An unwanted intrusion

I was going to write about breakfast and how I took a sip of tea, which was too hot, and my lips, head and arm all convulsed, spilling tea all over and sending pieces of Pop-Tart on to the floor. But then a more interesting topic barged in: DEATH. Mine, of course.

I was crossing the street tonight across from my condo. It has two lanes in each way, and I was in a brightly lit intersection in a crosswalk with a big yellow dog. Not really inconspicuous.

Nevertheless, this jackass decided he had the right of way and pulled out of the condo parking lot rather quickly. I guess he thought he would beat me across the street even though he was making a left turn and I was in the damn intersection already.

I really don't know what he expected me to do. There was another car bearing down on me so I could not stop to let him speed on his merry way. Plus, let me say it again: I was in the goddammn crosswalk and I am in an effing wheelchair. I have the freaking right of way, fool.

So I kept going. He jerked up and swerved to try to go around me. He must have realized the other car was coming too fast for him to zip by, because he just stopped.

We both glared at each other. Well, I glared underneath my scarf and ski mask. He might have been glaring, too; who can see inside a car?

I almost wanted him to kill me so he would fry. Knowing my luck he'd just hurt me and leave me a shell of me and I'd have to do "The Diving Bell and the Butterfly" thing. But I'd get bored and just signal four-letter words over and over.

Thank God he missed me.

Time to choose a chair

I had forgotten how nice it is not to have to spend 10 minutes fiddling with the faucet to get the right shower temperature.

I got my shower fixed yesterday, and this morning I had time to shoot hot water on my legs in a fruitless effort to warm up my calves, time to find a business card I have needed all week and time to decide which chair to use.

I stayed in my power chair, the chair I have been using most of the month. I tell myself, and anyone who asks, that I am using it because it is cold. I have to touch less metal if I use the power chair. I also get out of the cold faster if I am in the power chair. I get everywhere faster in the power chair. Faster and easier.

But I hate it.

I don't get any exercise by using the power chair, for one. It is falling apart and looks crummy, too, although the new one, in fire engine red, is on order. Not that it is ever an option for me, either, but I can't go anywhere with anyone else. I mean the manual chair collapses and fits in someone's car easily.

Most of all, I think, is that it makes me feel more disabled. But it is easier and it conserves energy. And my nephew really likes it.

Death: Scary as hell?

There is one thing about death that scares me. And no, it isn't about going to hell. If Theresa of Avila can call God out after her cart falls in a stream, I think I have, if anything, been far too lenient with God.

What scares me is my death going unnoticed. I don't mean I am worried that I will lie on my bathroom floor for weeks before a neighbor smells something rotting. I know my family won't forget me.

But what about everyone else I know? What if they just don't notice that Matt has not emailed or blogged in a while?

Perhaps this is the reason I would never kill myself: I am worried that my friends might not know. But if I ever get really popular, I may have to do myself in. (Kidding, kidding. I'll never get really popular. HEE)

I am confused

My eldest nephew is interviewing at colleges right now for next year. He is never far from my thoughts, but today I was thinking a lot about him. You see, one of the guys I was friendlY with in college was buried today. He had a brain tumor.

It's more than the college thing that reminds me of S. When he was little, he came home from school and said to his mom, my sister, something like: You know how your throat hurts when you want to but are trying not to cry? He was watching "Harriet the Spy" and didn't want to tear up in front of his classmates, I guess.

My throat has been raw all day, and the tears still leaked out more than once. I don't fully understand why this death has hurt me so, but I know several reasons:

I forgot to take my antidepressants last night. First, I put it off because I did not have any food within reach and then Claren worried me with some crazy scratching and I forgot. I woke up with a splitting headache and figured out why as soon as I saw the cookies I meant to take with the antidepressants.

I knew I could not survive a day without my dope so I took some in the morning even though you aren't supposed to make up doses. I thought about calling in sick, but didn't want to because it was my own fault I felt bad. Plus, I figured with Advil I could get through work. I probably would have been right until I got the news about the guy from college.

Part of what made it bad is I didn't get the first two e-mails sent to me about his death and the service. I don't know why they did not come -- Yahoo mail is really slipping. If I had gotten them, I would have gone to the service. Attention must be paid to us all, or at least it should.

