Wednesday, June 23, 2004

A week ago a doctor and the director of the brain-computer interface project went to see Jon. I was hoping he would have a good day, that the dogs would be there and Jon would have his hand on the dogs, watching them and getting excited. I hoped that when they called his name he would turn his head and look at them. He had a bad day. He didn't acknowlege them at all. Now they aren't sure what to do. She says she is not really very good at doing what the doctor in Germany does, "coma detection". It's when they run a bunch of tests to see if the person is responding, but unable to move. They can track the brain waves and see appropriate waves when certain stimulas are given. She wants me to come down with her someday when I can, to see what he will do with me.

I'm putting siding on the house, staining it grey and trying to make a 1940's ranch look like a contemporary. I had them put in a back door, one that opens into Jon's old room. It's a small room but now, with a ramp, Jon could come home and see his posters on the wall and the view from the window would be one he knows. He can't come home until the trache is removed. I can't push a plastic tube down his lungs and suction up the liquids which build up there. I know a woman who does it to her mother and she says she cries while she does it. I think I would just lock up, freeze in place. I don't think I could get my arms and hands to do that thing. I know it's a good thing, like shots of insulin to a diabetic, but I have my limits.

The vertebrae in my back have bony spurs on them and inflamed tissue around there. Some of my discs protrude, banging into the spinal nerve and causing shooting pains down my leg like a nail gun has ben fired into my thigh. It tingles all the time, which is odd because the thigh has become otherwise pretty numb, like a sheet of leather has been grafted onto it. But it stings, burns and tingles under that leather. I have just the south side of the house to do now, but that's one of the sides with a peak, so the top it about 20 feet up. I need to rent scaffolding so I can get up there and not be clinging to a ladder with some boards attached. I did that on the north side. Today I moved a ladder without looking and a hammer fell from the top and hit my head. Wheneever I get hit on the head these days I immediately see the empty bed in Jon's room. I think about me in a wheelchair next to Jon, learning to move my fingers again. A simple bump on the head can do that. I've met people who fell from ladders, or tripped on a sidewalk. I don't want to lose the few things I do well, like my sculpture, my writing, even my hugs,

I'm on the same drug that Jon is on. Mine controls most of the sciatic pain, Jon's controls his seizures. It also makes you a bit sleepy and damages your memory. I forget a lot of things, like going to the store and forgeting the one thing I went in to get and coming back with half a dozen things we already have. We have a lot of paper towels now, anyway.

This morning we missed the bus for my wife to go to work. She wasn't happy with the outfit she had on so we went back to the house to change and I would drive her down to work. It's a 2 hour drive there and back again so I was anticipating the amount of pain I would be in by the time I got home. As we pulled into the driveway we both saw them at the same time. Two beautiful young does were in the back yard, standing butt to butt in exactly the same pose, like bookends. Perfect twins. We stared at one another in silence, then they bolted and ran off to the slope where we have apple trees and a small pool of water. My sweetheart loves to see deer. One year one was muching apples a few feet from our bedroom window and we could hear her chewing!

So, despite the bumped head and acheing back and stained fingers, and despite being frantic to get to work on time, the Goddess Mother let us see her daughters and so we are blessed. Things are good, work is being done, my boy is still alive and healing, my daughter is still beautiful and smart. I have a beautiful wife and a cute little house, mostly. I have a studio and kilns and under the apple tree as I write I expect you could hear the soft movements of the deer under the moon and stars, doing what they do while I do what I do.

There is time enough for everything to happen if we can remember to wait for it.

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