Working Hard and Parkinson's Disease

Working on a difficult case over the past few weeks has got me thinking, again, of my father. Sometimes 16 hours a day, sometimes seven days a week, he knew how to work hard (and taught his children the same). He had done so his whole life. In fact, he really didn't know how to stop. It was, to a large extent, who he was, his identity. Retirement at 65, although welcomed in some respects, left him searching for purpose and seeking to redefine himself. He never said as much, but that is how I see it from my current vantage point. Stumbling into my 60s, being chased by the spectre of Parkinson's disease, my goal of continuing to work into my 70s and 80s seems to have only the slimmest chance of survival. So, will I follow my father's footsteps into a desert of self-definition, wandering in a wasteland of purposeless recreation and the distraction of retirement?

I think not. 

There are significant differences between my father and me, and his worklife and my own (although I admit there are some similarities). I love my work. My father never had a chance to choose a profession or a calling he could love. His options were limited by his grade 8 education and the need to feed his family. A near-fatal logging accident left him unable to manage the very heavy work required of men on the front lines of the lumber industry (although he continued to work harder than most able-bodied men). Ultimately, retraining gave him a more secure and less demanding job as a school custodian. He was a diligent, intelligent, loyal, honest and, yes, hard-working man. But I don't think he loved his job.

My father had no hobbies really. When he wasn't working at the school, putting in more hours than he was being paid for, he was working in our own or someone else's orchard to learn a little extra money so my mother could stay home with the four of us children. And when he wasn't working, he was coaching his kids' baseball team, on some church committee, or volunteering to help someone less fortunate. He was unselfish to the core. Perhaps that is why he did not plan his retirement. Like many others of his generation, he was too busy thinking of others. And for me, as it was for him, it is a scary prospect to plan the years I may have when work is no longer manageable. 

Working hard, and the discipline it required, defined my father. It gave him self-worth. At the risk of self-delusion, I believe we are different. I see my work as a calling, not just a job or a paycheck (although I am thankful for both). Working hard for me is less of a discipline than the heartfelt desire to fulfill that calling. If forced to anticipate, at least on some distant horizon, a departure from the practice of law, I do not foresee a vacuum of calling. In fact, purposeful opportunities abound. My days after law will not be spent bettering my golf score (I have enough of a handicap not to attempt that) nor luxuriate on some tropical beach. But they will likely include writing, mentoring young people, trying to contribute to the lives of others and spending more time communicating my love for family and friends. 

So why do I experience such angst about that distant day when my disability outweighs my ability to carry on? Perhaps it is simply a lack of faith; the difficult letting go of one thing in order to grasp another. It is the struggle to end a chapter that has been jam-packed with significance only to face writer's block in starting a new one. Maybe it is just another manifestation of loss, the inevitable leaving behind of something that is loved.

For now, I must get back to work. Challenging, demanding and exhausting, it calls me to give my best. My hope and prayer is that when the time comes for other things to take its place that there will be a purpose and a passion for the days ahead. I'm planning on it!

The Snail on the Second Floor Window

It was stuck, both literally and figuratively. Perilously perched 20 feet above the flower bed, a common snail had fastened itself to the outside of our large bathroom window. I'm not sure whether this particular snail was stubborn, determined or, like most mollusks, mindless. But I knew that in short order the snail on the window would expire. I imagined it sobbing tiny tears and saying, "I should've listened to my father. He told me to keep my foot on the ground. But oh no, I thought I knew better. I wanted to climb higher than any snail had gone before. I would be a hero. I felt invulnerable, supercharged, unstoppable. I never considered the dangers I encountered; the starlings that dove at me, the sun that baked my mucus into glue, the rain that made my footing slick and the constant threat of falling to a crushing fate. And now I have met my end in this lonely place. What a fool I have been!" 

I was fascinated by the snail that had succeeded to climb up and suction itself to the outside of the second-floor window. The fact that such a thing intrigued me is either a commentary on my own mindless and meaningless musings, or a magnetic attraction to metaphors. Either way, take your pick, but not before you finish my short story.

One of the inevitable results of Parkinson's disease is slowing down, whether one wants to or not. I have tried hard to fight it. I just can't get used to it. For example, in my mind I should be able to get ready in the morning; shower, shave, brush my teeth, comb my hair, button my shirt, buckle my belt, and tie my tie, as quickly as I did in years past. But I can't! I take longer. And the faster I try and go the more frustrating a process it becomes. Finally, typically well along the way, I recognize a significant number of limitations. Everything just takes me longer. But it still feels like I am moving at a snail's pace. 

