Monday, May 31, 2010

Attention is paid

I went to the cemetery today, the first time I had gone on Memorial Day in years.

I said hi to all four of my grandparents and talked to Gram about the house we are building on the land she left us.

The cemetery is accessible but not very wheelchair-friendly, so I didn't go see the other people I knew there. It's OK, I know, but I enjoy cemeteries. They are peaceful, and the grave stones tell such good stories.

There is the one with the droids from Star Wars and another with a circus wagon. Others mention that the person fought for us in this war or that -- one of those in our cemetery is a Civil War vet (and is actually a Confederate, so I guess he wasn't fighting for us).

Even the dates make you think. The last time I was there -- last summer -- I noticed that one Gram was born and died on the first of a month. Her husband was born and died on the 12th. Mom and I looked around at the other graves, and it is not common but it is not that rare. All I know is I am watching out for 29th's.

My grandparents all have good spots. One set is right off the sidewalk so I see them easy. Gram Trott has three books on her stone because she loved books and kept a library in our church. Her husband technically may have a copyright violation on his side. He worked for years as a salesman for Travelers Insurance and the umbrella protects him now.

My other set of grandparents are near the main street past the cemetery so they can watch the traffic, and they are under a nice tree to provide shade. I blame Neil Gaiman and his Graveyard Book for the image I could not shake of my grandparents as ghosts sitting in lawn chairs, sipping drinks and watching traffic. They have symbols, too. Granddaddy has an old-time hand-plough that he really used (he was the only one I know born in the 1800s). Gram has some wheat stalks because she was a baker and gardener, too.

As we were leaving, I noticed this grave that said the husband was born in Vienna, Austria, and the wife in Dublin, Ireland. How great is that? Who knows what these people were like, but they were born indifferent countries, traveled to a third, found each other and got married. That must have been a neat story. I am glad I got to know a little of it.

Saturday, May 29, 2010

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.

Thursday, May 27, 2010

Heading Norse

I am left feeling like someone in a story either by Elie Wiesel or from one of Mom's dinner-time story books. It talks about these Jewish men in a concentration camp who held a trial and found God guilty. Then they went and prayed.

Now, I am NOT comparing my life to one in a concentration camp. Gene Weingarten says that anyone who tries to compare themselves or anything to the Holocaust or Nazis immediately loses respect.

But the idea that God is all we have to pray to -- even if we might think he is a real jerk.

I believe I will start following the Norse religion. That way if I get pissed at Odin, there is aways Thor, Frigga, Balder.

Wednesday, May 26, 2010


I don't like magic.

I think the last magic TV show I watched was "Breaking the Magicians' Code: Magic's Biggest Secrets Finally Revealed." That was probably because Mitch Pileggi hosted.

I am not sure when I became disenchanted. I remember watching Doug Henning levitate Sandy Duncan and being on the edge of my seat.

David Blaine and his kind of magicians did not help. They made me feel like they were putting one over on a gullible audience.

It is not that I need to know how they did something, but I become vastly uncomfortable when I cannot figure out how or why a trick happened. To borrow from St. Ignatius and probably many others, I want to know the Prime Mover behind the magic trick.

I think this is why God exhausts and angers me. I cannot figure it out -- why a good, loving God allows Friedreich's ataxia or evil or pain or sorrow. And I know I'll never figure God out. But unlike magic on TV, I can't turn God off.

Sunday, May 23, 2010

TV week: Not so Gleeful, but Locke gets a real chair

As I prepared to watch Glee on Hulu last night, I was expecting a good show. Buffy's Joss Whedon directed and Neil Patrick Harris guest stared. What's not to like?

How about the whole story arc involving Artie, the dude in a wheelchair played by an able-bodied actor?

You did get to see why studios choose people who can walk to pretend they use wheelchairs. It makes it possible to have dream sequences where the wheelchair guy stands up and dances to a remake of "Safety Dance."

In my dream, when I am dancing to the original "Safety Dance," I would have six-pack abs and look more like Brad Pitt, so they could still film it: Just get a cut Brad Pitt-look-a-like to stand in for me.

