Saturday, April 30, 2011

Leave me and my dog alone

I love it when people help me; it is so great. EXCEPT when they ask if I need help, I decline, and they help anyway. It is even worse when they help my dog when I have asked them not to.

At the entrance to work, the badge reader that unlocks the main door is on the right of the door. The button to activate the automatic door is on the left. I have enough time to swipe my badge, then hustle over to the other side and hit the button, but there is an easier solution:

I ask Claren to push the button. Because I am not holding her leash, I often need to encourage her a lot to keep her focused. But she does it.

When I get to work, there is usually no one else outside. This is good. See, Claren loves an audience.

I do not mean that someone else makes her perform better. When a stranger is around, there are new sights to be seen, smells to be smelled, minds to control.

I saw a woman smoking when I got to the door the other day, but she was a ways off. So I went to the door, unlocked it and asked Claren to open it.

She dawdled. It's not terribly unusual, so I kept up a stream of encouraging words like "you can do it" and "that's it." (No, I am not very original, but Claren likes the classics.)

Then I heard a voice behind me: Want me to push it?

The smoker! Drat!

I said, "No, she'll get it." And I redoubled my encouragement because I knew that the part of Claren that's an evil genius was working her mojo on the smoker: wagging her tail, looking at the smoker with sad eyes.

Sure enough, Claren won, the smoker totally ignored me and opened the door.

I get that you want to help me. Thank you. But have you ever wondered how I feel that you ignored my wish? Or that your help makes it that much harder to train my dog?

Thursday, April 28, 2011

Why not?

I am convinced God exists. I am much less certain whether God cares or whether God has any kind of active role in our lives.

If God were anything like what I have often wished, I would not have had a day like today.

Someone, perhaps on his right hand or maybe his left, would have said, "Whoa, Dude. Matt has had a crap day. His mom should not have to do that. He has been humiliated enough for the day. Why not give him a fucking break?"

And then the compassionate God of my dreams would ease my struggles just a bit, take away some bad part of my day -- the digestive issues, the falling, the incontinence.

In the real world, with the absolutely baffling and seemingly cold God, the struggles multiply.

Monday, April 25, 2011

Aw crap, no more sugar

I got the results of the Test that dare not speak its name, and it was a mixed bag.

I have an overabundance of digestive enzymes, which is really good and apparently rare in folks with digestive issues, the nutritionist says.

Unfortunately, I also have none of the good bacteria Lactobacillus and a smattering of the fungus Candida. Apparently the combination is not so cool.

I am going to start taking probiotics to replace the Lactobacillus, and three days later a supplement to remove the Candida.

The worst thing is that Candida apparently likes sugar, meaning I need to cut my sugar. The nutritionist did not actually say "no sugar." She just said I should try to avoid anything that you add sugar to. But she also said anything Mom makes is OK.

Now, I just need to persuade Mom to put sugar in my tea every morning.

Sunday, April 24, 2011

I love 'Lamb'

Mom's Easter reading is The Risen Christ at Eastertimeby some big-time Bible scholar. Mine is pretty heavy, too: Lamb: The Gospel According to Biff, Christ's Childhood Pal by Christopher Moore.

Despite it cursing, bawdiness and general irreverence, I find Lamb quite loving and beautiful. It is fast becoming one of my favorite books.

Lamb's Joshua (Jesus) is perfect (obviously) but not at all arrogant about it. He doesn't lord it over anyone even though he is, really the lord. He is kind, naive, goofy, loving, funny (he knows Peter won't be able to walk on water but eggs him on as a practical joke). Best of all, he heals everyone. It isn't just one leper or a certain blind man. If you asked, you were cured. No questions asked.

The biblical Jesus, as I have written, confounds me. Lamb's Jesus is someone I find less confusing, more willing to love and follow. Plus, I could get Biff to help me out with women.

Friday, April 22, 2011

FNL confirms it: I am super-slow

I am so happy Friday Night Lights even if the East Dillon Lions are getting no respect.

Here, though, is the thing that sticks with me after tonight's episode: Julie bursts in on her roommate having a little naked dalliance in her loft bed with a guy. Julie quickly closes the door and talks on the phone for like 30 seconds to Tami, who, with all due respect to Buffy, may be the fictional character I most want to marry. At which point, formerly naked, dallying guy emerges from the room fully dressed. There were even buttons buttoned.

It takes me longer to just get out of bed, and that isn't even a loft.

Wednesday, April 20, 2011

No, I don't think Hitler was misunderstood

When the Enron boys were being arrested after they ran the company into the ground, I expressed some sympathy for whichever one of the bad guys was being perp-walked on TV at the time. This prompted one of my co-workers to say that if they ever committed a crime, they wanted me on the jury.

When Bernie Madoff was on trial, my sympathetic streak (all right, it is more like a 10-lane highway) popped up again. I told a friend how bad I felt because he just looked like someone's grandfather.

I do not in any way think these people should not have been punished. They ruined countless lives. I just felt bad for them, especially if they seem contrite.