Not just people with Parkinson's, but all of us can learn things from the lowly, slow-moving snail; the Terrestrial Pulmonate Gastropod Mollusk to be exact. First, a snail labors under a burden, the shell it must carry. But more than a burden, the snail's shell is actually part of it, growing, alive and yet somehow distinctly different. The natural tendency for a snail is to recoil into its shell when poked or prodded. But a snail cannot make progress or care for itself when hiding. 

But a second thing can be learned by observing the shell of the snail. While beautiful with its ringed curls, few recognize that this commonplace site is a logarithmic spiral. Something as vast and significant as our own cosmos, the Milky Way, is a form of logarithmic spiral. However, the hurricane, with its power and potential destructive force, also constitutes the same natural shape. It is as if the character of the snail is expressed through it shell. 

Thirdly, snails are not all that slow! Imagine if you had to carry your house at the same time as trying to slide one saliva-coated foot along the ground or wall.  Moving at the pace of four to six meters an hour would feel like supersonic speed. After all, given the snails can live for 10 to 15 years in some circumstances, what's the hurry?  It's all a matter of perspective. 

Which brings me to my final question: why did the snail climb so high only to die in the process? You will be surprised to know that it was to warn other snails. The need for a snail to climb occurs when it is affected by a dangerous chemical or infection in the area. As a snail's tissues go into necrosis, it gives off a distinctive (to other snails, at least) scent, which warns others of danger in the area. A snail that is about to die will climb as high as it can, so that the scent spreads farther.

The now empty snail shell is still stuck to the outside of our master bathroom window. It stands as a silent sentinel, warning others of danger, as well as modeling beauty in a burden, courage and a cause and self-sacrifice for others.

Talk to Me

I think it was pink, although more of a coral than a bright pink. The woman in her early 20s wore the slinky blouse exposing her shoulder and a clear plastic bra strap, as seems to be the fashion. While she was seated with her back to me, I could see that she was slowly sipping a bright colored, deceptively fruity-looking drink. She shook her head slightly to one side, momentarily sending her shoulder-length blond hair dancing like the shining mane of a perfectly groomed Palomino. As if by instinct she raised her left hand to comb her fingers through her slightly tousled hair. Her ring caught the light and sparkled, showing off its recent placement. The story began to come together. 

Across from the pink blouse sat a young man with disheveled dark hair and a developing beer belly stretching his well-worn T-shirt with a misspelled four letter word emblazoned across it.  He did not look up as he intently stabbed his thumbs at the face of a recent model smart phone. It was not until the food arrived that he smiled, flashed the screen at the young woman sitting across from him, put down his electronic diversion, and dug into his meal. The shining gold band on his ring finger seemed out of place as his left hand clutched the steak knife. Silence continued between them as they ate. Her gaze shifted from her salad bowl to him and back, while he peered mostly at his phone on the table beside his plate. 

The five of us sitting in the booth behind the young couple spent our time mostly laughing at old stories, growing older and nothing in particular. We had just come from a college reunion event, meeting by chance and agreeing to go for brunch together. My wife and I were long time, good friends with the other couple who joined us, having spent time together often. The fifth member of our dining group had come back to his alma mater for the first time in 40 years, having accepted our invitation to stay with us and renew the old friendship we had shared in college.

It struck me as ironic when we begin to share some of the challenges that age and the intervening after college had brought us. Me with my Parkinson's, my single friend wearing the wounds of a recent divorce, and all of us facing demands, worries and stress that have come along when we feel least capable to deal with them. It was life we were sharing, as opposed to the young couple who sat eating nearby. The juxtaposition was almost enough to make me laugh out loud (or is that LOL) or cry. 

How could we be relating so easily when the young couple beside us were so lost in their own worlds? Was the enemy at their table the cellular phone? Or had they simply just awoken after the dream of the wedding, the parties and the honeymoon, to realize that real life brought pain to follow passion. Coping with reality takes work and real life is more difficult than playing a videogame. The newlyweds had some tough lessons to learn, that much was obvious. It saddened me to realize that the distinct potential of separation and divorce was likely creeping into the thinking, if not the vocabulary, of these young people. 

