I make a point of running each blog past my family before posting. Not because there’s anything scurrilous or controversial but simply to give them an idea of what is forthcoming before it hits the World Wide Web. Catherine reads them. But for Alice and Alex, I think the blogs barely appear over the horizon. Alice would probably only read it if it appeared in Vogue or was endorsed by Karl Lagerfeld. And for Alex, the blogs come a poor second to his DVD of great West Indian fast bowlers. Fair enough — given the choice between reading my meanderings or watching Curtly Ambrose scythe through the Australian top order, I know which I’d pick
Until recently, I didn’t have the impression that Claire read them at all. But last week, over coffee, she said to me “You know something strange about your blogs?” I looked up. “You don’t mention Parkinson’s much” she said “In fact, some weeks you don’t mention it at all”.
I don’t think she meant it as a criticism. It was just an observation. But it got me thinking. And before long I have a whole bundle of questions in my mind. And I can’t sleep. My mind is buzzing with these thoughts and it’s three in the morning. Leaving aside the more pressing question of whether I try to sleep or just simply write this night off and press on till dawn, there are questions to answer.
If I don’t write about PD, does it mean that it is not a major factor in my life?
Okay that’s an easy one. PD is certainly a key part of my life. From fumbling with change, to spilling drinks, or tying my shoelaces, PD’s unwelcome presence is always there.
Is it a form of denial? If I don’t write about it, maybe it will go away?
No I don’t buy this either. I don’t delude myself that it’s a mistaken diagnosis or that I don’t need the medication. It isn’t and I do. But that doesn’t mean that I have to accept everything this condition throws at me. Acknowledging its existence is one thing but accepting its consequences is a very different kettle of fish.
Perhaps there is nothing new to say?
Possibly. Goodness knows, there are enough blogs and other websites on the Internet with practical advice on how to fight Parkinson’s, how to secure those small victories in this endless war. Who needs my thoughts?
Maybe, like an embarrassing friend at a party, I just want Mr Parkinson to shut up. I know he won’t leave, but if he can just stop reminding me of things, that would be a start. So in some subconscious way, perhaps I try not to encourage him. From the beginning, I have never wanted to ram Parkinson’s down throats. The blog is on a Parkinson’s website. You know I have Parkinson’s. Enough said surely?
In any case, as my friend Tina from YAP says “I have Parkinson’s, the Parkinson’s does not have me”. And that’s a common rallying cry. You can be positive. My friend Bob the Biker would perhaps go further and say you must be positive. Bob has a Honda Goldwing so he knows a thing or two about motorbikes. From his approach to his PD journey, I’d say he knows a thing or two about Parkinson’s as well. Besides, on a Goldwing, you’d want to share that journey!
My feeling is this. I mention the Parkinson’s when, and only when, it impinges directly on my subject matter. So if I’m writing about music for instance, the PD is nowhere to be seen — it’s probably skulking in a corner. On the other hand, if I’m writing about cricket, hang gliding, pole vaulting, or bobsleigh, there is a fair bet that the PD will have some bearing on the outcome. So I’ll write about it.
Sure, things happen more slowly. If I’m in the supermarket queue ahead of you, you might want to look for a different checkout. By the time I have finally bagged up my groceries you could have learned a foreign language. You could be paying for your mandarins in Mandarin. There’s no such thing as Fast Track with me. It’s the same in the post office. By the time I have paid for six first-class stamps and a postal order, the man at the adjacent counter has changed nationality.
Another thing about Parkinson’s is the influence it has on others. Believe me when I say that I now have the power to determine which clothes my friends wear. Really. If you are going out to dinner with friends, you would normally dress up, right? Best bib and tucker? Not at the Stamfords’. And especially if you’re seated next to me. When I’m snorkelling my way through a bowl of minestrone, you don’t want to be anywhere near the epicentre. Especially in that new white Thai silk sarong. Everyone wears jeans and old clothes. Don’t say I didn’t warn you.
But let’s make no bones about it. Like the words to the Catholic Mass, Parkinson’s is “in my thoughts, on my lips and in my heart” every day. But that’s my problem not yours. Besides, we don’t stop living just because we have Parkinson’s. Life goes on. There is money to be earned, bills to pay, friends to enjoy, plans to make, family to love.
So if it’s all the same to you, I’d like to keep it in perspective. My perspective.
So don’t mention the Parkinson’s.
I mentioned it once but I think I got away with it.