---------- Forwarded message ----------
Date: 28 Nov 95 16:56:50 EST
From: George M. Andes <[log in to unmask]>
To: barbara patterson <[log in to unmask]>
Subject: the insider
 
11/28/95
 
A View from the Inside
 
        Last summer I had lunch with an old acquaintance whom I had not seen for
thirty years.  He and I had worked together, and, if my memory is correct, had
even shared an office for some time.  We were brought together for the occasion
by a mutual friend.  As we were leaving the restaurant after lunch, I suddenly
stopped in the middle of the floor, tottered unsteadily, caught myself with my
cane, hesitated, and took a short step, stumbled, caught myself again, and froze
in place.
        My brain had reacted, in its usual fashion, to a slight drop in the
dopamine level in my bloodstream.  It, and I, had lost control of some of the
muscles necessary for walking, balance, and posture control.  Not all, just
some; I didn't fall over, or slump to the floor.  Like the battlefield commander
who sees his lines of communication with his soldiers about to fail, my brain
sent the same urgent message to its battalion of skeletal muscles as the
commander would have to his front line troops, "Stay where you are and await new
orders; hold your present positions until field communications are restored."
Even dopamine depleted brains retain clear survival strategies.
        The point of this incident, however, is not the way my brain reacted to
the tiresome and common occurrence of a sudden dopamine deficiency, but the way
my friend reacted to my dopamine deficient behavior, my stopping and my
stumbling.  He took my arm and solicitously asked how he could help.  Then he
asked me a simple question I had not expected, and had never even considered.
We had not spoken at all about my Parkinson's Disease at lunch; he was an
outsider.  I, an intelligent insider, was asked a single, simple, direct,
unexpected, penetrating question by an intelligent outsider, and faced with the
unexpected my mind momentarily tottered and stumbled as it searched for an
answer.
        The answer was:  No.  The question was:  When you lose your balance, do
you feel dizzy, does the room turn around?
        That is a perfectly sensible question for an outsider to ask.  My friend
was trying to connect his experience with mine.  His only experiences with
falling and stumbling, due perhaps to spinning on a swing, an amusement park
ride, vertigo, alcohol, or the flu had all been accompanied by unpleasant
symptoms like dizziness, spinning rooms, faintness, and nausea.  The internal
condition of his body - a sudden drop in blood pressure, a confused inner ear,
too much alcohol, whatever - had given his mind an altered view of the external
world.  His mind had not been able to match the present novelty of an
unpredictable spinning room with its previous experience with better behaved and
less tipsy rooms, and he had lost his balance.
        It may seem obvious to us insiders with Parkinson's Disease that our
external world is no different than that of the general public.  It may seem
obvious to us on the inside that we differ from our friends and neighbors only,
at least mostly only anyway, in that our volitional connection between the
inside and outside is, to put it mildly, not in great shape.  The strings that
connect our "in here" with our "out there" are often tangled and broken.
        Doubtless, the old adage, "Where there's a will, there's a way," stills
hold some grand cosmic truth for us Parkinsonian insiders in matters of the
spirit, but, in the ordinary matters of just getting on with life, even though
we may muster will enough to climb the highest mountain, for all our wanting to
there are times when we cannot tie a shoelace, or pick up or let go of a piece
of paper, or speak clearly into a telephone mouthpiece.  We see as others see;
we feel as others feel.  We can always hear the music, but we cannot always
dance.
        The point of all this is that my friend's question made me aware, once
again, that I am different, that my Parkinson's has changed me.  It has changed
me in ways I know about and in ways I do not know about.  It has changed me
physically, socially, and emotionally.  It is a conceit and an illusion if I say
to myself, "It is only my hands, or only my legs, or only my balance, which is
affected.  I, myself, am still the same."  That cannot possibly be true.  We,
all of us, insiders and outsiders alike, are but the sums of our many little
selves, of our abilities and our inabilities, of our skills and our
clumsinesses, of our haves and our have-nots.  I do not speak French; I would be
different if I did.  I sing very poorly; I would be different if I sang well.  I
am married; I would be different if I were not.  I sometimes have difficulty
navigating doorways;  I would be different if it were not so.
        What should I have said to my friend?  Did he want an explanation?   Did
I want to give him one?  Should I have passed his question off with, "No, the
problem is only neurological (ONLY!), it's no big deal.  It happens once in a
while.  My pills will take care of it."  Should I have given him our standard
story beginning with early symptoms and ending with the pharmacology of
neuro-transmitters, and a plea for a donation for research?
        What do I say?  Who am I?  A patient?  A sufferer?  A victim of fate?  A
tragic hero?  A loser?  A winner?  Only one of many?   An object of scorn, of
pity, of sympathy, of admiration?  A nuisance?  My old self?  My new self?  Just
dear old, sweet old, silly old, tiresome old, George?
        I am none of the above.  I am a husband, a father, a grandfather, a
brother, a brother-in-law, an uncle.  Even though my parents and grandparents
have been dead for many years, I am in many ways still a son and a grandson,
especially since I was named after my maternal grandfather to placate a strange
fit of stubbornness on his part and restore family harmony.  I am a
Congregationalist, a Democrat (mostly), a democrat (always), a left-hander, a
friend.  My vocation is school teaching; my avocation is talking too much.  I
also have Parkinson's Disease, my constant companion for thirteen years.
        Rewrite of last sentence: I also have been given the gift of Parkinson's
Disease.  I have been given many gifts:  intelligence, loving parents, a strong
sense of duty and of honesty, a good education, a wonderful wife and children,
good health, an easy going disposition.  Although I did nothing to merit them,
they are mine, and I enjoy them with a patrician's ease.  All my life I have
accepted these unearned blessings as if I were a favorite of the Gods.  I have
no basis, therefore, for complaining about my gift of Parkinson's Disease which
is at its best a puzzlement, and at its worst a curse.  Nonetheless, of course,
I do complain, and loudly, when my tremor is finally beyond all patience.
Life's like that on the inside.
 
George M. Andes
June 1995