I have been to funerals of kids, parents who died early, older people who died late. They are all sad, but this death really hit me. I just break when I think how hard this must be for his family and his close friends. I don't think it is because it reminded me of my own mortality -- I am quite aware I could die any day -- so I am not sure what it is.

Oh, to be a young go-getter

While some of us sit around whining about various crap that Friedreich's ataxia brings, others actually do something.

I got an email this week asking me to promote on my blog the “Have a Heart — Give a Buck 4 FA Research" fundraiser. I'm doing it partly because the mom that sent the email seems to think my blog has some pull or reach.

A 16-year-old with FA started it for her birthday. She has a 30-year-old brother with FA. She sounds much more well-adjusted than I was in high school. Or now for that matter.

You want what?

I asked Mom today to get me some panty hose.

I don't think I am a transvestite although I do remember being jealous of my little sister's pantsuit that she wore in kindergarten. In my defense it probably reminded me of the outfits GI Joe or astronauts wore ... except it was red, had short sleeves and a collar.

The hose are for the bathroom, and no I don't want to hang them on the shower curtain rod to make my female visitors jealous. Mom and other relatives are the only female visitors. They'd just think I was weird, well, weirder.

I want to put my soap in the hose and tie one end to a grab bar so I am not continually fishing around for it. Like soap on a rope, but without the prison shower references.

Matt gets maudlin

"The Breakfast Club" came on last night as I was getting ready to go to bed. I could not stay up and watch it, no matter how harsh Judd Nelson is or how beguiling Ally Sheedy is (she had me when she makes it snow on her picture).

I just watched the opening credits, so I could hear "Don't you forget about me." I know it is a cheesy little song that appeals to high-schoolers, but I couldn't help it; Mom and I were just talking about that very same thing.

I had to work from home yesterday, which make explain some of my sappy "my life sucks" mindset. It is so lonely to work from home. I sit in my backroom, which gets no sun, and stare at a little laptop screen all day. And yesterday, it really was all day. A co-worker called in sick, so I had to fill in for him, too. Also, it was an icy, rainy mess outside, so that also left me feeling a wee bit enclosed because I was pretty stuck.

One of my friends works from home every Friday so she can stay up on Thursday to watch "Lost." I IM'd her yesterday that I hate it and told her why. She replied that she understands but likes to work from home herself.

Maybe I get lonely because I have a big family. My friend doesn't so maybe she is used to being alone. I also wonder if I use my family as a crutch not to make friends because I know my family will always be there.

My friend also has a lot of interaction outside the office, too, so that might be another reason working from home is not bad for her. I suspect she talks to non-family members on a regular basis.

I don't, but I don't give people a lot of time to check in with me, especially those at work. I go to them, in person, by IM or by e-mail. And I do have a few friends who do look in on me; maybe I should just stop this pity party.

But a little more. I came in from my walk with Claren last night, and my answering machine was blinking (yes, I really still have an answering machine, not voicemail). My immediate thought was: How cool would it be if that was not a family member but someone else calling to check on me.

It was my little sister checking in on me. I called Mom first to ask her if I should feel guilty that I wish people I wasn't related to called to check on me. No, I wish that, too, she said. She also said she didn't think I was using the family as a crutch, so I guess if I had no family I'd just be really freaking alone. I hope they know how important they are to me, even M. (HEE, there are more Ms in the family than any other letter).

Then Mom threw me a softball.

She said she thought I would cultivate relationships and get people calling me and call people myself if everything else didn't take so much energy. Preaching to the choir, Ma. I wanted to take a shower after work to wake up, but it is too hard.

The thing that bugs me is that I get nothing for the outlay of this energy, except this often-crummy half-life. Jesus says: "I have come that they may have life, and have it to the full." How can he even look at me? I am not going to call him a hypocrite, but …

I'm late

I ran late again this morning, mostly because of the water temperature issue. It didn't speed things up that I let the water run out of the faucet to get a little in the tub so I could soak my dainty rear. I just sat in it while I shaved and it is much less dangerous than certain family members are thinking.

It about kills me that I can't hurry up when I am running late. I can't say: Oh, I took longer in the shower, but I can shave precious seconds off my getting-ready time by running.

Of course, I could always do what the dumb fellow passenger does (10 minutes we waited for her today!): Just come out when I ready and screw the schedule.

