The great thing about getting a nasty disease is that you start to appreciate the little things in life soooo much more than you used to. Isn’t it just wonderful to watch the sun rise, set, or whatever your sun does? To hear a bird sing, even if this particular little thing does keep you awake at 5 in the morning. You know, you’re just so happy to be alive, that not even a bird singing the same song over and over and OVER again, can change that. And it’s so liberating, a disease, don’t you think? I mean, you needn’t worry about your appearance anymore; it’s only inner beauty that counts after all. Ha. If you only knew, you definitely wouldn’t think THAT any more, believe you me.
I’m usually okay with prejudices of this nature. Because I know full well that there are worse, far worse ones out there. The bad news is: they’re all mine. In fact, I have quite a tidy library of prejudices about what people without Parkinson’s think about me.
My Prejudices – what people without Parkinson’s think about me
“That I’m no longer able to make a valid contribution to anything of any real importance, that I’m shaking 24×7 and, of course, can no longer think straight, never mind quickly. Which is not nice for my husband or worse still, my children, poor things. That I spend more or less the entire day (and night) in bed and take copious amounts of medication that also change who I am. Or that I’m drooling because I can’t swallow properly any more and that I’ll be completely decrepit within ten years. That’s definitely what they all think about me”
At this point my poor prejudiced mind should get a grip. But it doesn’t. It goes on.
“Next time I catch someone thinking something about me, I’ll be ready. Imagine I come across a Thinker who thinks: Oh, who’s that again, I know her from somewhere? Oh yeah, Facebook. What did she have again? MS or something similar, no, yes, Alzheimer’s, how awful, or no, wait, wasn’t it something else, Parkinsomething? In my mind I’d retort: good grief, Alzheimer’s or Parkinsomething? That wouldn’t be quite so bad, but no, it’s actually much worse, I’ve got ParkHeimer, the contagious strain of Parkinson’s, very rare. Oh no, about to sneeze, sorry, hatshoooo, ooh sorry about that, what were you saying again?”
That’s more or less what I think people think about me, and what I’d like to say to make them think again. Which actually makes me far more prejudiced than all of them put together. Because most people don’t think what I think they think at all.
Most merely think: “It must be so difficult for her and her family”. Others possibly think: “I daren’t ask how she’s doing, because I don’t want to end up hurting her with the wrong question”. I know for a fact that many also think: “She’s so brave, I don’t think I’d be coping quite as well as she seems to.”
So. There you have it. I’m the one who’s being ridiculous about what other people might think, when in reality they think nothing of the sort.
Can’t be them. They look normal.
I have a confession to make: a while ago I was invited to a Parkinson’s’ patients meeting. Had never been to one before, so was a little apprehensive. Glanced around the room, but couldn’t find the people I was supposed to meet. I did spot a group of happily chatting people and my initial reaction was: can’t be them, they look so normal. Only to realise that they were indeed the very people with Parkinson’s I’d been searching for.
“RIGHT MS. ROBIJN, YOU’VE JUST FAILED YOUR INTENSIVE TRAINING EXAM OF ‘HOW TO GET RID OF ONE’S PREJUDICES’. PLEASE GO BACK TO SQUARE ONE IMMEDIATELY AND ENGAGE YOUR BRAIN FOR ONCE. AND NO, PARKINSON’S IS NOT AN EXCUSE.”
Parkinson’s is an easy target for a whole heap of misconceptions and prejudices. I know my own certainly used to triumph. Leaving me with a Restricted View Ticket for the theatre of life, friendship, support, and freedom. It takes time to let go of one’s prejudices, just as it takes time to find your New Cool. But I’m starting to believe that you and I both think along exactly the same lines: forget prejudices, forget Parkinson’s altogether even, because in the end, they’re only blocking our view.
If we meet, you and I, and you happen to notice even the tiniest glimmer of that former, “I know what you’re thinking” brand of prejudice, then kindly remind me of this blog. You’d be doing me, as well as all those people I wrongly suspect of unrealistic prejudices, a massive favour. And I wouldn’t want to have to sit through that Exam all over again, now would I?
Really interesting blog from Mariette on prejudices and Parkinson’s. Definitely worth a read!
— Parkinson’s UK (@ParkinsonsUK) 18 september 2015
— Parkinsons.Me (@parkinsons_me) 4 april 2016