It’s an intriguing and at times nerve-wracking business being involved in a journalistic event such as the guardian’s disability diaries and the accompanying interview by Frances Ryan. One of the reasons for this is the fear of the comments section. It’s some irony that my contribution revolved around the articulation of how it feels to be fundamentally invisible in disability terms, and several comments seemed to have completely ignored both my presence and that of Craig: Continue reading
Every so often, we make a decision that reaches out and grabs all sorts of unexpected things by the ankles, and drags them kicking and screaming into our living room. Naturally, we have no idea what these things actually are until they recover from the shock of being accosted, shake their legs free and unfold to their full height. They look around the room for the offending ankle-grabber, but the decision is long gone. It just invited a whole tribe of beasties round for tea before scuttling off into the past. Via the back door. It’s only you left. And the beasties are big and wildly pissed off. Continue reading
Here’s a piece I wrote for All Out Cricket on the England Physical Disability Cricket team.
A funny thing happened on the way to town the other day. No-one batted an eyelid as I wandered through the packed streets of Brighton, the wee, bijou ones they call the Laines. This may seem a little self-regarding, but I usually have to deal with swathe of subtle and not-so-subtle staring. It’s not, sadly, due to my unfeasibly handsome visage, nor to my burgeoning fame. It’s all about the way that I walk. The looks start at my feet and end at my eyes, as if it is here the answer lies, as if the eyes will explain. As if the eyes will be cold, lifeless, the eyes of the undead. Continue reading
Here are two samples of my dramatic work, Bowling at the Death and Shakespeare Must Die!, written for the radio and stage respectively. You never know, you might find them amusing.
Bowling at the Death is a play for the radio rather than the stage, and it based around the great game of cricket. The protagonist is a batsman denied his first century by what he considered a wild miscarriage of justice at the hands of the umpire. The ‘outrageous’ LBW decision to which he he falls victim unleashes years of pent-up jealousy and fury, with murderous results.
Shakespeare Must Die! is a response to the slew of conspiracy theories surrounding the authorship of William Shakespeare’s plays. The most common idea is that the plays were truly written by Christopher Marlowe, who subsequently faked his own death in order to escape censure at the hands of the authorities for his many and various sins, and that Shakespeare was a cloak. The play takes as its premise that Shakespeare is in fact being employed by a shady cabal to write political works under the name Christopher Marlowe. An altercation in a public house leads to a fundamental shift in the playwright’s firmament.
They say that one ought not speak ill of the dead, but with some people, it truly is an unnecessary proscription. If Simon had any faults, it was that he was too generous, too open-hearted, too damn agreeable. These are faults to which we all might aspire.
Simon was a living, breathing model of how life ought to be lived. Mortuary assistant, pig farmer, shoe cleaner, B&B proprietor, writer: his career path sounds almost mundane until you realise he established pig farms in Vietnam for a charity, ran Streetshine, a charity for the homeless and built his own tourist eco-lodge in Abene, Senegal. In between-times, he wrote two books, Squirting Milk at Chameleons and Chasing Hornbills, and numerous pieces on Africa. He wasn’t one to sit on his haunches. Apart from when sitting on one’s haunches was exactly the thing to do. It’s no surprise he ended up in Africa. Continue reading
They say that one ought not speak ill of the dead, but with some people, it truly is an unnecessary proscription. If Simon had any faults, it was that he was too generous, too open-hearted, too damn agreeable. These are faults to which we all might aspire. By this you may have inferred the subject. Continue reading
An extract from Slender Threads, on March 15th, 2008:
The status of my patienthood was soon to become clear. But not before I had waited for another hour or two. So I waited.
It’s odd how waiting rooms are so monumentally unfit for purpose. Either that or those occupying them are monumentally unfit for the task at hand. It’s easier to wait in the machine, to be honest. More relaxing, too. I suppose this is because there’s consistency enough for the brain to switch off, and too much stimulation to get bored. After what seemed like some time, yet another consultant trooped in and led me away. This time, it was for ‘the talk’. This was the part of the day that would define my future. From this moment on … well, some upcoming moment, anyway. Continue reading
Many years ago, in a land far, far away (Nottingham), a young man sat with a guitar on his lap, his hands poised to play a new (and fiendishly difficult) composition. Luckily he was exceptionally able. When the red light screamed ‘recording’, however, his hands failed him. Time and time again he tried, but he simply couldn’t play it. Several bottles of beer later, and with the lights switched off, he flew through it perfectly. He just needed to realign his head. Continue reading
‘So, where do you see yourself in ten years’ time?’ If I’d been asked that question in 2006, I would have seen a me very different to the one that sits, laptop atop lap, slowly tap-tapping out the words you are reading. I had recently handed in the draft of my PhD thesis to my supervisors, and awaited their approval. It was a long time coming as they were both ill – sadly they are both now deceased – and this delay meant I ended up submitting late, thus missing the cut on several jobs. Unexpected event no. 1. Two years later, I drove home clutching a bag of pills and a brand new diagnosis. Unexpected event no. 2. I wrote an article for the Independent – sadly now deceased – called ‘The Longest Wait‘. Here’s an extract:
My New Year was somewhat blighted by the revelation that I had acquired Parkinson’s disease. That’s how I put it. Acquired. Like experience. It just creeps up on you.
But here’s the rub: I don’t look ill; I don’t act ill; I don’t even feel ill, yet I am. And this is what’s strange. My life hasn’t been ruined by this disease – I’m not about to die – but it certainly has changed. The problem is that I don’t know what’s going to happen: all I know is that something will.
Moving swiftly on to 2013, I published a book called Slender Threads: a young person’s guide to Parkinson’s disease. In this I considered the fact that I did now know pretty much what was going to happen to me, and why. I merely lacked a ‘when’ and a ‘what it feels like’. Parkinson’s was, for me, a disease of anticipation. That was its ‘exquisite torture’, the inevitability it brought to the table. Of course, coming to terms with the inevitability of our decline is at the heart of the human condition. We all have our ‘Mistah Kurtz’ moment. A diagnosis like Parkinson’s casts this inevitability in a different light, however. It makes it visceral. It makes it come eversomuch closer. It makes it real. Continue reading