Saturday, April 28, 2012

Shake Up My World

Scanning the bookshelves in my den, I quickly spotted the seriously damaged binding of the old atlas I had been looking for. Worthless, except as a curiosity, I found it many years ago among some unsaleable, water-damaged books at an estate sale. Its original owner had stashed other maps among the torn and yellowed pages of the oversized book. A world map is a curious thing when you think about it. It is not a photograph (certainly not from 1923). Rather, it is someone's image of a world, typically divided in an illustrative sort of way by blue wiggly lines that are rivers and black lines forming the sometimes shifting boundaries of countries. Given the scale involved, almost anything on a world map is approximate, a cartographer's creation.
Maps fascinate me. Looking at one requires imagination, a willing suspension of disbelief. Like when I held up the tiny globe my grandson had chosen as a prize for something or other and I pointed out to him, "That is where grandma and grandpa live". Naturally enough, he was mystified, looking at me strangely as if to suggest that my dopamine-deprived brain had finally begun to run on empty. "How could that be?", I'm sure he would have said had he been old enough. But after all, we read a map like we do a book, believing the places we point out are real. Mystery or not, a map can stir one's passion. A world map can depict great adventure. A world atlas, like its mythical namesake, can be a way to hold the world in one's hands.
Maps often tell stories in a very fundamental fashion, like the one I found in the old atlas that showed Africa in the grip of fascist powers during World War II. But add narrative and a map can become a drama about  dangerous destinations and the trials of traveling there.

Hidden on the inside of the door of my bedroom closet, carefully taped at eye level, hangs my own private fantasy. Actually, it is an encyclopedia of potential experiences.  It is a world map, a depiction of my dreams. Every night as I prepare for bed, and every morning as I get dressed, I mentally track through the locations I anticipate experiencing in reality. Starting with the fog-engulfed Lima, Peru, then to Cuzco, Peru, the gateway to the mysterious Machu Picchu, the list of destinations goes on as I trace with my finger the path of travel from the left margin, one location to the next, until I hit the right margin of my map.
Just a few days from now, May 1, I will begin writing a nonfiction story on my map of the world. Not literally, of course, but still, it will still be real. It will be part autobiography, part history, with some medical science, travelogue and even comedy thrown in.  But mostly it will be biographical. It will be a script extemporaneously written by the actors, those I meet, will play themselves. But even before a word is written, or a line spoken, I know the title. It summarizes  both the quest and the outcome of epic proportions. It is the title of a journey that cannot help but "Shake up My World".

Saturday, April 21, 2012

Waiting: the Anticipation of Adventure

I could hardly wait for my 15th birthday. There was nothing special about the birthday itself, but it meant that I was about to embark upon an adventure of a lifetime. Those days of early 1967 were filled with planning, saving money, reading the packing instructions and travel itinerary, and anticipating everything I could about what was ahead. The nights were even better. I went to bed every evening clutching in my mind the imaginary start of the 3000 mile railway journey from my little farm town in the Okanagan Valley of British Columbia, to the sprawling metropolis that was host to the world exposition in 1967, Montréal. I knew that if I went to sleep thinking about the trip I would almost certainly dream about it. Every morning I awoke more excited. My dream was coming true. And when that day of departure arrived, I felt as if I had lived it before, perhaps 100 times or more. It was those days of anticipation that prepared me for one of the greatest experiences of my life, up until then. It fed the craving of my soul to know more, to reach beyond my limited horizon, to meet others who knew nothing of my life: walking to a four room school in the country, picking apples as a summer job or peddling our single-geared bikes 20 miles one Saturday just for fun.

