WAGblog

Update

It has been a hectic month, especially the last two weeks, with Dr O holding up everything by working on her commentary at the last minute. She didn't get her parts back to me entirely until the Saturday that ended the week just before the manuscript was due. When she sent it back -- I already had parts of it to edit and put into the ms but those were relatively short and I had been waiting for the introduction essay, knowing it would be much longer -- I immediately went to work, frantically editing and typing and cutting and pasting to put it into the manuscript the way she wanted it, but without the various little typos she had made. Then, on Tuesday morning, after staying up all Monday night, I had it done. I wanted to go through the poems, check them out and see if they truly were worthy of being in the book, but I knew for certain that if I did so I would start to rewrite them at the very least, if I did not take them out entirely. And the point of the book is not necessarily to have written the best poems but to have written ones that illuminate schizophrenia. I had to physically restrain myself -- by sealing up the envelope -- from giving the ms another examination and Karen took me to UPS to send it overnight to NJ where the press is that does the series of "illness books." Then I allowed myself the rest of March to veg out and simply enjoy myself.

St Martin's is also willing to take a look at it, tho they don't publish straight poetry but maybe they would be interested in a format like ours, which isn't just poetry but has an overarching pedagogical purpose as well as "entertainment" as poetry. But I won't hope too much there as my editor has warned me, though she did want to take a look and said, "We'll see."

My jewelry making is continuing by leaps and bounds, even though it has been only 7 classes in 9 weeks (one snow day and one holiday). I have made about 200 pairs of earrings to sell at a flea market that starts in the spring in the next town over and about ten necklaces (! made the chains the beads are on, some complicated with little flowers and swirls etc). It's the wirework that really interests me, less so the beading, which seems less skilled, though some of the necklaces I've seen beaded are quite masterful. But I'd rather work with the metal and pliers, and so I continue to make the linked beads, with the chain made in-between each bead. That also means I can make the whatchamacallit earrings -- chandeliers? -- which are essentially chain-linked beads. But I'd like to learn more than I will have after the final class this Wednesday. Balam, the teacher, says he may teach another class out of his studio this summer, and if he does, and I can afford it, I'll take it, even if it is only for four weeks. I may as well learn as much as I can locally, as I doubt I will be taking any classes farther afield, though there are some in other nearby towns.

Joe. Ah, well, the one good thing is that today he wrote me an email assuring me (since Karen had told me the opposite, putting words into his mouth) that he may find things difficult, but oddly enough he is not suffering, not even with his speech and eating difficulties. (He said he NEVER suffers.) As to those, his speech is almost unintelligible now, though Karen and I can usually figure out what he is trying to say, or with repetition can guess at it. Most other people have no idea. And as of Monday or Tuesday a kangaroo pump is going to be delivered so that he can (or when it becomes necessary we can) tube feed himself, over the course of the nighttime while he sleeps, or during the day while he sits quietly in his chair resting. He wanted to do it himself, without the pump, but he can't hold the syringe up long enough to let it flow in by gravity, nor can we lean over him and hold it for him (the tube is too short). And you are not supposed to force the food in by pushing the plunger. So the pump will have to do. Joe has lost 45 pounds since last year, most of it involuntarily and now weighs what he did at his lowest point in high school, which I think upsets him. But he finds eating so difficult, can only drink or eat thickened liquids like thick soups or pureed vegetables, that he is not getting enough calories anymore. Plus, in ALS there is hypermetabolism where you simply burn off all you eat and more, so you lose weight no matter how much you eat. I hope Joe has not reached that state yet and that he is only losing weight because he cannot eat the normal amount of calories...Otherwise, I dunno how much he can feed himself to stay the same weight; I know he does not want to lost any more. In fact, he always liked himself obese! He thought it softened him, made him like a teddy bear. He did look cuddly and gentle that way, I admit. But everyone who sees him now tells him how fantastic he looks...sort of weird, considering how ill he is now.

Cy and Lynn (C and L) are getting on in years and Lynn is in constant pain, sometimes, if not frequently extreme pain. Last week it was so bad that she was screaming and had to be taken to the emergency room, where they did nothing essentially but tell her to take a drug she already had. This, after making her wait, sitting without her husband in the patients' row, for four hours! She is lucky it wasn't 8 hours...I know the ER they went to and it can be horrendous. I would have counseled them to go anywhere else, but as she admitted, she wouldn't have listened at the time, because her doctor had sent her there. But that doc doesn't work at that hospital at all and knows apparently nothing about their ER. She clearly didn't understand much, because Lynn was told, once taken in, that "we do not do pain management here" in no uncertain terms.

Lynn's level of pain scares me, because it makes her sometimes talk of not wanting to live any longer, of a life of constant pain being too hard. Lord knows I don't want her in pain! God knows I want a cure or something to help her, and I have not given up hope that something will be found. I think she and Cy are nowhere near aggressive enough in looking for answers, but simply do what the doctors suggest and wait for the next appointment, don't call inbetween appointments if something doesn't work and don't complain if they don't think the doctor is doing something helpful. I wish to god I knew what to do. I wish I were a different person, their real daughter perhaps, and had the right to try to intervene. Lynn calls me her "daughter" but we both know I am not really...and there are many things I cannot do that a blood daughter could. I think there MUST be some NON-drug method of treating pain that could be used -- a TENS unit, or nerve block or some kind of epidural if that is what it would be, something to block the pain signals from getting to the brain, from whereever they are originating -- her shoulder or elbow, or her gluteus maximus (a site of mysterious agony that defies all investigations as to the cause -- not that I think many have been done).

Cy, my wonderful friend who picked me out at folkdancing, where I was sitting in the chairs and rocking, and came up to me instead of avoiding me, and said " you know, I pray that way" and won my heart, Cy is worn out. I think both whiplash from a rear ending in the car a year and a half ago, or two years ago, combined with Lynn's illness a year ago in Israel, have conspired to take the life out of him. He has lost the twinkle and sparkle in his eyes. He is now using a cane and he no longer teases me or asks for a hundred hugs and kisses. He rarely smiles. And that is so not like him. He cries when Lynn's skin tears -- the prednisone has made it so thin she bruises without provocation and then simply brushing it roughly causes it to tear and bleed. And he naps it seems every chance he gets. Whenever I go there he is napping, or about to, or eventually decides to. I don't know who will go first, but I don't think either one can live without the other, I really don't...and I am scared for the survivor, and scared of their pain.

But Joe and Lynn and Cy are all alive and holding their own for now, and nothing is imminent so far as I know. So I won't borrow trouble, anticipating what might happen tomorrow, but enjoy today and leave tomorrow's anxieties for the future, where they properly belong.

Posted by pamwagg at April 1, 2007 04:44 PM