This is a repost of an article that I wrote for the PLWP:
"My newspaper didn't even mention that April was Parkinson's Awareness
month...why not?" I have been asked this question so many times recently
and I always have the same answer: the news media in any area just
reports on things that it considers news. If you think that PD Awareness
is news, then YOU must make it newsworthy. YOU must make the media in
your area "Parkinson-friendly."
This is not something that happens overnight, but if you really want to
see more mention of PD, NOW is the time to start. Think of this as
addressing an audience, trying to educate & help your friends and
neighbors to understand what it is like to have PD. Take advantage of
the inroads that Janet Reno, Michael J. Fox and Muhammad Ali have blazed
across the TV screen-who can
forget Ali struggling to light the Olympic Torch or Janet Reno shaking
like crazy but still in charge during a recent Oprah appearance or
Michael J Fox testifying before Arlan Spector, obviously
under-medicated?
I am no way in the ranks of these trailblazers, but I must admit to
being uneasy about the way that I appear on camera. I have gained so
much weight since my 2nd pallidotomy and because of the mirapex that I
hate the sight of myself on camera. My face has no expression anymore,
my
voice is gone, I drool on myself and I cry when asked anything remotely
personal. I have taken the TV cameras along with me as a fiber optic
camera was slid up my nose and down my throat and my vocal chords were
displayed for all the 5 o'clock news watchers to see, flapping aimlessly
in
an attempt to vibrate together. I was filmed in hospital gown, shower
cap and footies as I walked into have collagen injected into my vocal
chords and then was filmed unconscious with my mouth pried open &
breathing loudly through my nose. Newspaper pictures of me have included
me getting a metal halo screwed into my head on the occasion of my
surgeries and most recently, a
fetching picture of me in a wild & very obnoxious balloon hat at my last
Parkinson's Awareness Day festivities.
The point of all of these true confessions is that it would much easier
and kinder for me to stay at home with my lift chair & the TV remote and
let my disease take it's course. But the truth is: PD is not glamorous
nor is it pretty nor will I allow it to impose its will upon my life any
more than is absolutely necessary. I push myself to be seen in public,
bouncing off walls, falling down on Main Street, or whatever it takes to
make the public notice that what is happening to me, happens to millions
of others and our voices must be heard.
It all starts when you decide that you are no longer willing to allow
your disease to dictate your life. When you reach that point, you will
find the strength & courage deep inside of yourself...you will find
yourself talking to the media and you will allow yourself to be seen in
the unflattering light that PD forces upon us and YOU are the way to
awareness!!
--
Joan E. Blessington Snyder 49/11
[log in to unmask]
http://www.geocities.com/joanbsnyder/
"Hang tough............no way through it but to do it."
Chris-in-the-Morning (Northern Exposure)
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