A “crowning touch” is like a finishing touch, the culmination of something. Sometimes those events cause fear, pain and anguish, as when someone receives the diagnosis of Parkinson’s disease. And then there are the less critical but nonetheless exasperating times like two nights ago. Let me start with the latter “crowning touch” for 2010.
We were getting ready to leave for a 35th wedding anniversary dinner in honour of some dear friends. At the time, I was in the bathroom obeying the dictate of my dental hygienist who had recently cleaned, polished and fluoride-painted my apparently aging teeth. “Floss more” she had said straining to get the unwaxed line between two teeth. With most of her fingers in my mouth I was in no position to argue. I was following her directions with a real sense of accomplishment when it happened. Tugging to retrieve the spearmint flavoured floss from between a bicuspid and a molar I felt something give way. I fished the fragment from my mouth only to find a piece of gold. Had I been a prospector I might have been elated. As it was, I let out a groan and held up for my wife to see the tarnished tooth-shaped crown as my full explanation of the situation.
I quickly determined that my dentist, and every dentist I could recall the name of, was closed until January 4. I felt desperation take hold of me as I wondered how I was going to eat if I was crownless for a week. But when, after 8 to 10 calls to numbers found in the Yellow Pages, I finally found a dental clinic open my desperation turned to skepticism. Why was this dentist open and available in less than 2 hours, at 6:30 that same night, to recrown my vulnerable tooth?
I found out less than 48 hours after he glued the crown in its rightful place. I was in the middle of a late lunch when I had to rescue my recently re-cemented crown from a bite of bagel just before recovery would have been…well…delayed and somewhat more like prospecting. Another call to the “open late” dentist office got me in by early evening. As I checked in with the receptionist she smiled and advised me that, since the first dentist was not there to fix “my” problem, I would have to pay his dentist partner the $61.70 again. Twenty minutes later I left having been twice crowned, hoping that this time it would hold until January 4 and feeling that frustrated at being double billed.
The second “finishing touch” was found in my email inbox, having been sent to me at precisely 5:29 pm on December 17. It read as follows (author’s permission obtained):
“Subject: Re: Today's diagnosis...
You sir, have the dubious honor of being the first person to whom I have revealed my diagnosis via email... Actually your blog is the first online Parkinson’s associated website I have visited since first learning of my diagnosis... Which was today, at 11:30am PST. Yikes!
I’m in a curious mood right now, bumping back and forth between “Holy Shit!” and “Ok, let’s get on with things and make the best of this.” I’ve not read all the entries yet, but reading your blog has been comforting and entertaining. You are a good writer and I truly appreciate your humor and straightforward approach to discussing this topic.
My dear husband is coming home early from work and bringing eggnog which I plan to use for the making of a stiff, holiday drink. I am going to toast to the “positive” aspects of this diagnosis. In fact, prior to seeing your website, on my drive home from the doc’s, I had thought of doing a blog myself... “the Upside of Parkinson’s” in which I planned to list the two positive benefits I can see so far- #1: sense of smell leading to diminished sense of taste, leading to loss of appetite and, voila! weight loss!, and #2: the need for increasing my exercise regimen to become a more rigorous enterprise, thereby (hopefully) making me a hot, though shaky, mama.
It’s helpful to write you right now because you HAVE what I’m writing about. I’m surrounded by the most wonderful and supportive cast of family and friends, but let’s face it, they don’t have this adventure to go on. And I’m sure it will be an adventure.
So, thank you for being there for me right now... Sharing this adventure in your own way.”
Needless to say, this well-written email filled my encouragement tank for months to come. It made the year's blogging all worthwhile and was a true crowning touch for my year.
Christmas time can be a difficult season for people with Parkinson’s (PWP) and many others as well. Despite the reassuring words of “God Rest You Weary Gentlemen” [and ladies too], it can certainly be fatiguing. The weariness of getting ready for the festivities, late nights and trying to be fully invested in the fun events that take place all consume a great deal of energy. And at the best of times energy is a resource often in short supply for PWP.
