February 24, 2008

Life Update

Argh, my sleep is going from bad to worse as I labor to finish The Decorated Betsy and also get final work done on the poetry book. I have decided that the title may change after all, since "Mathematician" has nothing to do with me or schizophrenia and neither do "Prayers" so the original title did not exactly evoke images in the mind's eye of what it might be about. But as to that, I have to get the editors and publisher to agree to it. I am thinking about a line from a poem about recovery that is in the book, which goes, in part We Mad Climb Shaky Ladders...I think it has the ring of something interesting. It isn't your run of the mill title in any event, but they will probably go for the alternative I suggested, Eating the Earth, the title of one of the early poems in the book, one of my favorites but a title I've often played with and so unexciting and less evocative to me.

I was speaking of sleep: last night I stayed up all night, and worked straight through from 10pm till 6:30am doing nothing but painting Betsy (which I am told again should have a better title, this time by Karen, but who made her the expert I surely don't know...What else I should call the sculpture I have no idea. Suggestions, anyone?). I did get so much done, with a bent brush made from a metal "GUM" gum stimulator wire with the tip of a brush so that I can paint around a corner, that I am almost finished, but for a few difficult patches left (difficult because contortions are necessary to get to them!) The last thing I need to do is to cover a balloon with papier-mâché and add some heavy duty wire, so that she is shown to be holding a balloon on some "string" -- the reason for her hands in that particular position. At first she was going to be holding a lollipop and a cigarette, but I thought better of the cig and decided for the balloon instead.

As I said, however, my sleep...Yes, indeed, I was trying to tell you about my sleep patterns, well, I cannot sleep more than 4-5 hours a night. Or else I will not, in so far as I refuse to take the second dose of Xyrem for fear of inducing a migraine, from which I have suffered for three weeks straight, up until a monster one last Tuesday, when it seemed to break. But I also haven't let it come back, by carefully not sleeping or oversleeping and by making sure I remain upright most of the day (my headaches are often triggered by warmth and sleeping, oversleeping in particular and standing and walking around sometimes relieves the pain... though this past month nothing helped except Imitrex and/or Ibuprofen, and even so I was in pain more often than not. Worse, when I called my Primary Care doc, I was told he would be out all week and to call back next week; was not offered a covering doctor even! I told the nurse that Dr C could go jump in a lake...I think she was taken aback but I know exactly what was going on. He was there, he just didn't want to be bothered with me, because there is this thing going on with all the DOs in town, THey all hate and persecute me..and he himself has a DO degree not an MD.

Moving onto other people in my life: Lynn is in a decline, probably terminal, though I have the sense that she is voluntarily giving up. Whatever the case, she is now bedridden and stays in a hospital bed in the living room all day, with Cy sleeping in a trundle bed next to her. According to Leila, she knows people for the most part, but thinks she is on a plane or train, going off on a trip to parts unknown...which of course she is in every sense but the most literal. I have not been able to see her for a week and a few days, due to any number of things, but mostly because she has not been up to it, and too many people are staying over there, too many people to wear her out and keep me from being with her. But I hope to go over tomorrow, at least for a short time and say hello.

Joe, too, has had a change. His doctor, the fool, told him that he "will become locked in -- ie unable to move or communicate -- in 17 months, and that he needed to plan for that eventuality. Well, that is absurd, the one thing I know about ALS is that it is completely unpredictable, Joe may become locked in eventuallly, but NO ONE can say when that will be, 6 months from now or 24 or 36 or ten years from now, if he is lucky! THe doc is a stupid stupid cruel man to have made such a ridiculous and hopeless prediction, and it was wholly unecessary. The one result that it did produce that may have been positive (though actually negative) was to have Joe consider what he wanted to have done if/when he becomes locked in, and truly unable to communicate ( or minimally able to, say, by blinking an eyelid only). He told me and his lawyer and cousin that he now wants to be allowed to die when that stage is reached. He felt that he risks being in pain or discomfort too often now, and without the means to relieve it; what would happen when he was locked in and no one knew at all that he was in pain? It seemed to him an intolerable probability...So even Joe will not be with us forever...Indeed, if the disease progresses at the same rate that it has been, he will not be here a great deal longer. To lose both friends is going to be so hard...And I don't know who will ever replace them. Surely Karen can never take anyone's place!

Now for the one bright spot in the past week: I saw a lawyer about the book contract and it turns out that I am allowed to have my own special needs trust formed for me and to put into it anything I earn from the book OR from jewelry or artwork sales, and to have a trustee then dole it out in the form of "special needs" such as art supplies or car repairs, or a car or even, I believe, a vacation, if I were so inclined, though a vacation is the very last thing I would ever want to do. This was perfect, the absolutely perfect solution to my problem, and there it was, waiting for me all the time and I never knew it. It was all legal and legitimate and no one had a right to attach it or take it from me, no matter what, until I died, when the state would then have first dibs on whatever was left. But then, who would care? I surely owed them that much, having gotten so much from them over the years!

Welp, gotta run, I want to do a little more on Betsy before the night is up and I have to striaghten out the apartment, in case I have a visitor tomorrow (the mother of an old friend from childhood). TTFN. I hope to take a picture of the to all intents and purposes finished Betsy - tomorrow when the light is better. I hope to post it then or as soon as I can, along with a few new pictures of jewelry.

Posted by pamwagg at February 24, 2008 08:47 PM | TrackBack


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