We have a lot on our plates with Parkinson’s – accepting, letting go, embracing, exercising, resting, eating healthy, sleeping well, and goodness knows what else. Meanwhile, Parkinson’s continues to threaten your brain on all fronts, while your leg shuffles and your hand trembles. You’re acutely aware that you won’t be sprinting through life like a top athlete in 10 years’ time. No way José, quite the opposite. The disease touches everything and anything you do.
So what do you mean – I AM not my disease?
You write, you publish, you’ve got lots of readers. Great! That means you’re a blogger! You don’t simply blog; you are a blogger. You have children, you take care of them, you love them – you’re a mother! You don’t just mother; you are a mother. I’m a friend. That’s more than being friendly. You’re a top sportsman or woman. That’s more than being sporty. You ARE what you put your heart and soul into.
I know you’re being kind, telling me that ‘you’re not your disease’ because, unfortunately, you are. Certainly, when it comes to Parkinson’s. Bit of a bummer, I know. It’s all very well telling me that I’m not my disease, but then you’re overlooking the impact that Parkinson’s has. And you’re possibly trying to make my illness smaller than it is. Please don’t bother – I know very well just how big or small Parkinson’s is. Perhaps even worse: you’ might be underestimating the fortitude and resilience of the average man or woman with Parkinson’s. You don’t say to someone who’s about to run a marathon ‘oh, it’s a walk in the park. An absolute breeze’. Or ‘you might be about to run 26 miles plus, but you’re definitely no marathon runner.’ That would be a painful underestimation of the superhuman effort our runner is making.
Get real. You’ve got a disease that threatens your entire existence. So, unfortunately you ARE that disease. As well as a blogger, friend, mother, wife, boxer, power tool and more. I agree, casting aside all these roles and becoming the sum of your disease would be the end of the line. But so long as you maintain the majority of them, then it’s about role division. Sometimes it’s the blogger who comes out on top, sometimes (often) the friend. Always the mother and yes, quite frequently, the Parkinson’s. That’s just the way it is.
Mariette Robijn, Huizen, The Netherlands
Photography: Wim Rozenberg