Unless you are an extraordinary extrovert who is energized by social interaction, it is very likely that by the end of Christmas day you are exhausted. It was probably worth it, but all the celebratory effort has taken a toll. It may now take a miraculous intervention by God, assuming he occupies a place in your vocabulary, to rest and recharge your batteries. I was reminded of this battery metaphor when listening to the sound of my two-year-old grandson’s new but overworked dump truck, complete with forward, reverse (with back up beeper), dumper, all with the accompaniment of rumbling sounds and flashing lights. The truck had lived up to its heavy-duty title, having been endlessly engaged and enjoyed all Christmas day, but the next day it clearly needed a battery transplant? When you are weary, how do you recharge or replace your batteries?
The ancient Christmas carol continues, “Let nothing you dismay”. Given the definition of “dismay” [to disillusion, upset or alarm], this is even more challenging for PWP. Depression, anxiety, frustration and feeling overwhelmed are often a part of the “normal” daily existence of PWP. Christmas launches a special squadron of these invaders. At Christmas there is usually more intense interaction and ‘careful’ conversation among family members. Then there is the need to perch plates on wobbly knees and at the same time attempt to pierce peas with a shaky fork. And lastly, there is the let down from failing to meet excessive expectations, either your own or those of others. After all the merry-making and game playing I, for one, am worn out and more than a little dismayed. I need a holiday to recover from the holiday.
After climbing this annual pinnacle of parties and falling spent (in more ways than one) at the base camp, how do we PWP manage the consequences of Christmas? How do PWP cope with the Christmas conundrum; the desire to be part of the party and the concurrent longing for retreat and refreshment?
While I may not be able to adequately prepare for this seasonal onslaught, I am discovering that I need to do better than stumble into the aftermath. I need to discover comfort [literally, “with strength”]. I need to experience joy and relief from that dismayed feeling. This year my antidote for the ‘morning after’ was:
1. Engage in an enjoyable and restorative activity that gives you some alone time. Maybe start that new book you were given or go for a long walk in the snow (or in our case, rain). In my case it was a 2-hour motorcycle ride. Despite the weather it was a wonderful oasis.
2. Plan a special time for connecting with just a few family or friends who have easy expectations and do not consume a lot of energy. Play cards or table games. Avoid high-energy requirements. For me, it was going to a Vancouver Canucks hockey game with my two sons. The fact our team won by scoring with 24 seconds left was a bonus!
3. Schedule rest. For me this has been critical. Having a nap need not generate guilt. It is often necessary if you are to meet the demands of the season.
4. Find time to relax with a cup of tea or glass of eggnog and watch a movie that takes your mind off of the frenzy of the festivities and personal anxiety. And while not a fan of most movies, we watched a few segments of the riveting miniseries, “The Pacific”, the WWII drama produced by Tom Hanks and Steven Spielberg.
In spite of all the tumult and difficulty of the post-Christmas season, my prayer and hope for PWP everywhere (and especially anyone who reads this) is that there would be many occasions where comfort, joy and freedom from dismay would prevail, leaving us each with a sense of deep peace.
Despite it being Christmas, the world is short of many things. Peace, joy and love to name a few from the well-known carols. But somewhere near the top of the list is wisdom. 2000 years ago the three wise men had to be recruited for that first Christmas from a far off land rather than locally in Bethlehem. Wisdom is hard to find.
Jim wore his white hair haphazardly atop his round face with bushy, untamed eyebrows arched over brilliant eyes, as if to protect them. He looked his age, a healthy 88 years old, except for those eyes. They were filled with the insatiable curiousity of a young student. Yet they betrayed a depth that no young man could mimic. It was wisdom I saw there. Unmistakable as it was exceptional.
Each time Jim and I met he gave me a sincere smile and hugged me like a true friend, but also with the warmth of a father. With little time for shallow niceties, he was always anxious to hear about the important details of my life; family, work, health. There was no pretense. We were friends, and I considered it an immense privilege to have such a sage advisor and mentor. Strangely enough, while I was in awe of his credentials, experience, and successes as a world-renown academic, authour and speaker, he never caused me to feel any inequity in our relationship. He always treated me as an equal, despite the obvious disparity in age and life experience. Wisdom is like that. It does not seek an admiring audience but humbly attracts one.
