Monday, October 09, 2006

It's been awhile since I got online and longer since I last posted. I've been distracted somewhat by my back pain, which has gotten significantly worse. Sitting is pretty rough on me but I can't exactly type on my back. Another thing that I simply must work on is this machine. It is running WinME, which you might know is an antique, no longer supported and buggier than Win3.1. So even as I type, when I look up I notice that my last several words haven't quite made it to the screen. I pause, wait and watch as the screen sits, blank. Then suddenly the cursor blinks and the words start appearing. It's like that time is 1967 when I smoked opium with Ma Armstrong, the Buddhist witch. All my words of the poem I wrote didn't appear on the paper until after I wrote them and stopped to watch them appear. They trailed behind the actual writing by a few seconds. Ma saw that too, so it was a group hallucination. This problem is not, however, caused by good drugs but rather by a bad operating system.

Jon just got through with a stint in the Kingston hospital for throwing up blood and running a fever. They figure it was a feeding tube problem and did nothing to change it, just waited for the blood to stop and then sent him back. They don't do surgery on vegetables so it will happen again, every time the tube gets jiggled by maybe turning him roughly or just tangling up the tubes. He'll toss up the blood and then breathe it back in and then run a fever as his body tries to deal with it. One of these days the fever will run to pneumonia and then maybe Jon will get the break he needs: Death.

You might flinch when reading that, but it's the truth. The current system does not deal with people like Jon very well. He will never write a book, flip a burger, or vote, so why fix him? He is money down the tube, as it were, and there are lots of sick folks they can fix, so why waste time on him? I suppose one could argue that a life is a life and the Good Book tells us to help the helpless, but in the real world of North Korean bombs and sickly Arabs with a penchant for self destruction one more locked in mind is just too much to worry about. The nurse I spoke with hadn't even looked in Jon's eyes and was surprised to hear that he was not staring at the ceiling or moving his eyes back and forth like a robot. He was tracking me and following me with his eyes as I talked to him. They have stopped all therapies with Jon, the ones that would help. He's waiting for Godot right now, or waiting for the head of Che to be transplanted onto his shoulders. Maybe we could make him like Zaphod with two heads. Nah, better to leave him in bed like a bucket of flesh where we pour in brown feeding sludge and pills and water and dump it out now and then when it stinks.

That sounded bitter. I'm sorry.

Jon tracks and emotes like a man would if he were trapped in his form and half the people didn't know his name and nobody plays his music for him and nobody looks him in the eyes and talks as if he could hear. But that's not enough to get him Ritalin or Ambien or Brainfingers devices that would enable him to move a computer cursor. That's for folks who live 2 hours from the researcher. Apparently here in America we have a 2 hour rule on health care. If you can get within 2 hours of us we will try to give you a voice, but if you live in the only hospital that will accept you and it happens to be in the middle of East Bumfuck NY you are out of luck, son, and sorry to see it happen to a nice guy. He never got a break. I knew from his natal chart that he was due for some serious stuff but it always seemed to me that all them grand trines and such gave him the power to resist. Indeed it did work out that way but the results were less wonderful than I thought. He resists dying with a strength that is staggering to see, but he will not heal any faster and he can't move a damn thing to prove that he's "in there".

Mean time I sit here with increasingly painful jolts down my leg, trying to document some of this, trying to interest anybody else in his situation. It's like shouting down a wishing well because you ran out of pennies. Still, if I throw myself down the well and gather up all the coins, for $2100 I can buy a device that straps onto Jon's forehead and perhaps allows him to control a computer, if he's having a good day. At the same time Jess is fighting for her scholastic career as the Dutch screwed up her records and gave her a few undeserved F grades. They had refused to teach in English, telling her that some classes were self explanatory, which they weren't, and then told her not to bother with one class as it dealt with Dutch building codes. They then failed her for not coming, rather than assign her a class in English from which she could emerge with a grade that more accurately indicates her real skill level. We're working on that too.

So I have two kids trying to tell the world that they are smart and alert and can do the work. They are being held back by people who don't care and have forms to fill out. I write and talk to blank walls and throw myself down wishing wells but to no avail. It's time to have my eyes examined and nothing got accomplished today except the Moron in the White House has expressed his deep concern that North Korea wishes to have a nuclear deterent against an invasion by the United States. Not a very successful day but if we are very lucky some nurse is sitting with Jon watching his eyes, some clerk is looking over Jess's test scores and some diplomat somewhere is sipping whiskey with another diplomat and talking about the weather.

I have to stop talking now and take more drugs and strap an electrode set to my back to block the pain signals to my brain. Later I'm strapping the set to my brain to block the frustration signals to my mouth. Maybe I'll burn some clay today and see if I have a product to sell. I have started making lidded pots and serving dishes but I need to be able to shovel wood for several hours without screaming in pain. On the other hand maybe that will become a type of firing, like raku, except instead of the pots being subjected to stress the sculptor is. Interesting marketing concept. I wonder what Jon would say about it?