Monday, May 03, 2004

Jon hated money, he used to tell me that it caused so much trouble that it wasn't worth having it. I think he'd be freaked out to know that his disability payments have accumulated to the point that he now has over $1800 in the bank.

Our car has a bumper hanging by two bolts on one side. It has over 200,000 miles on it, the seats are torn, the side map pockets have cracked off and there is a short somewhere that keeps blowing the fuses. The rear gate is rusted to the point that you can't lock it and the rear wiper doesn't move except once when you turn on the key. If Jon were in his best before the crash...he would have so much fun fixing the Volvo and that $1800 would be put to good use. Jon liked working on cars in much the same way I like working in my gardens.

I suppose that I could say keeping our car safe and mobile so I can drive the 100 miles to be with him is a thing for which we could use Jon's money, but then, it isn't a direct good thing because he does not own the Volvo. I bring this up because my sweety-pie is driving down to NYC tomorrow in the Volvo and the right front tire has a slow leak we can't seem to find and the fuses that blow kill the lights, the windows, the wipers, the radio and much more. Jon would have tried to fix this car for his step-mother to be safe on her trip. He'd probably go down with her to help collect his sister's stuff from college. But he can't because he's in a coma.

Is it ethical to use his money to repair my car? In the past I've sent him money to repair his van.... I even paid for the windshield that smashed his head. How ironic is that? Regardless, the people at Lake Katrine will only reimburse money spent on Jon when they agree that the expenditures are valid. They'd probably approve if I could explain the logic, but still..... is it ethical for us to use Jon's money while he's in a coma?

When he was first hit his friends started up a collection to help the family during our time of need. His room mate told me he went into one of the hang-outs Jon liked and turned off the juke box and stood on the bar and explain what had happened to Jon and passed the hat. They raised something like $3000 for him and one of the people Jon had been helping out volunteered to take the money and put it in a bank. She had been one of those "fringe" people Jon adopted from time to time. She had a bad rep and had stolen from friends but this was a chance to show her merit.

She took the money and partied for a few weeks until it was gone. She would send me emails saying she couldn't understand why I hadn't gotten her checks. I figured she had stolen the money but I was also kinda busy trying to get Jon to squeeze my hand to worry about it. Now that they got her to confess I think she is doing community service, because she has a young son and I sent the prosecutor a note saying that if she was convicted I felt she should be made to work in a long term care unit so she could come to understand the kind of people she had stolen from. I have no idea if she ever did that service. Nobody bothered to tell me.

Nobody has told me yet if Lake Katrine is going to be closed, or if they do what they will do for Jon. I suspect that all things being equal he may be sent to a hospital in nearby Kingston, still 100 miles away from the family, but close to doctors. We have a very nice hospital here and a long term care unit is actually inside. We applied for a bed and are waiting to see if someone will die or otherwise move on so Jon can come closer to home. If he had money to pay for a private room he could be there now, but he doesn't, he's on Medicare and Medicaid.... the programs the compassionate conservative President wants to modify so it's a pay-as-you-go choice thing.

"Jon, which hospital do you want to go to? Squeeze my hand if you want to go to Kingston. No? Squeeze my hand if you want to go to Saratoga. No? Lay there in a coma if you want to be dumped off your gurney in a local park...... good! Orderlies, take him away...."

Do I sound bitter?

I don't mean to be, but I am so very tired of leaving messages and not getting answers. If I had enough money I could hire a lawyer and try to put legal pressure on someone somewhere to find out what society wants to do with my comatose son, my slightly responsive boy. We tried to hire a lawyer to get guardianship of Jon for me, but the lawyers wanted to do other things and they never returned my phone calls. One seems to have left the state.

$1800 is not enough to save my son.

I bought shorts and shirts for Jon, and some new CD's to listen to, but I am never sure if they play his music or if he simply lays there in his bed staring at the ceiling in the dark. Sometimes that is how I find him: in the dark, staring at the ceiling.

Every two hours someone is supposed to turn him, to check for pressure sores and speak to him.

When I visit him I have to smell his hands for the scent of soured skin, which indicates he has not been washed enough. I check his back for sores and rub his feet with lotions. I have ticklish feet, but Jon seems not to mind. He frowns when I do my inspection, but of course the doctors say this is reflex. They don't say this to my face most of the time because they are rarely if ever there to talk to, but sometimes I read the notes when a pad is left in his room.

Some of his photos have been missing from his bulletin board, the ones of his red van he drove from NY to California with his sister. I had painted yellow flowers on the back with "Peace" and "Love" on the petals. I told him hippie vans had to have flowers on them. His sister painted this on the side: "I am lost. I went out to find me. If I should return before I get back... please tell me to wait." His friend wrote that on a pad on our refrigerator when he was visiting a few months before the accident. Jameson was Jon's best friend, he said. We haven't heard from him since the accident. I don't know if he knows what happened to Jon, but in three years he has not phoned or written Jon.

Do I sound bitter?

The American occupation forces spend tens of billions of dollars each month to occupy Iraq and destroy Iraqi resistance. Even more is spent to defend the oil that flows thru Iraq. We now own the second largest pool of oil in the known world.

They are closing hospital wards because there is not enough money to pay nurses and aides to care for people like my son and the law mandates a certain proportion of nurses to patients. This is to protect the patients.

I am told that American taxes allocated for the War on Terror cannot used to treat Americans in long term care units at home... only prisoners in secret military prisons.

The War on Terror is not not working. There are many time recently when I definately felt Terror in my heart, like whenever I think of what may happen to my son when they close his long term care unit for undisclosed deficiencies.

Soylent Green is people.

Collaterol damage is people.

My son is people.

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