Today feels much like it did 45 years ago. Of course, there have been many extraordinary intervening adventures, too numerous to mention. But 10 days from now I will start a journey of a lifetime; one I have been dreaming about since before I was 15; a trip around the world. Five continents, 16 countries, more than 21 cities in 75 days; it is by any measure an Odyssey. Yet, in the same way as when I was 15, I do not dream of the sights to be seen. Rather I imagine the interaction with cultures about which I know nothing.  I see lessons I will learn about lands far away. I dream of deep discussions with some who live geographically on the other side of the globe (and in other ways farther away) but with whom I share a disease and the fears and frustrations that go with it. I know already that the days had will shake up my world, indelibly touching each of my senses.
But for now I must wait, and waiting is difficult for those of us who battle impatience. At first, waiting always seems like a waste of time. Let's get on with it! Just do it! Today is all we have! The religion of immediate gratification has gripped our culture, and me, and made waiting a sin. But I am learning, albeit slowly, that waiting, like the planning and preparation that goes into the making of a sensational meal, increases the appetite, enhances the experience and extends the memory. Imagine a world with nothing but fast food. Meals would be uninspired, unappreciated and unsavored. There is much to be said for waiting; not passively passing the time, but actively anticipating the adventure that is to come.
For some, Parkinson's disease starts a worrisome waiting game. Waiting fearfully for the tremor to migrate from the right side to the left side of the body. Waiting anxiously for the stiffness to trip them up and cause a fall. Anticipating in terror the potential loss of…well…of everything we dreamed it would be.
But for me, I choose to wait with anticipation for each adventure that may come. As for me, I will reach out and link arms with comrades from around this world, friends who refuse to give in, fellow warriors who will fight alongside. As for me, I will live the life I have, not the one I thought I would have.

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us."  E.M. Forster

Saturday, April 14, 2012


I was driving faster than I should have. But it was 2:05 PM.  The visa office stopped accepting applications at 2:30 PM. Having never been there before my eyes darted back and forth from my watch, to the street signs that passed in a blur, to the numbers I found indiscriminately placed on building façades, back to the clock on my dash . There it was! On the left side of the street was a number I had been looking for. I was on the wrong side of the road. The time was 2:10 PM. Squeezing the steering wheel, even harder than I had been, I pulled hard to the left and made the U-turn in the face of oncoming traffic. Seeing no flashing lights and hearing no crunch of metal and plastic nearby, I breathed out for what seemed like the first time in the hour I had been on the road. As usual, I had left too little time to do too much that was too important to leave to another time.
Getting a visa to visit India can be a challenge. First, there are several ways to obtain a visa, none of which are particularly convenient. I chose the easiest; the online application. One simply follows the instructions by filling out and submitting an online form. However, that is only step one. Next one must deliver one's passport, a printout of the online form (together with picture of one's self in a particularly precise and unusual size) and, of course, the necessary fee ($83.75), to the nearest, but never convenient, visa processing office. Of course, one could submit the application by mail, but given that we are departing in just over two weeks, that seemed unnecessary risk.
Entering the parking lot, still driving too erratically, something seemed to be wrong as I screeched to a stop and jumped out. There was only one car parked near the door to the store front office. Quickly, I strode through the door, noticeably breathless as if I had run all the way rather than driven. Other than the two people who were being served at the front counter, there was no one waiting. The several dozen empty chairs filled the room in rows suggested a lack of customers was rare. "Is there still time to submit my visa application?", I asked the security guard sitting on a folding chair at a folding card table adjacent to the front door. He nodded and took the application form from my hand, which was shaking so much from the adrenaline rush of getting there that I looked like I was fanning the elderly gentleman with the papers. He carefully took the photograph that I pulled from my pocket, spread glue on the back from yellow glue stick and pressing it into place as he began reading my online-completed visa application. He didn't get far before his eyes stopped and he blurted out, "You will have to redo it." His voice was military and clipped, clearly communicating he meant business. I asked why my application was being rejected, before I even made it to the front desk. He pointed the long nail of his index finger to the second line entitled "Name". Naturally enough, I had written "Robert". Being under the line entitled "Surname", where the single word, "Kuhn", had been inserted, "Robert" seemed the only logical thing to put down. "It must be the same as your passport", he stated emphatically. I am sure that I reacted equally emphatic when I replied, "It is!" However, he was quick to rebut my assertion by pointing to my passport where my second name, "George" was printed. How was I to know that the singular "Name", actually meant "Names". I was angry, deflated, and immediately filled with self-condemnation as I imagined the much slower drive home, thinking of the time that I had wasted, driving frantically for no reason.
But no sooner had I begun these self-defeating recitals than the security guard said, "They can help you complete the form". He opened the door and pointed toward a sign 20 feet away on the sidewalk that read, "VISA ASSISTANCE PROVIDED". "Hurry", he said.
Breathless again I arrived at the nearby door to find a notary public ready, for a mere $20, to complete the online visa application form, yet again, make a copy and send me on my way. I arrived back at the visa processing center at precisely 2:28 PM. Despite the fact that no one was waiting, the security guard handed me a small piece of paper with a number 036 stamped on it. "0-3-6", the young woman at the front counter called before I had a chance to memorize the number. I automatically looked down at the number held in my hand before I realized that I was the only customer in the room.
I was shaking rather badly by the time I made it up to the counter. My thoughts were racing. "What if they think I am afraid, have something to hide, and am I deserving of rejection for that reason alone?" I decided rather than tell the visa-checker that I had Parkinson's disease I would wait. I handed her my newly minted online visa application form with my photograph re-pasted on the new form (having been plucked from the defective application form before the glue had dried). She pushed the form back at me and reach for the numbered piece of paper I had in my hand. Then she took my application and passport, giving me a small receipt instead. She nodded when I asked her, "That's it?"
Supposedly, it only takes a few business days to get my passport back with my storied visa stamped on an empty page. That is, if there is no further deficiency. If there is, I truly will be out of time and more than breathless.

