Monday, February 10, 2020

What’s Next?

There always seems to be a letdown after an adventure.  In most cases, the air in the balloon begins to escape before the end of the journey.  Such is the case in my trip to Antarctica.  That deflated feeling begins to creep into the final days and hours as I anticipate the dream, converted to an experience, become a memory. 

It took 7 years for the idea of going to Antarctica to become a reality.  It was conceived in the waning moments of the trip I took with my dear friend, Carson Pue, around the world in 2012.  We were in New Zealand, the end of the trip and splitting up to travel different directions after together.  We had visited 17 countries, experiencing more adventures than we could count.  We found ourselves asking, “What’s next?”  We had visited all seven continents except one, so it seemed logical to answer that question with ”Antarctica”, despite knowing nothing about what was involved nor having any appreciation for what challenges would become part of our lives in the following years.  I won’t recount the circumstances, except to say it has been a difficult series of events since we naively agreed that the next big adventure would be Antarctica.

Now, the journey to Antarctica is over, as well as our visit to Buenos Aries, Ushuaia and Puerto Madryn, all in Argentina, the Falkland Islands (under Great Britain’s flag) and Montevideo, Uruguay.  Our venture to the last continent, the most southerly place we will ever experience, is behind us.  The memories of this extraordinary expedition are already indelibly etched by the synapses into our minds (if that is what synapses do, physiologically speaking).  We are not likely to forget being bundled in layers of clothes to stand on deck staring in disbelief at the brilliant white and blue icebergs, and the countless glaciers with sheer faces intersecting the frigid waters.  There were innumerable sightings of playful penguins racing our ship as well as too many whale sightings to recall.  Though uninhabited by humans, other than the few itinerant occupants of small scientific stations scattered around the perimeters of this frozen continent, it is much bigger than I ever imagined (5.5 million square miles, 14.4 million square kilometers – the size of the continental USA and Mexico combined and 1.5 times larger than Canada).  It is difficult to believe that, while much of the earth’s surface has been occupied, or at least discovered, for millennia, Antarctica was only discovered in 1820, a mere 200 years ago, and is far from being fully explored.

Still, despite my age and decreasing mobility, energy and time, I find myself searching my bucket list for the next adventure; asking the same question, “What’s next?  Because it is never too soon to plan the next adventure.

I have learned something about adventures over the years. They represent more of an attitude than an action or activity. They are not so much an idea as the experience realized when circumstances dictate or provide opportunity. It doesn’t take a trip to Antarctica to have an adventure. But it does take a willingness to engage and embrace uncertainty and risk, to step outside of the comfort zone we so readily occupy. The recipe for adventure needs a dash of courage, a sprinkle of faith, and a measure of patience as one waits for the unique taste of significance to fill one’s senses.

Whether challenging the unfamiliar elements, grappling with fear, disease, failure, loss or insecurity, when an adventure reaches the time when it’s almost over, or there is a new chapter, there are three things to do.  First, plant the memories in your garden of adventures, where you can stroll through the variegated colors, moods, characters, significance and impact.  I need to remember the things I learned along the way, not just ‘move on’.  Second, do not let melancholy, disappointment or resentment taint the final hours or days.  Drink it to completion.  I am often prone to miss the special or surprising endings waiting for me unless I am looking for them.  Third, begin in earnest to imagine the next adventure before the current one is fully spent.  Big or small, commit yourself to live on purpose, embrace the known and unknown.  Dream again.  Plan again.  

We are made for adventure.

Tuesday, January 28, 2020

Overwhelmed by the Vastness - Antarctica

Buenos Aires is a long ways from Vancouver, even at the speed of a state-of-the-art Boeing 777. Including connections, the air portion of the journey took approximately 24 hours to cover the 12,300 km we traveled.

Add to that more than three full days of steaming southward 2700 km on board the Celebrity Eclipse from the capital of Argentina to our first port of call, the city of Ushuaia, labelled “the end of the world”; the distance seems immense.  Still, it is more than 1000 km to Antarctica.
Far from land, during the full days at sea, the South Atlantic Ocean offered no points of reference, except perhaps the stars that struggled to be noticed during the few, short hours of night. Increasingly, as we journeyed southward, we were replacing the familiar with the unknown, and in the process experiencing a deep and overwhelming sense of the vastness of distance, time and space.

