Changing the world …

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

I said what?

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

Indisability

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

A Trip Down Memory Lane

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

The influence of anxiety

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

The future was unwritten

‘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

I have something to tell you …

‘You have Parkinson’s Disease.’ These words, once uttered, change everything. Even though many PWP already ‘know’, or at least have deep suspicions about what ails them, these words uttered by the representative of the medical world confer patienthood. It is these words that make you ill: it is these words which legitimise your symptoms; it is these words which stamp you irrevocably with the label ‘patient’. Words are transformative, and these words of diagnosis are poetry in the highest, purest sense: poetry is a word derived from the Greek poieo: to make.
And they say that words will never hurt you. Continue reading

Vox pox

(First published in Parkinson’s Movement 2013)

Many years ago, I was at my parents’ house when the phone rang. Naturally, I answered it. On the other end I found an old family friend, whose voice I recognised immediately. ‘Hello David’, she said. ‘Ah, no, it’s Pete’, I replied.’ ‘Very funny, David.’ ‘It’s not David, it’s Pete.’ A small pause. Some repetition. Eventually, she became rather irate. ‘Look, David’, she said, ‘I’m getting very tired of this …’ She would not accept that my voice was not that of my father, they were so similar. Several years later, on the day he died, the phone rang once again. Continue reading