^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses 70 deg. F
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Hi friends,
ON PARADE Part1 ( draft )
by Ivan Suzman, founder,
Greater Portland (ME) Parkinson's Support Group
Until quite recently, I have tiptoed around discussing my 14-year
battle against Young Onset Parkinson's Disease with those in
Portland's growing community of gay, lesbian, bisexual, questioning
and transgendered people, and our allied heterosexual friends.
Most do not know any of the types of Parkinson's Disease enough to have
even a slight clue about what orchestration is going on behind the
scenes
of my life. Most do not realize that YOPD is often fatal.
Now that I have appeared publicly in a wheelchair, going the entire
Pride
Parade route last Saturday, with the direct help of seven friends, I
wish to
place this first draft of some of my thoughts on the "web", for Maine
Gaynet's
readers, and a few select friends.
I am considering writing a series on how Young Parkinson's affects my
life, and
invite comments on that idea. I particularly wonder where to publish my
story.
In the past, when I have dared to try to outwit the disfiguring,
unwelcome
things that can and do happen to my body, I still had enough control to
count on making public appearances without complicated scheduling of
details.
Being a singer in the Maine Gay Men's Chorus, the way I look to our
audiences is just as important to me as is the sound of my voice.
I cannot afford to totter on the risers, to have fingers which tremble
more than slightly, or to show signs of a Young Parkinson's
facial mask. But the relentless march of the illness is taking its toll.
Any experienced PWP (Person with Parkinson's) knows exactly
what I mean when I mention the hidden additional preparations
involved in going out. There are many times when we choose to
avoid being seen by the public. Eventually, we lose that choice.
I had to wear winter tights, gloves, and long wool stockings,
even when on stage under hot spotlights, this past weekend.
These are signals of what could be end-of-life difficulties.
Surgical intervention, still experimental, is looming much too
closely, but is already on the agenda for consideration at
my appointment on Thursday at Massachusetts General
Hospital.
Saturday was dramaticallly different from every other day
of the year for me. It was the day when the people in my community
take the opportunity to be seen in the Pride Parade, part of
our city's celebration of gay diversity..
I was determined to participate, despite all the exhaustion, muscle
tightening and pain I had endured last year. I had walked the entire
parade route. That was too much! It had taken me four days to recover.
This year, I consciously made the effort to raise my spirits, courage
and
smile. Friends rented a wheelchair, to get me from the chilly,
wind-whipped
seaside starting point, ust below Monument Square, to the searing heat
of the tarred road that curves through Deering Oaks park at the
end of the route.
I had never before used a wheelchair in my small, historic city of
stone buildings, brick sidewalks and either tarred or
cobblestone-covered,
narrow downtown streets.
At age 49, it was still possible, until last September, when my
core temperature started to give in, and hypothermia took over,
to conceal much of what Young Onset Parkinson's hass been
doing to me. I happen to be blessed with a rugged, youthful appearance.
I am both lean, and well- tanned. I easily and frequently pass
for a man 10 years younger.
So I went outside my limits. Two friends, Barbara and Mike,
volunteered to push me the whole way, if needed. We chose
Mike to start me off. Barbara and her friend Marlene were to
join us along the way. And Jean was planning on finding me
at "the Oaks," with a back-up ride home if I was too tired to
wait for Mike to go all the way back to the starting point to
fetch the trusty Blazer.
When we lined up for the parade, we were already feeling
tired and a little uncertain. It had been difficult to locate the parade
marshalls. The wheelchaired people and friends had never
met to organize a parade contingent.
Suspended in front of me from a shoelace around my neck was
an eye-catching sign that Anne, one of my home-care workers
had made. It displayed three boldy-colored hand-drawn images
of wheelchairs, along with the words, "PRIDE WHEELERS."
But we were feeling eery, not only bcause I had received e-mail
letters from three very disabled Mainers who are too ill to get out even
to watch a parade, but also because Mike and I were very last parade
group to line up, until the Aids Project people finally appeared.
About 15 minutes before the start, two older gentlemen came along,
and lined up to my right. Although they were there to join in Pride
Wheelers, I hardly noticed them just at that moment.
I was busy. I suddenly was trying, all at the same time, to take three
medications,
figure out whether to wear a sweater, wrestle on some gloves, hold up
my Pride Wheelers sign, and most of all, push up my facial
muscles into a smile, despite an off-period that I could feel coming on
quickly.
Plus, squeezed behind my right hip, was a tiny box of old
"No Parkinson's"pins. The box, at that moment, was poking painfully
into the corner of my back.
I wondered if I felt proud, and looked proud, or if I was too fidgety to
be properly representing the wheelchaired people who are not
usually noticed. I had seen two others in chairs in Monument
Square. I wondered how many dozens could not make it.
Suddenly the UNUM group in front of us took off. Mike's hands
flew down to the brakes before I could even find them,. and we
were off and rolling.
END OF PART 1