While the passage has been smooth to date, and the weather almost warm despite patches of rain and a little snow, there seems to be a shared sense that the waves may not continue to be limited to 10-foot rollers. And the increasingly sharp bite of the wind on deck seems to foreshadow a colder climate would soon be upon us. Indeed, it is the uncertainty, the mystery and the adventure that seems to have drawn many of the other passengers to this most southern of all itineraries, a far different crowd from those occupying the sizzling beaches of the Caribbean.

Why travel all this way when the scenery, weather and water are all so severe, so unwelcoming, so far from the familiar?  Maybe because such a place; the coldest, driest, most isolated place on earth, where simply surviving for more than a short time defies our pride, scorns our self-sufficiency, and reduces our self-proclaimed conquests into short-lived tales of arrogance.

Rounding Cape Horn lighthouse, I can only imagine the incredible fear and feeling of disconnection from the rest of the world felt by the mariners of 200 years ago, or now the Chilean lighthouse-keeper and his family.  The waves in the Drake Passage jostle among themselves as if to rub shoulders in a vain attempt to get warmer.  Standing on deck 15, far above the grey-cold sea, I feel the icy wind cutting into my down-lined jacket.  As it reaches through the layers and touches my skin I have images in my head of sailors of old clambering over icy decks, while fighting bare-handed with frozen lines and heavy, clumsy sails in an attempt to keep the ship from being caught and crushed by the relentless ice.  Such a mental picture seems light-years away from the comfort of our luxury cruise-liner. 
 But the starkness of this snow and ice bound continent presents itself, as it always has to all who get caught in its unforgiving stare; powerful, uninviting, even threatening to those of us who become spellbound at the abruptness of its jagged peaks and towering icebergs that stab the grey-blue frigid water.

Life today is a long way from where it once was, just as Antarctica is a great distance from Canada’s West Coast.  But, at times, I feel lost, abandoned without bearings, snow-blind in a white-out, left to be swallowed by the vastness; my own Antarctica.  Thank you to those who courageously give hope when all seems hopeless, who choose to challenge the formidable, and lead those of us who are sometimes lost in the immensity of living to a place of purpose and peace.

A Blog About Why I Can’t Seem to Blog

Ironic as the title may be, I have been pondering, even wrestling with and obsessing over this very question for months now. If I had spent a fraction of the time writing as I spent in the emotional/mental ‘doldrums’ thinking about writing...well, you know what I mean.
Having completed my contract at the University, I have more discretionary time than ever before. In response to the question, “What’s next?” I had shared with many that I enjoyed writing blog posts and would be rejuvenating my “Positively Parkinsons” soon. But, despite my best intentions, this has not materialized. So, why the seeming immobilized state?

Time to be brutally honest. Here are the causes/sources that I have considered for my apparent writer’s block.

Maybe this battle of the blog is simply a manifestation of the ever-evolving grip of my Parkinson’s. Like the “frozen gait” that stops some of my PD pals in their tracks; the mind says move but the legs don’t get the message. Or it could be like the stiffness I experience when I forget to take my meds on time.

Moving on to some of the non-motor symptoms of PD, perhaps it is fatigue that plagues my sleep-deprived body of energy, leaving me spent at the end of most days with no energy to be creative.

Or, maybe it is the lurking devil of depression, which can lead to dreary and dark thoughts of hopelessness and a “why bother” response to the challenge of creating and refining a worthwhile blog post.

I have been experiencing a crisis of confidence (not sure if it is a cause or an affect). Is my writing worth publishing or posting? Am I any good at it? Is this writing thing a thinly veiled attempt to attract attention, compliments or, heaven forbid, pity? Is it worth the effort/time? Does it really encourage people (whether with PD or not)? Am I just procrastinating, being lazy or undisciplined?  Maybe it’s just time to move on.

All these potential sources, unanswered questions, and more could be at play in my “writer’s block”. So what do I do?  This is the question I leave with you.  What is your advice?

Monday, September 2, 2019

Are you only as old as you think you are?