Tuesday, April 10, 2012


It appears that the name "Petey" originally chosen as a name for this fine raccoon fellow means "passing gas" when pronounced in French. Given that the World Parkinson Congress 2013 is to be held in Montréal, a different name would be preferable.
Please provide your suggestions. The winner will receive an unbelievable prize.

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.

Sunday, April 1, 2012

Do NOT Shave Your Nose (Especially If You Have Parkinson's Disease)!

It was only 1/8 of an inch long. A couple of millimeters at best. The single, tiny blond hair perched like a sentry defiantly guarding the outside of the right nostril. It might have remained unnoticed except for the microscopic glint that signaled its presence as I looked in the mirror on this unusually sunny April 1st morning. Not a major facial flaw, I concluded, but annoying nonetheless.

Even then, I would have ignored it were it not for the Gillette double-bladed razor I held in my never steady hand. I had just finished my weekly shave with a real blade (as opposed to my daily shave with the safer but inevitably inadequate and unwieldy electric shaver).  "Why not?", I said to myself as impulsiveness took over. So, in a moment of April fool wizardry, I sliced it off, condemning the objectionable little hair to join the rest of its lower facial comrades on their long journey down the drain, ultimately finding their common resting place in the septic field behind our home.

I had no intention of leaving a reminder of my impetuous little stroke, but the sharp little pain on the side of my nose gave testimony otherwise. Soon a pinhead-sized bubble of blood stood as a bold cenotaph to the fallen follicle-dweller. Significantly more noticeable, I was reminded that shaving can be a dangerous pursuit for people with Parkinson's.
For just a split second I had the brilliant idea of leaving the crimson reminder of my folly so that I might explain that April is Parkinson's Awareness month. It was only for a split second mind you, before I blotted away the tiny clot, concluding that no one who noticed it would recognize its connection with Parkinson's disease. Instead, most observers would likely feel sorry for me and wonder how in heaven’s name I had not noticed such obvious but inexplicable spot.

I will have to think of other less embarrassing methods for drawing attention to the challenges of Parkinson's disease. Maybe an around the world trip would do it!