Recently, Jim and I met, as we often did, over an early morning breakfast at White Spot. It was simple and predictably good fare. We both ordered porridge, thick, steaming, topped with ample amounts of raisins and brown sugar then cooled with just a little milk. Comfort food; it always reminds me of my childhood when oatmeal, then an unappealing staple to me, was my father’s favourite breakfast. Like wisdom, it seems few people have an appetite for porridge now. But Jim does.
At 58 I have encountered many people that I enjoy being with and listening to. Sometimes it is like comfortably sipping afternoon tea in the sitting room. At other times I find my mind unwilling to stay focused, drifting off topic, lagging behind to luxuriate in some idea or racing ahead to conclusions not yet drawn or applications yet to be made. But wisdom, like Jim’s thoughtful words, fills the space offered it; trivia is driven away like rootless sagebrush in a windstorm. It is like drinking from a fire hose, so intense and dense are his insights.
Wisdom is difficult to glean from our daily diet of the trite and trivial. Like real “news”, it is difficult to find amid the newspapers' exaggerations of advertisement and palaver of editorials. Wisdom, on the other hand, is not meant to please or relax, it is stark, sometimes jagged and jarring. It does not soothe the psyche. It provokes it.
Knowledge we have in abundance. We admire and even worship the miracles of modern science and those who produce them. Wisdom, by comparison, is a word no one can apply to his or her own insights. Any sense of pride or worthiness contaminates its purity. Wisdom is a mystical marriage of the heart, soul and mind. It cannot be created at will nor captured to hold high like some rare bird in a cage.
I can imagine Jim as one of the three wise men who followed a star’s navigational signs to find the birthplace of a special child. There is little recorded about these weary and wary wanderers who simply sought a promised revelation. Now I know it is not fashionable to hearken back to the origin of Christmas, but we could use some good news, some promises that last beyond election day, and some wise men. At least that is the case with Parkinson’s disease. We need the brightest and best to come up with ways to fulfill the promises of a cure, healing and relief from this damnable disease. But more, we need the wise to teach us how to live, follow the star and persevere with purpose when the stiffness, tremours and sadness seem unbearable.
For me, I am better able to wrestle with reality because of people, like Jim, who speak wisdom into my life. Whether we have PD or not, we all need sources of wisdom.
At 16 years old, Diane’s life had become unbearable. Dark, hopeless, friendless, her world held no attraction, no future, only empty existence. The note she was writing to those who occupied places in her life would be explanation enough for what would happen next. Sitting on her bed in the basement room she occupied in her parent’s home, the razor blade lay ready beside her. Soon the pain would be over she thought, she would be free. It was not the drama of ending her life that appealed to her. It was simply killing the meaningless life that she hated.
Now 25 and married, Diane’s story had tumbled out as she explained the tattoo script that swirled in cursive text over the veins on the inside of her wrist. There was still a hint of agony in her eyes as she remembered those tearful times. She stopped speaking at some points, unable to continue as she blinked the forming tears away. But as her story unfurled a smile began to grow. Her eyes began to glisten, not with tears but with a joy that you see in a child’s eyes on Christmas morning. Her eyes were illustrating the story, a story of hope, of miraculous rescue, of waking up after a long night’s sleep.
Diane’s tattoo said it all: “I Choose”.
I used to be afraid to ask about tattoos, or stare too long at the images emblazoned across some burly biker’s arms. Maybe it was fear that I would not exactly resonate with the personal story or meaning behind a smiling skull design. From my vantage point, tattoos often seemed to be marks of defiance, mementos of accomplishments or silent messages to disinterested observers.
But Diane’s was different. The swirling letters formed an ink-stained bracelet on the inside of her right wrist, best seen when Diane’s palm was face up. And the message was upside down to me, obviously meant for her more than me. Regardless, the two words etched into Diane’s wrist spoke to me. They cried out for completion, for a noun. I asked, “What is the significance of your tattoo?” “Life” she answered quietly confident. “I choose life.” It was a part of her history, a pledge for the present, and a promise for her future.
