Slender Threads

People are good sometimes. It happened like this. I’m waiting in the sorting office for the man to admit he can’t find this item, even though he hunteth hi and lo, and aa chap comes in, picks up his parcel, rips off the packaging, and reveals a good-looking tome wrapped in cellophane. he smiles, I enquire as to its type, he explains it’s a picture book, I ask  what he does, he replies that he’s a graphic designer, and I, without so much as a second thought, ask him if he’ll do me a cover for my book, for free. He looks mildly surprised, asks what it’s about, then simply says yes.

We just had a couple of pints, and what a splendid chap.

Oh, and here’s the kindle cover:

Slender threads

and the book cover:

slender threads cover final


A meeting of minds

So, this evening I travelled up to Sussex Uni to see Tim Andrews, a 61 yr-old PWP, give a presentation on his ongoing project, Over the Hill. Now, I usually begin from a point of scepticism, and I’d read about this gentleman, in the Guardian I believe, and, to be frank, I had been deeply unimpressed. But, like Keynes, when presented with new facts (that is, Tim himself and the images), I changed my mind. Readers, I was wrong. Continue reading

Lies, damned lies, and … hang on …

So, the season is drawing to a blustery close, and in my 38th innings (I know, I have truly gorged myself on cricket this year) I hit the heady heights of 400 runs. I ought to be pleased, really, considering I started by batting left-handed (and with only the right-hand available for use), a total switch of styles. Of these 38 innings, four involved me actively switching from left to right-handed after 18 runs or so. The idea was that I got my eye in left-handed, then went on the attack right-handed. I had observed that I was more difficult to get out left-handed, but scored more freely right-handed. Continue reading

Emotional anaesthesia

[first published 28th March 2012]

Last night I went to a concert at the Brighton Dome. It was the Waterboys, ostensibly flogging the new album, An Appointment with Mr Yeats. Now, the album is pretty good, and Mike Scott’s free interpretation of Yeats’ poetry creates something a little more than the sum of all its parts. His cherry-picking of lines from various poems may offend the purist, but in many ways is close to the spirit of Yeats’ own work, as he played wild and loose with Ireland’s mythic past. 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.

There’s always something around the corner

[First published 12th Feb 2012]

Yesterday was one of those days. I hope not a pivot point, when I’ll look back and go – yes, it was fucking well that. But it was nonetheless one of those days.
My shoulder has been (see where I’m going?) doing pretty well, I think. The pain decreasing, apart from when I’m stretching, and the strength and mobility gradually returning. It’s 5.16am and it’s aching now. Partially because of yesterday and partially because of my writing this. It’s not that I’m using it, more that it knows I’m talking about it. I haven’t been writing about it much because it’s been quietly recovering, but yesterday I replaced a lightbulb. It felt tight, nothing more – certainly nowhere near as tight as during some of my stretches – but afterwards … pain. I don’t think I’ve ripped it again, but it’s so depressing, to know that over two months after surgery it’s still so fragile. So diva-like. I haven’t dared to start to loosen it up yet, and may need a good shower beforehand to get the blood moving.
Put simply, it scares me. This year is proving so bizarre already, I really fear for my me-ness. The manner in which I have achieved self-definition is basically under assault. And not just from a demanding mog.
There’s a hollowness at my core. A visceral, physical, hollowness that I can’t explain.
What I really need, I suspect is a hug.
Oh, and some basal ganglia that work properly.

In the swim

[first published 6th Jan 2012]

This week, in the name of rehab, I’ve been back to the pool. I’m not a bad swimmer, all things considered, though I have perhaps relied overmuch on the grunt my shoulders are capable of supplying … or were capable of supplying. It’s a salutary lesson to learn that one can no longer power one’s way through life. Well, maybe not life, but at least through certain parts of it. I have been guilty at times of using whatever powers are under my command, be they physical strength, rhetorical adeptness, intellectual prowess, or sheer force of will to fight my way out of whatever sticky situation I may find myself in. I have also been guilty of getting myself into an awkward spot merely so that I may escape when I perhaps ought not be able to. Sometimes wittingly. Continue reading

Charity, celebrity and Parkinson’s

Apparently, it’s a ‘travelling gallery show featuring photographs of parkinson’s sufferers and celebrity supporters for a cure.’

It’s very ‘American’, and, well …

What is it with this stuff? Check this out:

Hi, my name is Allan, and I’m a commercial photographer. Inspired by my best friend Becky, I’m creating a travelling gallery show and photo book documenting individuals with Parkinson’s. Becky has had Parkinson’s since she was 29, which surprised and appalled me enough to want to create this series of photos documenting young Parkinson’s sufferers. A few fancy faces I’d already counted among my clients were similarly inspired and decided to pitch in: thus far we have shot such luminaries as Terry Gilliam, Grant Morrison, Neil Gaiman and Kevin Smith, with more to come, all jumping in to help illuminate this condition through art. We are taking these photos on the road, promoting autumn shows in Los Angeles, Edinburgh and Berlin, and we need your help to make them a reality.

The words that get me are ‘create this series of photos documenting young Parkinson’s sufferers. A few fancy faces I’d already counted among my clients were similarly inspired and decided to pitch in: thus far we have shot such luminaries as …’ I see no PD sufferers. The video says that the presenters are actors, not Allan and Becky. I see nothing but PR.

I am increasingly uncomfortable with celebrity campaigns. I think that they reinforce the feeling that we can give some money and salve our consciences – and our consciences are soiled not with our guilt at not doing anything, but our guilt at being well when others are ill.

I am ill when others are well. I find it monumentally patronising, and yet, recently, was amazed that PD awareness week arrived and neither I nor anyone else seemed to notice.

Creating a gallery documenting the lives of sufferers of PD or any other condition is a legitimate and, I think, useful thing. It cannot but help to disseminate awareness of this and other conditions.

Showing lots of pictures showing celebrities holding candles to ‘Illuminate Parkinson’s’ illuminates nobody. It perpetuates the feeling that we need not bother actually thinking, actually trying to empathise.

I know that their hearts are in the right place. I merely question their choice of medium, and my question says more about public attitudes to anything remotely uncomfortable: if it’s embarrassing, then we must swaddle it in niceness.

Yes spread the word. Yes let’s have ore people realise that PD sufferers, like many others, are not always obvious. I do not have a tremor. But I have PD. Surprise followed by awkwardness is the usual response to the news. This and embarrassment, and not mine.

Let’s save people from embarrassment. Just not by celebrity.