Signing off

For the last seventeen years I have had Parkinson’s (PD). Yes, I know I probably had it before diagnosis. It’s not a competition. There are no yardsticks to compare each other’s suffering. Simple fact – some get it worse than others. I consider myself one of the luckier ones. But it has been one of the enduring agonies of this condition that I have watched friends fall by the wayside. The journey is littered with the lost, comrades in arms who drew a weaker hand than I. Few things are more heartbreaking than to see close friends tortured beyond repair, their voices fading into the long silence.

Some shade into darkness quicker than others. Some are tortured by the private agonies of dystonia, others dance to that ridiculous self-parody of walking that we call dyskinesia, forced to endure the cruel laughter and humiliation, ultimately too weary to explain to the disinterested. Even for those untouched by such vicissitudes, there are still further miseries in store.

Okay I have had some of these in moderation – by which I mean sufficient to recognise the symptoms but too little to gauge their current path or project a future trajectory. I fall into that category – I have the full range of symptoms, but expressed at a relatively low level such that, beyond a general low-level malaise, none of the symptoms of PD have taken top billing, nor even a starring role. Like I said, I feel lucky. I feel empathy, sympathy or whatever for those in the majority who suffer more than myself.

The last seventeen years of PD have yielded some eight books, loosely based around life with the condition, but often veering into less focused tracts on politics (sorry, I can’t apologise enough), music, philosophy and so on. Some of you bought my books and I thank you for that. Writing is, both at its best and worst, a lonely way to occupy yourself. Short of book signings, press releases, chat show interviews and so on it amounts to solitary aeons at the keyboard. Those sequinned soirees among the glitterati are the province of the JK Rowlings of this world, not hacks like myself. Anyone who was ever going to read my books has done so by now. They will also probably have noticed the same features of my writing, appearing like leitmotifs throughout. And there’s the rub. I have said everything I wanted to say, offered every crumb of advice I could conjure, and cracked every joke I know.

I could carry on, re-treading and re-purposing old ground for what may be a new audience. Not a bad way to spend my time. And, with a little effort, I could easily delude myself that this still represented a service to our PD community. Truth is it doesn’t.

For me, PD is a journey but not in the way you might think. It is no mere progression and intensification of symptoms, though those are a parallel path. No, the journey as such is the transformation of blind optimism into realism. The journey essentially of acceptance.

For many within the PD community, acceptance is a dirty word. I know plenty who might argue that acceptance amounts to an admission of defeat. I don’t see it that way. To my mind, acceptance is the realisation that I cannot change everything. Some things will be beyond my ability to alter, whether by healthy eating, medication, exercise and so on. Acceptance for me represents the acknowledgement that energy spent railing against the injustice of PD is not energy well spent. Fighting PD is sapping. In my book, acceptance is a redeployment of one’s resources where one can reasonably expect benefit. In the same way Russia burnt its cities ahead of the Wehrmacht’s approach, prepared to concede ground and better use the resources they had to preserve the country. So it is with PD. Don’t fight the battles you can’t win.

It has taken me some seventeen years to grasp this fundamental truth, to reach this personal nirvana. Acceptance is the path to survival not to defeat. I don’t want to ‘fight’, kicking and screaming against this unseen enemy. There are better ways of spending that energy.

I have written books, given lectures, been part of panels, workgroups and advisory boards. I’ve advocated till I’m blue in the face. I have been a neuroscientist, a researcher, writer and adviser. Sure, others have done more. But I have done all I can. And at the end of the day I’ve put in my shift. I’ve given all I had. And now I want to turn away from writing about PD. It’s time for younger men and women to spell out their agenda, to raise their banners and and to lead their armies.

This, such as it is, is my baton to pass on to you. Run. Run like the wind. There is a whole world out there. Life is the ultimate journey and we never pass the same way twice. Thank you for reading. My watch is ended.