Often do you ask yourself the question, “How long would I like to live?” If you’re like me (heaven forbid), this is a question you rarely spend much time pondering. To a large extent, this may be an irrelevant question to ask.  We are not prone to ask the question with statistics in mind. One reason for that is the realization that life expectancies are increasing at a fairly significant rate. In Canada, when I was born in 1952, the life expectancy I was given was 66 years. Today, my life expectancy for someone my age is 81. For whatever reason, I have gained 15 years of living, statistically speaking.   

Many of us seem to prefer the cheerfully fatalistic answer taken from the Doris Day Oscar-winning theme song, “Que Sera Sera” (What will be, will be).  This classic goes on in lilting, mellifluous tones, “The future’s not ours to see”. Although I was only four years old at the time this song was topping the charts, I am reminded of it occasionally because of my wife’s affection for old movies.
Assuming that most of you are too young to know who Doris Day is*, you are highly unlikely to be asking the question at all!

Yesterday, I had a stimulating conversation with a 90-year-old friend. Among other topics, we discussed aging. Phrases like, “You’re only as old as you think you are”, ”It’s about quality not quantity” and “Why do most of us have such a strong drive to survive beyond the statistical norm.?” I commented that Parkinson’s disease has all the attributes of accelerated aging, which prompts me to think more like my 90-year-old friend, than my 67-year-old body would otherwise suggest.
While it might be nice to muse about the possibility of reducing one’s chronological age by simply “thinking younger”, that activity is insufficient in itself. After all, whatever the age, we inevitably must recognize that life is short no matter how young or old we are.

I also disagree with our society’s constant swooning over the young, pursuing a modern age version of a Fountain of Youth. Is there really no merit in getting older? Does human life actually have a “best before date”? I think not. I recognize the extraordinary value in the resilience, enthusiasm and creativity of young people, having spent six years engaging university students. I also acknowledge the unfortunate propensity for at least some of us in our senior years to be complainers, close-minded and self-centered. 

However, I see great value, and have respect for the elderly, as opposed to those of us who are simply older. Many of my senior friends are deep thinkers, love to laugh, challenge my presuppositions and prejudices, and are simply not willing to resign themselves to, “what will be, will be”. The future may not be ours to see, but the present is ours to live.

Accepting the sometimes mind-numbing, body-trembling and rigor mortis-like stiffness, I have an answer to the question, “How long would I like to live?” One engaged-to-the-extent-I-am-able day at a time, with a mind that recognizes not only the troubles of the present but is motivated by the possibilities of the future; thankful I can share the journey with others, both young and old.

*For those of you who might want to know (all three of you!), Doris Day lived to be 97 and died on May 13, 2019.

Saturday, August 31, 2019

Apathy and Parkinson’s Disease

To the applause of Canadians everywhere, the Toronto Raptors won the 2018/19 NBA championship. Did you really care? Do you have some travel coming up? Are you excited about it? Maybe you have lots of free time in your schedule for the next couple of weeks. Are you looking forward to enjoying those hours and days? You may be anticipating meeting an old friend, high school buddy or long-lost cousin for coffee. Are you enthusiastic about that?
 I am certain that some of you at least ascribe to the dismissive line of Rhett Butler in Gone with the Wind:  ”Frankly my dear, I don’t give a damn”.

I thought I had experienced most of the symptoms of Parkinson’s, or at least knew someone that had. However, I was ill-prepared for one such attribute.  It crept up on me the past few months. It has proven a stealthy and deceptive enemy, masquerading as a temporary circumstance brought on by any number of life events. It was something I expected to simply “go away” as my life patterns changed. I found myself making excuses when it did not, saying things like ”when (fill in the blank) happens this feeling will disappear”. But it hasn’t. So now is the time to name the unpredictable and elusive symptom apparently experienced by up to 70% of people with Parkinson’s. APATHY. Having capitalized each letter of the word I must admit that it was for emphasis rather than because I felt strongly about it. In fact, everything feels a little (or a lot) emotionally flat.

