.

Grass is always greener

We planted grass seed in the yard of the new house today. That means, of course, that my sister and brother-in-law planted grass seed. I slept late, went for a ride on my trike read. I also sort of watched the kids while their parents worked, so I guess I wasn't completely useless.

I told Mom I hated not helping. She said that if I wasn't watching the kids, she'd have to,so she appreciated it.

Maybe if the grass grows, I'll be able to get my chair out there easier. I'm still not sure what help I'd be, but who knows.

Doctors baffled as guy walks into new house

The home-building is moving along at exactly the pace my real estate friend said it would. That means slower than I hoped but about what I expected.

Perhaps, though, this will give me time to temper my beliefs about this new house will change my life and make everything wonderful.

I am pretty sure the house will not cure my Friedreich's ataxia, and what would be the sense of that since it will have all those accessibility features.

But other than that, I have life-changing expectations.

I'll become the host of parties, and friends will stop by all the time. I will play Wii with my nephew all night. Claren the wonder dog will find canine friend nearby. Mom will still make me muffins because, let's face it, Mom's cooking vs. my sister's ... (HEE! Just a joke.) I will become a social butterfly.

I have a problem with expecting changes in locale to solve my problems. My second counselor put me on meds because I became depressed when moving back to Northern Virginia didn't make everything better.

I was so sure it would, never mind that I was also using a wheelchair full time for the first time.

I was so sure I'd make friends and go out. I guess I slowly made friends, but when you don't drive and can't get into a lot of houses, well, you don't get out as often as you'd like.

I started seeing my third counselor after I moved into my own condo, and that also did not free me, at least not like I hoped.

The house will be done in summer sometime. I have until then to lower my expectations; maybe just count on the all-night Wii marathon.

Falling down stairs

Some newspaper editors who think they are wise argue against stories when stock indexes like the Dow Jones industrial average hit a big, round number. Dow 10,000 is just a number, they argue, "nothing significant."

I disagree. They are ignoring the optimism much of the public feels when stocks are rising. People might be willing to spend more if they think their retirement funds are in good shape. That boosts company profits and leads to jobs.

The house my sister and her family and I are building had one of these insignificant milestones today: They finally put the stairs in.

My nephew and niece got to see the outlines of their bedrooms and even what the playroom in the attic will look like.

I haven't been in the house yet -- the ramp hasn't been built. And I do not want to be carried around to see inside. I want to walk into the house and up the stairs.

You know what really sucks: How am I going to get into the playroom?

Fear and self-loathing in Falls Church

Last night was just a bad night. Mom pointed out a lump under one of Claren's legs. A lump that I immediately assumed was cancer. It was all I could do to not take her to the emergency vet right then. But since a day or two will likely make little difference, I will take her next week to see the regular vet.

I also dropped my laptop. It worked fine for a while after that but now won't come on. I have a backup of all but the last few months so that is OK, but I can't stop being mad.

Everything is so goddamned hard.

My hand was a little damp and the laptop case slipped and fell on the floor. But looking back I would have done the same thing. I can't wait for someone to hand me my laptop every night.

My laptop is in as safe and easy a place to reach as we can make it. But there is always risk and in my case more risk in almost everything.

I took it to the Apple store and the genius said I had likely damaged the hard drive, logic board and display. Repair would cost $750. Of course, I can buy a new one for that price almost. And my vaunted AppleCare warranty doesn't cover self-inflicted damage.

Next week when I am at the vet, I will ask whoever drives me to take my mac to an independent repair shop. Until then, and probably after, I will sit here stewing about the crap I have to deal with.

And if that wasn't enough:

Jerkwad builder drained the basements of the houses he is building on to the land we are supposed to be building on soon even though he was told not to.

Claren sampled the poop sitting in the front yard, which means someone let their dog climb the wall on to Mom and Dad's yard, poop and then decided not to pick it up.

The Lorax would be pissed

I have always liked Dr. Seuss' Lorax. He is not for everyone, I guess, like my kindergarten niece who is scared of him and about a million other things.

It is not that I am real environmentalist. I mean I like trees, but I love development and cities. Pretty hard to use a wheelchair in fields.

It might be because I am not much of a talker; the Lorax is and best of all he talks for those who don't talk themselves. "I am the Lorax, I speak for the trees. I speak for the trees, for the trees have no tongues." How can you not love the guy?

They started development in the field Friday. Not our house, not yet. Why you would start anything on a Friday is beyond me but whatever.

It was no fun to see, but we all knew it was coming. All I really minded was the trees, and they weren't even nice trees. It was just sad to see these things that survived so much torn up by a big old machine.

If I were the developer, I'd watch out for a furry, little, orange man.

