I tried to talk on the air today thru the local PBS radio. I wanted to talk about the ethics involved in having an adult child who was diagnosed as PVS. They had this medical ethics person talking, generally about problems experienced by children and their parents when it came to making decisions in medical situations. See, our story is more rare. As father of the man I have very few rights. Obviously if we had a paper saying that in the event he was unable to make choices, I had the right to make them for him. Now one of the cases they talked about was a very bright child of 16 refusing to have chemo for his cancer, which would certainly kill him. The therapy he wanted to take was herbal and the doctors described it as "spice therapy" and therefor useless. The judge came up with a fair compromise but it merely confirmed the obvious: that we have no choices, we only have defaults, and in today's world, in America, New York, the default is the State. But I digress somewhat.. he said..
They put me on and told me I had a minute or two so I was able to set up the situation, how as father I was told by all the doctors that when decisions were being made for Jon, no matter what I wanted in the end they could get 3 doctors to sign off on what they wanted and that would be that. In point of fact, that's how they presented me with Jon's DNR. I didn't get that far before they cut me off, but they asked me to stay on so the guy could talk to me after. I gave him more details and he grew increasingly uneasy with the problems I had faced. He was of the very strong position that everything that had happened to Jon, or for him, was not legal., that as the closest competent relative I had the final say in all things, even to removing the feeding tube, ala Schiavo.
Funny thing about the concept of telling someone to starve my son to death, it opens the door (again) on the subject of The Good Death. In the Abrahamic (?) faiths we start off with a father killing his son and it goes right thru the two Testaments. In each case it is presented as a Holy Act and one which advances the soul of the Father toward a higher state, or at least he is never brought up on charges. I keep recalling the news story of the guy driving down a highway with a knife to the throat of his son, saying that his son was possessed and to save his soul he had to cut off the head. I forget if he even cut the kid's throat before they stopped him. But still, the original story was not overly interesting to me except for it's Biblical overtones, I would like someone to tell me how the boy is today? If the cops had been of the same faith as that man, they would have held the kid down, and after freeing his soul, they would bury the body with honors, calling it a Good Death. Same thing happens when some kid in Iraq steps through the wrong gate and gets shipped home under a flag. It's a good death.
If Jon is dying as I write this does it prove that Irony is the name of the currently dominent god?
If so, He is a Trickster. I learned, or was told, that they had stopped Coma Stim therapy for Jon. So he gets to either lie in his bed looking up at the ceiling, or sit in his wheelchair near the nurse station, sometimes with a TV on, sometimes just in the quiet dark.
I was told, it was suggested, that I grind up some Ambien I acquire from the web and stuff it into Jon's feeding tube. It has been found to help some patients, to 'wake them up'. The thing is, first, that as I have found, there is little chance that I would be able to mess with his stuff before some aide walked by. I figure it would take me the better part of the day to fiddle with any of his plastic tubular crap, it just freaks me out. My philosophy with drugs, too, has always been to be extremely careful about what you take, where you get it. That is, after those years of psychedelic majesty. After my first marriage, my loss of son, my loss of sanity and health. Took me quite a while to recover from having to ship Jon off to live with his mother at age 3-4. It ate at me for years. When Jon came back home he was such a great kid, a bit wild, but still with some work... Then he left yet again, this time to a mother who was breaking apart. She gave up trying to have a social life and having a wild violent kid around, so Jon was once again shipped off. This was pretty bad, with the drugs and such. By the time he asked to return to his mother, and she was ready to try again, I think I had lost him in some deep down part. I had never been able to save him. I couldn't even protect him from himself.
Now some man, who means well, is talking to me on the phone suggesting I administer a drug that was designed for something else, but seemed to help people with limited neurological abilities, or even 'locked in' types. But I have to order the pills from the web, then ferry them down 100 miles in powder form in some kind of bottle, I suppose, and somehow get it into Jon's feeding tube in hopes it isn't amphetamine instead. Although, that might be something to try. Personally, if I was going to try something this bizare I would most likely slip a bit of blotter acid under his tongue. I used to say I'd like to go tripping on acid so at least there would be colors at the end. It's not so funny a concept nowadays, but a nagging kind of buzz in my ear, my inner ear. "Slip the kid something! If it worked, you'd help him. If it doesn't, who could see a difference? He's a potato!" Yup, sits in front of the TV all day, never goes out. Of course, having sepsis and such a few times, maybe that's a wise move. It certainly is easier on the facility.
So, I think Jon will have to do without me helping out in either a pharmachemical or psychedelic family. Not yet, certainly. I will however strongly suggest to pretty much everybody in the food chain that something needs to be done with Jon, something that involves him getting decent care in a safe place by good people and close enough that when I find myself in a wheel chair, I can still get over to see him and nudge him. Dang.
I have enough unfired pieces, masks and sculptures, to do in a couple firings requiring 6-8 hours and then a week or so to recover enough to walk without a cane. But still, I can administer to myself drugs of choice, trying not to mix my Foster's too much with the ones my doctor gives me. I have an interesting balancing act here, trying to walk between ethics and morality, pain and joy. It's a classic shamanic location. I should build a nice sculpture of Janus, or maybe even Odin. He was a serious shaman, hanging from a tree, sacrificed himself to himself and coming back with visions. I suppose if I keep this religious theme to my work somebody is going to think I'm obsessed, but that's better than being posessed. I need to switch to a Greco-Roman style kiln so I can fire in a few hours what takes me maybe 6 in a pit. That's the original style I planned to build but I played with downdrafts to learn clay and now I want to build kilns to learn that technology, and to create some beauty. They have to be of a type which will go up fast and then fire fast and break back down to be able to size the kiln to the load. I need a lot of bricks.
...Now this paragraph is several days later and the new meds have managed to beat down a lot of the side effects of the neurontin. That stuff is very nasty. It got rid of the pain down the legs but screwed up my memory and them messed with my hands and even apparently gave me a few panic attacks and serious disorientation. Sheesh. Now I'm trying Cymbalta and Lyrica. Just freaking amazing what you do to avoid disabling pain. The crazy thing is that, if you think about it, all pain is is a signal to the brain that some nerves are being pinched. Why do they have to natter on about it. My spinal nerves are being pinched by crushed vertebrae and bone spurs. No kidding. Hell, I was there when I fell! I know all about them crushed bones. Why can't you simply put up a "message received" notice and get on with it. What the heck does my body expect me to do? Re-inflate the bones? Seems silly, sort of an organic spam. And of course as always I think about Jon. There in his bed, maybe feeling all kinds of biological spam from his body, so much that he can't even move his eyebrows. That's gotta be very distracting and disturbing. That's exactly why I think he drifts in and out of reality, why his eyes won't focus or even fix on my face. He knows I'm out there, but he's just too busy trying to shut all those nerve signals up.
Ever read the Amber books? The ones about moving through shadows? I am convinced that people like Jon move through shadows and drift in now and again to collect their mail. I sure hope so. If I had 6 years to just be in a bed and think, and have all these nerves screaming at me all the time I think I could work up a good fantasy, one so real that coming back to a broken body would be not a good thing. So that's what I think he is doing most of the time. He's out there dancing with a nice looking girl under the moonlight. If the Diety has any sense of balance and justice, my boy is dancing somewhere with the girl of his dreams. When the body fails, the mind moves on. Sounds about right to me.
Take care of yourself, wear your seat belts and when lifting heavy objects use your knees. The rest of the time try to work up a pleasant fantasy involving music, moonlight and somebody you care about.