Sunday, February 26, 2012

For Such a Time As This

Greeting him at our front door, the memories flooded over me like a long-overdue spring tide. He was balding and heavier than when I had last seen him shortly after graduating from high school, but it was his eyes that gave it all away. It was like conducting a retinal scan that confirmed his identity and hinted at all that now went with it.  
Decades ago, Gerry (his real name is Gerald) and I had been such good friends, yet the bear hug we exchanged seemed a little awkward after so many lost years. I knew from bits and pieces gleaned from mutual acquaintances over the intervening years that time and tragedy had taken a toll. And even now his eyes, which flashed with familiar warmth, bore silent witness to scenes of pain they had been forced to observe. I felt a certain hesitation as I asked myself, "Would we be able to share more than the distant memories we had of spending so much time together? Would we have anything in common after such a lengthy time apart?" But when I noticed the tremor in his left hand as it rested by his side that I realized, regardless of what had intervened, our paths again shared a parallel route.

One might call it serendipity, or the power of social media, that brought us back together. Facebook, with all its weaknesses and manipulative potential, had brought about the resurrection of our old friendship. We had ventured to reconnect. Now we faced exchanging some of the chapters from each other's biographies. Now we faced a common enemy that sought to rob us of our separate dreams.

Gerry had always displayed a wonderfully quick wit, his sense of humor providing protective covering for his soft heart. He had been very popular at school, other students forming something of a phalanx around him whether at his locker or migrating from one class to another. I remember feeling privileged to have earned his friendship, despite a multitude of differences in our circumstances. We had only shared one class, but it led to an unexplained sense of connectedness. But, just as two cars that had set out to travel together, life's journey resulted in a sort of centrifugal force of circumstances that separated us. I had often thought of Gerry over the intervening years, feeling both a deep sense of loss and guilt at my lack of initiative.

As our evening together wore on with its reminders of common memories and catching up on the events of intervening decades, sharing of laughter and tears returned. Gerry had only recently been diagnosed with Parkinson's and, as is typical, the reality of it takes a while to sink in. Those early days are turbulent times for people with Parkinson's, when the gravity of circumstance invades the confused vanguard of responses. A phrase echoed through my dopamine depleted brain: "For such a time as this". There was a sense of purpose and predestination in our reconnected relationship. In subsequent research I rediscovered that the partial sentence quote comes from the Bible, the book of Esther, which details a curious story of a Jewish woman who proved to be in the right place at the right time. These are words of encouragement, even exhortation, to view one's life as having purpose. They have been words of challenge for me at junctures of my life, a daring question, "Could it be that I am where I am for such a time as this?" 
It seems to me that we can never lose by asking this question. It does not need to impute some sort of superhero status or necessity to "wear the cape". Rather, the question asks us to assess the need to step forward, to volunteer, to be willing to take responsibility and to risk. To allow cross-examination by this question gives us an opportunity to use the mess, the mistakes and the memories of our lives for good.

My burden seemed lighter as we parted that night, Gerry and I having shared some of the fears and frustrations brought on by Parkinson's disease. Though frightening at times, we had reconnected in a deeper, if more demanding, way. It was as if our younger days had been but a foundation, built for a time like this.

Sunday, February 19, 2012

Be Happy (Yah, Right!)

