Twelve year ago, I was diagnosed with Parkinson’s Disease. I was forty years old. It was something of a shock to the system. Over the years I have become increasingly aware of what such a diagnosis does to you. Not what the disease itself does (though I have also become increasingly, and uncomfortably, aware of this. That’s what the words progressive, degenerative and incurable mean), but what the act of diagnosis actually means to the diagnosed. I don’t for a minute think that what I am about to describe is unique to Parkinson’s, though I suspect it may, in many ways, be something that is largely confined to chronic ailments such as Parkinson’s.
Diagnosis changes your status from person to patient; from someone to symptoms. You become, all of a sudden, a set of specific problems waiting to be ticked off. But this isn’t about you have x, y, and z and therefore you have Parkinson’s. This is different.
Let me explain.
Firstly, when first diagnosed, your average Parky isn’t really that ill. There are things not quite going right, absolutely. A bit of fine motor control fuckwittery here, a bit of shoulder stiffness, maybe a soft-shoe shuffle and a wee tremor, but nothing really bad. Just bad enough to know something’s not right. And so you seek treatment. Eventually, you hear those three little words, and they expand to fill your entire head space: you don’t hear a word of what the consultant says next, just nod while shouting ‘What the fuckity fuck? Fucking Parkinson’s? Fuck’ at yourself. And when you tell people (which, I must admit, is fucking freaky at first … until it becomes mundane, which is perhaps even stranger), they tend to give you that look that says something between ‘but you don’t look ill’ to ‘yeah, whatever, pull the other one’. And it’s perfectly understandable when they’re staring at someone who a) is not yet seventy and b) isn’t shaking like a difficult-to-pin-down analogy in an earthquake. Because you don’t look ill enough to be ill. And yet, research suggests that by the time you’re diagnosed, 70% of the substantia nigra, the bit of your brain wot manufactures dopamine, have done gorn snuffed it.
When you are diagnosed with Parkinson’s, the worse thing isn’t the disease, but its potential (the disease does win the race, mind). You gradually become aware of all the symptoms you may/will probably develop. There are shit loads, from not being able to shit at all to being shit at just about everything that involves moving, staying still, thinking, not thinking, sleeping or staying awake. All at the same time. Diagnosis is a declaration of possibilia.
It’s a somewhat hackneyed cliché to state that it takes a real jolt to the system to make us humans truly feel our mortality (as opposed to merely ‘knowing’ it), but it’s true. What no one ever says is that this jolt also makes us question our normality. Three little words and all normality is promptly defenestrated.
Being diagnosed with Parkinson’s does two things to normality. Firstly, it tells us we no longer belong in it. Secondly, it tells us we don’t know what ours is going to be next. We have a list of stuff that is suddenly possible if not probably inevitable. But we don’t actually know whether or when. It’s the light at the end of the tunnel being a train, but we don’t know how fast it’s going, what it’s carrying or even whether it’s on the same line as us.
And so to C-19.
For years, pretty much since they got over scaring audiences by showing trains driving straight at them, cinema has presented the world with post-apocalyptic societies of every hue. We all know that, at some point, some thing will happen that will fundamentally change the way we live. And it’s terrifying.
IS C-19 THAT THING?
Well, we have no idea. And that’s why we’re all struggling so much. When this is over the world may a) go back to ‘normal’ or z) never be the same again. Or everywhere in-between.
We simply don’t know. THIS MAY BE IT! This may just be a blip.
For ever, the future has looked like the past but with new phones.
Now, we simply don’t know what it’s going to be.
That’s what a diagnosis of Parkinson’s does to a person.
The world has just been diagnosed with a disease, too: uncertainty.
Welcome to my world. Sucks, don’t it?
A different version of this piece can be found in The Independent.