It also bugged me that no one mentioned wheelchair dancing. Everyone was focused on dancing as a two-leged activity when in fact wheelchair dancing is real. That Glee wiki page on Artie even says he's an "awesome wheelchair dancer." I guess that isn't real dancing, though. That same Wiki page also says one of the reasons "why we [don't love] Artie" is that "He can't kiss Tina in his wheelchair, she has to kiss him." What the fuck?

Finally, what kind of idiot tries to stand and use walking crutches for the first time ever with just his girlfriend to help?

The best thing about the episode is it led me to this blog.

On the flip side, the people at Lost finally gave John Locke a real wheelchair. I know he is played by another able-bodied actor, but even he must have been glad to exchange the goofy and heavy hospital-style wheelchair for one that wheelchair users use.

Saturday, May 22, 2010

I don't even mind Jar Jar Binks

I was going to write something tonight about how different it will be to live with a family again when I move into my new house. Mostly, I know it will be awesome, but doubtlessly some challenges will emerge.

Then I started watching Return of the Jedi. Yesterday was the 30th anniversary of The Empire Strikes Back. At first I was flipping between that and Office Space, but then I just had to leave Jedi on.

It is hip to mock Mark Hamill as wooden and decry the Ewoks as a stupid attempt to raise the cute level. OK, given that we are talking about Star Wars, maybe it is not hip.

But how can you not get goose bumps when Luke tells Jabba's majordomo, Bib Fortuna: "You will take me to Jabba now" and Bib does? How can you not tear up a bit when two Ewoks are hit by an explosion during the fight on Endor and only one lives?

I feel bad for the critics who grew up and forgot the wonders they experienced as kids.

Wednesday, May 19, 2010

Awake but not alive

Back when I was considering anti-depressants, my counselor said my brain was tired of being tired and coping. Her hope was that that medicine would get my brain back to a level playing field.

I have been on various happy pills for about 10 years now, and while I can't say they haven't helped me in some way, I am still so tired. I nap every afternoon and would sleep till noon if I could.

I know everyone is tired – new parents feeding a newborn, whoever – but I don't really recall a moment when I wasn't tired.

Monday, May 17, 2010

Where is that fountain of youth?

I have been reading the month's comic books, and while I haven't got to the best – Echo, Green Lantern – I have been a little disappointed.

And earlier today, a woman got in the elevator and said to me: You're too young to have all that gray hair.

Am I getting old?

I also got a new intern today who is a senior in college, and looks like a kid.

Dang, dang, dang.

I know I am aging. The devil isn't interested in buying my soul, so it is to be expected, I guess.

At swimming I see parents with adult children who are disabled and are older than Mom and Dad, and I don't want to be like that. I know I am already, but as long as I read comics and watch cartoons and wear my hair short enough to hide the gray, I can fool myself.

Who wants to be a tether to people you love even if they don't mind?

Friday, May 14, 2010

Oh fine, people do not suck

One day this week, I left my desk to use the bathroom, not realizing I'd have to struggle through crowds and other crap.

As I left my desk, I knocked off a bag and my TV remote, and the batteries exploded out of it.

I said to Claren we'd get it all when we got back, although I don't really like her to get batteries.

But when we returned, a co- worker was crouched down picking it all up for me. She even got down on her knees to hunt for, and find, the battery cover. Then she put the batteries back in and when back to her desk.

Thursday, May 13, 2010

Are you sure you want to read this?

A friend from work recently accused me of running “a secret blog." She was joking (I assume). It was a conversation via IM so I guess she could have been serious.

I told her that I need a place to curse and act out, but the blog isn't really secret. I would not mind if everyone read it. It would give me a bully pulpit.

I am not real sure how to bring it up, for one thing. But to be honest, I can't imagine that my co-workers all want to read about the crap that goes into having Friedreich's ataxia.

Take this week, for instance: At least 35% of the times that I have gone to a men's room at work, the wheelchair stall has been either occupied by a non-wheelchair user or dirty. The dirty in question include bodily fluids and newspapers covering the floor and hanging on the goddamn grab bars that I need to grab to keep from falling.

I see the folks I work with, so I know they are intelligent adults, but in the bathroom some apparently revert to childhood.

