Sunday, July 25, 2004

This is from a letter I wrote to a friend, talking about how to convince the doctors where my son lives that he is responding to people. She suggests that when aides tell me stories about Jon reacting to them I should have them write down these stories to show the doctors in charge of his care....

I'll try to do this, if they have the time, but you know that these aides and/or nurses are usually talking to me as they are going from patient to patient and don't have much time to sit down and write something up. It's a good idea, I guess, but in the end what will the result be? They may fear "crossing" their superiors and risking their jobs, which could easily happen, especially if the superiors think I may use this information to get them in trouble with the health department. It'll come down to them saying they know more than the doctors do and that won't go over too well. Even if I have a 500 page report from janitors, aides and nurses saying Jon seems to respond in a coherent manner, what would be the result? They still don't have the funding for special therapies like HBOT, they still don't have enough aides for patterning, they can't give him drugs that the Medicaid people say NO to.......I'm just saying that this is not a democracy and no matter how many votes Jon gets for being "in there" ol' Doc Shroud can be perfectly within his rights to say "No, he isn't" and keep doing what he's been doing. The chief advantage might be for moving him, to convince the place I want to move him to that he is capable of being much more responsive. So in that case we are waiting for someone to get better and move out, or die and leave an open bed.....and we need Jon to be first in line on the "A" list. That's a hard one, because he's just another person waiting for a bed. ON the plus side, if the new place should ask the guys in LK if Jon is a problem patient the answer is "NO" and does the family support and advocate in a civilized manner the answer is "YES" so we have a good record to go on.
Does anyone know of a device to measure hand pressure? I remember various doctors measuring my squeezing capabilities to determine the extent of nerve damage in my back...I'm wondering if there is an objective test, like a grip with a dial. I could put it in Jon's hand and ask him to squeeze and on a good day he would squeeze and then I can record the pressure...maybe even document smaller pressures that I didn't notice. Another potential record would be measuring the electrical input to his hands. Even if the muscles don't move, if you ask for a squeeze and the brain sends signals to the hand, then he's reacting, right? These guys are going to want objective data. How much does it cost to fly a guy to Germany? I wonder..... if I can get Jon to Dr. Birbaumer's clinic in Germany, then we would have the expert using the equipment, seeing if Jon is "in there" AND in a country with universal health care! Something to think about. At least it isn't like the guy in Cuba with the stem cell therapy and nobody from America can go there because Cuba is "EVIL" damn socialists. Another thought I had...that book The Butterfly and the Diving Bell was written about the clinic where the publisher guy was discovered to be locked in, not PVS. As I recall the place became a major research center to explore this locked in stuff. Does anyone else remember that? More research for Will to do. Finally, here's a crazy idea from a crazy father..... I used to do a lot of theater stuff when I was a mace-swinging mail-wearing Viking guy. I liked to do puppets, white face mime etc. Well, there's this nice picture of Jon as a toddler looking at a marionette I had of a Scotsman. I was looking at that and suddenly had this thought of Jon as the puppet, all tied up from above. You move the ropes and Jon's legs move.... so in patterning they want the legs and such to move like he's a baby, right? Why not have a rig to hold him up vertical, move his arms and legs as if he's walking and let the feedback loop help him recall what it felt like and how it happened? Just a thought. Couldn't require any more equipment than a ceiling lift. It might take fewer aides than patterning and if you did it in front of a mirror he'd see himself move....

Hang in there Will, hopefully Jon will be at home soon.

Jon's doing alright, kiddo. Just between you and me and the several hundred others on the list, crazy Will the Shaman gets "visits" fairly often these days. I told Jon he can spirit walk over and sit inside my head and visit when I can't get down there. When it happens I can feel his body from my side, feel the trache, taste the crap in his mouth, the tube in the gut, the a distant feeling, but it's there. And in exchange he gets to feel my hands moving, taste my lunch, help me drink a beer...8-) It has helped him stay sane, I think, because it shows him that I am working on his problem even when I'm not holding his hand. I can tell when he's feverish this way too and call down to LK to tell them to check...he's always sick when I say he is..... Jon is rational outside the body, the chemistry is not there to upset the balence. The thing is, I think sometimes he thinks he's dreaming the visit and I tell him that if he is dreaming, it's a nice dream, so he shouldn't fight it. Then again, maybe I'm dreaming as I walk around feeling like two men in one body, maybe I'm just crazy now, but if I am it's a nice crazy...well, not really nice, but it helps me deal with my little problems. How can I be too despondent over my pain when I can feel that trache, and the back pain and the cramps in the feet and legs and arms.....? In this way my faith supports me, reinforces the concept that the soul, the spirit is not bound to the body and although it can be effected by disaster, the true "self" is free of such concerns. In the end we are all ONE and this life is just another in a string of lives, like a poem made of stanzas, some of which leave the spirit flying high and others which seem forced and uncomfortable. Over all we like the poem even when we get grumpy with the poet.

Will, Jon's dad

This feeling I get when Jon visits is like the feeling you get when you are sudden aware that you are drunk or high. You feel your thoughts are not quite connected to your body and it's possible to be more objective about the pains and such you normally feel, even to the extent of ignoring them. Then there is the feeling of someone standing just behind your shoulder so that if you turn your head you will see them standing there. I relax and let Jon "in". I feel his arms in my arms, his body slowly superimposing itself on mine. I can feel the places where plastic tubes come into his body and taste the plastic of the trache in his throat. It's useful for me to know how he feels but useless in terms of being able to talk to the doctors about it. In fact, it's important that I not tell them that we do this sort of thing, because as good Christians they would think very badly of a man who thinks people can control their spirit and leave their bodies.

I'm not sure what would happen if you had a party for shamans. Like if there were a room full of people dressed in whatever they think of as "party clothes", maybe feathers in their hat, like I wear, maybe feathered cloaks like the Central American shamans like to wear. We all have sticks of some kind, all have special rocks, special bits of flotsom, maybe animal friends like old Fred the cat, or spirit friends and guides. What kind of music would a shaman party have? No doubt drums would play up big, and a bonfire, maybe a sweat lodge. What a nice idea to be somewhere I could talk to others who know about spirit walking, about distance healing. I'd like so much to be somewhere I could talk about what it is like behind the veil, how the spirits assume form, the kinds of things you have to do or not do. They wouldn't look at me funny and move away. They wouldn't suggest more drugs or counseling. They'd show off their crystals and rocks and mirrors. Talk about dead ancestors coming around, maybe introduce me to their guides. What a nice party that would be.

But shamans do not have parties and do not come together for support groups. Maybe I should start one, if I could be sure that I wouldn't be in a room with some neo-pagans talking about urban pagan myths and wiccan spells. I don't need to hear from wannabes, I would just like to listen to some serious spirit guy talking about a bit of business done some equinox by a bonfire in the desert, involving birds and snakes, turtles and foxes, huge semi-transparent figures against the sky and some friend getting a good report on their latest MRI's. No credit, no claim to fame, but somehow helping those who need it. That would be interesting.

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