Sunday, June 29, 2008

No colossal medicine cabinet misunderstanding

You know that old sitcom staple – a date looks in your medicine cabinet and discovers like fungicide, only it turns out to be for the cat and everyone has a hearty chucky after.

• I don't have to worry about that here at Mom and Dad's. For several reasons:
• I am not bringing dates to Mom and Dad's, or anywhere else.
• I don't have a cat with fungus and certainly don't keep medicines for Claren (also fungus-free) in the medicine closet.

The imaginary date would not have to open anything. My medicine cabinet is a see-thru shoe bag hanging on the wall.

So without much effort you can see this cream or that bandage. I guess I should be embarrassed, but who cares what you see? You want to see more, just ask.

The other week I was telling my occupational therapist that I was having trouble pulling my pants up. It has been a problem for years. I pull up one side, let go and reach for the other side and the first side falls down. I guess I don't have child-bearing hips to hold the first side up.

We went into the bathroom to practice the pants thing and I thought she would give me some pants to pull up over my pants or something. No, I was just had to drop trou and then pull them up. Good thing I did not go commando that day.

I was quite glad, of course. I mean a second layer of pants would not have worked as well, and it was refreshing (No, I do not mean there was a nice breeze in the room that swept up my boxers). It is refreshing to deal with someone who faces my problems in such a matter-of-fact way. Most of my doctors and therapists have. I am lucky that I have such great people and I am not embarrassed about sucking up like that either.

Saturday, June 28, 2008

I am definitely too cool to be forgotten

I just finished Too Cool to Be Forgotten by Alex Robinson. A friend of mine raved about the graphic novel in her blog and then she offered to let me read it.

"It follows a middle-aged guy who's accidentally transported back to his high school in 1985" and what he does there, she wrote. She left out the surprise ending in her review. No spoilers from her (There will be spoilers here). It might have been good to know the basic premise, though, before I started reading the book. The ending turned an easy Saturday read in something tense and nearly-tear-filled. For her own good she should have warned me. Does she want tear-stained pages?

Throughout the book, there are vague references to trouble at home and with his dad. Then there is this sentence as the last chapter starts: "i always remembered my dad as being sort of klutzy ..." Oh, crap.

In my friend's defense, most people don't know why I use a chair, and I guess I can look as it as kind of cool that she thought nothing of giving me a book that contains sentiments like the above or this: "It's a horrible, horrible disease for many reasons, but one of the cruelest is that usually, your mind, is unaffected. It's your body which gives out ... betrays you..."

No, the dad does not have Friedreich's ataxia; he has ALS. He dies on July 29, my birthday. The time travel allows the son to say a proper goodbye and tell his dad how angry he is at him for dying. It is good, just took a little more out of me than I expected.

Now, I have to figure out what to tell my friend on Monday.

Friday, June 27, 2008

Buffy doesn't give you bad dreams

My speech therapist seems like quite a wonderful person -- she even is buying me some gum just so I don't have to trouble myself -- but she is sadly not the gal for me.

One of my problems is that I run out of breath and trail off at the end of sentences. The way to fix this, she says, is to speak in short phrases, like three to five words, and take a breath after every short phrase. I read some things to her on Thursday, and she said they sounded great. I thought it sounded a little staccato and robotic, but I trust the speech professional.

The next step is to try to speak extemporaneously in short phrases, so she asked me to name a few interests. She will find some essays on my interests, and next week I will read the essays and then try to tell the essays back to her in my own words, which hopefully will be in short phrases.

I told her baseball and comic books, which she wrote down, but then she asked for a third interest. I said Buffy.

After a guffaw, she said: Are you serious? Is that show even still on?

I told her it wasn't still on but it was still awesome.

She replied: I have to tell you. I can't even watch the ads for horror movies and those kind of shows. They get me so worked up. When the ads would come on, I'd run to the TV to shut it off.

My first thought was why doesn't she have a TV with a remote. That would make her life easier. Then I thought of my eldest brother who once got a stomach ache from watching The Commish.

I gave her another topic. I wouldn't want to get her all worked up. She told me she wouldn't' sleep for like two weeks after a speech about Buffy. I am sure she was kidding, but she is buying me gum after all.

Wednesday, June 25, 2008

A case for God or Buffy

One problem with reading magazines that are old is that you read about something that has already happened. Or you at least do not have time to dawdle.

I read an April America magazine that talked about an essay contest asking people to make a case for God. The winner got $3,000 so I was down with that. I wrote the essay over and over in my head and then sat down this week to write it out. Only then did I notice that the deadline was last week.

