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Date: 27/07/97 14:08
From: janet paterson
Subject: Re: Hard Times
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hi george

you wrote
>Several recent posts to this list have been complaints,
>not complaints about the list, but complaints about our
>common condition, Parkinsons.  The person complaining often
>sounds half-apologetic about his or her condiion.  Taken
>all in all this list has well over 1000 PWP in various
>stages of affliction, from the trembling green recruit
>clutching for any word of assurance that things won't
>really become as bad as rumor has it, to the grizzled
>and battle weary veterans who know the truth first-hand.

george

this is a subject i've been mulling about for a long time
during those enforced pauses when my meds have kicked out
and i can do nothing much but rest and think

i do believe that everything that happens to us
happens for a purpose
good or bad
all experiences are given to us to learn from

if i can accept this
and expect life to be a difficult challenge rather than easy
then i find my attitude changing from
'poor me! why is life so unfair?'
to
'okay, okay... so what in heck am i supposed to be learning now?'

when a couple of friends described me as courageous
my sister's reaction made me laugh:
she shot back,
'she doesn't have courage, she has parkinson's!'

isn't maturity supposedly recognising reality
and dealing with it to the best of our ability?
and if it's a lesson
why not make it as positive a learning experience as possible?

admittedly
my perspective on the future of this disease
[as a relative newbie of 9 years] in 1997
is a far cry from the 'grizzled and battle weary veterans'
but then again, i can't predict the future

why sour today with self torments about me and pd in 2007?
i might be hit by a truck tomorrow!
and then would have 'wasted' the joys of today

>And yet, the number of posts complaining about our situation,
>bleak as it may be, are relatively few.
>Are we really that brave or stoical?

my soapbox theories about our society's brainwashing
now rush to the fore, again!

it's not generally considered 'acceptable'
to talk about negative emotions
it's regarded as a sign of weakness
not being a good sport
not keeping your chin up
not letting your side down
something to be ashamed of

>The Brian Collins's, Camilla Flinterman's, Charlie Meyer's,
>.... have found a new avocation in helping all of us.

i value this 'connection' more than most
in my isle-olation
but i also look on this 'extended cyber family'
as a miracle of our time
maybe this 'family' is the real lesson here
not pd
who knows?

i know i have no regrets
and wouldn't change a thing in the curriculum so far

>The recent few complaints have concerned sleep...
>I don't move or turn over in my sleep and more than two hours
>in the same position (left side, right side, or back)
>would cramp my muscles ...

i've never seen this mentioned on the list before
but it's something i've noticed as a major change in my sleep habits
since diagnosis or since medication
i think patricia yothers and i compared notes on this privately
[in fact it was the core of the 'stubby log-rolling tail']
i wonder if it's more common than just the three of us?

>I said "no," except that they don't work anymore.  
>He smiled at my answer.

now this gets me a tad riled
a condescending or bashful smile is of no use to anyone
might i suggest getting a second opinion?

it occurs to me
that if female hormone levels
can affect the meds or the symptoms so dramatically
why not male hormones as well?
i believe that we all, male and female, have varying amounts
of all the hormones, male and female,
as part of our individual chemical bouillabaisse

>My final words, for now, concern time. If there is any
>single symptom I would call characteristic of my PD
>it is my altered perception of time. Time just doesn't
>pass more slowly or more rapidly; it is just out of control.
>"Hours creep. Days fly."

the idea of days and months and years flying by
ever faster as we get older
i think is universal
not due to pd

if the hours creep
all the more time to extract some sweetness out of them
it's all around us


with love from your syber-sis

janet


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Date: 05/08/97 00:00
From: janet paterson
Subject: Re: Hard Times
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hi charlie
welcome back!
your report was interesting, and appreciated.
do keep us advised of your progress

>I think it is important that we bitch a little (or a lot) once in a
>while here. I have written here about healthy and unhealthy denial and
>while it is not productive to wallow in our misery there are a lot of
>times that I feel miserable and damn it, I have a right to feel sorry
>for myself-

i'm intrigued by this
for some weird reason, i can't generate any resentment or anger
over the fact that i have pd, and i know i'm no saint!

my initial reaction was certainly terror and panic at diagnosis
but that reaction was solely based on ignorance
which has been dealt a terminal blow by this list

>when I am unable to go some place on my own
>when I wake up at 4 AM with muscle cramps
>When  I watch the woman I love burdened by my lack of mobility

forgive me, charlie,
i'm really not trying to trespass on anyone's area of expertise
but i have to ask you
do the above comments reflect your feelings that:
you 'should' be able to ...
you 'shouldn't' have to ....
and
she's bound to feel ....
and i 'shouldn't' ...?
are you still struggling with acceptance?

