George A....
I must tell you, George, I'm sitting here literally stunned at your comments
about living with a chronic degenerative disease.
In my opinion this is what it really IS like and I've never seen "life" as we
know it expressed so bluntly, so bleakly, eloquently, or so well.
For those not burdened by what we live with each day, to understand what
anyone living with a chronic degenerative disease is really like, you've put
our collective experiences into the words it takes to enlighten them.
From my heart, sincere thanks...
Barb Mallut
[log in to unmask]
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From: Parkinson's Information Exchange on behalf of George Andes
Sent: Thursday, December 25, 1997 9:31 AM
To: Multiple recipients of list PARKINSN
Subject: Re(2): I'm new
Dear Ron -
Continuing the discussion about pd and its effects: If people were
polled at random as to what they usually think about when not thinking
about anything in particular (when their brain [or mind] is simply
idling), you would probably get a variety of stunned looks, some sheepish
smiles, and many embarassed confessions . My guess would be that the top
ranking replies would be money, sex, what to cook for supper, worrying
about family members, worring about the future, and money, and sex.
If the poll were taken only of those of us with a chronic disease the
answers would probably be much the same, but the distribution of these
answers might be quite different. Right up there with money and sex would
be a worry about the future, financially, physically and emotionally.
What will I become and who will take care of me?
Pd is a gift from the Giver-of-all-good- things, an unwelcome and
unpleasant gift to be sure, but a gift nonetheless. We pwp's are
privileged above others. We share our front row seats in the theater of
the future with those with muscular dystrophy, diabetes, Lou Gehrig' s
disease, and other less well known conditions. Alzheimers patients are
excluded; they appear to lose conscious contact with reality.
We pwp have a condition which affords us a delicious conscious descent
into the realm of total physical incapacity. The mills of the Gods grind
exceeding low but exceeding fine. Pd gives a new dimension to the meaning
of the word relentless.
Furthermore our pd does not affect our cognitive abilities. Pd is a
surgeon with a very sharp scapel operating on an unanesthized patient. We
are awake on the operating table and painfully conscious of every cut as
one-by-one the surgeon removes our ability to write, to walk, to sleep, to
sit still, to engage in the ordnary bits and pieces of life and on and on.
We are like Poe's protagonist victims, Fortunatos watching in
disbelief
as the last bricks are cemented in place entombing him forever.
One reason I think of my pd as a gift is that it relentlessly holds a
mirror in front of may face and forces me to look into it. It is the
mirror of self awareness, the mirror of truth, the mirror that shows me as
I really am, not as I might like to think of or imagine myself to be.
Denial is for beginners and has no place here. The emotional skills
needed to live gracefully with pd are purchased at great price, the price
of self-knowledge. They must be relearned daily, and every day I am less
than perfect, and every day I stumble where once I went smoothly.
Acommodation without surrender is easy to say, but difficult to
practice.
[Reading that over I see how poorly I have expressed myself, but I will
let it stand.. ]
George Andes
64/15
