A Parkinson’s charity (dedicated to finding a cure for Parkinson’s) wanted to know what a cure for Parkinson’s would mean to us people with Parkinson’s. I’m sure that they asked this question out of genuine interest. And I’m sure that the question was well-intended. In fact, I’m positive about that.
But after 8 years of living with Parkinson’s, I’m afraid that I’d have to reply:
As a Parkinson’s-free person, you should know full well what it means to be Parkinson’s-FREE. Do I really need to spell out just how lucky you are to be Parkinson’s-free? Don’t you appreciate being Parkinson’s-free? Must you instead ask me (a pwp for 8 years) what a Parkinson’s-free life would mean to me?
Take a look in the mirror
Now, what do you see?
Sheer joy, happiness, gratefulness, a huge smile on your face, simply because you’re Parkinson’s-FREE?
No? No smile? Not even the tiniest curl of your lips? NOTHING??
SHAME ON YOU!
Because if I were you, I’d be smiling, singing, dancing and crying for sheer joy, for the simple reason that I was Parkinson’s-FREE.
So, how come you don’t appreciate your Parkinson’s-free life a little bit more? How come you need to instead ask me, how much I’d appreciate a Parkinson’s-free life? And how come that after all those years you spent doing research into Parkinson’s and talking to people with Parkinson’s, you still have to ask what a cure would mean to me?
People in the Mud
The next time that you’re up to your neck in mud, what would you like me to do: pull you out or ask “Soooo, what would it be like to be mud-free? Because, you know, I’m trying to raise awareness for People in the Mud, so that we can raise funds for research into what it’s like to be stuck in the mud, I mean, research into How-to-pull-people-out-of-the-mud, so that we can find some kind of solution, but hey, we all know that could take an eternity, so tell me, while we’re at it, “What would it be like if you were ….?”