The shameful reality is that I have fallen victim to this debilitating state of body/mind. Although I’m not continuously aware of its presence, it can climb into my skin at will, like some form of alien. It seeks to commandeer my days, pretending to be the result of fatigue, insomnia, sadness or even depression. Apathy can sit on my shoulder, whispering in response to any attempt at motivation, activity or effort, “Why bother? Just rest for now. Perhaps you’ll feel better in an hour or two. Or maybe tomorrow.  It’s not really that important anyway.” Embarrassed now, I admit to having listened to these prompts and complied, or rather succumbed, to their indifference.

To be completely honest and transparent, when I am caught in the grip of apathy almost everything seems veiled in passionless passivity. The things I used to enjoy don’t seem so important or even attractive. Procrastination and indecisiveness prove stronger than self-discipline and logic. Take this blog post for instance. I have been planning on getting this written for weeks now. But it never seemed to make it to the top of the priority list. In fact, there isn’t much of a list of priorities.

10 years ago, August 30, 2009, I began Positively Parkinson’s in order to encourage others facing the day-to-day battles of PD. No candy-coated aphorisms. No false promises. No venting, rage, or ‘woe is me’ narrative. Just living out the adventure and giving hope as best I can. The 10th anniversary of this blog should have been enough to rediscover the spark and reignite some passion for the cause, given that I had been looking forward to more time to write posts to share. But  apathetic indifference struck a near knockout blow before I saw it coming.

What exactly is apathy? It is not depression (although it may lead to that I suppose). But the two have some similarities, as both are believed to have neurological, psychological and emotional elements. Of course, the Latin root words provide a fairly clear description of the word:  “A”, means without” and “Pathos”, means passion. That’s easy enough: without passion. And this may be a more pervasive state than many of us realize.

As Helen Keller said, “Science may have found a cure for most evils; but it has found no remedy for the worst of them all - the apathy of human beings”.

My guess is that we all know what it feels like to be apathetic, especially if we live with Parkinson’s disease. According to some studies, 70% of us are affected by this silent joy-killer. But what are the causes? And, perhaps more important, what is the antidote?
My own view is that apathy is not just a shortage of dopamine, but a quiet, self protective response to the lack of hope. Hope for a cure. Hope for a slower degeneration of normal functioning. Hope that there is significance and purpose in it all.

The remedy? Perhaps the best response is a combined strategy (to deal with the multi-pronged causation).  Make sure your meds are working properly to deal with the neurological effects of PD as best they can. Second, enlist a support team to provide structure and process, as well as encouragement and accountability. This could include a spouse/significant other, family, friends and professionals of all varieties. This can go some distance to rebut one’s own emotional and psychological slide into apathetic darkness. And lastly, depending on the supply of energy and commitment left in your tank, establish very modest goals, typically one at a time. For instance, my goal was to write this 10th anniversary blog post before the end of August. There is nothing quite like succeeding at modest goals to give us the motivation to push ahead.  That sense of accomplishment will help build hope in future achievements.

Wednesday, July 10, 2019

Get Out Of the Shower!

The water pelts down from the showerhead and I stick my hand into the spray, testing the temperature. It must be hot. Not warm. But almost unbearably hot. Stepping into the tiled shower stall I face away from the showerhead. The steam begins to rise and float out of the shower and fills the bathroom, condensing on the mirrors and windows, starting from the ceiling and drifting down. I close my eyes. 

The morning shower ritual feels like part massage, part sauna and part cleansing. It it is a prayer that washes away the nightmares of my troubled sleep. It re-calibrates my mind. At first there are creative, untethered, and even unimaginable thoughts that drift undisciplined through my mind. I surrender to the muse as words begin to form around my thoughts. Sometimes music drifts among the words.
But, too soon, the invasion of the day’s schedule and persistent priorities bring focus to ideas. Pragmatism begins to sweep away the secret sense of well-being. I know I cannot win this tug-of-war. It ends with silent resentment as the water stops, and cold air creeps towards me, across the floor, over my feet and up my legs. Resigned, I reach for the towel to dry my rapidly cooling body.

And so the day begins with the sacrament of the shower.

