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)

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

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.

It's in the Past

War stories become history. Anecdotes become legend. A mirage becomes a memory. Remembrances and recollections…well…float between fact and fiction. Two entirely different events forced me out of my present orientation and into the past.

The antique microphone icon on the iPhone in front of me blinked, signaling as it recorded my words, bumbling and inelegant as they were. I wasn't exactly sure why I was being interviewed in the empty classroom, but the young, obviously intelligent woman was asking questions about my college years, the early 1970s.  Supposedly, my answers, and the results of a prior photo shoot, were to be used in a 50th anniversary alumni publication. It was embarrassing how significant events (to me at least) from over 40 years ago came spilling out. Some of the stories I had retold many times before, while others leapt to mind as if from brown-edged photographs just then discovered, tucked in an old album. We were carefree teenagers, or diligent young adults, depending on the day. We had left our various home towns for the small college, longing for life outside our parents’ pretended sovereignty. My now dirty gray hair was then dirty blond, and much longer. My camouflage green coat was a Vietnam War castoff that I wore without knowing whether I was protesting something or simply posing as someone who might. Immaturity, agility and good balance led me to the attention-seeking activity of sitting on the handlebars of my bicycle, looking over my shoulder and pedaling backwards to class. I momentarily wondered if, despite my Parkinson's tremor, stiffness and loss of full equilibrium, I could still pull it off. Thankfully, there was no bicycle around to illustrate my continued immaturity. The interview led my thoughts through a labyrinth, a time tunnel I had rarely visited, to an age of growing awareness of how vibrant an adventure life could be.

Friday night's venue was entirely different; a swish golf and country club hosted a reunion of a law firm where I used to work in the early 1980s. It was an eclectic group of people then who, despite having maintained their individualistic traits, seemed to have mellowed since. Hugs, mostly sincere, replaced handshakes in many cases, something that would never have occurred when we shared the offices and workstations 30 years ago. It was apparent that those who had attended were honestly pleased to see each other. Stories, some amplified with age, were told with enthusiasm, especially if the main character was not in attendance and storyteller had visited the bar frequently. There was warmth and laughter in the room, a far different feeling than the typically serious, muted coolness that had so often permeated the corridors of the old firm. Not surprisingly, it was the staff that had come up with the idea and planned the get together, for it was them, not the lawyers, who were the heart and soul of the place. I was happy that they had so successfully pulled it off, for there was an inexplicable value to catching up with old colleagues. Despite having to explain the PD reason for my shaking arm and leg to a few, I felt comfortable in who I was and am. There seemed little left to prove, no good reason to try and impress.

Recently, a rather self-evident thought occurred to me: the older I get the more past I have to remember. It has been a long journey, a path of unpredictable twists and turns which, when I look over my shoulder, makes me smile. It has been what it was meant to be. And I am thankful for the memories, shaded and scattered though they may be. They are like the patches sewn together by my grandmother to form a quilt. It may not be a work of art, but it is warm, unique and meaningful (at least to me).

Six Benefits of Six Years of Parkinson's Disease

"It's my anniversary. Six years ago today I was diagnosed", I found myself saying to a friend as we discussed our common ailment, Parkinson's disease. He reacted with a mixed question/exclamation, "You keep track!?" What he really meant to ask was, "Why do you?" That unasked question and its potential answers hung in my mind for hours like cigar smoke in a room with no ventilation. To me the anniversary was unavoidable. January 19, 2006, was a day in which my life changed irreversibly, irreparably and irrepressibly. A memorial had been built that day to which I return annually. Difficult though this pilgrimage has been, I try to recall what it felt like to hear news that began to permanently alter my priorities. The truth is I was numb, and the anesthetic effect of the neurologist's words took years to wear off. It may not have yet.

However, that day was not, as it may have felt, the beginning of the end. Yes, it began the slow strangulation of some dreams and the suffocation of naïve assumptions I had made about living. But that needed to happen if I was to maintain an attitude of adventure in the days that lay ahead. As surely as birth of spring follows the death of winter it remains true, "to everything there is a season". The old must make way for the new. Living began to school me, teaching me lessons I had never anticipated learning. It was like that treasure hunt game we played as kids where our parents hid a series of clues, each one leading to another clue until finally we reached the "treasure". And so it has proven true; the best teachers are the toughest.

