Sunday, June 16, 2019

My Father The Dam

Silent, strong and deep, my father was like a dam.  He held back the emotions that must have been in those final years. The anxiety of knowing he had Parkinson’s disease that commandeered his body. The fear of knowing he was caught in a narrow gorge as awareness of his world shrank with Lewy Bodies dementia. The struggle to communicate as turmoil replaced the peaceful, still waters of the early days.  And in the end, when he could no longer hold the waters back, he let them pass.  They gushed through turbines, sending high-voltage emotions to us, his family; providing as he always tried to do.

Is it my turn?  Is Parkinson’s genetically determined? Or is my parentage simply one factor of many? Was it the innocent but unavoidable exposure to the toxic chemicals, cast like a canopy over our apple orchard trees each spring and summer? It could be either, both or neither. We may never know. For Dad it doesn’t really matter, and for me it matters little. Although it may assist those others who will know the many symptoms of this idiosyncratic disease. But, even if I knew, there is no reason to blame my lineage. We all pass on our imperfections, resist them as we might. We cannot hold the water back completely or indefinitely.

He was not perfect but he did his best.  He was a good father. I think of him still, these 10 years gone, my father, the dam.

Wednesday, June 12, 2019

Stuck in the Tunnel

I knew this was a special medical procedure when at least half of the 30 or so ailments or conditions found in the hospital’s disclaimer I had to sign were things I had never heard of. I did not want to ask.  I just ticked the ‘no’ boxes and signed at the bottom and handed the form and clipboard back to the clerk.

She then asked a curious question, “Can you hold your arms up above your head?” Not thinking this could be particularly important, I raised my hands above my head in a diving position with only slight strain in my Parkinson’s-stiffened shoulders. Apparently, I passed the test. However, I failed to ask what would prove to be a critically important question; “How long?”

It was not the first mistake I had made that morning. I had followed the preparatory instructions to the letter, assuming when it said, “nothing to eat or drink for four hours before”, it meant that I had to postpone taking my Parkinson’s medications. I thought it best to tell the medical clerk not to be alarmed at my shaking, and explained my unmedicated state.  She obtained approval for me to take my pills, but it was too late. The shaking had begun.

Of course, the tremors only increased when I saw the technician arrive with a syringe and other paraphernalia. After searching for a vein, he informed me that I was being injected with gadolinium. Gadolinium sounded to me like the name of a small village occupied by hobbit-like creatures. Or, perhaps, a newly-discovered galaxy. In fact, I was informed it is one of 17 rare earth chemical elements, and it is used in conjunction with an MRI (Magnetic Resonance Imaging machine) because of the element’s magnetic properties providing better definition for the images to be taken. I assumed it was safe.

Having surrendered up my hearing aids, asking any further questions, or at least hearing any answers, was likely to prove challenging, if not impossible. Patting the platform, indicating I was to lie down on a somewhat uncomfortable horizontal frame, the technician moved my arms above my head into the recently demonstrated dive position. Speaking loudly in one ear, he asked what I assumed was a rhetorical question; “Can you hold this position for the next 35 minutes?” How was I supposed to know? I do not recall ever having to maintain that position for 35 minutes.

I discovered a long time ago that I am not claustrophobic (that had been one of the questions on the disclaimer I had marked no”). And it’s a good thing because I was slid into the MRI tube feet first, arms in the dive position, looking like I was practising for the one-man luge event in the Olympics, except for the arms. Hearing various clicking sounds, I knew we were “locked and loaded”. I realized then that 35 minutes would be a very long time.

Squeezed into place, unable to move, the procedure began. What followed was a series of very loud sounds; something like a cross between banshee screams and intermittent air raid siren. In advance of each noisy invasion, there was a computer-generated voice, which seemed in my deafened state to whisper, “Breathe in. Hold your breath.” I wanted to ask, “How long?” But I was certain I wouldn’t have heard the answer. So I obeyed, breathing in all the oxygen I could, given the extremely cramped conditions, and breathing out when told to do so. All the while, the machine emitted computerized screams.

After what seemed like a lot longer than 35 minutes, I was withdrawn from the MRI “compression cylinder”. Despite aching shoulders, a couple of needle stab wounds, I knew the answer to the questions: “Yes, I can hold my arms over my head in the dive position for 35 minutes.” But please don’t ask me to do so.