As least I am getting better at reacting. I went into the men's room today, saw six empty stalls that I cannot use and one wheelchair stall that was occupied by a non-wheelchair user. I turned around and said to Claren as we were leaving “Un-fucking-believable.” I am sure the abuser did not hear me, but one of these days, he will.

Better yet, take last night, as another for instance: I woke up about 2, had to go to the bathroom and did not get everything lined up with the urinal. I tried several alternatives: pulling up the covers, putting on sleeping pants, going commando in said sleeping pants, but in the end I had to take a shower. I figured I better alert Mom and Dad or they'd hear the water and be freaked out.

I got into the shower OK, wrestled with the nozzle, lost, shot myself in the face twice, then washed and reached for my towel. It wasn't there, and towels are not a convinient thing to reach, so I got out of the shower soaking and managed to grab a few washcloths, which dried the brunt of me, and then I got a towel.

I finally managed not to leap out of my chair when I heard Mom outside the door. She had gotten up to clean my bed so I could go back to sleep, which I did.

See! I mean, sure I have plenty of hilarious escapades and humorous asides, but I am not sure I want to read about the crap that goes into having Friedreich's ataxia.

I have to write about it, though.

All through the shit of last night, I didn't despair or cry or even want to. I just thought: OK, here is what I will write ...

Why write something public (even if it is sort of secret)? Maybe it'll help someone. Maybe they'll see that their experiences with FA aren't unique. Maybe Mrs. Gates will read it and say, "Oh, that Matt, he deserves millions of dollars. Write him a check, Bill dear."

In the end, that doesn't matter. I write because that is what I do. It keeps me sane and alive, and hopefully not too bitter, in the face off a really awful disease.

Wednesday, May 12, 2010

Telling people I don't hear well

The wheelchair clues people in that I have mobility issues, but I am thinking I need something for my hearing.

I went for a walk today at work with Claren, and I asked a few people if they wanted to join us. Two did, which means I mostly heard neither one.

I started to talk to Claren on the walk, not because I was bored with them, but I just could not hear them.

I know I can't hear well and hearing aids just amplify sound -- they can't really make it clearer. I didn't need the audiology appointment last week to tell me that. And one on one, I can keep up or ask people to repeat as needed. But I would need two people to repeat the whole conversation and this time to talk loudly and facing me.

Maybe the problem is I assume that most people I talk to a lot know I hear poorly. I wonder.

I don't really like telling people, though, about another failing.

And I am not getting one of those ear horns.

Sunday, May 9, 2010

Happy Mothers' Day

I had intended to write about how I tend to bring out the mother in women, whether it is my niece being "as proud as a mother hen" at my talk to her class or friends fixing my coat collar at work.

I realize that it might just be that I attribute nice things done to me by a woman as maternal, which is odd.

But I never got around to writing.

It is, however, nothing new really. Here is something I wrote in 1995, and it is quite similar although I suggested then that it was a sisterly, not maternal, instinct.

The most troubling aspect of this '95 essay is that I am now the older man I was then competing against and the older set I mention is within my sight. Add 15 years to the numbers below. Oh, and I got the cute puppy – no help.

Happy Mothers' Day to all my moms.

I read a story today that more and more women are beginning to date younger men, and it gave a list of reasons. Evening up life expectancies, sexual peaks, etc. Then there major reason: Younger men are more sensitive than older guys. In other words, I should be the man.

The jokes about becoming a gigolo may turn to fact. I am more sensitive than most guys my age, so I must be doubly more sensitive than older guys, so ...

But I’m not turning anyone away at the door, and that doesn’t mean I am dating handfuls of women. No one is coming to my door to be turned away.

I do have a different effect on women depending on their age. The older set, say 50 or so and up, tends to see me as a grandson or son. Generally, these women will point things out for me and will appreciate me because I am polite and respectful. This is great. I like to earn the appreciation of my elders.

The other effect is more troubling. Women, 20-35, tend to view me as their little brother. My age is insignificant. I need looking after to make sure everything goes OK. If I could find one young lady who thinks of me not as a little brother but as a tantalizing tower of testosterone or at least as a guy, then the phenomenon would be perfect. My significant other would not have to worry A) about me getting into trouble because all my big sisters would be looking out for me, and B) about having an affair because I’m not into incest.