Here it is, though, for your amusement:

I have Friedriech's ataxia, a degenerative neurological condition. I pray till I am hoarse to be cured. I cannot stand stand anymore, and my body daily bears the cuts and bruises of any number of falls.

I plead with God to not get worse. I have recently begun using a motorized wheelchair most days, the latest in a line of adaptive equipment from cane to walker to manual chair. In other words, I am getting worse.

But never, even on my darkest, most lonesome and anguished days, have I doubted that God existed.

God is not, like an atheist co-worker insisted, just some lie I tell myself to make life easier. I never understood how it makes life easier and more palatable to know that an omnipotent, loving being won't heal you, won't even, on many days, seem to hear you.

And my mind is not in the habit of telling me sweet little lies to make me feel better. I am, unfortunately, too practical, although I do believe Buffy the Vampire Slayer is real and she is crushing on me mightily.

i don't why I am certain God exists. I like some of Thomas Aquinas' proofs (like the prime mover). But it just makes sense to me. And I trust my mind. My body fails me on a regular basis, but my mind? It's been pretty reliable.

This does not mean that I like God. God, how God makes me mad! Most of my prayers are angry yells nowadays. But at least we're talking, I guess. Maybe if Buffy shows up at my door, I'll become an atheist.

Sunday, June 22, 2008

Rotten ride

My legs are failing me. Whether it is from years of misuse, like jumping off couches on to my knees, or from Freidriech's ataxia or disuse, I think they have just about had it. And I am just so angry about it.

I don't ask for much ... No, I do ask for much, I know. I just don't expect much to come from all my asking.

But I don't want to get worse. I have pleaded for that little nugget: just fucked, not really fucked.

It's happening, though. I went for a ride on my trike tonight and I could hardly make my legs pedal in circles. It wasn't that it was too high a gear or something. They just didn't work.

Mom said maybe we should look into a handcycle, but my arms get enough exercise. My legs need more, but they can't get it.

My transfers are worse, too. Instead of sliding straight from wheelchair to other seat and vice versa, it is more like a "U." I slide off one seat, then my butt falls till it is on my ankles, then I raise to my chair.

I hope I shrug this off and feel better tomorrow. I haven't ridden my trike in a while. Maybe I just need to reprogram my legs. It has just been a rotten weekend.

I started feeling rotten Friday because I realized that most of my friends are co-workers that I won't see till Monday. Friday night was Wii-filledf fun. Then on Saturday, I worked all day setting up a website for someone who decided they didn't like it after they told me just what they wanted. I spent all day Sunday mad about this, and then came the bike ride.

Wednesday, June 18, 2008

Sitting a spell

I sat in the shower for a while after I had finished showering.

It wasn't because it was a little chilly this morning, which it was, and I was letting the water warm me up. The water wasn't even on. One of the things I have learned about the new shower at Mom and Dad's is if I take a nice long and luxurious shower, it gets so humid in the bathroom that I can't dry off.

No, I just sat there because I was tired of falling.

I fell when I got out of bed in the middle of the night. I went to get up to go to the bathroom and kind of rolled out a little fast. I almost got back in my chair, then, but my legs just gave out at the last minute, and I had to call Mom and Dad for help. They got me in my chair, but we left a bunch of my skin scraped off on the bed board.

Then I fell in the shower. I leaned forward to wash my feet and my body just kept going. My head stopped me, and I was holding on still, but my feet were under the chair and the other hand was on the ground. I knew I was toast so I just picked up my hand and slid to the floor.

I wish I could stop falling.

Monday, June 16, 2008

Comics should be easy

I am faced with a tough choice tonight after my blogging: Do I read my individual comics or do I read the trade paperbacks a friend loaned me?

It is hardly a dilemma, of course, and the truth of the matter is I will read both, but I always trip up on the idea of trades or comics. As usual, Friedreich's ataxia plays a role.

Trade paperbacks are collections of comic books. Usually, one story arc collected into one bigger book. They are cheaper on a per-comic basis and I find them easier to read, especially re-read. There are comic books from the 1980s I have but have never read more than once. All of my trades are pretty well-worn. Some are just falling apart.

But there is something special about reading a single issue. I like it and wish it wasn't so hard to re-read. I blame the FA.

Friday, June 13, 2008

Be the chicken and more

Back in the fine old days when we had chickens, I remember watch/ing Bruce Morton or Kirby or one of the other roosters drink water out of the bowl cut out of milk jug. He bent down and drank, then raised his beak skyward and swallowed.

This memory came drifting back to me through the allergy- or cold-induced fog I have been in most of this week because on Monday I learned that I should drink like a chicken ... sort of.

