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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/
>**************************************************
>
>
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Week 3 December 2001, Week 2 December 2001, Week 1 November 2001, Week 5 November 2001, Week 4 November 2001, Week 3 November 2001, Week 2 November 2001, Week 1 October 2001, Week 5 October 2001, Week 4 October 2001, Week 3 October 2001, Week 2 October 2001, Week 1 September 2001, Week 5 September 2001, Week 4 September 2001, Week 3 September 2001, Week 2 September 2001, Week 1 August 2001, Week 5 August 2001, Week 4 August 2001, Week 3 August 2001, Week 2 August 2001, Week 1 July 2001, Week 5 July 2001, Week 4 July 2001, Week 3 July 2001, Week 2 July 2001, Week 1 June 2001, Week 5 June 2001, Week 4 June 2001, Week 3 June 2001, Week 2 June 2001, Week 1 May 2001, Week 5 May 2001, Week 4 May 2001, Week 3 May 2001, Week 2 May 2001, Week 1 April 2001, Week 5 April 2001, Week 4 April 2001, Week 3 April 2001, Week 2 April 2001, Week 1 March 2001, Week 5 March 2001, Week 4 March 2001, Week 3 March 2001, Week 2 March 2001, Week 1 February 2001, Week 4 February 2001, Week 3 February 2001, Week 2 February 2001, Week 1 January 2001, Week 5 January 2001, Week 4 January 2001, Week 3 January 2001, Week 2 January 2001, Week 1 December 2000, Week 5 December 2000, Week 4 December 2000, Week 3 December 2000, Week 2 December 2000, Week 1 November 2000, Week 5 November 2000, Week 4 November 2000, Week 3 November 2000, Week 2 November 2000, Week 1 October 2000, Week 5 October 2000, Week 4 October 2000, Week 3 October 2000, Week 2 October 2000, Week 1 September 2000, Week 5 September 2000, Week 4 September 2000, Week 3 September 2000, Week 2 September 2000, Week 1 August 2000, Week 5 August 2000, Week 4 August 2000, Week 3 August 2000, Week 2 August 2000, Week 1 July 2000, Week 5 July 2000, Week 4 July 2000, Week 3 July 2000, Week 2 July 2000, Week 1 June 2000, Week 5 June 2000, Week 4 June 2000, Week 3 June 2000, Week 2 June 2000, Week 1 May 2000, Week 5 May 2000, Week 4 May 2000, Week 3 May 2000, Week 2 May 2000, Week 1 April 2000, Week 5 April 2000, Week 4 April 2000, Week 3 April 2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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