Wednesday, March 03, 2004

There's a thing that people do to enable them to treat people in a way that most people would find abhorrent. They dehumanize them. They call them something other than human. If you want to hang a man with dark skin you call him a "nigger". If you want to stop trying to heal a man who cannot move his body you call him PVS. That means "persistent vegetative state." The doctors who use this term use it the same way an educated man says "nigger". They know it tells you almost nothing, but it does indicate that you have no worries about what you do to them. There is a problem with this. The person never fits the name. Dark skinned people are as varied and as different within the context of humanity as pebbles on a beach. So they are as much like a light skinned person as a black skinned person. In the case of "PVS" people you find that PVS is a more polite way of saying it. No good doctor will call a person a vegetable, certainly not to the family. But inside they think "vegetable" in the same way a southern politician will think "nigger" when he sees a dark skinned person.

I saw my son yesterday at the facility where he lives. They tell me his EEG was "abnormal" "nigger". They tell me his brain has "nigger". So they have authorized a DNR and I did not object. DNR means that if he dies, even though they can bring him back, they don't. The reason they did this was so they could stop trying to help him heal. The reason I did not object is because I am a pagan and a father and I know that if he dies again his brain will be so injured that there isn't enough lifetime left for him to heal.

There is a nice report from a very good hospital in Britain which says that PVS is a perjorative and useless diagnosis that upsets the family, does nothing to explain what the doctor should do and is very often flat out wrong. By this they mean that a good percentage of PVS patients suddenly begin to emerge from their captivity and start to respond to people around them and move their bodies. Often they actually begin to talk and can be rehabbed to the point that they can get around, even walk and go back to work. But doctors do lip service to this report and continue to tell families that their loved one is in a persistent vegetative state and will never heal. It's easier for them. If a person dies under their care while labeled PVS, the doctor can say "See, I was right. They never had a chance." If he says they are minimally responsive then they have to DO something. And they don't know what to do.

It isn't all their fault. They won't spend the money on health care because they have to spend the money on pork barrel projects and things like their dick-sucking interns, like Monica. That's very important when you are a very important person. I know if I had a choice between funding health care or having my dick sucked I would probably have to choose the health care but that is why I am unemployed and not a politician. I just don't have my priorities straight. I think babies and sick people are more important than my dick. What a knucklehead I am.

I asked Jon (the vegetable guy) if he wanted to listen to music. I had my hand in his and I asked him to squeeze my hand if he wanted to listen to music. He squeezed my hand, just once. I waited and then said I could put on John Coltrane. He frowned, so I suggested Harry Nilsson. He squeezed my hand. Nilsson was his favorite before he became a non-human, a vegetable. So I put on Nilsson and he smiled and looked at the boom box. What a crazy thing it is that a vegetable would randomly do things that in a real person would be called "responses"! Just amazing. I did this sort of thing for an hour or so and that vegetable in the bed just kept doing things that, had he not been a brain dead object, would have been called "communicating."
Why don't the doctors have this experience? Well, for one thing, on the doorframe to his room is a sign with two names. One is the name of his room mate. The other is "William Shirley". Jon's name is William Jon Shirley, but since my name is also William, and his grandfather's name is also William, we always have called Jon by his middle name. The doctors come in, see that tag, and call him "William", ignoring the big sign above his bed that his sister drew...."Call me JON". Jon doesn't like being called William, so he closes his eyes and ignores the doctors. So he is obviously unresponsive. I have removed that tag and replaced it with one calling him "JON", but the forms the state requires the facility to use have a first name, a middle initial, and a last name. So they call him William and he closes his eyes. When I correct them, if I happen to be there, they call him Jon, but by then he's pissed and doesn't open his eyes. I have watched him peek out to see if they are still there and then open his eyes to watch me. But I am just a father, and the doctors are experts, so I am mistaken.

Jon cries when I have to go home. I can only stay a few hours because I have a two hour drive and it hurts a great deal because my back is broken in three places, so I have to take drugs to kill the pain. The drugs make me drowsy and it is dangerous to drive after dark. It's not too safe driving in the daylight, but he is my son and I will take a few risks to see him, to hold his hand, to comb his hair and kiss his brow.

There are tests that certain researchers have devised which can show if a human brain is reacting to stimulus, like pictures of favorite people and places. It is an enhanced PET scan and shows the brain activity when someone is looking at a picture of their mother, their best friend, or a picture of some stranger. Why don't they use this test on someone like Jon to see if he is actually aware of me and the rest of the world? Because the test is expensive and we are poor. Jon is kept alive thru Medicaid funding and it is minimal. The people who fund don't care if Jon is stuck in a body he can no longer move. He doesn't vote, doesn't send campaign money out and at this stage of his condition isn't very pretty on camera. His hands are claw-like and his feet turn the wrong way. He has a plastic tube inserted into his throat with green mucus hanging out of it. Not a good photo op. He's just my son, my baby boy, the kid I gave back rides to. The kid I entertained with puppets and funny voices. Just a young man with no future. If they proved he was aware, why, I might sue somebody for failing to try to heal him. Only I can't afford to hire a lawyer if I did want to sue.

Jon wants to come home. I asked him about it and he squeezed my hand, but I can't let him come home because he has this plastic tube in his throat and the doctors say he is PVS. Curiously enough, even though I am his dad, I have no real say over what happens to him because he is 29 years old. He's an adult and never gave me power of attorney over him...because he can't move his hands except to squeeze mine when I offer him a Harry Nilsson CD. "You can jump into the fire...."

Donald Rumsfeld says the world is an untidy place and sometimes women and children have to be blown up, dismembered, and brain injured to secure a democratic world, and we all want a democratic world, so long as the rich get to tell the poor when they can die. I would not wish a severe brain injury on anyone, but there are some who would benefit from a year in a long term health care unit. They might understand why that man has pulled over to the side of the road and is sobbing. It's untidy, but it's the best I can do. I can love my son.

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