Tag Archives: Parkinson’s Disease

Quality of Life

When I taught English and Creative Writing at UNM-Taos, I used to tell my students that personal essays were “small things – the size of a shoe box, not a football field; a slim slice of pizza, not the whole pie.”

Personal essays are not meant to cover the waterfront, just attempts to get one’s feet wet – toy with a subject, share one’s point of view on it. After all, I’d say to my students, the word “essay” comes from the French essayer, to try. An essay writer should only try to become part of a larger conversation, not be the last word.

The subject chosen should be narrow, too, I’d say to them. Not, for example, as wide as “World Hunger.” Instead: Write about the hunger you felt that school day when you forgot to eat breakfast and had no money for lunch, so by the time you were in your afternoon classes your hunger pains became so loud you couldn’t even hear your instructor, and for the first time in your young life you could actually feel for the millions of school children throughout the world who go hungry every day.

Use yourself as Exhibit A, I’d preach. Try to make the reader see (and hear and smell and taste) and feel your puzzle piece of perspective on the wider subject.

So here I am now, not closely following my own advice and choosing a too-big title for this post: “Quality of Life.” This subject deserves, and has no doubt earned, volumes. Obviously, I can’t — and won’t — presume to be the last word on it. I can only try to add my singular voice.

The concept of “Quality of Life” has been especially on my mind lately, since I read my friend and former Creative Nonfiction Writing student Robert Silver’s newly published memoir, Keepin’ On: Living Well with Parkinson’s Disease (Nighthawk Press, 2018). This book is a profile in courage and determination that will speak to and inspire not only Parkinson’s sufferers and their caregivers, but also anyone aspiring to a better quality of life.

Here is an excerpt from Bob’s Prologue:

“Along with the million diagnosed Americans living with Parkinson’s disease, I’m mired in the fight of my life for the quality of my life. … Some struggle with life-threatening conditions. Mine is not one of them. I’m more likely to die with Parkinson’s that from it. It’s more a constant pain in the ass, forcing itself upon me, distorting and coloring my every move. …”

He continues:

“Now well into my 70s, living a life that I choose – as opposed to one that has been pressed on me – is a continuing challenge. When first diagnosed with Parkinson’s, I believed I was facing a life that might not be worth living. But more than a dozen years later, I’m far more active than many my age who don’t have a movement disorder.”

Despite his debilitating disease, Bob counts his many blessings: his supportive spouse, Dianne; his beloved acclaimed neurologist, Dr. Jill in Albuquerque, and “the pharmaceuticals in her bag of tricks”; his wide circle of loving friends; and his own “deeply ingrained inclination never to give in or give up.”

In one of the book’s twenty chapters, all written with intelligence, poignancy, and self-deprecating humor, Bob recounts his “Peak Experience,” hiking with Dianne to the summit of Wheeler Peak, New Mexico’s highest mountain (at 13,161 feet) – a feat that many younger and more able-bodied hikers would never even consider. But together Bob and Dianne, both in their mid-70s, scaled it triumphantly.

The cover of Bob Silver’s new book

So, what then, is Quality of Life made of? What are its components, ingredients? Perhaps everyone could make their own list. This is mine at this time:

*  A whole, unbroken heart

* A supportive, cohesive family

* A loving, devoted spouse/partner

* An ongoing connection with dear friends, old and new

* Good physical health/vision/digestion/hearing/mobility (and so on)

* Financial security for the duration

* Work — whether paid or volunteer — that provides purpose

* Satisfying creative and intellectual pursuits

* A clean, comfortable and comforting home base

* A sense of belonging in the town/city/state/country where you live

* Enriching and enlarging travel experiences beyond your comfort zone

* Potable water and nutritious food daily

* Faith in a higher power

* Hope for the future

How many people, I wonder, can check all the boxes? (It may surprise some WOW readers to learn that my Malian women friends, whom I wrote about at length in my memoir HOW TO MAKE AN AFRICAN QUILT, would be able to. And, too, I’d say most of the Mexicans I’ve gotten to know here in San Miguel de Allende could also check a majority of the boxes.) I certainly cannot. I can honestly check only about half of the items on my list. Friends? Oh, yes. Financial Security? Nope. Faith? Yes. Hope? Sometimes….

For me, Quality of Life is a squishy thing. Maybe it is for countless others. Maybe we need to think of it as an ideal, something to keep striving for and climbing toward, like the summit of Wheeler Peak.

In Bob’s Epilogue he addresses his Parkinson’s “comrades”:

“… Each person brings a unique constellation of situations, skills, and capacities to the fight. Each person is faced with the challenge of harnessing a particular set of assets in securing their best possible personal quality of life. My exhortation to my comrades is simply that they not prematurely or unnecessarily settle for any less of life than they might have. …”

I’d say these words could also serve as a pep talk for many more of us.