Thursday, August 20, 2009
The spirit in this house has lifted over the last couple of days, the change of the mattress a symbol of all the outer and inner change. Monday I called Hospice. Tuesday two sharp, intelligent, attentive women, what I call true human beings, came to talk with me about Jr's particular situation, like they really wanted to know. What they were telling me they do was what seemed to me so simple a concept that is missing altogether in service agencies and facilities. The last two days, Jr and I have relaxed so much that my friend Carole I talk with on the phone every day, said this morning I sound relaxed. No more threat of nursing home, investigations and anxiety for leaving a coffee cup in the sink yet to be washed.
I realized in this process of relaxation that I'd come to see our situation here at the house like having our wagons in a circle fighting off one Indian attack after another. Always ready for the surprise attack. A watch your back atmosphere all the time, dreading the next invasion of the Absentee Police, not afraid of them, rather anticipating the bother, wishing they'd stay home and watch more tv. Now, nursing home is not only not an option, it's not even a consideration, because no power can get him in one against Hospice's will. Going back is a daily fear of Jr's, and for me it's dread of more bother with bureaucratic mind, which isn't connected to rational any way you look at it. It's connected to money and money only. Profit. But, that's the nature of Capitalism and it's how we live in Capitalism. Money is first in all considerations. I don't know that Socialism is any better when State agencies run everything. Get in line for your turn to be regarded a suspect.
My dream world is a place where we look after one another and everyone has care as needed. I think that's what Jesus was talking about when he said love your neighbor, do onto others..., love God. The basic simple qualities of his teaching are 2100 years later as idealistic as they were then. How can you love your neighbor when you can't trust him? When he's siphoning gas from your pickup at night and you can't catch him, but you know it's him, how can you ever like the jerk? Say your neighbor is calling your wife when you're not home, flirting with her, and you heard it from her best friend, not her; it's kind of hard to like that guy. Love? No way. Not even possible when how to kill him and get away with it is all you can think about.
So you write that verse off, something you can't do, and it makes you feel bad when you think about it. Guilt. But it's really not a problem, because nobody else can do it either. You want to put your focus on something you can understand, like God hates queers. But how come he thought so much of King David? That doesn't really count. It was King David. And how come it was important that Jesus be in King David's bloodline if David was a fag in scandalous love with his boyfriend Jonathan, parents and relatives freaking out all around them, which the Bible so explicitly illustrates. That part you're supposed to skip and go on to the parts about slaughter and mayhem, killing and the all-night hedonist parties after a battle, the OT justifying genocide and slavery.
The anxiety lifting after all we've been through, when I've only wanted that an honorable man not die of despair when he doesn't need to, inspired a great deal of relaxation in both of us. I was going to say it was more in me, but no, Jr was the one looking at prison by somebody else's whim. The forces around us were shooting arrows of blame and lies, threats and suspicion, hitting below the belt to get him away from me and into a nursing home, for his own good. All he wants is his own bed, his own home, and his own life, not to be thrown into prison again. The bureaucrats and the Absentee Police want him filed and shelved in the lumberyard of the waiting to die. They want strangers to feed him pabulum that would gag buzzards, instead of friends and neighbors at home to feed him what he likes. So what if he wants a whopper junior. It's better than anything they put before him at the nursing home.
At a time in his life when all pleasures are denied him, and the exit draws nearer every day, I say let him have what he wants, even if it's Pringle sticks and beef jerky. He's well past 21 and I'm here to allow him his basic human rights as an autonomous individual. Some let on like, what's the big deal? That's kind of 19th Century, isn't it? What's so hot about personal autonomy in a police state? How much personal autonomy do you have at an airport? We're so used to it after all these years of being searched at airports and men with guns watching, that it becomes how we do what we do. It becomes culture like in China nobody tells anybody outside the family anything that's important to them. It's been Chinese custom all along to rat on neighbors and relatives to the government, the Emperor, what have you. Mao broke into the home encouraging children to rat on their parents and teachers, wives to rat on their husbands. Like it's custom in our mountains not to trust anyone, it's more so in China.
Then along comes Hospice on a white horse shooting silver bullets and saying Hi Yo Silver, Away. Away with the threat of nursing home coming from any sector. Away with being watched suspiciously for the first mistake in this game where the patient is the one never considered to make a decision for any aspect of his life, regarded the one who knows least about himself. That they listened to me, his care provider, who is with him every day for a few years now, I found curious right off. When I found they were interested to know my observations of his patterns of behavior, that they were encouraging me to talk, I was heartened. They wanted to hear what they needed to know, instead of acting toward me like I was in the way, telling them what to do, and certainly not a reliable source for information about the patient.
The very first right in Hospice's list of patient's bill of rights: The patient has a right to be informed and participate in their own plan of care. My jaw dropped. This had never been the case. Number 2: The patient has a right to be treated with respect, consideration, dignity, and full recognition of his or her individuality and right to privacy. Unprecedented. It goes on. They are here to assist the care provider keep Jr comfortable in his own home and his own bed, not to inspect, threaten and kidnap, but to assist. As the two women drove away, I felt like angels had been sent. You can be sure I thanked God. Continue to.