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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/ >************************************************** > >