Friday, April 6, 2012

Virtually Unaware

I was walking quickly that sunny Spring day. Somewhat prideful at my multitasking skill, I took quick strides up Burrard Street, depending on my peripheral vision to avoid collisions with oncoming pedestrians while thumb-typing an e-mail on my Blackberry. Late for a meeting, I still needed to respond to the message I had received. Of course, were this scene to be repeated today, I would be moving slower, even shuffling a little if I was tired, taking care to avoid curbs and uneven pavement for fear of tripping and tearing my suit. I now consider walking while reading an e-mail on my iPhone an invitation to potential disaster and embarrassment. But back then, Parkinson's disease was not yet part of my vocabulary.
Given that I was focused on the screen of my Blackberry, typing my reply, I did not see what was straight ahead of me. Without so much as a hesitation, I walked through the thigh-high yellow tape that had just been placed moments before across my side of the sidewalk. With a slight tug, the warning "barrier" gave way and I stepped, not with one foot but several times with both feet, ankle-deep into the freshly poured and troweled-smooth concrete. The immediate and obvious exasperation (no… fury) on the faces of the City workers was only matched in vigor by the expletives which followed. "What the…!" bellowed the men as I tried desperately, and hopelessly, to apologize for my carelessness. Pathetically inadequate, and realizing that my life might be in danger if I continued to offer meaningless confessions of my stupidity, I made my escape. Striding up the street more quickly than ever, not daring to look back at the cursing workmen, I was painfully aware that my concrete-covered shoes, socks and pant legs drew the attention of every passerby, while simultaneously leaving a telltale trail of my red-faced retreat.
April is Parkinson's Awareness Month, declared to be such by petitioned governmental authorities everywhere. But I struggle with this declaration, even demand, for awareness.
1.      What is the purpose of seeking "awareness"? Is it to generate pity or "cash for the cure"?

2.      How does this pursuit of "awareness" square with the reality that most people with Parkinson's disease would rather not have extra attention paid to them, thank you very much?

3.      In what ways does one become more "aware" of Parkinson's disease?
As one person with Parkinson's, and therefore only one slightly informed opinion, let me try and answer my own questions.
Let's be fair. Parkinson's doesn't deserve more attention than the plight of many other people facing painful, perilous, punishing or pitiable circumstances. However, just as I carelessly walked into wet cement while focused on my technological toy, most folks are virtually unaware of afflictions confronting our world. We are more aware of the latest technology than the needs of our neighbors.  This may based on a fickle hierarchy of health issues created, or at least promoted, by news and social media fixated on "selling" drama and opinion to our youth-oriented, instant gratification-seeking populace. Apart from a few notable and laudable exceptions (Mohammed Ali, Michael J Fox, Brian Grant, and now, Wayne Gretzky's father), most people identify Parkinson's disease with the aged and unimportant; old men and women relegated to seniors' facilities, out of public view.  Let's face it, old, shaky, soft-voiced, stiff-limbed men and women living in old folks homes are hardly the stuff of Hollywood.
However, despite my concerns, awareness of Parkinson's (as well as a great number of other "less popular" diseases) would be a good thing to pursue, especially in a generation myopically focused on self-fulfillment.  But awareness should start, in my opinion, with those farthest away from the camera's lens and microphone's reach: our senior citizens; the elders of our society. As a Jewish philosopher, Abraham Henschel, said, "A test of a people is how it behaves toward the old. It is easy to love children. Even tyrants and dictators make a point of being fond of children. But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture."
It is in this context that I recognize the importance of awareness. We need awareness of the disenfranchised, the unheard, the powerless, at home or around the world. We need to hear their stories. That is one of the reasons I am  taking 75 days and going around the world; to South America, Africa, the Middle East, Asia and South Pacific.  There I will meet others in the global Parkinson's community. I will have the opportunity to gain a complete new actual, not virtual, awareness.  I invite you to join me on this journey (leaving May 1), and share my increase in awareness, at least virtually.

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