Craptacular

Even if I hadn't run over some of Claren's poop at lunch, the day would have still been crappy. (HEE! At least I still have my rollicking sense of humor. I would say at least I have my health, but guess what? I don't. It's like 7Up and caffeine: Never had it, never will.)

It wasn't even totally my fault that I rolled in the poop. Claren really had to go, so I released her in an area where the path at work is about an inch above the land next to it. She went and I wheeled a little off the path to pick it up. I had to be careful because about 2 feet off the path is a really steep drop. I turned off my chair and bent down. This caused the chair to roll a little more off the path. At this point I was a little more worried about sliding down the steep drop, so I did not notice where my front wheel was until too late.

After I rearranged things and picked up the poop. I then went and scraped of my wheel and drove around in the grass to get the stinky off.

But as said it was a crappy day anyway. I ran late this morning because it took me 10 minutes to adjust the water for my shower. It is a very involved process that involves turning it all the way hot then down, then turning off the shower and just running water. It is getting worse, too, and the plumber my warranty company hired to fix it has been less than great.

Things were bad even before my ride to work, but they were nothing para-transit could not make worse. This time it wasn't even all the system's fault.

There is a woman who lives real close to me and works real close to where I work. She even goes in at a similar time. Sounds perfect, right? Well, except they drop her first every time even though they pick me up first. I am closer to a highway, so OK. The other problem is the woman: She comes out when her pickup is scheduled, not 15 minutes early as the service states.

I got to work then and had a busy morning, made busier because my boss is busy with non-day-to-day work so it was mostly me. I did my job fine, but I forgot I needed to do his job as well (he told me earlier). Or there was some dispute over how I did his job; I can't decide. Whichever, he wound up talking to me and sent out an email to our staff saying we slipped up on our main mission this morning. I don't like to slip up, whether it is my fault or not.

And it's cold, and I feel stressed, and my bottom hurts, so I should not sit on it. But hey, guess what again? I have to sit? Or go to bed. That's not a bad idea.

We are stardust ...

By the time we got to Woodstock, we weren't quite half a million strong, but there were a lot of dogs.

I went to Woodstock today for a puppy play. Woodstock, Va. It was pretty great. It was probably best that one of my friends called and asked if I wanted to go in about an hour. That way my brain did not have time to hem and haw about going, about accessibility, about the long ride or anything else. I just had time to shower and go.

My bad-egg dog had the time of her life. She played for pretty much three hours straight. She is the only dog in this group of dogs, mostly current or former service dogs and trainees, that barks when playing. And she does constantly. I occasionally get a little embarrassed at her joyous barks, but I remember that she is so quiet everywhere else. I have to forgive her because she is with me most of the time -- that's got to leave her with tons to get out of her system. Frankly, I am amazed that she hasn't taken up smoking or something.

I don't have to forgive her for brazenly taking a dip in the fish pool -- twice. The second time, though, I was watching and I think her canine compatriots were egging her on.

Of course, I do forgive her. Claren is probably the best thing that happened to me.

I sometimes am a little jealous of the other official service dog at these gatherings. He doesn't want to play; he just wants to be with his human partner. That would be me in a dog, latching on to one good friend.

Claren, however, has little use for her partner, me, at a puppy play -- there are dogs and balls to chase. I know she loves me, but I imagine she must have been a peppy high school cheerleader in another life. She thinks everyone wants to and should get to know her and her boundless energy.

I guess opposites really do attract.

Even though we didn't quite make it to Yasgur's farm, we are definitely golden.

Oh say can you wobble ...

I am thinking of asking my congressman to propose that Friedreich's ataxia be made the national disease.

It does not discriminate by race or sex, although I read that is rare among Africans and Asians. As long as you get two bad genes from your parents, though, you still win the effed-up life contest.

But I am not even thinking about FA's accessibility to everyone.

It is the way FA allows, encourages even, all your body parts to try to kill you. If that isn't a democratic disease worth celebrating like we do the bald eagle, I don't know what is.

If you name a body part, I will tell you of a nefarious plot to do me in, all of which so far have failed. Elbows: They get banged up on my chair and then I touch one somehow and wince. Wincing, of course, could unbalance me. But the Elbow Plot has been disarmed (HEE) by my seatbelt and tough-as-nails exterior, which allows me to ignore pain. (It's the interior that is as soft and vulnerable as a baby sea turtle just hatching.)