I have collected foreign coins since I was a little boy. They have come from all over the world, sometimes gifted to me by friends who lived in faraway countries, sometimes picked up in my travels. Until this week I had never asked myself, "Why do you collect coins? As often happens in life, apparently unrelated ideas/relationships/dreams collide, resulting in unanticipated conclusions and consequences.
Are you happy? If you have Parkinson's disease (or any number of other life-changing diseases or adversities), it is almost inevitable that you will find yourself thinking about, worrying about and ultimately experiencing a significant potential for decline in your quality of life. That seems to make sense. But what is quality-of-life or happiness? This question was debated this past Thursday on a conference call I attended with an international group of friends of mine. They all have Parkinson's disease and want to find ways to improve the quality of life of others with PD.
The conference call was early in the morning (at least in my time zone) and, having overslept my alarm, I didn't have time for coffee before the call and had not taken my morning Parkinson's pills. Despite my best efforts, my caffeine and dopamine deprived brain easily turned with excited anticipation (and trepidation given all the details yet to be ironed out) to my upcoming round the world trip. And that brought my coin collection to mind. I imagined the coins I could bring back from all those countries I would be visiting. Somehow, the concept of quality life collided with my coin collection. "Did my collecting of foreign money improve my quality of life?" I found myself asking. The truth is that I have rarely taken out the coins, some carefully sorted and placed in plastic sleeves while others have been carelessly left loose or crammed into assorted containers. I immediately knew that it is not so much the collection I value, nor even the collecting that makes me happy. How do those bits of silver, nickel, copper and even aluminum contribute to my quality of life? It was then that the realization struck. It is not a trip around the world or even the sights that I will see that are likely to make me happy. But it is the adventure, the experiences and the relationships represented by those foreign coins and around the world trip that bring a smile to my face.

Not everyone shares my thirst for adventure, experience and relationship. And in the same way, not everyone who has Parkinson's disease will experience the same diminution of quality-of-life. Studies support the conclusion that approximately 50% of one's "happiness" is genetically influenced. Only 10% is circumstantial. And the remaining 40%? Well, it is intentional activity; attitude choices, conscious responses to adversity, refusing to be negative and taking responsibility for one's own quality-of-life. All stuff within one's control!
As my friends and I said goodbye and ended our call I found myself feeling very thankful for people like them in my life. I was appreciative of their encouragement. These are people who, despite their own struggles, are passionate about helping others. And in the process, strange though it may sound, Parkinson's disease has actually added to the quality of their lives.

"Happiness cannot be pursued; it must ensue, and it only does so as the unintended side effect of one's personal dedication to a cause greater than oneself or as the by-product of one's surrender to a person other than oneself." Viktor Frankl (Man's Search for Meaning)

Sunday, February 12, 2012

Needles:Nasty but Necessary

When I woke up, disoriented and drenched in clammy, cold sweat, the medical staff surrounding the gurney on which I was sprawled were all talking very rapidly in a language I didn't understand. Concerned looks on their faces left me wondering exactly what happened and what was next.

It was 1973. The place was post-hippie Athens, Greece. My two traveling friends and I were short of money and, having heard through the vagabond network of a solution, we volunteered to sell our healthy, North American blood for the princely sum of $30. I had been in a hurry to be done with the needle in the vulnerable venous inside of my elbow, By squeezing my hand rapidly, making a fist and then relaxing, I quickly attempted to pump the blood into the bag that hung out of sight on the side of my gurney. I might've reconsidered my impatient strategy, if I had realized how big the bag was. We had assumed it was $30 per pint (450 mL), the amounts usually taken in blood donations in Canada. We were wrong. As the blood squirted out of my arm and into the bag, it synchronously drained out of my face leaving a pasty and colorless cadaver look behind. When my eyes rolled back up into my head, someone must have noticed. I guess I had given enough blood for one day. 
The last several weeks have presented a number of opportunities to face my trypanaphobia (fear of hypodermic needles). 
First, I have only very recently realized that there is a vast array of vaccinations that are necessary for me to leave May 1 on my trip around the world. Hepatitis A, hepatitis B, yellow fever, tetanus, diphtheria, Japanese encephalitis, cholera, meningococcal disease and typhoid have now, after three visits with the travel doctor, become part of my physical makeup. With four shots per appointment, each has taken its turn piercing my shoulder with the benefit of their own disposable syringe. Why the shoulder I asked?" You would prefer it over the alternative, gluteal maximus, for several reasons, including a lack of major nerves or blood vessels. Not to mention that you don't sit down on your shoulder." 
Second, and almost diametrically opposed in purpose and pattern, was my last session as a participant in a Parkinson's disease study being carried on at the University of British Columbia Hospital. I will not go into the details, having posted on this before, but this particular appointment involved two 90 minute PET scan sessions, with a twist. This time, in addition to having radioactive dye and medication introduced intravenously through my left arm and into my brain, blood was being extracted every 10 to 15 minutes from the radial artery in my right wrist. This required the rather disconcerting appearance of a syringe sticking perpendicular from my wrist for the duration. Despite what you may think, this did not hurt, nor even make me feel faint. But it was a learning experience. You see, normally blood is extracted from a vein, which is much easier than from arteries, which are deeper and harder to find. Arteries also seem to resist the idea of having sharp objects being inserted into them as much as I do. However, we both cooperated in the name of science and improving the lot of those of us with Parkinson's disease. 
Nasty though some things are, they are necessary. We avoid pain wherever possible. Most in our society, me included, go to great lengths to escape even the tiny prick of a needle, whether to extract life-giving blood or introduce disease killing medicine. We fail to acknowledge the purpose of pain. It seems to me that to experience pain, even at the end of a pointy needle, is to recognize our humanity, something we all share. Without it we would not be born. Without it we would learn very little. Without it we would eliminate sacrifice and the benefit that others came from it. Without it we would ultimately expire as shallow people
“Pain and death are part of life. To reject them is to reject life itself.”  Havelock Ellis