do you think acceptance might be harder for a man than a woman
due to our societal brain/washing/staining in re
yardsticks of worth/success/strength?

how does my talking about my seeing my diagnosis of pd
as a possible 'gift' strike you?
loony?
saintly?
bizarre?

here is a little christmas tale that illustrates
one occasion of a 'light' going on in my head in re acceptance:

------------------------------------------------
with my designer background
i've always been a pretty picky present wrapper
no visible scotch tape, patterned paper matching
colour coordination to die for

last christmas my sister and i were behind schedule as usual
but this was really behind!

it was christmas eve - and i was still wrapping presents
i was indulging in a drink or two which didn't help with the drug kick-in
but i was also into the dreaded 'hormone freeze'
and i still had 6 presents to wrap

my sister was keeping me company while i worked
but had her back to me, having sworn under oath not to peek,
while i struggled to cope with paper and tape and ribbon etc.

one package took half an hour to complete
i then ahuffled over to the tree
be-e-en-n-t down, groaning like i was 149 instead of 49
and attempted to position the treasure artistically

suddenly, reality hit me
luckily the shops here here are pretty liberal with inner tissue paper
and outer decorative boxes and pretty gold elastic ties
so
wrapping the next package consisted of:
stuff it in the box,
slap some tissue on it,
mash the box lid down on the sucker,
snap the damn elastic on it,
and throw it at the damn tree

now THAT's wrapped!!!
we laughed and laughed and laughed
so much for pride

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for whatever it's worth...
[i hope you're not regretting coming back!!]

with love to you and yours

your syber-sis

janet


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Date: 06/08/97 16:26
From: janet paterson
Subject: Re: Hard Times
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hi charlie

>Your perspective is helpful.
>I cannot make the cognitive shift
>that you make to feel that PD is a gift.

my perspective/background is quite different from yours
i've essentially been single
for  ...whew ... almost 20 years ... yikes

i tend to be a bit of a lone wolf[ette] anyway
and time alone to think and mull [not in a glum way]
has always been precious to me

i've gone through a difficult period
with business difficulties and personal losses
over the past six or seven years
and i guess the 'unavoidable pauses' of being 'off'
forced me
to take even more time
to really think about my situation
and do a lot of wondering and reading and growing

isn't it funny!
i commented recently
on the confrontational tendencies of our society
[all or nothing thinking,
my way or the highway,
if something's wrong,
then someone's got to be at fault, etc]
and i almost caught myself up in that trap again
of attempting to sway you to my views!

sort of like ashleigh brilliant:
~~~
please keep your mind open
until i can get a little more of my argument into it
~~~

>Thanks for stimulating me to think through my ideas
>and to put them in writing.

i appreciate the time you took to reply
and now, of course, i'm going to start mulling all over again!

with love to you and yours

your syber-sis

janet


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Date: 06/08/97 16:25
From: janet paterson
Subject: More hard times
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hi george

>On the matter of gifts. They come unexpectedly.

you could apply that to all aspects of life
we can plan and hope and attempt to harness the future
till we're blue in the face

but the reality is
we're not the ones in the driver's seat

none of us knows what's around the next corner
or over the next hill

all we have is today
there's no point in worrying about the past and the future
it's a waste of precious time and energy

~~~
>The best laid plans of mice and men
>gang oft agley
>and lea'e us naught but grief and pain
>for promised joy
~~~

exactly!
but a question is
who made the promises
and created the expectations?

i also like a toast of burns' [i believe]
that my glaswegian grandmother, the esteemed janet paterson, used:

~~~
here's to us was like us
and de'il the yin
~~~

my translation/spelling may not be exact
but i believe that the intent is
"here's to us and our 'kindred'
and to the devil with the rest"

i interpret it further as
"the only opinions that matter
are your own and those of the ones you love"

worrying about the opinions of others
is just another waste of precious time and energy

>it has also forced me to look, unblinking,
>into the mirror of self-revelation
>until I see myself as I am

this is one of those "aha!!" moments,
which reminds me of maya angelou's words:
[when she has an "aha" moment, it's an "AHA" moment!]

~~~
We, this people, on this wayward, floating body
Created on this earth, of this earth
have the power to fashion for this earth
A climate where every man and every woman
Can live freely without sanctimonious piety
And without crippling fear
When we come to it
We must confess that we are the possible
We are the miraculous, the true wonders of this world
That is when, and only when
We come to it.
~~~
from A Brave and Startling Truth
~~~

i consider it a rare privilege to be able to participate
in a phenomenon such as this list
and pd was part of the road i was taken on to get here

thanks, george

your syber-sis

janet

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