The New Cool when you’ve got Parkinson’s

Living with parkinsonsI was 4 years old and made a Decision. The photo captures the moment perfectly. I might have been young, but I decided that the photographer was stupid, along with his studio, the backdrop and everything else. And with that decision came a vision: in my life, I was going to do things very differently. By the time I was around 7 years of age and, at last, allowed to cycle to school on my own, I was sure I could have cycled on my own yeeaars earlier. Confirming my vision at the photographer’s studio: Just you wait until I can make all of my own decisions. My life will be so exciting and eventful!

Climbing Trees

I was pretty tough. Dolls and other girly things, in my view, simply weren’t cool. Climbing trees or chopping logs with papa, now that was extremely cool. Hiking in the mountains, clambering over rocks, crossing a mountain stream. Nicely cool too. My first university degree wasn’t exactly exciting or eventful, not to mention cool, until I piled up another degree, Modern Japanese Studies. Mmmm, now it was starting to shape up into something ‘exciting’, particularly when we were allowed to work in Tokyo for a few months. By then, it was clear that I was doing something Interesting and was totally in charge of my own existence. A few months in Tokyo? Easy. Couple of years in London? Well, that certainly did nothing to undermine my increasingly eventful life. Okay, fair enough, I had to pop in coins into a meter to get hot water and electricity. Rather uncool, but hey, that didn’t detract one iota from the ‘cool’ life that I was now leading. Which in itself was largely in my own head. My family and friends loved me for who I was, not for my glamorous Tokyo or London lifestyle.

Cool life

Years pass, we got married, had children, endured loss. I’d become slightly less in charge than I once envisaged, but I still got to make my own decisions. What’s more, it turned out to be rather cool to have a family, running our own business, going on holidays. Ah! Going on holiday means you finally get to do all those really cool things, like climbing trees, riding roller coasters, hiking in the mountains and jumping waves. Cool! And, once back home? Well, you have some awesome photos to show for it.

And all the while, I get to decide how I stand, walk, talk, eat and drink. Independent, self-sufficient and self-assured.

One day

One day you no longer get to decide how you stand, walk, talk, eat or drink.

One day you no longer get to decide how you think or even what to base your decisions on.

Shadow warrior

One day you come up against a shadow warrior. Parkinson’s. Parkinson’s joins your life, including your decision making process. Hohoho! That’s not how it was meant to be! I was the one who was in charge! I was the one who determined my own stance, my own mindset, my own life! I was the one who determined how cool I was, not parkinson’s.

Parkinson’s is so not cool

Parkinsons is so not cool. Even though you’re still aching to be cool – hiking in the mountains with muscle-toned legs, effortlessly mowing the lawn, working a 14-hour day and still having both the energy and the inclination to doing something fun with the kids. You start to compensate, by being extra brave, extra wise, or even extra human in coping with your disease. You do something creative for example, and come what may, you try to remain your usual, witty self. Why? Because parkinson’s won’t leave you the free choice of how you walk, talk, feel or participate. You’re embarking upon a Titanic Battle with the shadow warrior. You don’t want this, that or the other, you just want to be YOURSELF! And you certainly don’t want the audience watching your fight to tell you how should fight. Thanks for the advice, great, but no thanks. After all, who’s bravely waving her sword – me or you?

A new decision

One day you start to make your own decisions again. The hardest decision is acknowledging that you’ll never win that Titanic Battle with your shadow warrior. But you realise too, that you might lose your health, but never your own mind and certainly not your willpower.

And one day you’re that 4 year old girl again, in charge, making a Big Decision. This time round it’s the decision that your good old Cool, the cool from hiking in the mountains, climbing trees, jumping waves belongs in the past.

One day you have to decide that your body posture is indeed less cool than it used to be, that resting on the sofa in the afternoon is not particularly cool, that a meds dispenser divided into the days of the week is not cool either and having to practice your signature three times before placing it is far from cool too.

The New Cool

Parkinson’s forces you on a quest to discover your New Cool. So many people with parkinson’s, so many quests. But the hardest quest is the best, as it’s the one that brings you right back to yourself. Because that’s when you’re at your finest. That, my valued reader, THAT is your New Cool. Shuffling, tremors, rigidity, slowness and all.

 

Michael J. Fox Foundation

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