All I have to do is dream

I dreamed last night that I was at my folks' home with everyone else from my family. No one was paying attention to me, which I found maddening, especially because I needed some laundry done. I can't do laundry at my folks'. The laundry room is inaccessible.

Accessibility was not the issue in my dream. I was living in my room upstairs. I remember taking a shower standing up and walking upright. But for some reason I felt I was being improperly neglected.

I am not embarrassed by that because dreams are weird.

Anyway, I was getting my clothes out of the dryer (someone had started doing them) when two family members started putting stuff from the washing machine to the dryer.

I yelled at them to stop and said, "Can't you let me do anything on my own?" Again, jerkiness is allowed in dreams.

Then I woke up and went a long way to convincing Dad and myself that I am not at all someone who should be living independently, let alone doing laundry.

I rolled out of bed but my foot slipped and I had to drag myself to my chair using the stripper pole. Then I had to re-situate myself several times to get the seat cushion underneath me. Then I struggled to lower the footrest. Finally, I was ready to get to the bathroom.

Then I started peeing.

I called to Dad and asked him to quickly bring me the urinal, which he did, and I used it. Then I headed to the bathroom where the door knocked the urinal off my lap. (A brief side note: I HATE DOORS.) Then I got in the shower and called out to Dad to bring me a dry wheelchair cushion and some soap.

I won't be doing laundry in the new house either; the laundry room is on the second floor.

Stranger in the same land

It hit me on Saturday as I was out in the Back Lot playing with Claren: We were trespassing.

Mom and her brothers sold most of the land in a deal that closed a few weeks ago. The land that did not sell has lots of trees and shrubs so it is not as friendly to wheelchairs and dogs that eat poop. (Well, it is really friendly to the poop eater in that she often finds a snack; it is not friendly to those that have to deal with her.)

Gram died more than three years ago, so it is time the land sold. And rest of the Back Lot is where we will build our house, my little sister, her family and I. It will be great, for sure.

But it is not built yet, or started, and I just feel like a trespasser.

Oh Holey night (for any bad guys)

In what can only be called a stunning PR gambit of galactic proportions, Darth Vader and the Empire have donated an AT-AT Walker to watch over the nativity this year. By helping defend against Herod's slaughter of the innocents, perhaps the Empire is hoping to put a kinder face on Darth Vader, who had his own slaughter-of-the-innocents issue with the little Jedi.

This is the fourth year of Matt's nativity, I believe, when toys fill in for the Nativity figures I don't have, which is everyone but the Big Three. (Here is last year's.) This year, though, most of my toys are in storage awaiting the new home next Christmas. So this year there'll be no Borg or Buffy, no Superman or Spirit. The AT-AT was too big to store easily. For various reasons a few other toys are at Mom and Dad's to choose from so without further ado, here is my nativity:

Obviously, there is the AT-AT, which provides firepower as well as shelter if it turns rainy. Joseph will probably need to keep an eye on it, though, to make sure it doesn't turn bad. If it does, it should not be too hard to trip. Those things are really cool-looking but look wobblier than I ... almost.

The Big Three are obvious but new to my nativity since mine is also in storage. I realize they are a little big and perhaps render the whole thing a little unlikely. I mean Joseph is almost as tall as the AT-AT, so I apologize for asking you to suspend your idea of reality.

Starting from the far right, there is Strongheart the Paladin and his trusty but wingless bronze dragon, among the last characters to avoid storage. We needed to glue the dragon's paw so he came to Mom and Dad's. My only fear hear is if the dragon eats some of the farm animals. Bronze dragons are, as everyone knows, lawful good, but they are carnivores. And a dragon dinner would cast a pall over things. "Hey, baby Jesus, nice swaddling clothes; don't mind the dead cow. Bronzey got hungry."

Professor X, in front, is almost a staple in my nativity, being the coolest guy in a wheelchair (sorry, Stephen Hawking but he is played by Patrick Stewart). I figure if some shepherd starts belly-aching because he had too much mead and wants to see some miracles, Prof. X can mind-smack him. The tiny version is the only one I kept out for the time at Mom and Dad's.

One of the few new-to-me toys is Iron Man, who came to me when a friend was getting rid of things. If the shepherds are too much trouble for Prof. X, he'll do some mind-smacking of his own ... with a repulsor blast or two.

The Penguin, also new to me, is there in case of rain. He has the umbrella anyway. Mom questioned his place in the nativity because he is so mean-looking. There is that, but he is obviously symbolic that the kingdom of God is open to all, even sinners. i guess the symbolism would work better if I had a prostitute action figure. HINT HINT.

The Shogun Warrior will shoot of his fist at the sign of any trouble. It might not be the most effective offensive tactic, but I doubt Herod, muggers or wise guys will stand a chance this year.