But is this a fault of my perception? Has having two older sisters and one younger one who like to make sure I’m safe spoiled my outlook on women? Do some women look at me -- their eyes hot with a seething, swirling passion -- and have their sensuous glance met with the look of a little brother? Then all of a sudden, these women think, “My god, what am I doing? I am make eyes at my little brother. What kind of sicko am I?”

So not only do I lose a potential significant other but I drive them into therapy for what they decide are impure thoughts. This of course would drive the therapist insane because there would be no impurity. But if it was a female doctor, my “sister” could bring me in, and after I met the therapist, she would look at her patient and say, “You were thinking of him that way. How could you? He’s so adorable. Matt, do you want some milk and cookies?”

A roommate and I once talked about borrowing my then-3-year-old nephew and a puppy and walking with them around college. We were certain babes would flock to these cute things and then turn to us as the protectors of the cute things.

Maybe I should mention my adorability to my single friends. I’m cheaper than a puppy.

Friday, May 7, 2010

What did you say?

I think all you need to know about my hearing test today is included in this brief conversation after a test in which I tried to discern and repeat a word said into my earphones while background noise was playing:

Audiologist: OK, that was tough.
Me: Did it show?
Audiologist: You got one right.

That's right. My discernment (a cool hearing term) is about 10% in my left ear when there is background noise, which includes other conversations, random noises, internal body sounds, etc. My right hear discerns 30%.

Without background noise it is about 60%, and that does not include ability to read lips or get context, so I survive.

I could get hearing aids, but they amplify sound, not discernment. There is not really anything for someone like me, whose hearing is not good but not awful.

Thursday, May 6, 2010

Flaky vet

As she came in to the room, the vet said, I met your dad in the waiting room. This struck me as a little odd, although not that odd if you know Dad.

OK, I said and we got to the business of the appointment: Claren's nasty nose. Gram used to sunburn on her back and you always wanted – and some granddaughters did – to peel it for her. That is how Claren's nose looks. The nurse said she wanted to peel it for Claren. It does not seem to bother her, but it is flaky and gross.

The vet, who is not the one I regularly see, was not sure what was wrong but wanted to use a steroid pill to try to heal it. I kept telling her that steroids resulted in bloody diarrhea and the worst health crisis Claren has had.

Finally, we agreed to just try a different topical lotion and to recheck her in two weeks.

The vet then held the door open while I went out into the waiting room. She followed me and proceeded to sit down next to Dad and tell him everything we were doing.

I still don't know what on earth would posses this woman to assume that she needed to fill someone else in on my dog. I can only assume it was the wheelchair.

This vet, though, knows about disabilities firsthand. When we first met last summer, she asked why I was in a chair and told me she had multiple sclerosis.

She did not mean to be rude, I am sure, so it is not like I could berate her.

It just made me feel so small.

Wednesday, May 5, 2010

You'll be the coolest ...

That is what my niece's teacher said anyway when I told her I wore my Flash T-shirt just for the kids.

I was doing a little talk on service dogs, but Mrs. L said that because they are first-graders, the questions could be about anything.

The questions, though, were quite on-target. I did get asked how I go up and down stairs, but other than that, pretty good and basic stuff: How old, what does she eat, can she do this or that. It was the first service dog talk I have given where someone didn't ask, does she sleep in your bed? So I've got no beef with the kids.

The big hit was when Claren turned off the lights. Someone asked if she could and while she can we had not tried in several years. Claren was up to it, of course. The hardest part was maneuvering into place so she could see the lights. When she got the switch, they cheered.

My niece must have told them no petting so no one asked, but they did ask if they could shake hands and so that was the last thing.

It was fun. If I could talk about Claren full time, I would.

My sister said her daughter was as proud as a mother hen. I am not sure why some of my nieces assume they are my mother but they do.

Here is the speech:

Hi, my name is Matt, and I am Katherine's uncle.

Because my body does not work like yours, I use of special tools to help me. I use a wheelchair to get around. I have a big pole next to my bed to help me get into and out of bed.

But the best tool I have is my service dog Claren.

