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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.



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<HTML>
You do write beautifully.&nbsp; The very clear picture you paint is <I>my</I>
picture, the double-bind is constant (or is it a catch-22?).&nbsp; 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.&nbsp; Why can't you see?"&nbsp; 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.&nbsp; It was a
<BR>cool night. My friend and I were out for a walk with our attendant
<BR>illnesses.&nbsp; My Parkinson's Disease was still a shadow, a dark
looming figure
<BR>that was keeping in my step.&nbsp; 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&nbsp; a soggy wheelchair.&nbsp; 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?&nbsp; 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.&nbsp; You can hope
for recovery,
<BR>even expect it, even count on it, but not me.&nbsp; For me it's down&nbsp;
hill all
<BR>the way.&nbsp; 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>&nbsp;&nbsp;&nbsp; My friend was not impressed.&nbsp; 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&nbsp; work to
recover my
<BR>spiritual sense of direction.&nbsp; And so I did.&nbsp; 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.&nbsp; Problem: I've been getting too good at it.
<BR>&nbsp;&nbsp;&nbsp; Twice in the past two days I've heard from Parkinson
friends that they
<BR>have been having trouble reminding their friends, colleagues etc.&nbsp;
that,
<BR>sorry, we know we look pretty good, our attitude is terrific, even
humerous
<BR>from time to time,&nbsp; we smile a lot, there may even be a bit of
a spring in
<BR>our shuffle, but we've still&nbsp; got it......and it's getting worse.
<BR>&nbsp;&nbsp;&nbsp; I teach high school English at a school for the
performing arts in
<BR>Ottawa.&nbsp; It's a fabulous place to spend my daily time - creative,
warm,
<BR>supportive.&nbsp; 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??&nbsp; 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>&nbsp;&nbsp;&nbsp; I was grateful for the article that appeared in&nbsp;
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.&nbsp; I showed the
article to
<BR>my Department Head.&nbsp; He's a good and supportive man.&nbsp; But
after he read the
<BR>article, he did not want to talk about it.&nbsp; 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&nbsp; in my saddle with me. (Many people just don't
know, and I
<BR>can't blame them.)
<BR>&nbsp;&nbsp;&nbsp; These are tough and deadly times for education in
Ontario.&nbsp; 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.&nbsp; So now I feel bad. Perhaps
I went too
<BR>far.&nbsp; Perhaps I should have continued to fake good health for
a while
<BR>longer.&nbsp; It is he, really, who should be in the better classroom.&nbsp;
He's the
<BR>Head, he needs to be at the hub of the activity.&nbsp; But he won't
hear of it.
<BR>The discussion is closed.
<BR>&nbsp;&nbsp;&nbsp; This classroom is closer to everything I need, the
phone, the bath room,
<BR>the&nbsp; office, the vcr storage room.&nbsp; I mean, it's really a
gift.&nbsp; 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.&nbsp; I've
always found
<BR>taking other people's kindness difficult.&nbsp; It makes me feel even
more
<BR>vulnerable, a little at their mercy.&nbsp; It's going to take some
getting used
<BR>to.</BLOCKQUOTE>
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