Tomorrow Jon is 30 years old, if he lives that long. On the 7th it will have been 4 years since he was thrown through the windshield of his van and into a coma. Twice I have driven past the spot where it happened....looking for blood or something I suppose. Curiously, on the way there I drove over a part of highway where some truck must have spilled some red paint in the back and trailed a line of red behind it. For a minute or two I was pretty freaked out, but of course there wouldn't have been any real blood left after several days. Still, it was disturbing.
The other day the hospital called and said they were confused about the DNR request. They wanted to be sure they understood our intent, so I explained that if Jon were to have heart failure they should peform CPR, even use the paddles, but he did not want to be on a heart machine, nor breathe with a machine. I added that if his brain were deprived of oxygen for more than a very few minutes I knew the additional damage to the brain would mean there was then absolutely no hope Jon would ever be responsive again. The doctor said I was talking about "full code". After talking with him a bit I felt that maybe Lake Katrine had not been very "out front" with me about what kinds of DNR were available.
Lake Katrine called me a little while afterwards and said they had been contacted by the hospital and been told that we had wanted the DNR taken off Jon. I explained that I had been told that Jon's wishes were to be observed, that mere CPR was okay but heart-lung machines were out. She was upset with me and explained that there was either DNR or full code and nothing in between. I said this is not what I was told when we talked about this before and she got a bit huffy with me. She suggested she put a couple of doctors on the phone and we could talk about it some more...but she told me that the doctors had made their professional opinion known on the record and it wa in the best interest of the patient that he remain with a DNR. I knew what she was saying: as a father I had no rights. The doctors credentials would trump my desire to do what Jon had wanted. It was the day after I had been given my first epidural and I was a bit sick and woozy. I told her we would maybe have to talk about this later, that I needed to lie down.
I know now that it doesn't matter what Jon wanted, nor what I want. The doctors want Jon to die and clear out his bed for someone who has insurance and will pay his bills. Jon is on Medicare and his expenses are reimbursed at a fraction of the real costs. His life is impairing the ability of the place to pay for care for patients who might be helped and they have given up on Jon. They won't say this very often, but if you speak to them carefully and sound like you agree with this line of thought they do open up. They don't enjoy this pick and choose kind of medicine, but they do it every day. They try to heal those they think they can heal, and abandon those they think cannot be healed. The problem with this sort of thinking...aside from the Nazi-like results.... is that it is based on a paradigm. In this case the paradigm is that severely brain injured people never recover, especially after one year. This paradigm is not backed up by any real study of the people who are severely brain injured, but more on a sort of "gut feeling". In fact, many doctors I have spoken with at Lake Katrine have never actualy been in the same room as Jon, but they have looked at his paperwork and formed an opinion. Never mind that had they actually looked into his eyes while they spoke they would have seen a human being in pain and trying to handle his fate. Never mind that the nurses and aides who bathe Jon and dress Jon see that human in there. Bottom line is the bottom line. It's better for Jon to die so these doctors can heal others. Or not. In fact they may just go through the motions and go home, open a couple of bottles of wine and fall asleep in their favorite chair to the strains of some Italian opera.
Well, today we go through the motions of selecting a government. Never mind that in the history of the world, no facist state has ever voluntarily given up the seat of power. We go through the motions and hope we are wrong. The current regime has stated that they want to do away with the "welfare state" and given it's citizens the oportunity to invest in their own health care, to choose their doctors and not stand in line for care.
Jon has no choice, nor can he stand in line. His fate, should he live that long, is to die in a nursing home somewhere. My hope is that wherever they place him once they close down Medicare, is better than the hell he was in at the begining, where he lay in shit with open wounds, drenched in sweat and urine and gasping for breath while the nurse sat at the desk reading her novel. The fine republican governor of that fine compassionate state closd down several hospitals that were not making profits for the state and dispersed the patients out into that compassionate conservative world.
I voted. I never hoped, but I voted. They took my name and gave it a number so that when they count the votes they can compare the names and the votes and know who voted for whom. As far as I know the votes then go somewhere else to be counted elsewhere, or perhaps they simply shred the papers and mark in a book who is with the party and who is a troublemaker. I guess I'll go into the book of troublemakers.
Abu bin Adam, may his tribe increase
Awoke one night from a deep dream of peace
And saw within the moonlight of his room
Making it shine like a lily in bloom
An angel writing in a book of gold
Exceeding peace made bin Adam bold
And so unto the vision of the room he spoke
"What writest thou?" The angel closed his book
And then with a voice made of all sweet accord
Replied, "the names of those who love the Lord."
"And is mine one?" asked Abu. The angel shook his head.
Abu spoke more low, "I pray thee then, write me as one
Who loves his fellow man." The angel wrote and vanished.
There's more, but I forget the lines. I learned them many, many years ago when my sisters had to memorize it for school. The angel returns and shows Abu the names that the Lord has blest, and lo, bin Adam's name led all the rest! It's charming to note that it was considered better to love one's fellow man, even if one was not known to love the Lord. In fact, by loving one's fellow men, one loves the Lord.
Our President says he loves the Lord and by that he means, of course, the Christian God, the Silent Trickster who speaks in rhymes and riddles. It is clear that he has no love to spare for his "fellow men" because unless you are exceedingly rich, you are NOT his fellow men. His fellow men, his "base" as he calls them, are the millionaires who give him money and power. The power to kill hundreds of thousands of those who merely love their fellow men. Or those pitiful few who are sitting in wheelchairs, unable to vote or contribute to a political party. Those pitiful few who wait for the heart to slow and stop so that they may fly away, free at last.
The BIG THREE_OH Jon...... I'll bring a box of cupcakes for the nurses and I will slip a bit of frosting into your mouth. I know you like the flavor of chocolate. Last year you smiled so big when I did that for you.... It's not much, Jon, not much of a present, but it's all they will let me do for you. And it's the thought that counts, right? I think of you every day, son. I miss you all the time. Be well, sleep tight, dream dreams of pretty girls and bonfires and the sound of drums. Your daddy loves you.