This is what I wrote for The Independent on 6 May 2020
It might be a cliché that it takes a real jolt to the system to make a person feel their mortality (as opposed to merely “knowing” it), but it’s true. What no one ever says is that this jolt can also make us question something else that we generally take for granted: our normality.
Twelve years ago, I was diagnosed with Parkinson’s Disease. I was 40 years old. Since then, as well as learning what the words progressive, degenerative and incurable actually mean, I’ve discovered the importance of the act of diagnosis.
Diagnosis both clarifies and confuses. I fely vindicated because something was, indeed, wrong, but I also fet like an imposter because I really was’t that ill. I had some problems with fine motor control, a bit of shoulder stiffness and a soft-shoe shuffle, but nothing really bad: just enough to know something wasn’t right.
The worst thing about being diagnosed with Young Onset Parkinson’s isn’t the disease itself, but the potential. That’s not to say that it isn’t a terrible disease to live with, it is. Parkinson’s is a disease of diminution: it gradually erases your “youness”. Its inexorable advance brings with it an increasing inability to assert self-control: if it involves moving, staying still, thinking, not thinking, sleeping or staying awake, then Parkinson’s will wreck it.
Diagnosis, however, is a declaration of possibilia.
Thrust into a world of certain uncertainty, we know that everything will change, but we don’t really know how. We have lists of the various problems that may afflict us, but how they will actually affect us is still a mystery. I’m still coming to terms with some of my symptoms, and all the while wondering whether that tweak I just felt in my left arm is the precursor to chronic dystonia or simply a tweak. It’s like knowing that the light at the end of the tunnel is a train, but not how fast it’s going, what it’s carrying, or even whether it’s on the same line as us. And, of course, when the next one will appear.
And so we come to Covid-19.
Pretty much since the day film-makers got over scaring audiences by showing trains driving straight at them, they have presented us with visions of post-apocalyptic societies of every hue. The catalysts are legion: asteroids, AI, global warming, pandemics… For years the media, the arts, the sciences and even the faiths have been telling us that, at some point, something will happen that will fundamentally change the way we live. And it’s terrifying.
Right now we are all wondering whether Covid-19 is that thing. We are struggling so much because we have no idea. When this is all over, whatever that means, the world will either go back to normal or never be the same again. If it is never the same again, how much will it never be the same again? Covid-19 may soon be viewed as but a painful but relatively insignificant part of history. It may just be a blip. On the other hand, it may change everything, for better or for worse.
For as long as most of us can really remember, the future has looked pretty much like the past, only with new phones. Now, we simply don’t know what it is going to be, though we have all manner of predictions: we will not know until we are no longer in the middle of it.
I am on the vulnerable list – the most common cause of death in Parkinson’s patients is pneumonia. I began self-isolating before lockdown was announced, in a tiny house by a canal in the Netherlands (I didn’t want to risk travelling home, and now I’m not sure when I will be able to). My health is suffering because I cannot get the exercise I need to prevent my Parkinson’s from advancing at will. I have no garden. Like everyone, I’m also suffering from a lack of extended human contact (though my partner and I are still talking).
The predictable uncertainty of the future? I’ve lived with that for twelve years.
That is what a diagnosis of Young Onset Parkinson’s does to a person.
That is what society has just being diagnosed with: an inevitable uncertainty.
Welcome to my world.
When I was first diagnosed, I was briefly paralysed by the fear of what was to come. Then I realised that the future didn’t much care what I thought of it.
If there’s one thing that Parkinson’s has taught me, it’s that there are things I cannot change, and things that I can. I try to concentrate on the latter. It’s up to me to make my normal.