Thank you, Dennis.  That is a treasure....

Much love....

Barb Mallut
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From:   Parkinson's Information Exchange on behalf of Dennis Greene
Sent:   Saturday, March 14, 1998 3:46 PM
To:     Multiple recipients of list PARKINSN
Subject:        "A Terrible Beauty"

This is the text of "A Terrible Beauty" as referred to in my earlier
posting today.

Good morning,

11 years ago, almost to the day,  I was diagnosed with Parkinson's
Disease.   As for many others in this room, that moment of diagnosis
was for me one of those moments when the world shifts on its axis,
and nothing will ever again be quite what it was or where it was
before.   The problems that had taken me to the doctor in the first
place were so minor, a cramped hand and a stiff arm, that my wife,
Jo, had not accompanied me to the appointment; so it was a few hours
later before she got to hear that "carer" had been added to the job
description and that her world too was moving in strange new ways.

Little did either of us realise then, how all pervading Parkinson's
is, how much it  would seek to dominate our lives, how much it would
take from us.  Nor did we have the slightest inkling of what we could
and would learn from coming to terms with it.  The progression of
Parkinson's is so insidious, that it is only in retrospect that you
suddenly see, as Yeats put it , that your life has been:

        ".......changed, changed utterly:"      and that -
        "a terrible beauty  is born".

A terrible beauty.  I don't suppose many here would take issue with
"terrible" as an adjective for PD, but "Beauty"?  I must admit that
there is nothing about the disease itself which I would describe as
beautiful.  Pretty maybe - but only in the sense of  "Pretty Awful".
Lets face it - on it's best day PD's a dog.

But I have seen a great beauty in the way in which many in our
community have risen to the challenge of living with PD.  Its almost
as if some people have a hard core, an inner diamond, that
Parkinson's can only touch to polish.  I have seen this "inner
strength"  in both PWP and in carers,  in the newly diagnosed and in
"old stagers".

It manifests itself as, among other things, humour, resilience,
patience, humanity, empathy, concern for others, endurance and
determination.  I believe that for those people who have this
strength, it has as much influence on the shape of their lives, and
the lives of those around them, as PD itself has, and underlying it,
the one common ingredient,  its foundation and also its driving
force, is courage.

Now I know, as do we all, that courage is not confined to the PD
community, or even, indeed, to the world of the chronically ill,  (in
fact I'm told that some quite healthy people, with no sick relatives,
have been known to show strength of character, though why they would
need it escapes me).   I  also know that not everyone touched by PD
responds courageously, but I, for one, have never before belonged to
a community where courage is as widely spread or as readily shared,
as in our own community.

It is so "normal" amongst us, that paradoxically it becomes almost
invisible even among ourselves, and yet for me, moving in and being
accepted by such company is one of the most profound, and  positive
experiences of my life.

        So for me at least a terrible beauty has been born.

 BTW I'd like to stress at this point that I am not one of those who
say that they are actually glad that they have PD.  I freely
acknowledge that Parkinson's has taught me things about myself that I
need to know.  I have even written:

I didn't come here for this,
                this touching of part of the infinite.
Moving at speed leaves little time for reflection,
                and now I am slow.
I gain despite myself.
                I should have come here for this.

Which is fine except that the price is very high, and others are
forced to pay large parts of it.

 I welcome the gains - but not the means by which they are achieved.

But  back to courage.  In 11 years of PD I think I have heard
discussion on just about every aspect of living with the disease.
Every aspect that is except courage.

I have been made privy to people's:

- sleep patterns - bowel movements - and sex lives;
- what they eat - when they eat it - and why they eat it.

I have discussed:

- dyskinesia, dystonia and diarrhea;
- pallidotomy, pain, and positive thinking,

but not courage.

So I'm going to take this opportunity to redress the balance a
little.

Acts of  courage come in all shapes and sizes but most of them fall
into one of two types.  There's the meet it headlong - charge the
guns -  "Once more unto the breach dear friends", type, and then
there is the War of Attrition type, the one Kipling wrote about in
"If" when he said:

"if you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them:  'Hold on!'"

I think most people, should they ever think of courage in relation to
PD, would immediately think of it in terms of the War of Attrition
type, but I believe both types are well represented in our ranks, so
I
am going to look at charging the guns first.  BTW you can all relax,
I'm not going to embarrass anyone by naming  names, but if the cap
fits ----  wear it with pride.

Examples of courage under fire include.

-A newly diagnosed PWP and their carer simply coming to terms with
their new reality
-The same couple bravely fronting up to their first seminar or
support group meeting or indeed AGM,  wondering how they are going to
cope with meeting their possible future.
-PWP and carers facing the milestone events such as,
        - diagnosis,
        - starting medication,
        - early retirement,
        - Those moments when they realize that the PD symptoms have moved
up a notch.
        - Families making decisions about surgery.
        - Going through surgery
        -PWP and carers reaching out to help each other in support groups or
individually.
        -American PWP ignoring their faltering feet and voices to lobby at
the highest levels of their government for funds for PD research.
        - Dealing with societies sometimes cruel judgments.

(If I can add a personal note here - I have never been so proud of my
daughters as the day, aged 16 and 9, they stood beside their grossly
dyskinetic father and "stared down" a huge crowd of high school
students who had actually formed a ring to gawk.)

And then there is the other courage, the one that says "hold on"; the
one that  hides itself so well because it comprises:
        - PWP doing the hard things, the things that take time and effort /
the exercise sessions / the voice training programs;  knowing that
they are fighting a rearguard action but unwilling to let PD walk all
over them .
        - Carers watching their loved ones suffer and keeping their concern
hidden so as not to add to "their" Parkies burden.
        - Families making decisions about surgery.
        - PWP going through surgery
(Yes I know those where on the other list. They belong on this one
too.)
        - PWP refusing to give in to the limitations imposed by the menage a
trois of tremor, rigidity  and bradykinesia, not to mention all their
nasty little offspring.  People  getting on with their lives despite
dystonia, and dyskinesia.

I know of one 73 year old, who after 26 years with PD is still:
- golfing from his electric cart / learning Windows 95 /doing odd
jobs round the house / building patios /  falling off ladders / going
dancing with his wife.  He's a bit upset that he can no longer go
boating.   I know of another, a lady of 80+ who still does go
boating.

PWP are out there doing it all. Gardening / computing / studying /
cooking / bowling / lobbying governments / holding up the queues in
supermarkets and simply getting on with life.  In fact about the only
activity I have not found PWP involved in is bundjee jumping, which
is surely as clear an indication as you can get that whatever else we
may have lost, we haven't lost our minds.

        - And , last but not least, carers moving heaven and earth to help
their Parkie live as full life as possible, and somehow finding the
time and means to live their own lives too.

Tennyson wrote:

Tho' much is taken, much abides; and tho'
We are not now that strength which in old days
Moved  earth and heaven; that which we are we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

Ladies and gentleman, it has been my privilege today to be the guest
speaker at our AGM.  It is my privilege every day to be counted among
your number. Thank you for your friendship and support both in the
past and in the future, and thank you for listening to me today.

Dennis.

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Dennis Greene 48/11
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http://members.networx.net.au/~dennisg/
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