Wednesday, June 5, 2019

Men, Aging and Parkinson’s Disease

Sad and silent. These men shuffled into the small meeting room, supposedly to hear me share my “story”, my experience with Parkinson’s disease. While I am a poor judge of age, I estimate that they were all in their 80s or 90s. Most of them appeared to remain ambulatory only with the use of a walker, neatly parked near the door like shopping carts at the entrance to a grocery store.

I didn’t know whether I should be encouraged by their attendance, or discouraged by their lack of engagement in any sort of dialogue. It was a tough crowd. Usually when I speak in public I try to connect with some friendly faces in the audience. In small group settings, I will ”tag” each listener in order to make some connection, searching each person’s eyes for navigational clues of approval, disbelief or uncertainty. But gleaning anything from this group proved challenging, if not impossible. Except for my host, who had been responsible for my invitation, this somber troupe of seniors seemed to have left their smiles in some secret Sphinx -like place in the past.

Defeated, discouraged and mute, they remained unresponsive, leaving me to answer my own questions, whether rhetorical or not. Like prisoners attending mandatory rehabilitation classes, I wondered if any of them would value or remember anything I said by the time they completed their shambling journey back to their chosen isolation.
“What have we done?” I asked myself.  As I looked around the room I found myself comparing two scenarios. On one side there were the interactions I recently enjoyed with students who probed, questioned and found it difficult to remain quiet for any length of time. Those engagements seemed diametrically opposed to this gathering of elders, who neither questioned nor commented, apparently preferring silence. What happened in the 60 years between the ages of 20 and 80? Immediately realizing how close I am to the latter, I found a nameless fear slowly seeping into my soul. Surely, aging is more than just surviving. Life must be more than an endurance test that we will inevitably fail. What will prevent me drowning in the “slough of despond” as I age? What will save me from the self-pity of a shrinking solitude?

We aging males, entering the “retirement” era, are left with many demanding questions, perhaps best summarized in the one posed by John C. Robinson book’s title: ”What [do] aging men really want?” We can all agree that we don’t want to feel threatened, angry, afraid, useless, embarrassed, regretful, bitter, or insecure as we age (or prematurely experience aging due to the far from gentle erosion of Parkinson’s disease).

But what do we really want? Giving up is not acceptable. Perhaps there might be one answer to be found in the final words of the poem, “Ulysses”, by Alfred, Lord Tennyson:

     Tho’ We are not now that strength which in old days
     Moved earth and heaven, that which we are, we are; 
     One equal temper of heroic hearts,
     Made weak by time and fate, but strong in will 
     To strive, to seek, to find, and not to yield.

Wednesday, May 29, 2019

Just Leave Me Alone!

When life’s circumstances seem to trap you, squeezing you in their grip, applying increasing pressure and demanding a response to questions that are bombarding your universe like incoming meteors, everything gets messy.
We feel out of control (as if we ever were). Death, disease, disability, discouragement, depression, disorientation or disaster - and these are just the things that start with the D - threaten our daily existence. We find ourselves scrambling for cover, digging a foxhole, curling up in a ball, or hiding our eyes to shut out the fear, the pain, the inevitability.

“Just leave me alone!”, we shout to no one and nothing in particular. Can’t we just make it all go away? Can’t we just fix it?

The answer is “No”. We might be able to deny the situations we face for a while. Difficulties might be delayed somewhat. But ultimately, we must deal with the tough stuff, face our fears, fight back, accept suffering and sacrifice as necessary, or at least inescapable, parts of living.

Lately, too many friends are being confronted by the harshest of realities; difficulties from divorce to dying, and a veritable invasion of other sad events. Sometimes, like missiles, these struggles come in clusters, as if the destruction caused by one is not enough.

When it all seems too much, too hard, where do we turn? The Greek philosopher Epictetus said, "We cannot choose our external circumstances, but we can always choose how we respond to them".  But let me add, doing life alone, especially in the crucible when heat and pressure so easily overwhelm, is not the answer.

We are designed for interdependence, relationship, community. We cannot hope to prevail on our own. We need to share the burdens, the pain and the tragedy, especially when they don’t make sense. We need the freedom to ask” Why”, while knowing that there is no obvious answer. We need caring listeners to be our mirror. We need allies to help us fight back, maintain the hope regardless of the odds. But in the process we must risk being misunderstood, rejected, and disappointed by others. After all, we are far from perfect ourselves.

