Previously published as guest blog by the Michael J. Fox Foundation for Parkinson’s Research.
And she was right. She casually hit the nail on the head as we chatted by the meat counter in the supermarket. That’s the thing with: illness, tragedy, loss…it’s so not YOU. Neither is a Parkinson’s diagnosis at 46. It’s just not how you envisaged your future. Fair enough, it’s not really anyone, my friend continued, but you…? No way, you’re so funny, you always make me laugh!
And yet again she was right. Parkinson’s is just so not me at all. Because I can do anything and everything. Kids, career, columns, you name it. Parkinson’s is therefore totally out of the question. But that’s when it hits me: there are some aspects of my life, both big and small, that I’m going to have to give up.
So…this is what happens to those struck down with sadness, loss, Parkinson’s? We all feel the same – that no, it’s just not right, it’s so not ME at all! And that’s where the acceptance starts and never truly ends. You find yourself on an uphill struggle.
But hold on. Acceptance? What does it actually mean, where does the word even come from?
Right, glasses on, etymological dictionary out: “favourable reception or regard”, which implies an element of willingness. According to the Oxford Dictionary it also means: “the consent to receive or undertake (something offered).” Aah! Right! Consent to undertake. Now we’re getting there. For no one wills a ‘favourable reception of Parkinson’s”. In fact, this is remarkably similar to something my grandmother once said at 101 years of age. Her husband was executed for being a Resistance leader in WWII; her youngest son died a couple of years later. Then her great-grandchild (our own daughter) died. And she said: “Be brave. You have to agree to embark upon the journey. A journey with an unknown destination. Without knowing why or even how.”
Come to think of it, it’s also a biblical concept. You can never accept your destiny, because you don’t know what it is. But you can accept the journey, the on-going process of tears, despair, optimism, falling down and picking yourself back up again, laughing at your own cynical jokes.
Now I understand what Oma meant by: “Be brave, you’ve got to be brave. You have to embark upon your journey with courage.” Whether you enjoy the ride or not. Whether your journey is Parkinson’s or any other journey for that matter. Undertake it bravely.
And then the oh so familiar question: “Have you accepted it?” A question of genuine concern and empathy. But irrelevant. “Have you set off on your journey yet?” That’s the real question.
Mariette Robijn, Huizen, The Netherlands