Last night my swallowing system made a run at me – twice; two of my shirts proudly gave their lives so I could live. It wasn't the coughing fits, I am used to them. So is everyone who knows me. Yesterday I started coughing so hard I spit a bunch of water on my desk. None of my nearby co-workers even bothered to look up. One who sits across the way did ask if I was OK. My 5-year-old niece also keeps a close eye when I cough. Well, unless her eyes are closed because she is laughing too hard. I really hope it is a nervous reaction or something; otherwise she is just mean.

I was on the floor brushing Claren and watching Psych last night when I took a sip of regular water (One of my rehab doctors recommended Thick-it, but c'mon! That just looks nasty). The coughing unbalanced me, and I fell, first on Claren, then on the cup of water. I squirmed to get out of the puddle of water and mostly succeeded. My shirtsleeve was wet, so I took my sweatshirt off and wiped up the rest of the water. Then I had Claren bring me a bottle of water using the Velma command – I keep the water right near my Velma action figure – and got resettled. I took a sip and was knocked over by more coughing, this time my long-sleeve T-shirt took the brunt, falling right into the pile of Claren hair that I had just brushed off her. Even after I got off as much hair as possible, I was still grizzly-esque (I tried to find someone to complete the phrase "I was still as hairy as …," but googling "hairy arms" gives you info on whether guys like gals with hairy arms).

My hope, then after all that, is to hear the National Anthem wind up like this: " O’er the land of the free, and the home of the FA."

Can't really means can't

The phrase "can't means won't" kept pounding through my head this morning.

A co-worker at another office wanted to dictate some stuff to me over the phone because her computer wasn't working right.

I had to tell her that I don't type fast and don't hear well so I really can't take dictation. It is a pretty crummy feeling to have to spell out your inabilities.

And not just once.

I had to find someone at my office who could take dictation and explain why I couldn't.

It doesn't matter that I am sure everyone believed me, even the woman at the other office who has never met me. And it doesn't matter that she got her computer fixed so no one had to take dictation.

I don't think I ever wished I could take dictation before.

My lunch stays together

I went into the lunch room today and almost threw up.

It wasn't bad food -- the smoke house club was quite tasty. Actually, it had nothing to do with food.

As I was waiting in line with my drink and sandwich on my lap, I felt something slipping slowly off my legs. I really hoped it was the plastic bottle of grapefruit juice because the sandwich was in one of those little plastic things that just clip shut.

No such luck.

My heart and stomach leaped into my mouth as I saw the plastic box cascade down my legs, flip over a few times and did not open.

I could not believe it. Of course, I needed a nap after that huge rush of adrenaline.

Long-winded response

In regard to my laughing: How are you not supposed to laugh at Lenten dinner readings?

I mean why would a horseman see a sparrow lying on his back and dismount to talk to it? Kick it into the bushes maybe. And the sparrow talks back?

What kind of drug-addled fairy tale is this? I think Mom is lucky I only laughed at the readings and did not turn on, tune in and drop out.

I looked and couldn't find the version we used to hear at dinner, but this one is close (at the very end). I actually wrote my own version for Mom a few years ago. I like mine better.

Make 'em laugh

Back when I was in school, I went through a Dave Barry period. He remains one of the few living authors I could pick out of a lineup. Not a crowd, you understand, just a lineup.

During that time, I checked Mid-life Confidential: The Rock Bottom Remainders Tour America with Three Chords and an Attitude out of the library (I actually used to use libraries! Actually, I recently dreamed I was walking around one.)

The Remainders are a bunch of authors who formed a rock band. The book features chapters by the Remainders about the band. The authors were Dave Barry, Tad Bartimus, Roy Blount Jr., Michael Dorris, Robert Fulghum, Kathi Kamen Goldmark, Matt Groening, Josh Kelly, Stephen King, Barbara Kingsolver, Greil Marcus, Dave Marsh, Ridley Pearson, Joel Selvin and Amy Tan. They had some pro musicians to help them. Al Kooper was the musical director, and Bruce Springsteen played with them once.

What struck me when I read it, other than Amy Tan with whip and leather for "These boots were made for walking," was that all the guys made it a point to tell a story about how they made Dave Barry laugh, as if that made them cool.

