It was a thoughtful and moving talk.  Thanks for sharing it with your U.S.
friends.
-----Original Message-----
From: Dennis Greene <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Saturday, March 14, 1998 6:51 PM
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.
>
>**************************************************
>Dennis Greene 48/11
>[log in to unmask]
>http://members.networx.net.au/~dennisg/
>**************************************************
>
>