Monday, June 14, 2004

In two days the people from the Brain-Computer Interface project will drive down to see Jon, to see what kind of shape he's in and if they think just offhand if maybe he's "locked-in" or just dead in the water. They may end up with him wired up to a machine that will detect electrical waves from various parts of the brain, parts that reference things like arms and legs, but also memories and vision. As they prod and stimulate and ask him questions, they hope to be able to figure out if he hears and recognizes, sees and understands. They also will try to develop some idea if his mind can stay on the subject long enough for him to do something, even if only in his imagination.

This is one of those projects which has so little potential to create profit that it would be cancelled in the blink of an eye if funds got short. This is one of those projects which could prove certain people in powerful positions wrong in such a dynamic manner that lawyers could be brought in and suits could be filed. This is one of those projects that could enable a silent mind to speak up, by blinking a light or moving a cursor. Like Helen Keller having her palm scribbled on, Jon could find himself being prodded in his dream.

Last week Jon turned his head to look at his sister. He focused on my face as I spoke to him and when I stopped, he looked at the ceiling. A dog trainer with three Australian Shepherds took Jon's hand and stroked the head of one dog. Jon's eyes went wildly from side to side, either trying to find the animal or to control his excitement. Then he caught the dog with his vision and stared as the owner moved his hand along the head of the dog. Jon remembered Wishes, his silly lab now being held in Arizona by a sometime friend. He remembered the summer in Alaska with a buddy and his dog, living in the van and watching the sunsets, looking for work, hiking in the woods.

Jon remembered and when I told him I would try harder to find a replacement for Wishes, he looked as if he didn't really believe me, but towards the end he looked as if he might just try. Now I have to figure out if a puppy would be good for him, sitting on his lap, chewing on his fingers, barking at the wrong time, but being lovable and piss-silly. Or would a mature, trained dog like one of these three be better? A dog that wouldn't jump up on his lap, pulling out the feeding tube, licking an unprotected trache site.

We need a dog that could sit in the car for two hours, waiting to see the man in the bed. Jon needs a dog that would make him want to lift his head, to focus his vision, to go out into the sun and toss sticks with his bent hands. They've given up trying to find the hand splints to correct the twisted fingers. They've given up trying to tell me that Jon is going to rise up some day and learn to use a walker. But has Jon given up? The machine might tell us.

If his electrodes carry the right signals at the right time, even if Jon is staring at the ceiling, the doctors may be able to tell me that Jon knows I am there, maybe even probably even knows who I am.

In a box in the past, a stainless steel box on legs with wheels I held a tiny hand and said "Hello, Jon, I'm your father, and I will be taking care of you in this life." In a chair in the present, a chair with wheels, I hold a twisted hand and say, "Jon, this is your father and I'm trying to take care of you."

My father always told me I was worthless as tits on a boar hog. My sister once told me I had ruined Jon's life and should do the world a favor and put a bullet thru my brain. A wife once told me that living with me was Hell. An employer once told me, as I sat in a drug fogged haze of pain and tension, that I was just not trying. With all these assets, with all this encouragement, I am facing off against the medical system, against people with college degrees and years of experience, and I am trying to reach out to my boy and give him a lifeline to the world.

I've already said my goodbyes to Jon, years ago when I left the ICU and those terrible beeping boxes and pumping machines filled with his breath. I am trying to say "Hello again." If this new box should, like Pandora's treasure, be opened and reveal demons and ghosts and recriminations and guilt, I have some faith that at the bottom still is hope.
I'm a gardener. I plant seeds and water and guard and encourage. In the end I sometimes am nurtured in return. I AM trying to be worthy, and as I guide my boy back from Hell, I remember the instructions to never look back.

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