^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine land of lighthouses 33 deg. F dreary and rainy and
treacherous and dark
***********************************************************
On Fri, 26 Dec 1997 01:55:33 +0800 Dennis Greene <[log in to unmask]>
writes:
>I woke early this Christmas morning -
>I looked under the tree. Nothing had been added during the short
>night. If Santa had got this far south, I must have been listed with
>the naughty boys. Once more there was no mysterious parcel marked
>'To Dennis'. Another year gone, and still he hasn't brought the
>cure. I'm used to this too, and I don't like it either.
Dennis-- Thank you. You have inspired me to get off my tired bottom and
get motivated, so folks, here we go with what I hope will get us
MOVING...........
A CALL TO ACTIVISM from a young PWP who is sick of being sick and
tired>>>>>>>>>>>
Dear Listmembers,
We younger PWP's have so much anxiety, so much loss of future.
Dennis's message says a lot about how I feel at times. Santa hasn't
delivered me a cure either. And that really bites.
The emotions he shows us are almost never seen by the public. Some of
us might be socialized to isolate ourselves and feel hopeless. WE
younger PWP's have an important task ahead of us to avoid being drained.
We must work to get beyond the grief, to somehow try to channel that
energy into courage. This is VERY hard work.
My only suggestion insofar as Santa's undelivered gift is to be MORE
VISIBLE. It means pushing, even when the "PUSH" is almost gone. I guess
what I have been given is "chutzpah," the NERVE to be out there, pushing
for a cure, whenever I can muster the energy.
A moving example of this "chutzpah" is Joan Samuelson. She is so
powerful in the video , "The Politics of Medicine." Helen Mason
recommended it to the list, so I ordered it from the Parkinson's Action
Network (1-800-850-4726).
She is a wonderfully beautiful and chutzy lady, a courageous woman,
with passion and YOUTH. You look at her in the film, and say to
yourself, she is too young and wonderful to have a terminal disease like
PD. You say to yourself, isn't there SOMETHING I can do, too??
Millie Kondracke, in the same film, is just incredibly real and
moving, as she tries to walk in the hospital corridors. Millie does NOT
deserve PD. None of us do.
So, Dennis, can you SOMEHOW make connections, and try to get FILMED?
A local TV station could do a special on you and your family. I want to
see your face on a film--if you are as passionate on film as you are on
the computer, the film has got to be a SMASH hit!!
I remember seeing Alan Bonander in a dyskinesic state, talking about
cultivating roses, on TV about two or three years ago. TV is where it's
at-a picture is worth a MILLION words. He helped me to avoid moping, and
start doing. So I formed a Parkinson's Support Group. I spoke at a
convention about fighting for the Udall Bill. I found myself in the
Governor's office this past April, as he signed a PD Awareness
Resolution.
I guess I had to prove to myself that I could channel my energies for
the good of all.
We young PWP's must prepare ourselves for visibility--especially the
vocal and active ones.
I feel that first and FOREMOST, we must break the stereotype that PWP's
are helpless and that life is draining away with no hope on the horizon.
We must, I feel, project HOPE.
Here in Maine, I am hoping to get on the WCSH-TV show that is promised
for January. A call-in show Or maybe Joan, or Johnny Cash, or Muhammad
Ali. Or the Pope. Elton John-how about a Candle in the WInd for
Parkinson's???.
Romona in Tennessee, however painful it is to be the mom of
Parkinsonian kids, PLEASE try to get on TV. A documentary or public
access station for starters--or think BIG- like last April when Stan
Houston was trying to get us on Oprah.
If we can show the world that PD has YOUNG faces, we, whose futures are
in doubt, whose agony is long and painful, who are wearing down at an
unfairly young age, then maybe we really can WAKE the slumbering Jonas
Salk or Madame Curie, the person who will find the underlying cause of
Parkinson's.
I guess I feel a little better now that I've thrown out a few ideas.
Like Helen Mason said to me, I want the cure YESTERDAY.
AIDS activists work both inside the halls of the FDA, and on the
streets. Unfortunately, we PWP's have to somehow be rolled in
wheelchairs, or stumble along, or assemble somewhere VISIBLE, or walk, or
a combination of all of the above. That's where our caregivers can join
in.
Are there any ROCK STARS out there reading this? Friends of rock n roll
stars? Johnny Cash, can YOU help us?? PLEASE! ! How about a rock
concert or whatever kind of music, to raise money for research??
I am too young to be so sick--I'm not complaining, I'm just trying to
PUSH us along faster. I hope we will be more POWERful as our VISIBILITY
grows.
P>O>W>E>R:
Parkinsonians Organized With Energy and Resourcefulness!
Parkinsonians Only Want Equal Research!
Parkinsonians Outwit Washington by Energetically Responding!
>From a PWP and Activist for a Cure,
Ivan Suzman, 48/10
Portland, Maine
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