Now I know I am my mother's son, and she feels sympathy for anyone. But my disability has certainly strengthened the sympathetic bones in my body.

Friedreich's ataxia has forced me to consider people's situations -- like why so-and-so didn't hold the door for me or whatever. That was mean, but ... There is almost always a but. Maybe they had a headache or something on their mind.

And while I usually hope and pray I would not make the same choices, maybe I appreciate their tough choices more.

Why bring this up? Because on this Spy Wednesday, I realized that I am growing more and more sympathetic to Judas, Jesus' betrayer.

I do not hold with betraying a friend to authorities who want to kill him or betraying of friends of any kind. But ...

Jesus confounds me now. Imagine being there and living with him. He makes loaves and fish feed thousands, but he doesn't heal everyone. He preaches "turn the other cheek," then goes ballistic on the money-changers in the temple. After some gal spends community money for perfume to anoint him, he defends it by saying the poor will always be around.

And I am always sympathetic to someone who kills himself. That is a choice I really hope I never make but one I think I do understand. I think I know what it is like to despair, to feel helpless and hopeless, to think not having to get up the next day would be a blessing. But ...

There's that "but" again. I know those feelings, but I don't give in to them. Actually, that is the worst and saddest thing about Judas: that he did.

Monday, April 18, 2011

Awesome accessibility

We already know that the Tank Chair is about the coolest wheelchair ever.

I have to say "about," though, because of an article Mom forwarded me from the Friedreich's Ataxia Parents Group: The 5 Most Incredible Stories of Pimped Out Wheelchairs by Cracked.

The article plays a little fast and loose with the term wheelchair -- a riding mower and a golf cart just aren't wheelchairs, Cracked folks. But I want two of the three actual wheelchairs in the article.

I don't really want the fire-breathing wheelchair. I am just not sure how practical it is to ride around with a front-mounted flamethrower. I have enough problems fitting under my desk as it is. I am pretty sure the facilities guys could not hook me up with a keyboard tray that works despite the bigass flamethrower. Of course, the flamethrower might make things more interesting when a non-wheelchair user takes my stall in the bathroom.

I do want the Tank Chair, although they now have the list price: $18,500. I do love, though, that you can buy one online. Just click "add to cart" and choose your color: red, green or blue.

I also want the Conquest Wheelchair Motorcycle. Technically, this is not a wheelchair either. It is a three-wheeled motorcycle. You drive your chair up a ramp into this vehicle, lock the chair in and ride.

Sure, I don't have a driver's license. For one of these, though, I'd get one, and then I could be part of Rolling Thunder in the Memorial Day parade and meet the cute blonde on the chopper.

Saturday, April 16, 2011

Does it get better?

Teen-agers have it ridiculously hard. No getting around that. And teens who are gay have an extra high hurdle.

But I saw a video the other day that almost made me jealous of such kids. Apple employees made a video for the It Gets Better Project telling kids that their lives will improve as they get older. Many people have made similar videos.

I lay in bed this morning for 20 minutes wondering if life gets better for me. I don't know that it will really.

I got the lab results from my physical and the blood was mostly OK. I have low Vitamin D, which seems likely in the winter since you get some from sunlight. And the vitamin from the nutritionist already is adding a bunch of vitamin D, so I am not worried.

The urinalysis found small amounts of blood in the urine, which isn't supposed to happen. My doctor thinks it was maybe some minor irritation or infection and isn't worried. I think I probably contaminated the specimen somehow because it is hard to get a clean urine specimen when you can't stand. I'l try again next week.

The problem is I am almost 40. I suspect that the wear and tear on my body is harder than that of others, and I worry that various body parts and systems are just going to slowly start falling apart.

I just there was a video like this for people with Friedreich's ataxia.

Friday, April 15, 2011


I wasn't hungry this afternoon when a friend offered me an Oreo. I just wanted to be done with the day and put the week's many frustrations behind me.

But when my friend offered and held out the cookie pack, I realized that it was just what I needed.

Not the Oreo (although it was tasty), just the kind gesture.

Wednesday, April 13, 2011

Things fall apart; the Matty cannot hold

I have mentioned before that I can deal with Friedreich's ataxia if everything is perfect, or at least a reasonable facsimile. Without that facsimile at least, there's trouble. My body becomes the deaf falcon. (Yeah, Matt can drag up metaphor from high school.)

My wheelchair charger stopped working last night. I am not blameless. It took a beating over the weekend when I drank a smoothie, took a nap, woke up really needing to get to the bathroom, and had to work my way through charger cords and stuff. But really? Sixty-five percent and counting.

Then I noticed that I had no towel when I went to shower this morning. I use a lot of towels because the shower chair blocks the curtain from doing a good job.

No problem, I thought. I'll just call Dad and ask him to get me one. I am not lazy; they are not easily accessible.

But the exhaust fan in the bathroom is so loud -- I did not want to holler over it, so I decided to grab a towel myself. I stood up, holding on, and reached to the towel shelf. I felt one, then my knees buckled.

