I’ve already written this post three times this morning. In fact, I’ve written this post dozens of times over the past few years. What is it to be in control? This was one version:
As I sit, cross-legged on my bed, laptop atop my lap (as it ought to be), listening to the rain beat against the roof, waiting for the plumber to arrive, checking social media for, well, anything to distract me from the task at hand, I’m less concerned with being ‘in control’ than I am wondering what it means. 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
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. Continue reading
Last night was the ‘official’ launch of my book, Slender Threads, and a jolly fine evening it was too. Continue reading
I’m not particularly comfortable with, or good at, asking people for money. Last year, when I switched to batting left-handed and asked for sponsorship, the smart money was on a very small runs tally. The smart money doesn’t always win. It began unravelling for my various sponsors during my first innings, in which I scored 40 not out. Though the next few languished in single figures, the die was cast, and this, coupled with an insane quantity of games played, meant that the amount pledged racked up. Naturally, an amount failed to be given in, but this was due to my refusing to accept money until the season’s runs were scored. Continue reading
Cricket is a passion, and these are my as-yet unworn ‘season of 2013’ shoes. In these I will be travelling the country, playing cricket in country houses to write The Country House Cricketer, the proceeds of which will go directly to funding research into Parkinson’s. Parkinson’s is already affecting my game, but that just forces me to think of new ways to get round it, to frustrate this most frustrating of conditions. It’ll win, yes … but I’ll give it a damn good run for its money.
Like many of us, I simply cannot bear the sound of my own voice, so I have yet to listen to this interview which appeared on the Danny Pike Show this Monday – it starts at 1.09 in.
I do know that the aspects of voice are many, that it means many different things, but that each one of them is down to identity. Whether it’s authorial voice, the voicing of a chord, the collective voice of a populus, or the simple result of air being moved over vocal chords, the voice is something that is instantly recognisable. Why do we not like the sound of our own voice? Is it because we don’t want to be confronted with who we are?
Parkinson’s affects your voice. It gradually softens, slurs, diminishes.
As it does so, another aspect of what makes you you slowly fades.
Eventually, the words ‘I didn’t recognise you’ will be the one I hear most.
Sometimes, I don’t recognise myself. Perhaps that’s why.
I’m truly not convinced I can listen.
For more on early onset Parkinson’s, see my book Slender Threads, available both as an e-book and a real, paper book. 30% of royalties goes to fund research into Parkinson’s.
Thus far, and I write this fully aware of the fact that it’s waggling something delicate in the face of fate, this has been the week of good reviews. First it was for Slender Threads, which you may also read about here, and then for Negotiating the Jacobean Printed Book. It’s a good enough feeling to know someone’s actually read your words, but when they say nice things about them too … well, it makes for a better afternoon.
Five years ago, on January 30th, my life changed. It changed because a consultant uttered the words ‘you have Parkinson’s’.
In the months that followed, my marriage, my career, and my sense of self took an almighty battering. Continue reading
OK, I admit it, I have long believed Ms Mitchell’s line from Big Yellow Taxi. You know the one: ‘Don’t it always seem to go that you don’t know what you’ve got ’til it’s gone.’ I fear I may have to perform a volte face. Continue reading