A few weeks ago I wrote of my tentative steps back into blogging about living with PD. I say “tentative” only because I’m uncertain about whether my return is in fact an actual return to the same kind of blogging I had been doing for some 8 or 9 years – albeit from a fresh, hopefully more learned perspective. Or should I take my writing to a different platform – a different focus altogether? Or perhaps not at all. These are some of the things I’ve been grappling with.
Over time, I talked with family, friends, PwP, and other bloggers and writers. I’ve read and received a number of pieces that speak to some of the questions I have. I wish I had definitive answers but I don’t.
There was, however, one voice that reached out to me that I wanted to reference here. A few months ago, I came across a piece written by a man from London (UK) named Jon Stamford. We’re roughly the same age and have had PD for a similar length of time. He’s a scholar, a writer and long-time advocate in the UK for PD.. He’s written numerous books, blogs, and edited an international magazine called ” On The Move ”. That’s where our paths crossed a number of years ago when I was invited to submit an article for consideration for publication.
In March of this year, he wrote a blog that somewhat startled me entitled “Signing Off”. While I found the title and general tenor to be at times discouraging, I thought he very accurately captured the thoughts and feelings of many living and struggling with PD today. I know it was one voice that called out from the sidelines to me as i grappled with the decision to continue.
As you’ll see, Jon and I have arrived at different “conclusions” but I wanted to acknowledge his contribution to the debate. Here’s a large excerpt from Jon’s blog, reprinted with his permission. The battle may be over for Jon, but the war goes on.
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.
.…. 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.
For more on Jon, see his PD Biosketch at: :http://jonstamford.com/parkinsons/pd-biosketch/