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--------------F3F806B84C6B6B91E4EE7E56 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit You do write beautifully. The very clear picture you paint is my picture, the double-bind is constant (or is it a catch-22?). Mostly, I go the cheerful, up-beat route--as you do-- but every once in a while I want to scream "its still here, its progressing (what an erroneous word!} and the future is a nightmare. Why can't you see?" to all those who love and support me. Nancy Shlaes (61/4) Rager wrote: > .......or how I was totally tactless, and almost lost a friend. It was a > cool night. My friend and I were out for a walk with our attendant > illnesses. My Parkinson's Disease was still a shadow, a dark looming figure > that was keeping in my step. The diagnosis was only a few months old and I > was still having blinding flashes - pictures of future pathos - me, drooling > by a dusty window in a soggy wheelchair. I figured I would be in this > picture in, oh, about a year's time, maybe a few weeks, whatever.....who > could know? We were well into our talk on healing and recovery when I > dropped all diplomacy, like clown ladies used to drop their knickers, and > said, something like,"Well, that's fine for you. You can hope for recovery, > even expect it, even count on it, but not me. For me it's down hill all > the way. In fact you could say that right at this moment I'm the healthiest > I'll be for the rest of my life." > My friend was not impressed. Given the crassness of my remark, > admittedly drenched in self pity, it still foreshadowed a reality of the two > of us on different recovery tracks: she would certainly recover physically > from her illness; and I, I would need to do a lot of work to recover my > spiritual sense of direction. And so I did. As in former postings I've > referred to my ventures into the self help library, I've actually begun to > find some spiritual security in taking responsibility for myself and my > attitude. Problem: I've been getting too good at it. > Twice in the past two days I've heard from Parkinson friends that they > have been having trouble reminding their friends, colleagues etc. that, > sorry, we know we look pretty good, our attitude is terrific, even humerous > from time to time, we smile a lot, there may even be a bit of a spring in > our shuffle, but we've still got it......and it's getting worse. > I teach high school English at a school for the performing arts in > Ottawa. It's a fabulous place to spend my daily time - creative, warm, > supportive. But lately I've been getting these strange comments about how > good I look and how happy everyone is to see me looking so much better. > Better?? Well I suppose $300.00 drugs per month will do that....yes.... and > I am affirming my feisty spirit every day..... but what do you mean by > better? > I was grateful for the article that appeared in the (Scottish) Herald > because it put it all so well. If there was bias in it, it was a positive up > beat slant, but nonetheless factual about the progress of the disease, and > the correspondent options of medicine and surgery. I showed the article to > my Department Head. He's a good and supportive man. But after he read the > article, he did not want to talk about it. I will assume that that is > because he cares for me and has suddenly received the full impact of what is > actually riding in my saddle with me. (Many people just don't know, and I > can't blame them.) > These are tough and deadly times for education in Ontario. And without > going into the whole mess, this man has given me his classroom as my own > teaching classroom for next year, and has insisted that he take the worst of > the lot of crappy rooms for himself. So now I feel bad. Perhaps I went too > far. Perhaps I should have continued to fake good health for a while > longer. It is he, really, who should be in the better classroom. He's the > Head, he needs to be at the hub of the activity. But he won't hear of it. > The discussion is closed. > This classroom is closer to everything I need, the phone, the bath room, > the office, the vcr storage room. I mean, it's really a gift. But I'm > having trouble with the price. Perhaps I am still ashamed I have this thing, > that I have to have special consideration because of it. I've always found > taking other people's kindness difficult. It makes me feel even more > vulnerable, a little at their mercy. It's going to take some getting used > to. --------------F3F806B84C6B6B91E4EE7E56 Content-Type: text/html; charset=us-ascii Content-Transfer-Encoding: 7bit <HTML> You do write beautifully. The very clear picture you paint is <I>my</I> picture, the double-bind is constant (or is it a catch-22?). Mostly, I go the cheerful, up-beat route--as you do-- but every once in a while I want to scream "its still here, its progressing (what an erroneous word!