What makes a relationship last? The older I get the harder that question is to answer. I used to think it was simply commitment, a decision to stay at it no matter how difficult. But that was before I had really experienced difficulty, pain, and failure. Good relationships, it seems to me, are not based on common interest, shared activities, or even joint experience. It is more like something I learned in English literature class 40 years ago. It's a kind of willing suspension of disbelief, like reading a good novel and allowing yourself to engage in the world created by that story. It is like extending grace, suspending judgment, and knowing full well the potential of pain in the process of relating to someone else who is equally fallible, equally liable to disappoint and hurt you.

Hopeless as it would have been, I found myself longing to pull up a chair next to the blond beauty and her diversion-addicted husband and tell them the harsh truth, the counter-intuitive conclusion. Real relationships, lifelong relationships, meaningful relationships require perspective rarely found in our culture. Thriving relationships are grounded in a commitment to another in both weakness and strength, living with the tension of you/me/we, finding fulfillment and security in the place between gravity and centrifugal force.

The young woman with the pink blouse followed a few strides behind her husband, still engaged with his phone as they left the restaurant. I wondered how long it would last.

It was another hour before our group of five exchanged hugs and went our separate ways not knowing what life would bring before we met again, but knowing we would remain friends.

A Long Time Ago in the Red Light District of Amsterdam

It was mid-afternoon on a warm day in October of 1972. Amsterdam was filled with young Americans, Canadians and Australians vagabonding around Europe on $10 a day (or at least that's what the guidebook’s title said it could be done for).  My two college friends and I, neophytes in the realm of international travel, had just arrived to join this rite of passage. We had flown into Schiphol International Airport from Boston on Icelandic Airlines, which then, at $79 one-way, was the absolutely cheapest way to get from North America to Europe. Taking the train from the airport downtown, three wide-eyed, rural-raised 20-year-olds lugging heavy backpacks, arrived at the picturesque Centraal Station.

                                                                                                                             

It would be difficult to imagine embarking on such a grand adventure with less experience, less preparation or less worldly wisdom. We did not know how long our meager funds would allow us to travel. We had no particular plans, no itinerary, and no contacts. And besides English, we spoke only high school French and a smattering of German words. Like lost sheep, we followed several fellow travelers who, reading a map and pointing in the direction of the main boulevard, seemed to know where they were going. We arrived at the main square of the city (fittingly called Dam Square) to find a large group of English-speaking young people who proved to be a never-ending found of information, some of which was actually reliable. We discovered that this location, adjacent to the American Express office, was where little-known travel secrets were exchanged, strangers settled arrangements to join together and share the costs of traveling and, most importantly in our opinion, departing travelers unloaded their no longer needed Volkswagen vans on unsuspecting newly arrived travelers. It was there, as the day wore on without finding the vehicle that would be needed for our lodging and transportation, that we begin to have an increasingly urgent concern: where to stay inexpensively while we searched for an affordable vehicle to become our home. Someone gave us directions to "The Shelter". But no one explained the gauntlet we would have to run to get there. 

Neither my friends nor I had ever seen anything like the red light district of Amsterdam. Signage depicted in graphic detail what at home would have been hidden inside plastic-sealed porno magazines placed high on the shelves of dimly lit corner stores. Barely dressed women displayed their wares unabashedly in crimson-curtained windows, daring each passerby to make eye contact, while others stood on stoops outside of brightly colored doors propositioning us in broken English. After getting lost (unintentionally) several times in the narrow, darkening alleyways, we began wondering whether we had been duped. After all, who would suspect a Christian youth hostel in the middle of what was perhaps the world's most famous "adult entertainment" district. But there it was, inauspiciously tucked away at 21 Barndesteeg Avenue. It became our safe shelter for the next four or five days. 

Ans, a young Dutch woman who spoke little English, worked at The Shelter for only a few months in the fall of 1972, but despite our differences we began a friendship which has lasted 40 years. As we sat around our kitchen table this weekend sharing stories that our respective spouses had not heard before, I recognized that this relationship was very special. Despite being separated by the distance of approximately 7250 kilometers between her home in Rockanje, Netherlands, and mine in Langley, Canada, this friendship has convinced me that, with some effort and reasonable expectation, relationships can flourish over a long time after only a minimal encounter. We have managed to get together only seven times in the four decades we have known each other, but each time the relationship grows stronger.

