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
‘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
‘Show us your legs’, the umpire said, sotto voce, as we changed ends. Continue reading
‘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
(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
‘You look mental as fuck.’
These were the words that I heard when I was walking through London Bridge station yesterday. I stopped walking and turned to the speaker, a short, well built young man on his phone.
‘I beg your pardon?’ I said, rather taken aback. Continue reading
So, the question is whether we ought to read carefully, or just the headlines.
Parkinson’s UK posted this article today on the supposed link between Parkinson’s and creativity. It was the third paragraph before these words appeared: ‘The researchers spilt [sic] the people with Parkinson’s into 2 groups and found that those who took more Parkinson’s medication were the most creative.’ Continue reading
This is a piece a wrote just over a year ago, and I’m going to reproduce it here:
Creativity and Parkinson’s. A contentious pairing of a much-argued ‘gift’ and a disease that rots your brain in an extremely precise manner. They are inextricably connected inasmuch as the fruits of creativity vary wildly in their quality, just as the wholesale slaughter of the basal ganglia seems to produce wildly varying symptoms in each individual. There’s obviously a massive problem with attempting to gauge the true relationship between the two, namely the necessarily subjective nature of assessment. How does one measure creativity? Continue reading