} and the future is a nightmare. Why can't you see?" to all those who love and support me. <P>Nancy Shlaes (61/4) <P>Rager wrote: <BLOCKQUOTE TYPE=CITE>.......or how I was totally tactless, and almost lost a friend. It was a <BR>cool night. My friend and I were out for a walk with our attendant <BR>illnesses. My Parkinson's Disease was still a shadow, a dark looming figure <BR>that was keeping in my step. The diagnosis was only a few months old and I <BR>was still having blinding flashes - pictures of future pathos - me, drooling <BR>by a dusty window in a soggy wheelchair. I figured I would be in this <BR>picture in, oh, about a year's time, maybe a few weeks, whatever.....who <BR>could know? We were well into our talk on healing and recovery when I <BR>dropped all diplomacy, like clown ladies used to drop their knickers, and <BR>said, something like,"Well, that's fine for you. You can hope for recovery, <BR>even expect it, even count on it, but not me. For me it's down hill all <BR>the way. In fact you could say that right at this moment I'm the healthiest <BR>I'll be for the rest of my life." <BR> My friend was not impressed. Given the crassness of my remark, <BR>admittedly drenched in self pity, it still foreshadowed a reality of the two <BR>of us on different recovery tracks: she would certainly recover physically <BR>from her illness; and I, I would need to do a lot of work to recover my <BR>spiritual sense of direction. And so I did. As in former postings I've <BR>referred to my ventures into the self help library, I've actually begun to <BR>find some spiritual security in taking responsibility for myself and my <BR>attitude. Problem: I've been getting too good at it. <BR> Twice in the past two days I've heard from Parkinson friends that they <BR>have been having trouble reminding their friends, colleagues etc. that, <BR>sorry, we know we look pretty good, our attitude is terrific, even humerous <BR>from time to time, we smile a lot, there may even be a bit of a spring in <BR>our shuffle, but we've still got it......and it's getting worse. <BR> I teach high school English at a school for the performing arts in <BR>Ottawa. It's a fabulous place to spend my daily time - creative, warm, <BR>supportive. But lately I've been getting these strange comments about how <BR>good I look and how happy everyone is to see me looking so much better. <BR>Better?? Well I suppose $300.00 drugs per month will do that....yes.... and <BR>I am affirming my feisty spirit every day..... but what do you mean by <BR>better? <BR> I was grateful for the article that appeared in the (Scottish) Herald <BR>because it put it all so well. If there was bias in it, it was a positive up <BR>beat slant, but nonetheless factual about the progress of the disease, and <BR>the correspondent options of medicine and surgery. I showed the article to <BR>my Department Head. He's a good and supportive man. But after he read the <BR>article, he did not want to talk about it. I will assume that that is <BR>because he cares for me and has suddenly received the full impact of what is <BR>actually riding in my saddle with me. (Many people just don't know, and I <BR>can't blame them.) <BR> These are tough and deadly times for education in Ontario. And without <BR>going into the whole mess, this man has given me his classroom as my own <BR>teaching classroom for next year, and has insisted that he take the worst of <BR>the lot of crappy rooms for himself. So now I feel bad. Perhaps I went too <BR>far. Perhaps I should have continued to fake good health for a while <BR>longer. It is he, really, who should be in the better classroom. He's the <BR>Head, he needs to be at the hub of the activity. But he won't hear of it. <BR>The discussion is closed. <BR> This classroom is closer to everything I need, the phone, the bath room, <BR>the office, the vcr storage room. I mean, it's really a gift. But I'm <BR>having trouble with the price. Perhaps I am still ashamed I have this thing, <BR>that I have to have special consideration because of it. I've always found <BR>taking other people's kindness difficult. It makes me feel even more <BR>vulnerable, a little at their mercy. It's going to take some getting used <BR>to.</BLOCKQUOTE> </HTML> --------------F3F806B84C6B6B91E4EE7E56--