May 14, 2011

Other reactions to Phyllis Richman’s views on living with Parkinson’s

Phyllis Richman generated lots of good discussion within the PD community with her piece (“Lucky to be afflicted? Hardly”) in the Washington Post. Just look below at the comments people posted on this blog a couple days ago!

I also liked the letter to the editor by Carol Gordon that was published in the Post.  Here’s part of what she said:

Reading the article made me chuckle as Richman described proactively talking her way through a stressful situation, a foot curling up, trying to balance homemade treats with cane and keys. The frustration of pushing yourself just a little too far. But the real connection for me was knowing that she also spends time practicing a pleasant expression in front of the mirror. I feel as though my big sister has just shared a dark secret with me and made the road ahead so much easier to travel.

Lucky? Maybe. I have been able to weed out my real friends and have recently experienced the liberation of realizing that no one expects anything from me anymore. I still miss my old self; I am learning to like the new me. And I am beginning to think that maybe the new me who appreciates so much more will become a better person. 

Peter Dunlap-Shohl, one of my favorite bloggers, commented on my blog during the back-and-forth reactions to the Richman piece. But he had a lot more to say on his own excellent blog. I particularly liked this part:

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? . . .
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.

Please check out Peter’s fine blog, “Off and On: The Alaska Parkinson’s Rag.” In addition to the writing, you’ll enjoy Peter’s amazing artwork.

1 comment:

PeterDunlapShohl said...

Hi John, thanks for the hat tip. Thanks as well for your gentle fostering of debate in the PD community. Most of us are too wedded to our assumptions to question them, so we need others to do it for us. And that, I assume, is a good thing.

Festinate forward,