Like a poor student who has difficulty paying attention, I often fail to learn my lessons the first time through. But here are a few of the benefits that six years of Parkinson's disease has tried to bestow on me.

1.      Impatience with myself and others is really a form of arrogance, a failure to acknowledge that there may be a good reason why someone else is going slower than me. I know how fumbling with keys or coins, dressing, walking and eating more slowly, all seem to aggravate those in the "fast lane", attracting a scowl or stare that effectively communicates, "Get out of my way!"

2.      Discomfort with the disabled, deceased or simply different is born out of fear. Uniformity has no value when it comes to people. Each one of us is unique. The truth is that we can only be accepted by others by accepting the diversity of others.

3.      True friendship flourishes in the mutual sharing of weakness, vulnerability and inadequacy. Hiding the symptoms of our diseases only drives others to do likewise, leading to loneliness. We need each other. Each relationship requires risk to test its strength for the storms that lay ahead.

4.      Pain is neither part of a sadistic plan, nor is it intended to punish. Pain has a purpose. It may be darkness without which the light cannot be seen, a reminder of what is important. Has anything worthwhile been gained except through hardship and sacrifice? The greater the goal, the greater the cost.

5.      Life is short. We all seem to act as if that final day will not come. There is no need to sprint. Haste is just waste. And there is no reason to dawdle. Pace yourself for the race. You will need the energy at the end.

6.      Invest time, the ultimate nonrenewable resource, wisely. Make each day count. Search out your calling and pursue it passionately and relentlessly. We each have something to contribute.

Whatever your anniversary, be it one of pain or pleasure, recognize it. Use it to build hope and purpose.

It's Complicated

"It's really very simple."  The words tumbled from his mouth in a braided mixture of conviction and doubt.  Like the confluence of two streams into one river, the result was both unclear and deceptive. It was obvious that the man in his 70s desperately wanted to believe his bold assertion. Perhaps it was the fear that my legal fees would increase if the matter was portrayed as complex. Maybe it was his inability to come to grips with the convoluted history and intricate detail of his story. Whatever it was, I knew instinctively that he would not be happy with my advice. Inevitably, his emphatic opening statement would either be cause for his embarrassment or he would leave the boardroom frustrated at having wasted his time explaining his “straight-forward” problem.  

It was a potential for family conflict that had been bubbling underground like hot lava, ready to crack the apparently well-ordered surface at the least provocation, leaving behind ugly scars that would never completely heal. The inevitable eruption would splash red-hot anger into hairline cracks in relationships, splitting open the hidden stress fractures that had been created over many years.

The man's wife had died, after a long illness, leaving him confused and companionless. After a short period of mourning he found himself searching in quiet desperation to fill the void he felt. Within a year of his bereavement, an attractive widow sauntered into his life, restoring his sense of romance and reason. He and his second wife were soon married in a simple ceremony attended by their respective children and grandchildren, all of whom seemed uneasy in their celebration of the couple’s happiness. Difficult, unasked and unanswered questions began to form. It was complicated. 

That wedding was several years ago. Now, reality having set in, this gentleman wanted me to draft a will that would equitably distribute his sizable net worth after his death. After enduring two hours of sometimes painful discussion, my client left, dejected, with a list of questions much longer than the one he had arrived with. The "simple" questions: how would he distribute his wealth without alienating his new spouse or children; how could he avoid leaving a legacy of litigation?

There seems to be an unwritten rule when it comes to people's perception of simplicity. The more simple we wanted something to be, the more complex it is in fact. In this way, birth and death may appear to be rather simple brackets for the in-between living. If they are simple, which is debatable, both events often create unimaginable complexity. For within the parentheses called life lay many complex challenges and choices. Despite appearances, the older one gets the more complex one's life can become as  many of our lifelong assumptions are dashed on the rocks of reality. 

