Twelve year ago, I was diagnosed with Parkinson’s Disease. I was forty years old. It was something of a shock to the system. Over the years I have become increasingly aware of what such a diagnosis does to you. Not what the disease itself does (though I have also become increasingly, and uncomfortably, aware of this. That’s what the words progressive, degenerative and incurable mean), but what the act of diagnosis actually means to the diagnosed. I don’t for a minute think that what I am about to describe is unique to Parkinson’s, though I suspect it may, in many ways, be something that is largely confined to chronic ailments such as Parkinson’s. 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
‘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
Parkinson’s is a strange condition, in some ways it’s best described as a ‘but more so’ disease. It’s like getting older, earlier, but more so. It’s like being stiff after vigorous exercise, but more so. It’s like being drunk, but more so … it’s like being alive, but more so. Don’t worry, I’m not about to take the path of ‘it’s the best thing that ever happened to me’ least resistance, as if praising it could make it better. It’s shit. Utter shit. But I can, and will, suggest that it amplifies life in certain strange ways, and the way in which it goes about its business can be instructive. It does micro/macro exceptionally well, because with Parkinson’s, little things can have wide-ranging consequences. Continue reading
[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
Start. It’s perhaps stating the bleedin’ obvious, but upon receipt of diagnosis everything pretty much changes. The wheel, as they say, takes a fresh spin, but also tilts on its axis just a little … or a lot, depending on what it means to you personally. What is certain is that in certain, and quite important, circumstances, you are no longer a person but a patient. You are your condition. This can be problematic, in a number of ways, not least for you (that’s the patient, btw). In terms of the system you are now a set of symptoms, a set of boxes to tick (and, mark you, a pricey set of boxes). This much is reasonably obvious. You may not expect it, but you realise pretty quickly that most of the time professionals address the symptoms not the person – that is left up to support groups and so on. Unfortunately, this disjunct can lead to a lack of meaningful communication between system and patient … and it’s even happening here. In attempting to deal in the abstract, I am repeating the same error. Continue reading