A Terrible Beauty

Presentation made to the Annual General Meeting (A.G.M.), March 1998, of the Parkinson's Association of Western Australia.

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 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, it seemed, so minor, a cramped hand and a stiff arm, that my wife Jo had not accompanied me to the appointment, so it was to be a few hours yet before she got to hear that "carer" had been added to her 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. It’s 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.

By the way, 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 would be 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 to return 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 find 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 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 A.G.M., wondering how they are going to cope with meeting their possible future.
*PWP and carers facing the milestone events such as,

o diagnosis,

o starting medication,

o 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 their fellow 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.)

*Carers moving heaven and earth to help their Parkie live a full life, and somehow finding the time and means to live their own lives 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, and

* 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,

* bird watching,

* 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 bundgee 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.

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 A.G.M. 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.

Born in Britain, raised in Zimbabwe, Dennis Greene has lived in Western Australia for the last 28 years. Diagnosed with Parkinson's at the age of 37 he took the opportunity to 'follow his bliss' and began writing. In 2000 he was invited to the United States to edit "Voices from the Parking Lot -Parkinson's perspectives." For reasons he can't quite figure his poetry never mentions PD and his prose is about nothing else.