There are number of things that I have grown to cherish in this autumn season of life, when age and the limitations of Parkinson's disease seem ready to erode life's joy. One of the dearest treasures is that of old friends. It's a pity that younger people don't have old friends. They could use them. But old friends are more than acquaintances who exchange e-mails and text messages with acronyms such as BFF. Old friends look each other in the eye, whether filled with tears or fury, and know just what to say. They have observed each other as they would a river; shallow in the rocky places, deepest in swirling pools; rushing needlessly at times and quite stagnant on other occasions, but always both following and making its channel across the terrain of time.  Old friends know the seasons of the river's story, having shared the floods and droughts.

How could I have known that a providential meeting in that seriously located hostel 40 years ago would begin a friendship lasting all this time? It is true that old friends bring peace to the soul.

The Senator

With a population of less than 300,000, Saskatoon is the largest city in Saskatchewan (for the uninitiated, Saskatchewan is a prairie province in Canada). It was there, my flight having arrived around one o'clock in the morning, that I came upon The Senator. The 105-year-old hotel had obviously tried to maintain a dignified posture of importance as it stood on the downtown corner of 21st Street and 3rd Avenue. But even at that early morning hour the self-proclaimed "boutique hotel" looked a bit tired and tattered in yesterday's attire. For instance, there were the seriously worn marble treads on the wrought-iron main staircase trimmed with oak railings that had long since lost their varnished luster. But what gave away the truth that the aging Senator had "let himself go" so to speak, was what happened when I tried to enter my room, #223. The key fit fine and easily turned in the lock, but I couldn't budge the door.  As I rattled the door handle and shoved on the door in earnest, I imagined one or more persons who had been sleeping soundly in #223 bursting into the hall half-dressed and shouting expletives. 

Thinking better of continuing my efforts, I retreated to the front desk where I interrupted the night clerk and his computer games. I explained the dilemma and he glibly assured me that no one was in room #223.  He  then accompanied me back up the once-regal staircase to the second floor. His first efforts to enter the room were unsuccessful. I felt vindicated.  But then, without further hesitation or warning, he put his burly shoulder into the door with the force of a trained fireman and it gave way with a crash. Thankfully, #223 was indeed unoccupied. The night clerk simply mused as he hurried down the hall, "I wondered if that was one of the sticky door rooms". "Sticky"?  After using my shoulder in like fashion to the night clerk I was able to close my door from the inside. I felt I had been given a working definition of the word "doorjamb". Upon managing to get the door closed, two conflicting concerns crossed my mind. First, as it appeared that the inside lock was not functioning, it would only take someone with a healthy shoulder to enter my room, although not before creating enough noise to wake even me (sans hearing aids). However, it was my second thought that gave me greater pause. If, in the middle of the night, the heritage hotel decided to self-immolate, attempting to reduce its guests to cremated remains, I would never get the heat-swollen door open in time to escape. But, being bone-tired, the door remained unlocked but jammed tightly closed while I slept. 

It won't surprise you to know that I did wake up in the morning, unscathed by fire or felon. After some persistent, two-handed, full body, one foot on the doorframe, heaving on the doorknob I did escape from room #223.

Somehow, there seemed to be message for me in saga of the stuck door to room #223. I believe it is this: don't pretend to be something you're not. The Senator was really faking it in many respects. Its glory days were gone, unlikely to be recovered. No one was really fooled. Sometimes I'm prone to misrepresent the state of my Parkinson's, to disguise the symptoms that would be apparent to a discriminating eye. I find myself trying to portray an outdated image of who I was in better times. Faking it! I need to learn a lesson in humility from The Senator. Just be who I am, a small-town boy who has been blessed beyond any of my dreams; a 60-year-old guy with Parkinson's who simply wants to encourage others as I have been encouraged.

Pain, Parkinson's and Possibility

Phyllis was a spinster and lived alone. She had done so for most of her life. Now 83 years old, she occupied a single room in the nursing home where she resided with her collection of bedraggled plush toys, including "Kitty". Except for weekly visits by her kindly cousin, I was the only one who came to see her. It was never a particularly pleasant visit. But I was obliged to go.   Through a strange turn of events, I had become her lawyer and the only person she appeared to trust with her power of attorney. For the 12 years I had known her I rarely saw her smile, except when speaking to Kitty and her other stuffed animals that surrounded her in her bed. She would often break off our conversations to speak to Kitty as she lovingly caressed it. It used to purr, but the batteries died. The staff requested that I not buy new ones because Phyllis would have Kitty meowing at all times of the day and night, bothering the sensitive sleepers. 

