MJ Fox's "coming out", and this list's reaction to it, has really served to
underline the difficulty of telling the world what PD is really like. It
seems to me that most of our problems are tied up in that word "tell". We
can talk and talk and talk but as long as we are hiding ourselves away
during our worst periods no-one is going to believe us on the deep emotional
level where we decide how we feel about things. Those of us who can still
function at any level during our "off" periods need to be seen functioning
poorly before the world at large will start to believe, at "gut" level, that
we have a real problem. We need to time our visits to our doctors so that
they see us whilst we are "off", so that our doctors can start to believe
(at gut level) that we have real problems. Perhaps when they believe they
will pass the word along to the media.
MJ Fox is only one man. He has his own life to lead, his own priorities to
meet. His announcement that he has PD has briefly raised the level of
public awareness of PD. If the information that the media is propagating in
response to that interest is sugar-coated that is not MJ Fox's fault - it is
our fault. It is the fault of every PWP who, looking and performing at
their "best" answered their doctor's "How are you" with an "I'm Fine". It's
the fault of every one of us who hides from the public view when "off" or
dyskinetic. It's the fault of every one of us who has carefully tried to
ensure that we are "on" and at our articulate best when meeting the media or
addressing a gathering; thus effectively silencing the voice of PD. And if
PD doesn't speak who is going to know it is there? In short it is nobodies
"fault" - and everybody's dilemma.
If we want the world to know our problems we are going to have to find the
courage to let the world see those problems. Individually we can do this by
not hiding away when things are bad. And perhaps those of us who speak to
public gatherings or the media should start to work in teams, one "on" and
vocal, the other "off" and allowing the enemy a voice and a medium to show
its true colours.
Dennis
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Dennis Greene 49/onset 32 /dx 37
"What lies behind us and what lies before us
are tiny matters compared to what lies within us"
(Emerson)
[log in to unmask]
http://members.networx.net.au/~dennisg/
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