This started out as a three paragraph post. I got carried
away. It's about WebRings and personal stories and my asking
you some very pointed questions about tomorrow and cures and
if you are willing to help. I'm not out to confront anyone.
A large number of you have worked very hard on funding, on
giving us a voice. This isn't really meant for those who
have given far more than their share in time and effort.
It's meant for all the rest of us. (But you can read it
anyway.)
There is a part of setting up WebRings that I don't like -
having to turn folks and their websites away.
The idea behind the PWP webring is that someone, perhaps a
newbie, perhaps one of the millions who have PD and just sat
down at the computer for the first time, will be able to
find us and start down the trail of finding out that they
are not alone in this PD world of ours, that others know and
feel just as they feel, that we are willing to help them
adjust to the PD life.
Remember that first week when the doctor put a name on the
things that were going wrong inside you? Remember the fear,
the anger? Remember how your spouse, your children, reacted?
"Parkinson's? Isn't that like MS or something?"
"Didn't Cheryls' Uncle die of Parkinson's?"
"Does that mean Dad can't work anymore? How can he buy me a
car?" (Oops, that was from my oldest daughter. Sorry)
That's what the sites who are part of the PWP WebRing
represent: knowledge about PD and/or personal experience
stories. As much as I would love to link up personal
websites of all the people on this list, unless you have
something PD related it won't help the goal of the WebRing.
I hate turning people away. Your websites are wonderful, I
love the pictures, but think what someone following the
webring to find out about Parkinson's will think when they
land on your site and never even see the word - they will
wander away from the ring, thinking it has nothing to do
with THEIR problem, never knowing about all the information
available to them, never realizing that is is OUR problem.
There are 1600 people on this list. There should be 16,000.
(Did I just hear Barbara P. pass out?) The WebRing is one
way to reach them, it's how we show our strength, to form a
vocal accord behind our desire to get funding for research,
for a cure. We need to make it strong, we need to make it
represent our story, we need it to show the face of PD.
(Let me pull the soapbox over here a second...)
Did you ever hear how loud the AIDS people scream? "In your
face" politics got them millions to spend in research, and
I'm behind them 100%. I don't doubt for one moment that they
need and deserve every penny. So do those folks wanting
money for cancer research, for MS, for spinal cord injuries,
for all the other ills that come from being human, that make
our lives less than what we want it to be. I don't want
their money.
I want part of the $12 billion it cost to build a new
bomber. I want some of the billions we are spending to build
reactors in North Korea. And to get that I need to make the
oil rig worker in New Orleans, the CEO in Chicago, the
waitress in Oshkosh to know what Parkinson's is, what it
does to my life, the impact it has on our society and how
close we are to a cure.
They teach grade school kids about AIDS and Chicken Pox.
Fifty year old CEO's think PD is contagious. There's
something terribly wrong with that.
Ali standing before the flame gave the whole world an
education in PD. A search of the web brought people medical
information about PD ("Only 1% of people over 50 have
Parkinson's.")("Recent research into fetal cell transplants
was halted because of the moral issues involved.") The web
search gave very little of the personal story because there
was no place to look.
"The PWP WebRing, design to bring information AND personal
experience to those who travel around its circle." That's
the goal. So as much as I would like to link sites with
family pictures, what I really want is for you to tell your
story. When you were 20 how did you see your life at this
age? What did you think you would be doing? How did PD
change that? How does that make you feel?
What was it like when you first found out that you had PD?
What did your spouse do, your kids, your boss, your friends?
Did you cry? (I did.) Scream? (Yes) Become angry? Deny that
anything was wrong? Call your doctor every bad name you
could think of?
Tell about your medications, your operations, your reasons
for laughter, what you think about when you stand at the
foot of your bed in the dark of night, when the house is
quiet and you are left totally alone with your thoughts.
Write it all out and place it on your site. Give a piece of
yourself to the world. They NEED to know, they MUST know.
The face of PD can no longer be that rigid mask hiding in
rest homes and bedrooms. We MUST be seen. We MUST be heard.
Because if we are to get funding, if we are to find a cure
in our lifetime, we have to speak out - now. That oil field
worker, the waitress and the CEO all need to feel our tears,
they need to hear our screams, because the reflection of
those emotions are what will get the attention of Congress.
Remember the book, "And The Band Played On,"? Someone read
that, took the cry to HBO who made a movie which flooded the
minds of the masses who called the lawmakers who rushed to
pass bills which funded millions into research which has
"almost" given us a vaccine against AIDS and "almost"
brought a cure to the table.
Bottom line - Myself and two others are in the PWP WebRing.
Out of 12 who said they wanted to join, four did the
paperwork. Two of those I rejected because they have nothing
on their sites about PD. That leaves a Ring of three.
Out of 1,600 people, all whom have internet access and thus
have access to free web pages, only three website owners
think this is important? I don't believe that. I can't
believe that 1,597 people don't have a story, that 1,597
assorted PWP and caregivers can go "Hummm, interesting,"
CLICK, DELETE and walk away.
A person who worked very hard on the Udall situation told me
about this apathy. I didn't believe her then. I don't
believe it now. In the middle of all the pains and pills we
face everyday, we can all find a little time to work for a
possible cure - not for our grandson, not for the next
generation, but for US. I don't believe we are all ready to
fold our tents and go home, to admit defeat half way through
the battle. Every day there are news stories about new
drugs, amazing results in experiments concerning PD. We see
them on the news, we read it here on the list. We are so
damn close, my friends. The cure is just right there - and
all we have to do is travel from here to there. We have
never been closer.
We've lost a lot of good people. Alan was someone I will
never forget. There are two others who are very close to me,
two that I met here on the list and back in the Prodigy and
AOL days before there was a list, who will probably not last
out the year. PD won't kill them, it never kills. But PD
related problems will take them away. I would hate to see
them die a week before a cure is announced.
So I'm asking you to fight for them, for me, for yourself.
I'm asking you to take me up on my offer to set up your
webpage so you can tell your story. Swamp me in request,
I'll get the others involved. Together we can do this. A
thousand webpages. A thousand stories. A thousand people
saying, "I'm sick of this and I demand a cure! I'm sick of
Congress spending millions on moving sidewalks in Altuna
when our lives can be changed by those millions, so we can
get up and run again, so we can make love and go on long
walks and see our grandkids grow up, so we can have normal
lives. All it takes is Congress finally funding the research
that could give us a cure for Parkinson's."
Are you going to do it? Or will you hit "Delete" and wander
in to see what's on TV?
Maybe telling your story won't make any difference. But
maybe it will. Maybe someone a year from now will look at
your website, go "Humm, interesting," and move on to play
interactive bingo. But maybe someone will stop because your
story touched something inside them, maybe that single
person will be the one who will make PD a footnote in the
history books.
But maybe not. I guess we will never know unless you are
willing to tell your story. Are you willing to take that
chance?
Someone has already questioned what I have to gain out of
all this. Caught me cold, put the barrel of the gun right
there on my forehead and made me tell the truth. Okay, I
admit it. As ashamed as I am to tell you this, I'd like to
see my three grandchild grow up. I'd like to teach them to
love horses as much as I do. I'd like to go on long walks
with my wife. I'd like to throw all my pills in the trash
and wake up in the morning feeling wonderful. Pure
selfishness.
You don't know me and I don't know you, either. But we have
something in common, you and I, something neither of us
want. Let's work together to get rid of our problem. Maybe
we won't succeed - but at least we tried.
--
Jerry Finch
The Official PWP Dumpster Gang Hideout
http://www.newcountry.nu/pd/