This morning I fought harder in the shower before I submitted to the demands of the day. Somehow, it being my 67th birthday, I felt a sense of entitlement, reward, and privilege. The luxury of those extra minutes lingering in the shower before stepping into the cold air was like a gift to myself. But I could not succumb to this temptation for long. I don’t sit down in a shower.  I may have to at some time in my life but for now, it just does not feel right.
Luxurious as it is, my shower is transition. Just as the dawn is the transition from night to day. It has a natural rhythm.

The symptoms of Parkinson’s disease constitute a harsh reality. Sometimes we who battle this disease seek to escape the pain, the frustration and the fatigue. A few glasses of wine, indulging ourselves, or simply giving in rather than fighting back. Understandable. But we cannot stay in the shower.

As I begin my 67th year, I know that the temptation to stay longer in the shower will increase. The inner struggle to stay where it is safe and warm will grow. Still, reality and purpose only exist outside the shower.

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." Aristotle.

Sunday, July 7, 2019

Rise - Is It Time to Change?

 It was seven in the morning, and I was up, dressed and waiting at the rendezvous point of the one-hour walk that would start four days of challenges. While characterized as a “retreat”, it was more like an annual boot camp specifically designed for people with Parkinson's disease. It was appropriately called “Rise”. Rise from sitting at a desk in front of a computer or a meeting for long hours every day. Rise from the denial, blissful ignorance and wishful thinking.  It was time for a realistic self-assessment.  Physical, mental, emotional, and even social changes needed to be made. Parkinson’s was increasing its grip. My willful blindness to the deteriorating state of my body, along with the deceptive nature of my thinking (or lack thereof), could no longer be ignored. Things had to change.

The past weeks were difficult. It has been time to confront and create a” new normal” where work was not all consuming. Now there were limited excuses to avoid serious self-care. The days at Rise demanded that I take initiatives and make changes. It was similar to the stretching that we engaged in at the boot camp. My muscles are stiff and unyielding despite my determination. Touching my toes was physically impossible, the equivalent of bending a 2 x 4 piece of lumber. My hamstrings and related muscles would not yield, coming to the end of their attempt with my hands touching just below my knees. Other stretches were equally laughable, disappointing or worse. Not only had my muscles contracted during recent years, but I ran out of breath easily, and by coordination was nonexistent. I have a long ways to go.

Some changes come easily. Others are thrust upon us, causing pain. Some changes come about slowly, almost imperceptibly. Whereas others strike unexpectedly like a flash of lightning. We can control some changes in our lives, while others may be out of our reach and inevitable. But how we respond to change, or even initiate it, can be of great significance.

What did I learn from Rise? Whether making changes, or adapting to the changes thrust upon us, it will be difficult. Let me distill the lessons of my four days of confronting change. These questions define a way forward for me.

1.       Why do we want to, or need to, make changes? This may be the easiest of the following questions. In my case, Parkinson’s unrelenting attack will increasingly seek to erode the quality of my life. I owe it myself and others (my wife, family and friends) to do the best that I can with “the cards I have been dealt”. Life is a gift to be handled with care, not squandered, abandoned or abused.

2      What exactly needs to change? Self-assessment produces, in my case at least, a list that is far too long, and embarrassing to share here. So much needs to change. But we can only do one thing at a time, and not everything can be a priority. For me, the priorities fall into a few categories: physical exercise, writing, soul care, and relational.

3.       How will I bring about needed change? Here is where the planning and commitment get derailed. For each priority I need a plan, a roadmap, an assessment of how I will take the necessary incremental steps to bring about change. It is easy for me to be na├»ve and overly optimistic. But I know from failed attempts in the past that grandiose plans often yield grandiose failures and discouragement.

4       Who will help me make the needed changes? In many cases, change involves more than myself. To change eating habits, carve out time for exercise, arranged for quiet time to think, write or read, and spend time with important relationships all involve others. But, engaging their assistance will also build accountability and encouragement. I need to be specific in my requests for the assistance of others.

     When will I start? Habits developed overnight are typically lost within a similar period of time.  A recent study of 96 people published in The European Journal of Social Psychology found it took on average 66 days to form a habit. However, this number varies widely dependent on the person and circumstances, as well as the particular habit..
It takes more than a 4-day weekend to make changes. But it’s a start, a much-needed new beginning. Let’s commit to change.  See website for Rise details.