Saturday, February 4, 2012

A View of the World

Stewart lives in a small room on the second floor. The single window faces down a tree-lined street, but the blinds are always closed. A bed, a chair with a small desk, a dressing table with a large mirror and big screen television take up virtually all of the floor space. The microwave and bar fridge are hidden behind the bifold closet doors, together with his meager wardrobe of well-worn shirts and jeans. He only leaves the room once a day.  It is to go to his early morning job delivering the newspapers for a few hours, alone.  It is easier that way. He doesn't have to explain any of his decisions, like choosing to eat his meals alone while watching the news, surfing through his chosen channels, staring expressionless at the faces of angry people in far-off places he has never seen. Stewart has lost his desire to go anywhere. Each night he sleeps a dreamless sleep, accepting his adequate view of the world from the safety of his self-confinement. 
Parkinson's disease can to that to people. One's world closes in, collapsing to some small, secure surrounding. The world outside becomes more frightening as strangers, and even friends, point at us with their eyes, detecting our tremors, our stiffened, slower movements or our shuffling steps. We reluctantly carry this disease like a placard, announcing its presence for all to see. Pity, confusion, even fear, occupies the awkward glances that complicate even the most casual conversation. Our world shrinks, if we let it, leaving room for very little, except ourselves. And we become the disease.

But the world is more than our plight and pain. It is a vast and varied ocean of humanity, often fathomless in its determination to endure. The world is a living place, unsafe for far too many, where men and women, boys and girls, 7 billion of us, cling to the meaning of it all. We people with Parkinson's have lost something critically important if we focus exclusively on ourselves and our own circumstances.
We all have a worldview. Although rarely discussed, it drives our dreams and aspirations, it informs our most important decisions. It is a pair of glasses through which we see and interpret our world.  The unfortunate reality is that most of us, having only seen only a very small portion of the world, rely on the media to supply our "glasses".
To the surprise of some I have no burning desire to see more sites, to play the tourist. The photos and memories that I cherish are of people, not places. It is stories I want to hear, and look into the eyes of the person who does the telling unconstrained by TV lights and boom mikes. I am less inclined to see the world than I am the people who live in it. And so it is this desire that frames my next and biggest adventure.
Going around the world. Exotic as it may sound, it has been my dream for as long as I can remember. And now, on May 1, I will be realizing that dream, embarking on the journey of my dreams. And when I return, 75 days later, I will have discarded my current worldview, replacing it with one filled with faces and words of people from 14 different places. It will be something I  can share with Stewart and others like him who give up on daring dreams coming true.