Parkinsons Disease: A Mixed Cursing

Here's a headline from a recent story in the Washington Post "Having Parkinson's disease is nothing to celebrate". Well, no. In the article that follows, writer Phyllis Richman, wrestles with the question "What is the appropriate attitude to one's own debilitating chronic disease?" A good question. A question to which I could not find her answer in the story, only criticism of the answers found by others.

Richman writes "I gnash my teeth when I come across people with Parkinson’s (PWPs, as we call ourselves) who declare that it is the best thing that ever happened to them." She goes on to complain "Articles, blogs and books by PWPs too often aim at the wry and cozy. They conclude that Parkinson’s brought them closer to their loved ones and opened them to a deeper satisfaction. I recognize in these authors a desperation to find value in their 'challenged' lives."

Excuse me? Aside from Michael J. Fox I have yet to hear of one person who says PD is the "best thing that ever happened to them" One can only imagine how abysmal a life must be for one to consider Parkinson's a good deal. One has to imagine this in fact, because no actual person is cited or quoted.

Likewise her assertion about would-be wry and cozy books and blogs names no names and cites no example of these sad and desperate people trying to find value in their challenged lives.

I can't speak for anyone else, but I doubt that I was alone in looking for a way to understand the purpose and value of life long before I ever got my diagnosis. Having Parkinson's Disease poses those questions in boldface, but is this really different for those without this wretched condition? If you're not desperate at some level, you're not paying attention.

How many of us will be granted a long and happy life followed by a graceful and dignified death? Who can say they will rise from their bed tomorrow stronger, wiser and more beautiful? Much of literature, philosophy and religion is a struggle with these difficult truths and their implications.

Nascentes morimur - From the moment we are born, we begin to die. There are two possible responses, denial or engagement. It isn't surprising that those who engage with the question and choose to go on with the agonizing, absurd, and wonderful enterprise of life find meaning in it. Why would they continue if the honest answer is there were none?

Richman does name one person she disagrees with. She says Michael J. Fox went too far in titling his book "Lucky Man." She is free to believe Fox is mistaken, but of the two, who is in a better position to know? Did Fox go too far, or is it Richman who has not yet come far enough?

Having Parkinson's Disease can be a "mixed cursing". No, it isn't a joy to wake unable to walk or to speak clearly. It's no fun managing and paying for the pills that can deliver relief only on the installment plan. It's not jolly and life-affirming to stagger erratically down a hall tripping over a rug. It's demoralizing to find yourself drooling when you swore you would avoid it through conscious diligence. Certainly, as the headline says "Having Parkinson's disease is nothing to celebrate". If it were, why would Michael Fox and so many others be trying to end it?

That headline, like the story misses the point. Parkinson's is nothing to celebrate. But the courage, dignity and ingenuity with which people often respond to it is inspiring. The grace shown by people who have the disease and the compassion of those dedicated to helping them can be examples of humanity at its most attractive. We would be ingrates not to celebrate that.