As everyone who knows me or anyone with Friedreich's ataxia knows, I cough a lot. At work no one even bats an eye anymore when I start violently hacking.

I met Monday with a speech therapist who told me that I could perhaps solve some of my coughing issues by making drinking two separate steps: taking liquid into my mouth, then swallowing it. She also told me that if I bent my head down to my chest, I would make it easier for liquid to go in the right pipe. granted, it is the opposite of chickens really, but I have mucus clouds in my brain.

She also said I had loudness in my lungs and she would show me how to use it. She agreed it takes more energy to speak loudly but said it actually saves energy because when you talk softly people ask you to repeat it and then you speak loudly anyway. Made sense.

Then we worked on how I always run out of breath when talking. The key, she said, is to break your words up into like three- or four-word phrases. It is tough to do, but I liked this idea, too. She was good.

Here is what else happened this week:

  • Another owner in my development read my towing post and said she tows right away, too. She said she tried leaving notes but too often got nasty notes back.
  • I have foreseen my death. It will come at the wheels of a biker who tries to shoot past me on the bike trail without warning when we are crossing the street. I have decided to not go gently. I am going to start berating every biker who tears past me in a loud voice as a "GODDAMNED SON OF A BITCH." This is a goal actually; it may take some working-up-to.
  • A friend did not lean on me with bad news, but shared good news, which is better, It is much easier to be funny in the face of good news.

Saturday, June 7, 2008

I had fun, even though I didn't hear a lot

I am torn: Do I talk about my shower this morning, the first in my parents' new accessible shower, or about my reunion later in the day? Probably both, I guess, and I'll go in chronological order.

It took me a bit to figure how to get hot water. You pull the handle out to turn it on, and twist it to set the water temperature. It was fine then. There are adjustments we need to make, like everything else in life, but it will be fine.

I rode with a friend of mine from school. She is like the sister I never had, you know, nice to me. (KIDDING!) I did tell her it is pretty awesome to have a non-relative put up with me and even seem to enjoy it.

We wound up just going for a reunion at the college newspaper where we both worked. Not surprising, all but a handful of my friends were paper people. I had to get a recommendation once from someone outside the paper who knew me. I could think of no one. Finally, my roommate got a friend of his who I did at least know to write one punching up my thoughtfulness.

It was nice to see the group that came, some of whom I had not seen in 15 years. They are kind people, all of them. It certainly wasn't easy. The worst thing is to be in a group conversation or try to be, when in a wheelchair. I can crane my neck to join, but my neck does not stretch far. And I still can't hear. I just get a sore neck. And even when I am craning, I am still staring into guys' and gals' chests. I don't want to beat up own reunion.

But I won't dwell on that now; instead I will just say I am lucky to know these people.

Tuesday, June 3, 2008

A pyramid scheme of health

My banker thinks i need to try something called stem cell enhancers.

I wish I could say that it was out of the goodness of her heart, but it seems that the product is part of a multi-level marketing program like Amway. In the company's FAQ for why the hell they use this kind of sales program. Well, stem cell enhancers are a “new paradigm” and the “power of networking offers a unique opportunity to generate awareness and educate people about this new paradigm.” You could almost win Business Meeting Bingo with that one sentence.

It may also be because without actual relationships or networks, no one would have anything to do with a freaky supplement (just a supplement, that's key) made out of algae.

If it were not a supplement, the FDA would regulate their asses. But it is a supplement so you can say it does anything, kind of like coral calcium. Who believes these crap pedallers?

I think I need a new banker.

Sunday, June 1, 2008

Violators will be towed

I have lived in my condo for more than six years. In that time I have complained untold times about cars parking in my spot. Since I don't drive, it is usually unused.

The various interlopers generally ignore my polite notes and make my life miserable. For some reason, it really kills me when someone parks in my spot. I take it personally, especially when it is a neighbor or a neighbor's visitor. They are taking advantage of my disability, I tell myself. But I never want to call and get them towed. Part of it is i don't like anyone to be mad at me; part of it is I am in a wheelchair and I don't want anyone to have cause to hurt me.

My brother-in-law has been to my place three or four times. Today he came by to help me move. There was a car in my spot. Without a second thought, he had it towed. He later explained it with ancient Rome story: It seems the gals in the emperor's harem were bad-mouthing him so the emperor called them together and killed one of the complainers, shutting the others up.

I won't lie: It felt pretty great, although I would never do it. And I am waiting to be accosted by the tow-ee. I guess I can tell them it is better to be towed than killed.

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