Image result for world parkinson's congress japanP.S.  While drafting this post I felt alone. I had planned to be attending the World Parkinson's Congress in Japan next week.  I was looking forward to being there mostly to spend time together with friends from around the world who are part of Parkinson's disease community. Unfortunately, I will not be there.  Maybe 2022?  In the meantime, let's stand together. As Michael J Fox said,“We may each have our own individual Parkinson’s, but we all share one thing in common. Hope”

Saturday, May 25, 2019

From Graduates to Grandparents

It has been a very long time; 40 years. And yet four decades seems to have sped by in an instant. Memories had somehow been compressed and stored in the archive function of my brain. Recall was the problem.  Without the name-tags, facial recognition left me stammering, trying to identify the elderly person holding out his or her hand in greeting. Once identified, by furtive glances at name-tags, my classmates and I launched into storytelling and exchanges of status reports.  As I moved about the room from small group to small group, each person took awkward small sips from their wine glasses.  The 40th reunion scene reminded me of hummingbirds hovering momentarily, probing newly-opened blossoms and then moving on

Careers had come and gone in the past four decades. “Retired” had been added to the biography of many. A whole generation has grown up, and in the process made many of us grandparents. The graduates of 1979 UBC Law School were as diverse bunch, at least in terms of personality and background. The career paths of those in attendance stretched across the gamut from well-heeled executives, who had never practiced law, to retired judges. There were politicians of every stripe and practitioners of every calling. A curious and incongruent crowd of older folk, so disparate in their views and appearance that an observant stranger would not have easily identified what they all had in common.

Admittedly, I attended this event with some trepidation. The legal profession rewards confident men and women who show no sign of weakness or vulnerability. It was no secret that I had Parkinson’s disease.  There was no effective disguising its symptoms. But, scanning the list of those of our class who had passed on, I realized it was a privilege just to be in attendance.

Why do we hold reunions? Sure, there are those who are simply curious and attend in order to extract the latest news, the juicy bits, just to be “in the know”.

Perhaps to others, the reunion was a sort of  a tontine, or death pool, where the last person alive “wins” and we attended to record the fact that we were still contending for the prize.

But I think there is something more benevolent in play.  Those years in law school were formative.  Not just because of the legal principles we learned together, but there was a recognition, if somewhat ill-defined, that our relationships with one another were important. Despite how different from each other, we survived the crucible of those 3 years together. Despite the competition, there was a genuine interest in each other, and even a recognition of the need for mutual encouragement.

Life, like law school, and Parkinson’s, is best lived by taking the risk of sharing the experience with others.  Otherwise, the challenges can easily drive us to retreat, giving into the fear of rejection and misunderstanding.

Driving home from last night’s reunion I thought of those of my classmates who did not join us, and I wondered why they had stayed away. Could it be they did not want to be judged or compared to others?  It may take some courage, but whether it is attending a reunion of old classmates or getting together with others who struggle with PD, the benefits of taking the risk far outweigh the certainty of loneliness.   

Saturday, May 18, 2019

You Inspire Me

For the first six years of my life, I lived with my parents on my grandparents' farm. Both my parents worked, so my Grandma Olga, provided daycare for me. This amounted to me remaining within arm’s-length while she did her chores around the farm. She was a hard-working, simple, immigrant woman. She had married my grandfather when she was very young and had a total of 17 children (of which, 11 lived to adulthood). She never went to school and could neither read nor write. She signed her name with an X and never had a driver’s license. Her native language was German, which meant that when she was angry with me for misbehaving, which occurred frequently, she chastised me in German while wielding a hefty wooden spoon aimed at my behind. I did not need to know German to understand exactly what she meant. Grandma taught me to perform simple tasks, such as how to find eggs that the chickens had hidden. She showed me how to milk the cow, and then separate the cream from the milk by cranking the handle of the separator. I often observed her carding wool, and then using a treadle-operated spinning wheel in order to create yarn used to make sweaters and socks. Her chores were endless.  Grandma was on her feet from before dawn, when she could be found in the farm kitchen making breakfast, until it was dark and she was pulling the sheets off the clothesline so the beds could be made. I do not remember her ever being ill or going on a vacation.  Little did I realize then, or for many years after, how much my uneducated grandma inspired me.
To be inspiring we must be inspired.
Scott Barry Kaufman, a psychologist at the University of Pennsylvania, wrote an article for the Harvard Business Review called "Why Inspiration matters". In it, he said, "Inspiration allows us to transcend our ordinary experiences and limitations. We often overlook the important role of inspiration. Inspiration transforms a person from experiencing a culture of apathy to experiencing a world of possibility."
What exactly does it mean for you to be inspired? The root meaning of "inspire" comes from the idea, "to breathe in".  Simply put, we need to breathe in (be inspired) before we breathe out (be inspiring).
What, or who, is the ultimate source of our inspiration.  You see, "Inspiration does not come from us, but through us." This is a radical statement in today's rational, humanistic world. It takes us out of the centre of creation and compels us to recognize that we do not “own” inspiration. It is a gift. A gift we must share in our own unique way, just as my Grandma did. We cannot keep it to ourselves. We must breathe out.