I got Claren six years ago when most of you were little babies. She is from a group called CCI, which stands for Canine Companions for Independence.

They are in New York so I went up there for two weeks to learn how to take care of her.

Since then, she has gone everywhere with me. I take her to work, to doctors' office, to the dentist.

I take her with me because I am never sure when I will need her. If I drop my cellphone, I can just ask Claren to get it.

She does the hard work of picking up the phone, but we are a team and it is my job to encourage her to get it. I don't want her to get bored.

You all actually have something in common with Claren. You carry your lunch boxes to school every day, right? Well, she carries my lunch bag to work every day.

Her favorite game is tug of war, so she likes to help me pull my shirt or socks or gloves. I'm not taking my shoes off but I brought one of my gloves.

If I put something she can tug on a door or cabinet or even the refrigerator, she is also good at opening them.

She also does all the things dogs do like sit and down and roll.

One of the hardest things about having a service dog is that they are so cute and helpful that everyone wants to pet them. But when other people pet Claren, it actually makes her job harder. Claren works really hard to pay attention to me so when people pet her it distracts her. That's why you aren't supposed to pet service dogs.

I am lucky, in a lot of ways. I do get to pet her. And i get to tell her our favorite command: lap.


Tuesday, May 4, 2010

I don't feel so grown-up

I wonder if, when I move to the new house, I will still feel like John Hinckley.

Let me explain, quickly, so the Secret Service doesn't raid Mom and Dad's.

I would not hurt anyone.

But I was reading a Washington Post profile of Reagan's would-be assassin. It described him as “a kid on perpetual spring break.”

I am not saying I am John Hinckley 2. I am peaceable and don't have an unhealthy fixation on Jodie Foster. My obsession with Buffy the Vampire Slayer is totally cool, by the way.

But the spring break tag is how I feel a lot, especially on a week like this when I am off.

For my job, I read stories and play on the computer all day. I do that when I am home.

Most of my expenses are for comics or things I will consume. I save a lot for retirement, but that's for me – or my little sister if I kick it early.

My latest expenditure plan – obviously not until after the house it built and I get settled financially – but my plan: Sponsor a little league team, either as Matt's or the Good Kind of Bitter. I would not be doing it to help the kids but because it would make me laugh to see Matt's Orioles or the Good Kind of Bitter Blue Jays.

I asked Mom what I should wear tomorrow when I go talk to my niece's first-grade class about service dogs. Do you want to present yourself as an adult or one of the kids, she said.

I am wearing shorts and my Flash T-shirt. And my spring break continues.

Monday, May 3, 2010

Miles to go

My little sister spent a good chunk of the afternoon at the hospital.

She and another friend went to sit with a third friend whose husband was having exploratory surgery. Apparently, he is fine, which is awesome.

The whole episode shows me that when it comes to having good friends, I am in the rookie leagues. If that.

Saturday, May 1, 2010

Am I my sister's keeper? I guess so

I was in the shower this morning when I heard a little voice asking me where Mom was.

I knew where my mom was and told my niece, but she asked again so I answered again.

Then I heard the bathroom door creak open and I pulled the shower curtain back enough to see my niece, who will be 7 in a few weeks.

With her left hand, she was simultaneously trying to pull back the curtain and shield her eyes so she wouldn't see my naked self. She was also crying.

“I can't find my mom,” she told me, “and I'm really upset.”

I said OK, I'll come right out and find her, turning off the water. So what if there was still soap in my hair?

The hardest part was figuring out what to do next. I knew my little sister was around and I also knew that she and her cellphone are joined at the hip, so I wasn't worried about finding her. But I normally I dry off before getting out of the shower. My niece might have called 911 by then, though, I reasoned, so I just plopped my wet self down on my chair and put my towel over me. I didn't even dry off my glasses.

I then went out to give my niece a hug, tell her the world was not over and find her mom.

She wasn't there, which seemed odd, so I called my sister and left a message on her cellphone. Then, because I was sure she was within shouting distance, I called her name.

She came right over and apologized because I did not hear the “I've got her, Matt,” which followed the weepy shower interruption.

I think I need to start locking the bathroom door.

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