Eek, the pressure!!
When I first started writing this blog back in October 2012, it was oh so easy to find things to say. My friends and colleagues, on the whole, knew as little about Parkinson’s as I did and seemed interested in walking the journey with me. The hardest thing about starting the blog proved to be taking the actual Jellywoman photo: my lovely colleague Amy and I struggled for ages with tubs of Hartley’s finest strawberry flavour and various playdough accessories. It turns out that jellies are not as stable as one might think and the resulting grizzly mess of plastic limbs and collapsed gelatine suggested a particularly obscure episode of Endeavour.Continue reading →
As soon as the words were out of my mouth, I realised that I’d been tactless. The last thing Tom needed, being, as he was, in the grip of dyskinesia (linked to Parkinson’s drugs; makes you move uncontrollably; just awful) and also having a conference-ful of important people to talk with; I’m sure the very last thing he needed was for some fool of a woman asking for his autograph on her copy of his book.
But Tom Isaacs had been a hero of mine, ever since I’d read “Shake Well Before Use” a couple of months earlier, and it was the first time I’d met him, and he couldn’t have been more warm and welcoming. Basically, I was starstruck. Still am, really. He even apologised for the writing being shaky! Him. Apologising to me. Good grief.
As a novelist, says Anna Burns, her job is “to show up and be present and attend. It’s a waiting process.” She “just had to wait for my characters to tell me their stories.”
(Interview by Alison Flood in The Guardian, 16 Oct ’18)
This obviously worked for Anna Burns as she has just bagged the Booker Prize with her novel Milkman.
I, however, have spent a lifetime waiting for characters to turn up and write themselves into a book but they haven’t done so yet and I’m rather starting to fear they never will. I go to bed having put out my finest stationery but masterpieces come there none. Not so much as a shopping list; not so much as a tweet. Perhaps the characters have used up all their best ideas writing other people’s books. They have no more twists.
I’ve recently been diagnosed with Parkinson’s. If you were me – which research project or trial would you volunteer for?
This question is being asked by a woman in – oh, her early thirties? She’s near the front so it’s a bit difficult to see from my chair at the back. Although, being by a window, I do have an amazing view of the misty city’s domes and spires. From the ninth floor of the Bentley Institute building, we are looking down on St Paul’s. We’d spent a little time before the meeting started picking out landmarks and talking with one of the staff. ActorLaddie asked if they had a roof garden. No, apparently they had a domed roof. So not the best shape for a roof garden. Unless, I suppose, a hanging one.
So that you don’t burst with suspense, I’m going to tell you now that the answer to the woman’s question was, in essence, it depends.
So much to do tomorrow… really must sleep now… all my bags are packed, I’m ready to go; standing here outside your door… no, no, no – go to sleep… all my bags are packed, I’m ready to go… must print out the map… need to check the tension on that knitting, or I might take the wrong needles… standing here outside your door … can you buy knitting needles in Denmark?… must be able to – all those jumpers – or is that Sweden? All my bags are packed, I’m ready to go…
“So there we were, scrabbling around on the cell floor in front of the Naked Rambler, trying to pick up the papers and desperately trying not to look up and not to laugh…”
It broadens the mind does travel, and going away last weekend to celebrate a school-friend’s sixtieth brought us into contact with interesting people who had interesting stories to tell and different – shall we say – viewpoints.
“At the age of twenty seven, copper-haired Maggie Hope had already foiled a plot to assassinate Churchill and blow up St Paul’s, saved Princess Elizabeth from being kidnapped, rescued a captured pilot from Berlin, taught at a school for Special Agents in Scotland and prevented First Lady Eleanor Roosevelt from being implicated in a lesbian murder scandal which would surely have led to America refusing to join in the War.”
I think it’s the gritty realism of the Maggie Hope novels that most appeals to me.
This time, we said, we are definitely going to take Considerably Smaller Suitcases.
Over the last couple of weeks, we’ve been planning our second Grand Tour. Autumn come she will and we’ll be hopping on and off trains with gay abandon, clutching our trusty Interrail Passes and Considerably Smaller Suitcases.
What with Manchester and London Bridge and elections, I’ve been tiptoeing around social media of late, in an attempt to avoid the slabs of pure venom which are scattered amid the good stuff. So, it was only this morning that I hit upon a post sharing the shattering news that one of my heroes – Tom Isaacs, president and co-founder of the Cure Parkinson’s Trust – died last week. His passing was, apparently, “unexpected and swift”. He was just forty nine.
“Now, I have to tell you about the possible complications,” says the Good Doctor. “These are incredibly rare: I’ve done many, many lumbar punctures and no-one has ever had a problem but, legally, I still need to tell you.”
“Can I say that I’d rather not know?” I ask.
“I’m afraid not,” the Good Doctor tells me.