When I entered her room on each visit, my opening question was almost always, "How are you today, Phyllis?" In response, subject only to being diverted by me onto other topics (or to speak to Kitty), she began reciting a litany of complaints. She described her aches and pains in unabridged and minute detail, which, she complained, the doctor had abruptly dismissed. There was the heavyset nurse who treated her roughly when moving her to and from her wheelchair. Then there were the grumbles about the lack of attention she received when she needed someone to help. She bemoaned the fact that no one came to visit her or take her for walks or drives. She even complained about her long-suffering cousin because, "She doesn't come often enough". And then, always, there was the complaint that "Kitty" was broken and no longer spoke with her. During the hour I spent with her, and despite her monologue of protests, I somehow managed to slip in the things I needed to tell her about her finances before I had to leave. I always felt guilty and heartless when I sensed the overwhelming urge to end my "visit" and leave her alone again to wallow in self-pity and no one tell about it except the mute Kitty. Perhaps that is why I always leaned over and gave her a kiss on the forehead before departing. I remember her bony hand gripping my hand more tightly as I sought to withdraw it in order to leave. I understood why she was lonely. The word "I" had effectively crowded out any interest in, or ability to communicate with, others. When she died there were a small handful of people at her funeral. They were the few that she left behind. 

Douglas was another story, although he was about the same age as Phyllis. He, too, had come to me some years earlier to assist him with some legal issues. Over time we grew closer, and he appointed me to be the executor of his estate when he died, and granted a power of attorney in case he became infirm. He had lived much of his life serving others. Even in his mid-80s he had a kind face that was often marked by a smile when he saw me coming to visit him. In fact, though chronic arthritic pain racked his body constantly, he always got up, dressed in a jacket and tie, and was waiting cane in hand to meet me when I rang the doorbell to his small suite. On every occasion, his skinny hands, only slightly bigger than Phyllis's, reached out to grip mine in a welcoming, firm handshake. I was afraid to return its firmness for fear of crushing the fragile bones I could feel in my palm. We would visit over cookies and a cup of tea that he had made. He wanted to know all about how my family was doing, how my legal practice was faring and what things I had planned for the future. It was only when I insisted that he became willing to talk about what was happening in his life. When asked he would give a cursory review of his current health situation (it was never good) before he turned to more pleasant subjects. He would often fondly reminisce about earlier days when we would take walks together, usually my then young children in tow. He told me about mutual friends that he kept in touch with. I enjoyed those times with Douglas. I felt encouraged, warmed and enriched when I left, somewhat begrudgingly resigned to the fact that I had duties to attend to. The he always asked me the same question just before I walked out the door. "Bob, is there anything I can pray about for you?" When he died the church was full of mourners, many of whom shed tears while telling stories about Douglas while we shared refreshments in the church hall after the service.

Phyllis and Douglas left lasting impressions on me. They both had suffered pain in their lives. But they couldn't have handled it more differently. 

Pain, whether due to Parkinson's or otherwise, will uncover one's priorities. It cuts to the core of who we are. It reveals the truth about each of us. Perhaps that is why we fear it. We crave the comfortable. We opt for the easy. Anything to anesthetize and avoid the aching. From childbirth to our final days, pain is the teacher we hate the most but from whom we learn the most.

Pain is no evil, unless it conquers us.

Charles Kingsley (19th-century author)

                                

Clyde's Clever Idea

If beating a drum and dressing funny doesn't work, how do you draw attention to a disease that you cannot really understand unless you live with it?

Ask Clyde Campbell, a clever guy who's putting his money where his mouth is.  He is the Australian businessman who started a nonprofit organization called, "Shake it up Australia" to raise funds for Parkinson's research. The name is a call to action.  He is driven to do what he can do help find a cure for PD. Certainly, part of his motivation stems from the fact that he was diagnosed with the disease in 2009 at the age of 44. But, having spent some time with him in Australia when I was there in June (see my post about Clyde), I suspect the greater motivation to do something is really for his children.


If you watch this video you will see how children play an important part in spreading the word about Parkinson's. They do so by distributing what amounts to a temporary distraction that draws attention to the reality of Parkinson's disease. Everyone will know how annoying it is to sit at a table that wobbles.  Typically, I will resort to almost anything to fix it.  Stuffing a folded napkin, a piece of cardboard or even a spoon under the short leg is standard fare. If all else fails I ask for a different table.

Imagine having to put up with a wobbly table for every meal for the rest of your life. Annoying to say the least.  A small hint of what it might feel like to have Parkinson's?

What you think? Is this a good idea?