hi all

sharing a recent exchange with tp

janet


------------

yo

still off

period
heck

thought i was dun

tp wrote, in her journal:
>02/27/02
>
>My second journal in less than 24 hours.
>I'm not in best form now, but am compelled
>to write what I feel.  Ignore the punctuation -
>hear the words
>
>insomnia is bad today (1:30 AM)
>I had a root canal - no pain at all, but
>keeping my jaw open for 2 hours
>gave me a headache
>
>I felt so good afterwards & I knew
>snow was imminent, so visited pm
>one of the 3P's with late stage Parkinson's
>it's white outside now...


why felt good after?


>W. said Pat had slept most of day
>I. was there - cackling that toothless laugh
>pm drifted in and out...

regular pd? orr somethng els?
fast progression!

>I know she knew I was there - I told her
>to blink her eyes to respond. She was slow
>to open & close her eyes, but was with me.
>I reminded her it was ok to let go. I
>asked if she knew she'd be in Heaven -
>she knew, but yet she holds on for
>some reason
>
>I put drops in her matted eyes and wiped
>them with a tissue even the soft tissue
>left a marred red place on her thin skin
>
>Her right hand remains tightly closed with
>her index finger in a pointing gesture
>the hand is so swollen and painful...

painful looking no?

>I don't know why, but I gently pried her
>fingers open and wrapped them
>around the only thing available -
>a near-empty toilet paper roll
>within moments the edema was decreased
>
>I pretended this situation was in control
>as I pleasantly chatted about travels to
>the west with w. across pm's imprisoning body
>I brought her into the conversation
>periodically by asking if she remembered
>her travels - just 11 years ago in 1991 -
>she was diagnosed 4 years later
>
>in 1991 was when I took the job as principal
>at a local elementary school
>in 1994 - PD was diagnosed
>in 1998 - I had to retire
>in 2000 - I had experimental brain surgery
>in 2002 - I drove myself to and from a root
>canal procedure and stopped to
>check on a friend
>
>I watch to see if she is still breathing
>why is she still here? ...

i.e. why doesnt she die and get it over with and release us all from this
agony of wwaiting and watching

>why am I not where she is? ...

i.e.she doesn't deserve this but i do ??

>there are worse things than death ...

there sure are
and i am a witness to the power of our minds and our fears
when the slime simian negative thought distortions are allowed to run rampant

they are sending you one heckuva scare-o-gram
tell them to go hush
if you can

death is not real
we live now and we live on
after our body bags are discarded

you know this in your heart

jc did not die
that was the whole point of the crucifixion
to show that no matter what was done to him
no matter how unfair and undeserved it all was
he did not die

he cannot die
wwe cannot die
we live in god
we are

the simians are grabbing your fears and projecting them onto pm
her story is not your story
she is there for you to learn from
not as a preview

oops
guess i kicked in huh?

------------

tp had also written, in her journal:
>02/26/02
>
>Yes, I'm still alive!  Sometimes you
>just need to break away from the
>computer and take care of business.
>I had to titrate some meds after a
>recent doctor visit, and after a
>bought of intense nausea I'm back!
>There are times when I expect too much
>out of this old body(yes, 51 years old!).
>So I want to share with you some news
>of how my time away from the computer
>has been spent.
>
>I've been evaluating my priorities in
>life. Have you ever done that?  It's
>definitely a draining process.

so how are your priorities changing?
some ebbing some rising?

evaluation is interesting
loss may be perceived and may be feared

when i re-sorted my own priorities
and discovered that the profit material money world
and all desire therein had left me
just walked out the door
with no goodbye
er nuthin
i said
yea!
i am free
i don't need that stuff anymore
i have other things i want to focus on more
ta-ta! toodle-oo!

>It seems that needs locally have been at an
>all-time high lately.  Not a week goes by
>that I don't get a call concerning one in
>need because Parkinson's entered his or her
>life.  And now with war times, those needs
>being funded will probably be put on the
>back burner.
>
>Just some examples of need this past month
>have been:

>1) a young onset Parkie who just separated
>from his wife had his truck to break down.
>He takes his little girl to school and picks
>her up every day.  A family member loaned
>him a car, but it won't haul his scooter
>around so that he can navigate once at his
>destination.  He has no money to fix his
>truck (it has major problems), his family
>is 2 hours away, and he's an emotional wreck!
>I tried to help him through local agencies
>and churches, but money is tight for everyone...

maybe money is tight because that is not the answer here
maybe he will need to find another way to deal with the hand given him

>2) a friend of mine with PD has been having
>a very difficult relationship with her spouse.
>He is in denial or very selfish, as he leaves
>her for 3-4 days every other weekend.  I have
>no answers, only a shoulder to cry on...

his walking away is not a reflection of his feelings for her
except maybe in a double negative way
it's an indicator of his own feelings and fears about himsself
and his own life/death/health/illness

his simian slime buddies are talkin up a storm right now
you betcha

and he's terrified and running scared

>3) One of the P's  - pm - is in her final days.
>I try to visit weekly, and positive and upbeat
>is my intention, but inside my heart cries for
>her.  The final days of PD are far worse than
>any death I can imagine.  She is very aware of
>her situation, yet is imprisoned in a stiff,
>painful body.  Her only means of communication
>is her eyes...

there may be some of your projection here

that scare-o-gram drags all sorts of fears and perceptions to the surface
if she is truly dying and has slept most of the day
she has probably seen your earthly face
as an intermittant part of her fading earthly dreams and not as part of a
nightmare of hers
it is only yours

>4) A new man attended our last support group.
>He's young (probably between 35 and 40),
>still lives with his mother, and every limb
>shakes violently constantly.  He came to me
>at break time at our meeting and saidi he
>would have to go home (his sister brought him).
>I tried to smile and told him I would send
>info about the DBS treatment, thinking it
>might give hope...

you cant be the principal of this new school you have enrolled in
it already has one
you can't fix everyone in it
you can only fix yourself to be as whole as you can
as an example to those others on how it might be done

>I could go on, but you get the picture.
>We have to do what we can while we can!
>Hey, that's not a bad motto for everyone
>"Do what you can while you can."  And that's
>what I've been doing.  I've missed you!

and me too!

i know who you mean
and
that's who i mean too

"tp come home
all is forgiven"

me

------------

and then tp wrote to me, in part:
>... you are so right - I cannot be Den
>Mother to this support group and all my
>cybernet friends especially if I have PD!
>No more projection - just compassion
>Thanks! ...

compassion starts at home
we are all too well trained in the art of
kicking ourselves around the block
jc would not (does not) approve

may i share this if i anonymise (!?!) it?

------------

and then tp wrote to me, in whole:
>Yes to sharing
>That's how we hold each other up

------------


janet paterson: an akinetic rigid subtype, albeit perky, parky
pd: 54/41/37 cd: 54/44/43 tel: 613 256 8340 email: [log in to unmask]
smail: 375 Country Street, Almonte, Ontario, Canada, K0A 1A0
a new voice: http://www.geocities.com/janet313/

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