I can totally relate. If I make anyone laugh, I feel cool, at least less of a dorky loser.

I remember once I went around saying my sister had a parasite when she was pregnant. This made me laugh, which also makes me feel good. Everyone else found it funnier when my eldest brother pulled out this honkin' big dictionary at my folks' house and found that parasite is derived from the Greek word "parasitos," which means a person who eats at the table of another in return for providing interesting conversation. This, they decided, describes me to a T.

Yeah, it does, and I wish that could be my full-time job. Either that or a gigolo.

I like to wander around my office at lunch, stopping by friends' desks and making them smile or laugh or something. It makes me feel like I can still help people, even if I am not the person to call when you need a mover. I guess I just wish people came to me for help once or twice. It's hard to be a font of grace if you never get a chance to refill.

Still recovering

I think I am suffering some post-traumatic stress from the events of yesterday's blog.

I was OK for most of the day. Actually, I guess I was asleep for most of the day but was OK after that. Mom came over and brought my comic books.

Ever since it has gotten dark, though, I have felt oppressed and like crying. And my comics have not been too sad. Connor Hawke (Green Arrow's son) is in a world of hurt, and Buffy is doubting herself, but those did not do it.

It's not like I can cry easily. What do I have to cry over? Nothing new. I think I am about cried out when it comes to my disease and the betrayal and abandonment I blame my body and God for. (That just popped in there, Mom. really, I had not planned on mentioning God at all)

Claren hates tears, too. She looks worried even when I laugh so hard I cry.

It's time to try more comic therapy.

What a game

I was going to write about walking into posts or my similarity to the Rock Bottom Remainders, but instead, it's Friday night and time for America's favorite game show "What body part screwed you over worst today, Matt?" (Yeah, we have to focus group that name; it's a little wordy.)

Contestant No. 1, are you ready to play?

Well, heck yeah, Wink. (Wink Martindale. Chuck Woolery is my second choice.) I am Matt's legs, and if anyone deserves the title, it's me. I mean, I am the one that gave out on him when he was transferring to his chair from his couch. Plus, I mean who kept him on the floor by continually slipping? That was all me.

Just a cotton picking minute there, Wink. It was not all the legs. Sure, they suck, but why in the name of God is Matt still wearing those shoes? They have no traction and are the real reason why he looked like one of the Banana Splits with all the sliding. You got to give it up for me, Matt's bladder. I am the one that all of a sudden had to go and got worse and worse while he was on the floor. And did you see that arc? Matt looked like a damn Greek fountain there, well except he was lying on the ground.

Whoa, there, babe. You mention that beautiful arc? That was all me, Matt's brain. I am the one who had the brilliant idea to pee in a water bottle, which I still say was awesome. If the bottle was not three-quarters full before we started, it would have totally worked. It is not my fault he filled the bottle and then had more to do.


I really, really wish this was not true, but it is. Well except the part about the talking body parts and it's not North America's favorite game show. Ever hear of a little thing called Press Your Luck?

So what did I do? I dealt with it, like I always do.

I finally got into my chair and then the bathroom. I changed my clothes, going commando briefly since no shorts were handy. Then I put things in the wash, wiped up the floor, washed the floor with vinegar, put the rags in the wash and had dinner.

Surprisingly enough, there was minimal cursing. I did think about this comic strip one of my sisters emailed me.

How am I supposed to ask anyone to be friends with me? I don't want to live in my pee-soaked world; why would anyone else? It sure seems too much to ask anyone anyway.

My chair is embarrassing me

I got to my aqua-therapy appointment, and no one was there. Well, no one was in the office part.

I saw one therapist in the gym working with two high school kids. Then another came out of somewhere. But I still could not see Greg, and everyone seemed to just be ignoring me. I wheeled into the gym hoping someone would pay attention to me and I finally saw Greg with a patient, so I just backed out of the gym and waited for him.

He motioned me back in a bit, and the other two therapists started to make fun of me. Actually of my power chair. Hope you never have to sneak up on someone in that, said one. Yeah or go to surprise parties, said the other.

I told them I was just waiting for insurance to come through for a new chair. I ordered one last week, a Jazzy 600. I hope Sid from After the Fall is able to persuade my insurer to pay for it.

