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?

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 10^th 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 10^th 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.

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 67^th 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 67^th 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.

Imagining the Parkinson's Story

What will my Parkinson's disease be like next year? In 5 years? How fast will my PD progress?  These are not inspiring questions.   And if you are asking them the answer in your head is not likely to be overly encouraging.  I could spend all day imagining the worst of predictions.

PD or no PD, we all spend time, often a great deal of time, translating our current struggles into tomorrow's sorrows. Why do we envisage unhappy endings in the middle of the story.  Instead, we could be writing the ending we want and working to make it a reality.  I am convinced that there must be no giving up on the best ending, even in the worst of times.

Great authors start fictional works with the end in mind. Successful adventurers begin their journeys with their destination chosen. It is a terrible waste to simply live like you write a journal or just wander through each day, month or year aimlessly without direction. There is little benefit to singing endless verses of the Doris Day fatalistic hit, "Que Sera Sera". How about memorizing Martin Luther King's "I Have a Dream" instead.  After all, which is more inspiring?

Someone once said, "Life wouldn't be so tough if it weren't so daily."  It is certainly true for those of us with PD. The dailyness is often tough, and we know it may well get worse. But what if we write our story as a battle that ends victoriously. What does "victory" mean to you? If you can't define it how will you attain it? Now I know that a positive plan does not mean it will play out perfectly. Circumstances may dictate edits to the plan, a twist in the tale or even writing a new chapter. But if you cannot imagine a happy ending then today's troubles will replay themselves as variations on the "woe is me" theme.

We must dare to imagine a way through the troubles we face. We must define success even when doing so creates the fear of failure. We must pursue our best dreams even if it means confronting our worst nightmares. If we fail to script a hero's ending to life's saga then we have become the villain.

Help! I am an 18-Year-Old Stuck in a 58-Year-Old Body With Parkinson's Disease

There was no dream too big. No limit to the adventures ahead. The sun was shining, the flowers blooming, and love was in the air. Life could only get better and better. At 18 years old, the world was literally my oyster, seeded with not just one pearl but an inexhaustible supply. I wanted them all.

Growing old or suffering some sickness were too far away to even imagine; a highly questionable long-term weather forecast that seemed irrelevant. We were still riding the waves of the ideal 1960s, when we, the flower-powered youth, commandeered the wheelhouse of culture, demanding change and chanting, "do not trust anyone over 30" (David Weinberger, University of California Berkeley, 1964).

40 years passed. Quickly! Those years were filled with pursuing dreams; sometimes realizing them with jubilation, and sometimes watching them die a slow, discouraging death. Most of us have now come to realize that, in our rebellion against authority, one thing we had forgotten was to "respect our elders". In fact, we had forgotten our elders altogether. The "old folks’ homes" were nonexistent to most of us back then. Parkinson's and other "old people’s diseases" were virtually unknown to young people. Of course, all that is changing. Now, when cursing the dizzying speed with which technology changes, we may whisper, at least to ourselves, "do not trust anyone under 30". We cannot seem to keep up to them. We are tiring of the panicked pace. But we do not know how to slow down and give up the control we have maintained for the past four decades. In fact, we may even fear that the youth of today will follow our example and relegate us to somewhat more upscale "old folks’ homes" to be left alone to question the quality and powerlessness of the lives we have left.

For many of us in this bloated demographic bubble called ‘baby boomers’, we have begun to realize the ironic comparison between the heady optimism of our teenage years, and the over-promising, under-delivering expectations we are sold on infomercials guaranteeing painlessness, performance and prosperity to defeat our skepticism. Somehow, to put our hope in either the drug-induced dreams of yesterday, or the pill-popping promises of tomorrow, seems hopelessly unrealistic.

Perhaps foolishly, I am still 18 at heart. But I seem to be indentured to a body that is insistent on teaching me about pain and imperfection, aging and disability. Despite these lessons, there remains in me, as there does in many other baby boomers, an enthusiasm, a curiosity, a thirst for learning and a heart that wants to see the world become a better place. But the 18-year-old heart has matured. While optimism may be more guarded, I cannot give up the belief that our generation can make a difference, both for ourselves and the generations to follow.

It is an exciting time to reclaim the best things about our youth: our communication of passion, our ability to understand power and influence, our willingness to work together despite differences. But instead of being distracted by protests, parties, pot and politics, we have an opportunity to use 40 years’ worth of skills and resources to focus on the needs of those who face, or will face, chronic and degenerative disease. That is more than a distant dream. It is attainable.

Thankful for Everything?

Under most circumstances, the room would have been filled with a suffocating hopelessness and despair. Yet there was a serenity that I felt as I stood in the quiet ground-floor condominium suite with the father, his daughter, and his son-in-law, who was holding a young baby. Everyone was quiet except for my friend, Bob Dobson. He was praying. "Lord, although I do not understand it, and my pain and sense of loss is overwhelming, I know that I need to thank you for what has occurred. Help to assure me in the days ahead as we discover why it is we can be thankful."

It was at 5:30 PM on June 12, 2006 that a Ford Explorer driven by a seminary student was heading north along the Oregon Coast Highway #101 as the Dobson van was headed south. Bob noticed the Explorer drift onto the shoulder, suddenly overcorrect, veering into the van's path, striking head on at essentially full speed. There had been no time for Bob Dobson to react or even brake. The van was immediately set ablaze with its four generations of occupants desperately scrambled to undo seat belts and pull themselves, or be pulled, from the burning wreckage. In a fiery instant Pastor Bob Dobson's life changed forever and in every conceivable way. He lost his wife, his mother, his health, and almost his daughter, son-in-law and grandson. So how is it that a man who has lost so much could pray as he did?

How can you be thankful when life seems to turn on you? Loved ones are lost, cruelly torn from a family's future, others have relationships end leaving splintered hearts, a child is drawn into a life that destroys body and mind and leaves helpless parents weeping, or normal aging robs some of the best of their dignity and sanity. Some have heard a well-meaning neurologist pronounce a few syllables that shatter dreams that were almost within reach and bring recurring and ever-amplified nightmares in their stead.

This is where an "attitude of gratitude" runs headlong into crushing reality, leaving either a discarded platitude or refined fortitude. Life has a way of testing glib sayings as it chisels away at the foundations of what we say we believe.

For some, the diagnosis of Parkinson's Disease slowly seeps into the resistant psyche, as if uncertain as to whether its subject can bear the impact of its meaning. For others those words have an immediate and devastating sense of despair. For me the verdict delivered on January 19, 2006 continues to ripple through my life in ever widening circles, like a stone dropped in the middle of quiet lake.

Perhaps it is enough for some to learn how to accept the adversity and disability represented by PD. But for me, that feels too much like gritting my teeth and trying to smile. As difficult as it is sometimes, I have come to the conclusion that I must see this as more than just another challenge. Perhaps this disease is an opportunity for which I need to be thankful. This past Canadian Thanksgiving weekend it was a question I felt compelled to consider.

Certainly that is the message of Michael J. Fox in his book "Always Looking Up". Although I am left pondering the title and the source of his faith (looking up to what?), I do embrace his view that there is purpose in living with this disease. We can choose to see it all as having meaning, rather than assume it is just the cruel hand of fate.

If there is purpose in having PD then we can take a page (literally) from the faith of my friend, Bob Dobson. He would quote the Bible, 1 Thessalonians 4:7,"... give thanks in all circumstances...".