Over the past six years, I have been inspired by many students. They have given me a gift by sharing their stories. They have touched my heart. Because each of us our own way can inspire others, we can change the world.
We all need to engage this world -- a world that desperately needs to experience love, compassion, reconciliation, and hope.  So, I challenge you to ask yourself, "How can I inspire others?" For many of us, myself included, we need an inspirational launching pad into the adventures to come. We need to look for, listen for, and seek the breath of inspiration that will come to you.
To those of you who struggle sometimes with finding inspiration amidst the frustration, pain, self-doubt and rejection resulting from Parkinson’s disease, let your transparency, your achievements, your courage truly inspire others.  And as you do, you surely will change the world.

Saturday, May 11, 2019

May Day! May Day! May Day!

Starting on May 1, this repetitive phrase echoed in my head. These are words of a distress call, used since 1923 by radio personnel to communicate extreme danger. In fact, the phrase used has nothing to do with the month of May. It is simply the English transformation of the French phrase “m’aider” (literally, ‘help me’). That made sense to me.

As of May 1, I entered a phase of life that may present the greatest challenges yet.  I resist the word “retired“. It sounds too much like giving up. The idea of “Freedom 55” (or whatever) has always seemed to me like a nightmare more than a dream.  The word has so many connotations. Unneeded. Busy but barely useful. Easily forgotten. Irrelevant. Losing touch with what was important. Self-consumed.

The past six years have been a daily adventure. Energizing. Inspiring. Jam-packed with challenges. It was living life to the fullest, feeling fulfilled. But as of April 30, I am now more often than not characterized as retired” or “semiretired”. There is more fear than freedom in that label. While I have often yearned for more free time, it suddenly stares back at me from the empty pages of my calendar.

May Day! May Day! May Day! Help! How do I fight back against the impending sense of purposelessness?

The first day of May was the beginning of my post-President life. I am trying to relax, rest and recuperate from the busy schedule and mountaintop activities of the past few months. The farewell events, extraordinarily kind comments, new title of “President Emeritus”, and generous gifts were all gracious, if not embarrassing. But, as thankful as I am, those are now in the past. What do I do now?

This post, and my return to blogging under the label of “Positively Parkinson’s”, is my way of sharing the fears and falsehoods of this new chapter in my life. I anticipate this season will present a broad spectrum of experiences, from daring and dangerous at one end, to sadness and self-isolation at the other.

I have often recommended to people caught in the turmoil of mixed emotions to ask themselves question: “what are you afraid of?” So… when it comes to my current state of life, what am I afraid of? Here are my top three:

Getting old. While my Parkinson’s disease (diagnosed in 2006) seems to be largely under control, thanks to my body responding well to the medications, I am worried that the increased free time will simply mean more focus on the symptoms of my disease.

Irrelevance. For the past six years, I have been fully engaged in trying to meet the demands of a consuming job. While demanding, it was incredibly rewarding, and consumed all of my available energy. But now what?

Loneliness. While I enjoyed the support of an extraordinary woman, who has stuck by me for more than 45 years now, I have become accustomed to maintaining many relationships, in large part because of the roles I have played. Will these friendships dissipate over time?

None of these three fears is likely to be resolved easily. But, in the meantime, I also recognize I need to seek solutions that give time to self-care. Balance. Learning how to avoid reacting to every request with a thoughtless, “Yes”.

Perhaps, above all, I need to be willing to risk reaching out with a personal, “May Day”.