Colors are pretty limited: red, blue, champagne and black. I think I will order red, excuse me, candy-apple red. It also won't have the comfy seating seen in the link. I don't really want something I don't want to get out of. Neither do my therapists. We all agree that it is good I move around. It will also have a plate on the left side because I tilt left apparently. The seat cushion is also going to be overfilled on the left to help my sitting.

As I was waiting to get put in the pool, I watched one of the high school kids. He was skipping through what looked like a rope ladder laid on the ground. His feet were moving so fast I could not even follow them, and he needs therapy? My little laps around the edge of the pool suddenly seemed pretty wimpy.

Of course, it was still pretty dang tough.

I am not cruel to animals

As if staying home for the Super Bowl is not bad enough, I am now expecting a call or visit from the SPCA.

I felt OK today; the reason I stayed some was because I did not feel confident going to a place I cannot easily get to the bathroom.

I cannot begin to tell you how bad it feels to have an entire weekend ruined by a stupid pot pie, especially one that wouldn't hurt others. And it is not like I was neglectful. I checked the ingredients: no MSG. Something else is screwing with me, though.

How am I supposed to do anything with people in the undisabled world? People do mot regularly have accessible houses and bathrooms. As cool as my condo is, I don't really think I can just ask people to come here.

But enough about that; it is not a new problem. The SPCA? Now that's new.

I was out walking Claren during the second quarter, not that i had to. We had already done a lot of walking. I was just being nice to her. We were on our way home when Claren saw another dog and got excited. She even made a less-than-friendly bark, I think. The other dog owner stopped with her dog in the middle of the parking lot to see, I guess, whether my dog was a killer.

I backed my chair up a little and angled it so it was between Claren and the rest of the sidewalk, so the other person could walk by.

Normally, Claren is very nimble when it comes to staying out of reach of my tires. Not tonight, though. And I must have stopped on her foot or something, because she let out a long and pitiful yelp. Then I made her sit.

The other dog owner seemed to be bending over and hugging her dog to ward off the horror they had just witnessed. With them rooted to their spot, Claren and I walked past and into the condo development. Claren was quite attentive to me and not at all distracted by that other dog.

Claren was fine, of course, and for all you Claren fans, she totally got me back.

I have a laundry basket on wheels and it was in my living room tonight. I spilled some water and saw a towel in the basket, so I stretched out toward it to grab the towel. It was just out of reach. The basket has a tug on it for Claren to pull to help me get it to and from the laundry. I asked her to tug it to me now. Well, she did tug it all right, about three feet in the other direction.

Stupid pot pie

I know that being cured would not solve all my problems. I know that even folks with super-powers don't live perfect lives. Green Arrow recently got kidnapped on the day of his wedding to Black Canary, replaced by a doppleganger who tried to kill Black Canary on the wedding night. (Yes, I know. Green Arrow does not have super-powers.)

But I am sure that Oliver Queen (Green Arrow's identity) never had to worry about whether he can get in a friend's house or use his friend's bathroom.

I am supposed to go to my little sister's tomorrow to watch the Super Bowl and then spend the night at my folks' house because it is near my sister's, next door in fact.

I was willing to swallow my discomfort about going to a house that is not real accessible because if I went to only accessible houses, I would go to my parents and one brother's.

But then I had a digestive issue last night that I blame on a Boston Market pot pie. Now I am really unsure whether I want to go.

And it pisses me off.

It is not enough that I have a disease that get worse as I get older. It is not enough that I can't walk.

Goddamnit.

Out on the street

I am planning to live with one of my greatest childhood enemies: my little sister. And I am terrified.

I don't think she will beat me up, like she could. And her husband is great, even if he has X-Men #1 and didn't even know it was valuable until he saw my original X-Men toy set and was like: "Oh yeah, I have that comic." He hasn't even told me what other comics he has.

Her children are hilariously wonderful. They were referring to me as "w Honky" on the ride home from work last night. I am sure it was a term of endearment because my wheelchair beeps, not a slur because I am really white.

It isn't them at all.

We are just starting to plan design of a house with an in-law suite for me. It'll be such fun to live with a family. But what if we forget something, like the door to the bathroom or put the windows up high or some silly thing?

Or what if my good credit is not good enough and I ruin everything and we are all left homeless?

I know a new house won't solve all of my many problems, but what if it is not perfect? And it's my fault.