In my case, I held onto a delusion of uncompromised capacity to enjoy life as I age, only to have it disrupted by disease and the diverse menu of disabilities it drags along. Only lately have I begun to recognize my oversimplification of my diagnosis: Parkinson's disease. Perhaps, due to the slow onset of the disease in my case, the potential peril has been, until lately, like lava creeping only modestly threateningly down the slopes of a somewhat distant volcano.  I have successfully pushed self-assessment and its haunting cross-examination to the periphery of my day-to-day life. But maybe, like my client, my doomed and deluded attempt to remain in control of life cannot survive. I must engage with the complexity of it all.

Life is complicated. People are complex. We must understand what we can. Then marvel at the mysteries that remain.

“Abandon the urge to simplify everything,

 to look for formulas and easy answers,

and to begin to think multidimensionally,

to glory in the mystery and paradoxes of life,

not to be dismayed by the multitude of causes and consequences

that are inherent in each experience -- to appreciate the fact that life is complex.”

M. Scott Peck

The "Best Before" Date Myth

Every once in a while I read the obituaries in our fridge (icebox). I don't mean curling up with newspaper atop the crisper drawer in the refrigerator. I mean determining the "shelf life" of our chilled food supply. Few things frustrate me more than throwing out containers of flavored yogurt that have never been opened, thinly sliced corned beef sealed in the apparently too distant past by the Safeway butcher, or a carton of orange juice rushed to our home from Florida only to languish too long in the coolness of the fridge door. In each case, the prominently displayed date on these consumable items suggests certain death if even a small sip or nibble is taken. It is as if the development of germ warfare has begun in our kitchen and must be destroyed. Sometimes, when I open the fridge door, I am sure that I hear the ticking of a 100 clocks marking off the seconds until botulism has conquered our entire food supply. Most times I smell a conspiracy by retailers. Who sets these dates? What sort of safety factor is built-in? Who monitors these "best before" bandits? Doesn't this date stamping practice simply appeal to our laziness, our quest for convenience, our penchant for eliminating the need to discern?

What did we do before, the invention of the now ubiquitous "best before" date stamp mindlessly applied to almost all food and drug products. And what does it mean, "best before"? Whatever it was originally intended to mean, it now virtually demands that consumers pitch the product the day following, failing which dire consequences will quickly ensue. No more need to sniff carefully for smells of deterioration. Observation skills to detect small patches of mold are no longer necessary. Just read the label and toss. Fear trumps forensics and economics.

This is been a difficult practice for me to adopt. When I was very young, I would be sent to the basement room where jars of homemade jam and "canned" fruit (the "canning" process was a misnomer as thick jars were used to seal fruit in their syrup) lined the shelves in annually replenished supply. There was a date on these glass containers, but it was the day, month and year that the fruit had been pulled from scalding water and vacuum sealed. I was instructed to choose the oldest jar to bring upstairs. Aside from ensuring that each jar when opened let out a small ‘pop’, there was only a limited inspection undertaken. In fact, if a bit of mold lined the wax seal of some strawberry jam, it was simply scooped off without a second thought. In like manner, if cheese wore a little fuzzy green coat when pulled from the cooler it was merely skinned and used without any consideration of impending death or disease.

Today, most "civilized" parts of our world have seemingly stamped "best before" dates on the foreheads of all older members of society. We all seem to have been conditioned to believe that at a certain time in life each person has outlived their "best before" date. That person has become outdated, a candidate for the discard heap, having nothing useful to contribute any longer. As I approach my 60th anniversary of entry into this world, I sometimes wonder whether I will soon reach (or maybe already have reached) my "best before" date. Certainly, having a degenerative, chronic disease, Parkinson's, has the potential to leave me feeling somewhat moldy and beyond my prime. But is the societal "best before" message true?

An instructive experiment was undertaken on the expiry dates used in 100 medications. It was determined that 90% were effective and safe for as long as 15 years after the specified date. In fact, "best before", read literally, simply and most unhelpfully means what it says, that a particular product is likely to be best if used before a particular date. It does not read "bad after". In fact, it is, at best, a qualitative guidance.  With the exception of fine wines, and serious whiskey, which could usefully have a "best after" date, what products are not "best before" the earliest possible date?

Maybe it's time to return to making our own decisions about when something, or someone, is no longer useful. Maybe looking beyond the surface will allow us to find a lot of good left to enjoy and a lot to contribute. Maybe there is no real "best before" date.