During my long relationship with Parkinson’s, that malevolent little toad of a syndrome, I have had many conversations with many people coming at the condition from very different angles.
Last night, around 2:30 I found myself wide awake and unable to sleep. The great thing about the PD community as a whole is that somebody somewhere is always awake and often happy to talk.
Last night was no different. I looked down the list of Messenger contacts, noting those with their green dot visible and thus at least alive and potentially available. After a few cautious pre-flight checks (it’s always worth checking their time zone before pressing the call button. When Randy Schekman was told he had won the 2013 Nobel Prize for medicine, the call from Stockholm, made at 10 AM local time in Sweden, was received by Prof Schekman in a state of sartorial disarray. It was 5 AM in New York.
I don’t think I shall ever properly forget the sight of Prof Schekman, wild-eyed, and discombobulated in his Y fronts and string vest. I think it’s fair to say that some images should never be shared. Captain Underpants he may be but the display of his various underclothing elements (of which there were few) to the wider academic and patient communities cannot have been a positive incentivisation of youngsters towards science.
Anyway, enough said. My chosen interlocutor last night was Wayne Gilbert, English professor, poet, and gentleman. Despite our similarities in thinking on so many issues, we had rarely previously talked and certainly not one-to-one, mano a mano so to speak. There is a particular joy when talking to a man of similar age, complementary experience and outlook. We both adore the English language and its almost infinite capacity for nuance and subtlety. The pressing twilight of our years also bathes our thinking – we talk in realities and possibilities, not fantasies and hyperbole.
I’m not going to expand our thoughts here until we have crystallised them a little more clearly into their final form or at least a step further in the progression. We are oiling arthritic cogwheels first.
It’s time to tackle some taboos. Not in a brush-it-under-the-carpet route to invisibility but in an adult (i.e. grown-up) way of avoiding knee-jerk thinking. Anyway I hope I’ve whetted your appetite. We will be back with some ideas in due course.
We also both agreed that we detested metaphors such as ‘wars’ (yes I know I come close) and ‘journeys’ for the individual and collective Parkinson’s syndrome. Let’s find better.
Two hours of chat – lots of new and useful ideas.
Not bad for two old farts!