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Being Defined by Parkinson's Disease

Monday July 24, 2017

We all hate the idea of being defined by our disease. It’s why we tag ourselves with labels like “Parkinson’s Fighter” or say things like “I’ve got Parkinson’s, Parkinson’s doesn’t have me.” To be defined by PD is to be seen as somehow less of a person than you were before you acquired the tag.

illo for blog #38

A tiny tremor kicks up in a little finger and suddenly we are classified as damaged, weak, defective. We are the one the wolves would cull from the heard on the television nature special. So we push away the idea that we are our disease in any measure, vowing not to be victims.
 
But let me ask, is this just another Parkinson’s trap? Isn’t insisting that we aren’t at least to some extent defined by this disease an attempt to go headlong against reality? I’m certainly not the person was 20 years ago, or even five years ago. I’ve got the scabs and bruises to prove it. But who is the same person they were then? I mean besides you, Dorian Gray?

There is no shame in acknowledging that Parkinson’s Disease breaks your stride. There is no shame in your depression, your loss of balance, your slurred speech, or any of the many effects of Parkinson’s Disease. Sooner or later we all face similar fates.

Unless I can live the truth there is no shame in having Parkinson’s Disease, I’ll waste time and precious energy trying to cover it up as I try to act “normal”. And two things I haven’t got enough of to waste are time and energy. So let’s drop the pretense and move forward where we can.

I think I believe that. My behavior argues otherwise. I try to hide my symptoms, as much as to avoid embarrassment at my compromised condition as to minimize the inconvenience they cost me. It’s only human. And there is this: the perception of others. Unless I successfully hide the symptoms of Parkinson’s Disease, many will look at them and see me as defective, and treat me as such. That too is only human, all too human.

So here’s the choice: either make a superhuman effort to not care about what people think, or make a superhuman effort to cover up my condition, hiding my abnormality.

But what is “normal”? As much as I wish it weren’t so, aging, sickness and death are an inescapable condition of living. It’s a package deal. You sign up for life, and decline is part of the contract. “It’s a short life and a long time underground” as Country singer Robbie Fulks put it. And he was addressing the healthy! We may have more in common with those without PD than we thought.

Let’s not confuse normal with good. It used to be normal to live a drastically shorter life span. It used to be normal to own other people. It used to be normal to give loyalty to our King because of divine right, and on and on. Yes, there are plenty of reasons to hate having Parkinson’s Disease. But let’s forget about looking or feeling abnormal as one of them.
 
The fact that many people with Parkinson’s defy normality, continuing to live independently and with a decent quality of life long after we should be incapacitated is highly abnormal. It is something to be celebrated along with the science and medicine that make this wonderful abnormality possible.

Get out there and mince like nobody is looking. You have a message for the World:
“Abnormal and Loving It!”

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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