Wednesday, April 14, 2004

Freedom is the Almighty's gift to every man and woman in this world. And as the greatest power on the face of the Earth, we have an obligation to help the spread of freedom." I read this, the Almighty has given everybody the gift of freedom....and therefore everybody is truly what is it that George is talking about 'spreading' if everybody already has freedom as a gift from 'the Almighty'. Unless.......we know that many people refer to money as the "Almighty Dollar", so maybe he's suggesting that the War on Terror and Iraq is about spreading money around and/or controlling the spreading of money around. Like 'cooking the books' sort of so everybody is being controlled by the flow of money. Hmmmm. Somehow I take issue with that as a plan for a nation to take on. Insofar as it is my money and my life and my family's life that seems to be the equity on this money he is spreading around. Just a thought. or is he saying that HE is working for HIM, being that he is under an obligation to serve the Almighty in actually delivering this 'freedom'. It reminds me of a line in Dragonheart where the evil king is asked to set an old blind man free and he shoots him with an arrow and remarks that "Death is a release". The old guy was set free for sure, and it made the king happy. When the king is happy, everybody's happy. It's a trickle down.

Now it's Tuesday, right? Last Tuesday I got hold by email of a doctor in the National Institute of Health, who turned me onto a researcher in Germany, a Professor of Neurology or something, who turned me on to a lab, research place in Albany, an hour away. Now there exists a chance that they may be able to test Jon and see if they can tell if he is aware, but locked in. Now there's a quandary, because to imagine that he is aware of his situation and maybe for 3 years has been unable to tell us....Well, that sucks. But, we have to know every thing we can, all the time, and make sure people like these are "in the loop" because their work may someday set a person free without having to kill them.

There's a book which speaks of amputees experiencing great pain in absent limbs. Sometimes it doesn't respond to any kind of treatment, but this guy took a man who was suffering daily enormous pain in an arm which was gone. He put the left hand in a box with a mirror in it to reflect the left hand. The guy looks down and sees two hands, a right and a left. The pain disappears. So it's their self image that trumps 'reality". What a brain injured, locked in man may be experiencing could be as complete, as sensual, as what I experience. And one irony is that under the stress of trying as a father and a human being to help this young man, this person I helped create.....I try to avoid "input". I play computer games that I know I can either win, or at least have no time limit. I can just dive in, play a hand of solitaire until I win. Then I watch the fireworks and wash a load of dishes. I take pride in delivering clean dishes. In part I get all excited about a clean kitchen because it's a done deal. It may dirty back up, but that's life. What Jon is going thru is not quite life. It may not even be awareness, but then there have been times in the past when I was walking around numb. It happens. In Jon's case it may be a done deal, or it may be a bad trip. I have to find the appropriate mirror to show him the other side, the missing part. What I call reality. Just long enough to help me understand where I should be putting my energies. i don't have a lot to spread around. I am not free.

Last night they had a show on PBS that showed them wrapping stem cells around a broken spinal nerve and a year later the person is feeling something there and moving a bit. Now, how would you spread stem cells in a broken brain? Where would you put the stuff? Would it migrate to damaged areas. What if it caused tumors and now I have a son who is not only unable to communicate his awareness, but now he's aware of a terrible pain because we did something and that was the result. Maybe even be getting increasingly aware and able to communicate, but what he says is "the pain won't stop!". Now there's a freakin' bit o'irony. What a quandary.

It's not about 'damned if you do, damned if you don't.' I'm not damned. I'm doing all I can, but no doubt not all that could be done. The thing is you don't know what was the right thing to do until you see the results. So you want to do the carefully right thing, and maybe spreading cells scraped from his nose onto his brain....I don't know if we are there yet.

Then there's Jon all wired up, shooting out alpha waves to mean yes and something else to mean no and now he's talking. It's like something out of one of my childhood horror movies, "The Brain" only it's my son. Woof. What if he starts chewing me out...not an impossible scenario....typical, actually, for someone to lash out at someone close. You certainly have a right to be pissed. I'm not happy about having a bunch of busted, aching vertebrae so i have to figure that I would be raging if I couldn't move a freaking thing but my thoughts. I think I would spend a few hours typing out on a virtual keyboard every swear word, every angry phrase I could think of. But maybe not. Not if it hurt Margaret's feelings. I'm pretty careful about that. I think it's bad luck to hurt a sensitive, sweet, soul. Besides, she's my wellspring of hope and energy. I figure if she can stand being around me all this time, we ought to be able to stand all kinds of crap the world hands us. It's a kind of concept I have that were I to be unable to feel my arms again due to some accident or disease, I would strive to imagine a hand which held hers at all hours of the day. She wouldn't have to know, but if I could do that, I could probably handle the crap.

I'm taking a lot of pictures, using that digital camera I was given. I take pictures driving up to see Jon, sort of documenting how I get there and how I get back. I have doors, lots of old doors. There are shots of tree roots, some looking like they are pulling up and moving out. I also like waterfalls, in the Spring when they are full and vibrant. It's a great camera for that kind of thing. The chip holds 64 pictures, enough to go from home to Jon and back again and still have a lot of neat things to show. Next time I want to stop and take shots of old trucks and cars, the shells of autos from the 40's and 50's. There's a lot of that sort of thing, also hot rods, all shiny and hot locking. So one trip might be mostly images of the landscape. I want to write captions for them and put them into a book. Might even try to publish or print it up myself. You could make a few copies and give them to people who might enjoy them.

One thing I like is that I feel a connection with Jon sometimes, that I know he's hooked in and watching thru my eyes. Then I go looking at everything, just in case it's true. I look at clouds, at trees, dogs, women. I try to listen to great music, jazz and avant garde stuff like Laurie Anderson and Bjork. Stuff I like and he liked, so I'm doing for me as well. This is something I'm doing for Jon, or doing for Margaret, this is something I can do and get it done. I can enjoy life, think about the people I love, experience the world and document what I feel and see and think. Then if something happens and at 65 Jon is given a healing injection and returns to the walking, wheeling or sitting up in bed talking world, he may ask "whatever happened to Dad?" Someone could give him some books and say "He left these for you to read." In case he's blind, I have the masks and other ceramic and wood sculptures. They should allow anyone close to me to understand what i was doing and feeling. I'm kinda right out there to touch and poke. When I pass I think I want to take a little walkabout and experience things like black holes and such. I'm tired of entropy.

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