Parkinson’s is a funny old thing. One of the difficulties of living with it, as with other chronic conditions, is summed up by that hoary old piece of advice: don’t let it define you. The irony is that the more you try to take it on, to resist that definition, the seemingly inevitable slide that follows on from that moment when, on diagnosis, you move from suffering to suffferer: that is, you become no longer a person with this wrong or that wrong with you, but a neatly pigeonholeable nameable condition. I have written about Parkinson’s, raised money to help both myself and others with Parkinson’s spoken on webinars and on the radio, all in order both to make sense of my condition and to help others with it. In doing so, I increasingly associate myself with the disease.
I am the cricketer with Parkinson’s (a mantle I inherited from Jon Stamford), I am a speaker on Parkinson’s. Increasingly, I am being contacted by people thanking me for the book and talking about the various topics covered in the book and invariably talk of a cure rears its head, and I find myself strangely uneasy. This disease, this shitty, horrible disease, has, in amongst the stuff it’s taken away, actually provided me with a smattering of focus and, dare I say it? some measure of specialness. The truth of the matter is that I gain extra points for being ill, I become more worthy. In fact, to many, I might seem to have the perfect balance of disease in potential and opportunity. This will change, of course, as the disease progresses.
But I am left with the uncomfortable feeling that, in the short term at least, PD may well work in my favour. And that’s a dreadful thing to admit to.
It’s making it very hard to write, however.