It’s difficult to know where to begin, and at such a time, we ought perhaps keep it simple. That was how I put it in 2013, in my book Slender Threads: a young person’s guide to Parkinson’s disease, and for all the words I’ve wrangled since, I struggle to see how I could have expressed my experience any better.
It was January, 2008 when I found myself walking into a neurologist’s lair, putting my coat on the back of the chair, and calmly recounting the story thus far. He poked and prodded, waggled my wrists, made me walk up and down the corridor, made me write stuff, questioned me relentlessly, and poked and prodded me some more.
‘So,’ he began, ‘have you any theories as to what might be going on?’
Now, I’m rarely lost for an answer, and mostly when I appear to be, it’s because I have an answer but suspect it might be more politic to keep it to myself. This time, however, I was incapable of transforming my feelings of fear and trepidation into a logical explanation of what, exactly, it was that ailed my limbs.
‘I ask because you’re plainly an intelligent man’ (I tend to use the appellation ‘Dr’ whenever I’m in a situation where such things are valued), ‘and with your family history’ (I had explained that my father and uncle were both doctors), ‘I don’t think you’re liable to freak out’. I paraphrase, naturally, but whatever he said, that’s what I heard.
‘So I’m going to tell you what I think’, he continued, unabated. ‘I would be happy to diagnose you with Parkinson’s Disease right now, but there are a couple of things which can lead to Parkinsonisms that we’re going to test for first’.
But that was then, this is now. And what does now feel like? Have the ten years that have passed since my diagnosis affected my outlook on life?
Well. It’s increasingly clear that I live in a different world than once I did. I now live in a ‘parky’ world. None of this ‘I may have Parkinson’s but it doesn’t have me’ nonsense. Of course it does, just as to those who don’t know me personally, of course I am defined by my disease. Dammit. Oh, but I’m missing the point. Ten years.
Ten years is a long time in parkinson’s world. Over this time I’ve seen the best and the brightest of us begin to fade. Friends who were once in the vanguard of those sticking it to people’s perceptions of Parkinson’s are now struggling. Struggling to dress themselves, struggling with added complications, struggling to hold any semblance of normal life, normal relationships together. Struggling with the disease; struggling with the therapies. It’s a terrible enough thing to notice, let alone say out loud. Unfortunately, it’s the truth. For all the things that I saw in my future back then, whether they’ve come to pass or not, I truly didn’t see this one coming. And it’s beyond chastening. The irony is that, for whatever reason, I’m feeling better than ever. And it’s easy to feel positive when you’re feeling good. This, unfortunately, is what I see when I see the new crop of young ‘uns. I stand between the two. They are my past, I am their future. And then there’s what I see around me. And I know that there but for the grace of time go I. It’s coming,
One of the things that I tend to explain to people is how a diagnosis of a chronic ailment such as Parkinson’s brings you face to face with mortality in a visceral sense that is difficult to understand. Damn it surprised me to find out that there are levels.
Now, I know that this will stick in the craw of the uber-positivity-beat-parkinson’s brigade, but get this: you can’t. Fighting something that doesn’t obey your rules of engagement and doesn’t care if it wins or loses is only going to end one way. And I don’t mean to suggest we just roll over and give in, just that we don’t waste our time and energy trading punches with something that just won’t quit. And I also know this isn’t what you want to hear. And I know some of you will be shouting at the internet, if you haven’t already closed the page. And I’m just like you. I’m most irritated by those who tell me how I ought to feel. Especially the ones who don’t have Parkinson’s. Bless ‘em. But I do reality, and I don’t mean my own version of reality. I’m not talking about the things we can affect. I’m talking about the reality that shuffles slightly but carries a big stick. And it doesn’t matter whether it hits you or those around you, it still opens your eyes just that little bit wider. Sometimes it’s all I can do to try to be where the stick ain’t. We shouldn’t be surprised when those we love, those admire, those we trust fall victim. And when the stick is staking a claim on us?
The fact of the matter, the reality of the situation, is that it’s coming for us all, and it will get us all. But in the meantime, I will live. I will not sleepwalk. Because then I might just prove greater than the sum of my parts.
We notice those who fall because of the heights they have reached. And while there is no escape, there is hope. We will all fall: let’s see if we can’t make the fall worthwhile.