Saturday, December 29, 2012

Low Speed Chase: Pursuing Happiness with Parkinson's Disease

Twice in my life, I thought I could never be happy again. The first time as a boy, when I lost my mother to breast cancer. The second was as a man, when I was diagnosed with Parkinson's disease. I was wrong both times. I started thinking about this after running across this James Fallows interview of Gretchen Rubin about happiness.

Happiness seems in some ways like a lightweight virtue, any idiot can be happy. In fact one could argue that you'd have to be an idiot to be happy in such a broken world, a world that contains Parkinson's and many worse things.

But don't sell happiness short. In no less a document than the Declaration of Independence, the "pursuit of happiness" is listed right behind life and liberty as among the primary rights of all people, conferred on them by their maker. (I know, it lists them as the rights of all "men" not "people" but who among us is backward enough to stick to this limited idea of humanity? OK, who besides Jefferson Davis and Justice Scalia?). So happiness, or at least its pursuit, is our God-given right as humans.

Which brings us to the problem. If you are not able to walk, to talk, to even rise from a chair and remain standing how are you supposed to pursue happiness? It's difficult enough to be happy without the attendant woes of PD. Has our God-given right been invalidated? Should we be eligible for a refund for the unused portion of our lives?

Maybe, but don't hold your breath. As Rick says to Ilsa in the classic "Casablanca", "The problems of three people don't amount to a hill of beans in this crazy world". We are small and helpless creatures. In a way, that's comforting. As individuals we are capable only of limited impact, for better or worse. If the world is screwed up, we hold little direct responsibility.

But if our lives are screwed up, there is hope that we can do something about that. Even with PD, this is not the sort of thing that others can do for you. And it's perhaps impossible for some to do it for themselves. But the idea that we all must go through life miserable can't be right. Who can disagree when Tzeitel tells Motel, the nebbish tailor in "Fiddler on the Roof" that "Even a poor tailor deserves some happiness."

How does a person with PD go about being happy? Strangely, social scientists have found that humans seem to have a happiness bias built into our nature. People have been found to be flexible in what constitutes their idea of quality of life. When their circumstances change, they adjust their expectations and think of themselves as happy in previously unacceptable circumstances. Is this delusion? Perhaps. But if it is successful delusion, how can it be argued that these people are unhappy?

Beyond our natural bent to adjust the thermostat of happiness, what can we do? Begin with the realization that while having Parkinson's Disease is bad, there are certainly worse things. (While I have heard the advice to sufferers that it is helpful to realize that there is someone worse-off than you, this seems like a selfish way to find comfort. Basing your happiness on some other poor bastard's unhappiness seems trollish and uncharitable. It's better to think of ways you could be worse off, and probably more compelling to boot.) Mortality can give us focus. Think of your final hours and what you would regret not having done more of. Then start doing more of that.

If you are like me, the primary thing that will emerge as important from the death-bed perspective is building and maintaining social networks. This can be hard to do with PD, but consider this: there is more satisfaction in doing what is difficult. A great deal of your happiness may lie in how successful you have been in the past at doing this as your network of family, friends, and colleagues helps break your fall. But it is never too late to join a support group, and the amount of comfort derived from knowing you are not alone is substantial.

Next, do not let Parkinson's Disease fool you into giving up what you do for fun. I quit riding my bike for a time because I was convinced that my sense of balance was probably impaired by PD. Well guess what. It probably is impaired, but I can still ride just fine. The feeling of freedom it gives me is a liberating joy. And there are ways to adapt your abilities to do the things you love. When my guitar playing began to suffer from my difficulty in coordinating my left hand, I pursued slide guitar, which in some ways simplifies the role of the left hand and allows the PD-afflicted guitarist some satisfaction when playing in the traditional way no longer can. These types of work-arounds, in addition to to the rewards that they bring in and of themselves, afford the additional satisfaction of feeling that you have outmaneuvered Parkinson's in its relentless quest to take everything you value away.

Third, find some way of helping others. This is a formidable way of connecting with other people. Among the obvious ways of helping for those of us who have PD is to contribute to a support group or participate in medical trials. This is one way your illness, instead of disqualifying you, makes you uniquely suited to lending a hand. Unless you are a psychopath this will contribute powerfully to your sense of self-worth. It will also fortify your social network. Two birds, one stone, dude.

Exercise. There are as many reasons to  exercise with pd as there are cells in your body. Exercise can be done as part of a group, which helps us cope with loneliness and feelings of alienation. Exercise enhances positive body chemistry vis-a-vis depression, and may promote the brain's ability to repair itself.

One common destroyer of happiness is clinical depression. Discuss depression with your neurologist if you notice common depression symptoms in yourself. There are established treatments that are effective for most people. It is not necessary for a majority of us to suffer from this "Noonday Demon".

Please remember that nobody is happy all the time. But the fact that you presently may be  unhappy does not mean you will always be sad. And avoid judging yourself or others too harshly if they seem unable to be cheerful and bright. We have a right to pursue happiness, but no guarantee we will actually find it. Still, if even a poor tailor deserves some happiness, surely a Parkinson's sufferer deserves some as well. Don't give up the chase, even in slow motion.  


Adele said...

Beautiful, Peter. I find happiness most often when I am willing to be happy, I think. I used to sing with a group that sang a song called, "Drive Dull Care Away." Bits of it have been running through my mind lately.



Why should we of our lot complain
Or grieve at our distress?
Some think if riches they could gain
T'would bring true happiness
Alas in vain is all their strife
Life's cares they cannot allay,
So while we're here with our friends so dear
Let's drive dull care away.

Why should the rich despise the poor?
Why should the poor repine?
While we will all in a few short years
In equal friendship join.
They're both to blame, they're all the same
We are all made of one clay,
So while we're here with our friends so dear,
let's drive dull care away.

The only circumstance in life
That ever I could find,
To conquer care or temper strife
Was a contented mind.
With this in store we have much more
Than all things else convey,
So while we're here with our friends so dear,
Let's drive dull care away.

So let us make the best of life
Not rendering it a curse,
But take it as you would a wife
For better or for worse.
Life at its best is but a jest
On a dreary winter's day,
So while we're here with our friends so dear
Let's drive dull care away.

pete langman said...

Ha! This brought a smile to my face, as I know exactly where you're coming from. When I was diagnosed, a great friend told me he was going to buy me a lap steel as I'd soon have 'the best vibrato'. Cheeky git. I laughed.
Last year I switched to batting left-handed in cricket because of PD and a shoulder op ... it was either this or don't play. I'll soon switch to left-handed even though my shoulder's much improved.
Parkinson's is one fucker of a disease, but you either embrace it or it'll blow you away.

Peter Dunlap-Shohl said...

Hi Pete, thanks for your comment. In one of the never-ending ironies of life with Parkinson's Disease, I had the same thought about vibrato, but found that a decent vibrato is one of the things I find most difficult when messing around with the lap steel. One big advantage of the lap-steel for Parkies: it's played sitting down.

Best regards


Peter Dunlap-Shohl said...

Hey Adele, the phrase "With quips and smiles and wanton wiles we'll drive dull care away" is a phrase that has been part of my mental furniture since I first heard it from some now-forgotten source long ago. (Thurber?) I suspect now it is a portion of a different version of this song. I'm not sure why this fragment stuck in my head, aside from the music in the words themselves. I do believe there is truth in the implication that it takes a certain amount of inspired labor, those wanton wiles, to do the job of being happy.

Adele said...


I love learning about variations of much-loved songs.

The idea of being happy being a job reminds me of when we say that the work of children is to play. You have defined the life's work of each person with Parkinson's, and really, each person.