A few months ago I was an ‘ undercover’ patient at the ParkinsonNet Jubileum Congress (2014). Man, that was stressful. Imagine taking a tour in your future of less less less smaller smaller smaller. I made a point of finding the Gimme Hope handouts. They were there, but not exactly in a goody bag. I bumped into quite a few people I knew, who were mostly surprised to see a real patient at a therapists and researchers event.
And they exclaimed: oh, you still look great.
I’d probably say the same thing; it’s also nice to hear, but just suppose it was the stunningly beautiful Angelina Jolie? You wouldn’t walk up to her and gush: wow, you still look amazing! Would you? I wouldn’t.
I must admit, I often greet people (people with one serious problem or the other): You look fantastic! Don’t ask me why I do that. It’s almost as if I didn’t expect them to look so well. As a parkinson’s patient you get that all the time. Thankfully. Because it would be horrible if people said instead: hmmm, yeah, you can already see it a bit.
At receiving end
As a parkinsons patient you’re always on the receiving end, the receiving end of care and concern. Which is good, but it doesn’t make you strong, at least not as a strong as you once were. You see, you’re essentially running a marathon and in need of sound advice. Not concern, and certainly not graphic images of the marathon’s second half, because “well, they don’t only end up with blood in their running shoes you know; they often have difficulty with concentration and things too – so girl, best enjoy your quick pace now, and try not to dwell on all that blood and stuff.”
You need power. On top of the power that you already possess. You know what feels great every once in a while? When someone comes and stands shoulder to shoulder with you, and then sets about smashing that dotdotdot parkinsons to smithereens with a baseball bat, metaphorically speaking of course. No concern. Just an unflinching sharing of power. Because shared power is double power. Power that fights with you.
Power TO the patient?
I get why ‘Power to the Patient’ is one of the buzzing slogans at World Parkinson’s Day. It doesn’t make sense though. Why not? Because I’d never say to a parkinsons therapist: Power to the Therapist. Would you?
Think about it: Power to the People apparently addresses powerless people. They’re being given something they didn’t already possess. That in itself is bad enough. But surely power to the patient isn’t intended to address powerless patients? You’re not receiving something that you don’t already have, are you?
Power OF the Patient
Now that makes sense. In fact, it is hugely empowering. With a power that shines through the cracks in your life. Whether that crack is parkinsons or something else entirely.
PS – special thanks to Rev. Geertje de Vries for her wonderful explanation of Easter, using the image of the cracked bowl along with Leonard Cohen’s lyrics. “There’s a crack in everything. That’s how the light gets in”