14 Pieces of Parkinson’s

In celebration/commemoration of the fourteenth anniversary of my diagnosis with Parkinson’s Disease, I re-published 14 articles of mine, one a day for two weeks. Here’s the countdown!

1. Ten Years a Slave – I wrote this on the tenth anniversary of my diagnosis, and it includes extracts from Slender Threads. As such it’s an interesting snapshot of strange times.

2. The Longest Wait – A piece I wrote for The Independent in May 2008, a few months after my diagnosis. It’s all about the future, of course, it’s just that the future is now. I wrote no. 2 of my 14 pieces of Parkinson’s for the Independent in May 2008, a couple of months after diagnosis. It’s about the future as it appeared at the time. Also here. Continue reading

Slender threads

(first published 23 February 2012)

On such slender threads
as these are we suspended,
restrained, or mended

Something like that, anyway. Looking backwards is fraught with danger, as the temptation is to remonstrate with oneself at length over a bad choice, over a missed opportunity, over and above any suspicion of self-congratulation for a difficult decision made well. Writing what is essentially a directed autobiography, the work which I am currently avoiding at seemingly all costs, and which has sent me into a frenzy of adverbial apoplexy, is a dangerous thing for someone prone to such analysis. The book, A Young Person’s Guide to Parkinson’s, is in large part an attempt to create what I would have loved to have been able to read when I was diagnosed. I may very well not have liked it, let alone enjoyed it, but the idea of a work which traces its fingers over the outlines and creases which PD created and continues to create in one life would, I think, have stood me in good stead. <--more!-->
The problem with it is simple: in writing it, one needs must retrace not only the outlines of the disease, but those of the ripples it sent, and continues to send, through my life. Sometimes, I find myself shaking my head at my idiocy, my arrogance, my breathtaking froideur. At other times, I think I am one of the luckiest people around (within certain parameters). Both feelings are dangerous.
Recently, I’ve struggled to achieve a few things, mostly because I’m working in spite of people who have nothing vested in my success, nor any clear understanding of what form it might take. But for all the dangers of looking back, there are clear lessons to be learnt. My current silence in blog terms is largely due to the intense energy being invested in this project, which, like most of my writing, has an emotional and intellectual event horizon far beyond the singularity of its merely being written. That and the fact that I need a cup of tea. I’ve been tweaking my shoulder changing light bulbs, panicking about the subsequent pain but finally being assured that it’s only to be expected. It hurts now. I suspect that this is because it knows I’m writing about it. In similar fashion, writing about PD enhances and magnifies its symptoms and their accompanying issues. Already hyper-aware of my body, writing about its travails just perks it up. As I cast my mind backwards, whether simply to narrate the order of things, or perhaps to dig through the murkier parts of my past in an attempt to locate those vital moments where the whole thing changed (an impossible task, but one rendered all the more attractive as a result), the futility of reverse engineering becomes ever more apparent.
On Tuesday, I was driving to Bromley (yes! I can finally drive again …), and trundling around the M25 when I heard a loud bang behind me. I looked into my rear view mirror only to see a small car cut directly across the carriageway, at 90 degrees to the direction of traffic. Somehow it managed to avoid the two large lorries which were travelling just behind me at a reasonably healthy lick. Actually, avoid is an utterly misleading word. The lorries simply didn’t transform the car into a small pile of twisted metal, and the carriageway into a charnal pit. Having missed the lorries, the car drove directly up the bank at the side of the carriageway, crashed through the fence and into the field. The lorries ground to a halt, and the carriageway remained clear and free-running.
There is no clearer indication of the nature of the past. This all happened two or three car lengths behind me. A matter of, well, less than a second. Had I been travelling a little more slowly, just a tiny bit, the car would have clipped my rear. A tiny bit faster, and I would have been oblivious of the closeness of utter disaster. As it was, only the fence was harmed. I hope.
On such slender threads indeed.

A funny thing …

A funny thing happened on the way to the forum. I was doing some gentle sound engineering (and when I say gentle, I mean gentle) at a function when one of the punters said hi (we’d met at a previous function), identifying me by referring to my ex-partner. For a split second, I knew how women feel when introduced as someone’s girlfriend or wife – the manner in which one is identified not as oneself, but as an addendum to another, an adjunct, an extension, a mere optional extra. I may have added value, I may not. What is certain is that in many ways I was an irrelevance. Interesting. The evening continued apace and degenerated upon decamping into a house party of the most random type. Continue reading