I quickly recovered and stupidly decided to try again. This time I fell. I was holding on so I was unhurt, and on the good side the noise brought in Dad who helped me up and got the towel.

FA? Not as cool as I make it seem.

Monday, April 11, 2011

I'm sorry, Claren

I am a bad father so Claren is wearing an Elizabethan collar for the next two weeks.

Everyone said her eye is awful red. Just allergies, I replied. The vet last month wasn't worried either.

Maybe it started as allergies, but now she has a huge lesion on her eyeball. I could see it clearly when I looked. Oh, and her nose has some crusty growth on it, and her ears are irritated. Good job, Matt, way to care for your dog.

At least she is receiving treatment, which is better than if she was in the wild, leading a big pack of yellow labs. Claren would be the leader, not because she is an alpha dog but because everyone else got tired of her asking if she could be the leader "pleasepleaseplease. Be your best friend. Come on. Pleasepleaseplease."

But then disaster would strike. Claren injures her eye and goes blind. Some young tough named Stone Cold decides he doesn't want to be led by a half-blind dumb blonde, and he jumps Claren, who at first thinks they are just playing. So she has to fight, and either she dies or she is forced to kill Stone Cold, which turns her into a bitter, sad dog for the rest of her life.

Wow, she is lucky to be wearing that Elizabethan collar.

Friday, April 8, 2011

Full-service dog

Claren and I passed our re-certification test this evening at Tysons 2, the mall for the rich and fashionable. For one of the tests, the trainers find a little kid to pet the dogs and the dogs need to they stay sitting. Even the little kid was wearing a tuxedo. Granted, it was a T-shirt tux but still ...

We had a couple of flubs in the test, or I did. We went in the elevator and I should have asked the person holding it open to block the door with a hand. I didn't, though, and my little sister just used the button, a no-no in CCI.

I understand the thinking. Soon after I got Claren, I got on an elevator at work. She lagged behind because she used to hate elevators. The doors somehow closed on my arm with me on one side and Claren and most of my hand on the other. It didn't close all the way, but it didn't open either. I had to wait for someone to wander by and persuade the elevator to open. Now, I trust my chair to stop the doors in needed, but I ought to have asked my sister to block the door.

The other mishap was during the "get your leash" part of the test. You walk along, drop the leash, order your dog to get the leash and retrieve it from her.

I dropped the leash fine. But then I said "Get it," not "Get your leash." "Get it" tells Claren to get something on the floor like a pen or phone, not her leash -- that has a specific command. Like a good dog, then, Claren started looking around for something to pick up. I realized my error so I told her to get the leash and she did perfectly.

Then she showed her true comedian colors. I reached out my left hand for the leash and she went on my right side. I reached over on my right and she went onto my left side. Funny, funny.

We did well all in all. Most of the dogs looked a lot younger than the Wonder Dog although one was 8. One gal asked what my dog's name was and I told her Claren. She said, I thought so. I read your blog. Ha! Claren has a fan!

Thursday, April 7, 2011

A modest dip

I fell again this morning, but unlike Tuesday it did not wreck me, even though I did fall in the toilet.

I was standing at the toilet taking care of business when my right foot noticed an itch. It jerked and down I went -- first onto the toilet rim, then onto the floor. I wasn't hurt again, and I got Dad. My feet were on opposite sides of the toilet, so my plan was to pull myself up and Dad would move the chair under me.

Well, I pulled myself up, my feet slid along the bathroom floor and I wound up pulling myself onto the toilet rim again. I tried to pull myself back onto the chair, but my feet slid more and my shorts wound up taking a modest dip in the toilet.

Then I made it to the chair and shower and everything.

The big takeaway: I really need slippers that I can put on in bed and that will stay on. I have some Wicked Good slippers but they fall off when i get up. If I had slippers, my feet would be less likely to slip or to itch all of a sudden. Issue solved.

Tuesday, April 5, 2011

Slip sliding away

As happens every so often, I slid as I was getting out of bed, missed my chair and wound up crouched down between my bed and my chair. I wasn't hurt at all, but I was a bit stuck.

Maybe it happens because the bed is too high and my feet slide along the floor instead of gripping something. Maybe it is because the bed is too narrow to accommodate my momentum as I roll out of bed. Or maybe it is because I have fucking Friedreich's ataxia.

Anyway I was stuck. Even with Dad's help, it took like five minutes to get up and into my chair. Then came the hard part. I had no energy to do anything. All I wanted to do was slump down in my chair.

I forced myself to go to the bathroom (I am not stupid. I knew that was urgent). Then I could not bear the idea of transferring to the shower chair so I made myself shave. I don't have a big face, so that did not take long enough. Plus, I banged one of my knees on a pipe under the sink.

I managed finally to shower, without incident, and went to work.

I am just so weary. I don't think it is depression. I think I am just tired of having FA, of having to expend so much energy to get through the day.

Or maybe it was just a bad morning.

Sunday, April 3, 2011


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.

Blog Archive