Dare we hope?

On a dreary, wet Saturday in March 2001, I found myself at Murrayfield with some friends, watching Scotland narrowly achieve victory against those titans of world rugby, Italy in the Six Nations Championship. I remember nothing of the game, or unsurprisingly anything about the aftermath.

Edinburgh is a great city for a night on the booze, especially after a six nations match. Rose street would be stacked with fans from both teams. There were some good pubs in and around the street. The place was simply alive with drunk, but happy fans and a good night usually meant that after the first three, the rest of the night would become a blank.

So whilst watching Scotland at the time was a form of painful penance, the after-match pub crawl made up for it. Scotland was dire back then. Not that, it has to be admitted, we are currently much better or more capable of striking fear in our opponents. Ask Wales or Ireland. But we can score some lovely tries

However, I do remember a sad incident that happened whilst we waited for the match to start. The banter amongst friends and opponents alike was interrupted by an announcement over the PA System. It told us that Gordon Brown, former Scotland player and something of a legend, was in a Hospice and was expected to die shortly. 

He had been ill for some time with non-Hodgkin Lymphoma and this news wasn't unexpected. But it was sad, he was affectionately known as 'Broon, fae Troon" and was considered one of Scotland's best-ever forwards, having also toured three times with the British Lions.

Suddenly a very loud and clearly emotional man bellowed not far from my left ear "c'mon big man, ye can dae it". Clearly, he believed that beating advanced-stage cancer was simply a matter of willpower. He turned to a friend "I luv that man, he was a brave fighter on the pitch".

Which was true enough, he'd thumped a South African on the famous British Lions 1974 tour, so hard that the poor man's glass eye had popped out, resulting in mayhem as everyone scrabbled around looking for it before it was stood on. Brown was no coward. If you were, the South Africans would eat you alive. 

They didn't even get a nibble out of Broon.

But what is it with terminal illnesses and the way the tabloids respond to them when they involve the famous? They inevitably and predictably refer to them as heroes, lauding their 'brave or heroic battle' against the illness they knew would eventually kill them.

Certainly, those were the headlines when Brown died.

And PD celebrity sufferers are frequently referred to in the same way. It's maybe coincidental, or probably more because I didn't pay attention previously, but since my diagnosis, Celebs seem to be dropping like flies with PD! And they are all referred to as 'brave' or 'heroic' and the struggle against the progressive decline as a 'battle'. All very martial.

And I would say somewhat patronising and unhealthy. Now I promise you this isn't sour grapes on my part. Like just about every PD sufferer, my battle is private. I get no column inches in the press. Which tbh is a relief. Who in their right mind, wants to be famous? 

However, I respect those celebs who come out in public about their condition and it's not their fault that our press seems unable to find any other language. But here's the problem, what is the opposite of brave? Cowardly. Opposite of battle? Surrender. So we are either brave or a coward. We are either fighting the battle or just quitters.

And when has the press ever described someone with cancer or PD or any other severe condition as a coward? Or a quitter? How could they? So all we seem left with is 'brave' and 'battle'. 

Such black-and-white language ignores the complexity of human life. It creates a binary expectation. And is this fair? Do the Celebs (and if he was ever to read this, I'm sure Jeremy Paxman, PD sufferer, would go puce at this description of his status!) want the pressure of these expectations, when what they would probably prefer is understanding, and the right not to be brave or heroic? The right perhaps to appear scared?

Besides what options do we, or they have? If we don't battle, we are left with self-pity. So in the main, we battle, but this doesn't make us heroes. Or even brave. It simply makes us 'us'. Being brave is when you have a choice and you pick the hard one. It's not when there is no choice and you simply bow to the inevitable.

Some days even I feel up for the battle. Trying to fight my decline, refusing to give in to pessimism and despair. Willing, even, to spit in the eye of the disease.

But other days I feel powerless, dreading the future. Depressed. Just wishing it would all go away. Resentful.

And Angry. Angry at having it and angry at the idea expressed on that cold, wet miserable Saturday afternoon in Murrayfield, that all things can be beaten, if you only try hard enough. Leaving the obvious conclusion, if you die, or with PD fail to get better, it's your fault. You didn't try hard enough.

Every PD sufferer I have met seems brave to me. But this is a war we can't yet win. No amount of determination or willpower will help us defeat this disease. We might have a few victories on our road to defeat, but the condition will beat us in the end. It'll strip many of us of our dignity, our individuality.

Our humanity.

As some of you might have guessed by now, I'm not feeling especially positive about my lot at the moment. And PD isn't the worst you can get.

But we can dare to hope.

It's science that has the power to win this war. It will take skill and determination. An awful lot of money. And some bravery from sufferers willing to risk the disappointment of taking part in a failing trial. Parkinson's would appear particularly vulnerable to the placebo effect.

Two days after that match in Edinburgh, Gordon Brown died. It was the 19th of March. Within rugby circles at least there was genuine sadness. 

Due to the Lions winning all bar one of their matches, which ended in a controversial draw (the ref was South African, I'll let you draw your own conclusions), the 1974 Lions who toured South Africa, were known as the 'Invincibles', They played 22 matches in what is generally considered to be the most brutal rugby nation. And by brutal, I mean violent.

South Africa was a dirty team of thugs, who played ugly rugby, but frequently won. They haven't changed.

Sadly whilst the 1974 Lions team was invincible, Broon fae Troon wasn't.  

But let me finish with a poem from another rugby player who also died too soon, this time an Englishman, Andy Ripley 2007:

        Dare we hope? We dare

        Can we hope? We can

        Should we hope? We must

        We must, because to do otherwise is to waste the most

        Precious of gifts, given so freely by God to all of us.

        So when we do die, it will be with hope

        And it will be easy

        and our hearts will not be broken

This seems to me to hold true for PD victims as much as cancer sufferers, or indeed others with life-threatening or changing illnesses. 

There is indeed hope for those of us with PD, I can dare to hope. 

Perhaps we can 'dae it'.