We may not all face that dreadful, dark moment when something beckons us to end it all, to seek permanent relief from the pain, release from some inner or outer torment. But we all fill in the noun in Diane’s tattooed phrase. What do you choose? Life? Even if it means living in the prison of Parkinson’s? Hope? Despite the expectations, promises and dreams that lay at your feet, dashed to pieces like some precious pottery knocked from your hands? Or do you choose the self-pity, bitterness or anger that wells up in you as you are forced to watch the increasing loss of control over your life and limbs.
We all choose. Even if we refuse to choose for fear of choosing wrong, we still choose. I won’t be sprinting to our local ‘Sinister Skin Tattoo and Body Piercing Salon’, but Diane and her tattoo have challenged me. I need constant reminders of:
1. My choices in the past. Good or bad, I can learn from them;
2. My need to make choices now, not to procrastinate. To live intentionally, choose wisely; and
3. My commitment to make daily positive choices in the future when it becomes difficult to get out of bed, exercise, socialize, and square off against my enemy.
The bride was radiant. The groom stood tall and strong, beaming as he locked eyes with his wife-to-be as she effortlessly floated down the aisle to Pachelbel's Canon. The wedding was flawless. Its music, the minister's message and the marriage vows brought tears to many eyes as a new family was born. Two families came together and simultaneously gave birth to a third. Success of this melding of families, cultures and personalities can only be judged when future dreams have become history, when promises prove to be a legacy. Given the journey together was just beginning, it occurred to me that the potential dangers and discouragement, threats and tragedies that lay ahead are rarely mentioned...except the foreshadowing in one phrase.
In the traditional marriage vows two young people bravely commit to faithfulness in an unknown future. The brilliance of the cameras flashing and the fragrance of the flowers seem to leave statistics suspended in a state of disbelief. My eyes tear up as I hear the words, "for better, for worse; for richer, for poorer, in sickness and in health". Squeezing the hand of my bride of more than 36 years I remember speaking and hearing those words. As with most newlyweds, we were naive. We thought only of the 'better, richer, healthy' future that we would share. At the time we could not imagine the 'worse, poverty or sickness'. But in their own way, each of them came.
Little did we know that in the "worse" times, when children seemed an unexplained, unanswered prayer, we were being prepared to experience the 'better' miracle of three chosen children, perfect for our family. How were we to guess that in the cash-strapped years of educational 'poverty' we would receive the 'riches' of sharing friendship and laughter. And lastly, we could not have foreseen that sickness would invade our early empty-nester years in the form of Parkinson's disease, well before illness would normally strike. But even so, there was an emotional health, a better perspective on life, a balance that has followed.
Truth be told, I always thought it would be me taking care of my wife in our old age. I exercised, competed in short course triathlons and lived a pretty healthy life. Renae tried working out in 1969 and didn't like it. Despite staying thin, she has not tried it since (although she does come along to the gym some mornings for my encouragement). But I was the one who got dealt the PD card. I cannot express my love and appreciation for a faithful spouse to walk this path with me.
I know that most modern couples seem to skip the idea of saying the arcane wedding vows, or even marriage itself, in favour of more glowing, free-flowing, dreamy language that does not mention nasty realities. I know that the statistics are against a marriage lasting "til death do us part". But there is not a day that goes by when I do not rest a moment on the words of that vow exchanged so many years ago now. And I marvel at the blessing that has come through the 'worse...poorer...sickness' times spent together. Marriage is stronger and life is better as a result.
At every wedding I attend I pray a prayer. It is not a prayer of fear that the couple will be spared all difficult times, but a prayer of faith that when challenges come, as surely they will, the couple will have learned to cling to the value of the vows.
The whole pre-board process seemed as if it were meant to prepare us for an unusual, B-movie experience. First we waited for someone to appear at the single podium check-in counter. Fifteen minutes before our scheduled departure two, rain-drenched, very young-looking pilots arrived. The older one, who was at least 17, pulled a crumpled sheet of paper out of his pocket and read off 7 names, giving us a personally autographed boarding pass that he cut from a page using scissors he pulled from another pocket. He told us to clear security and gather at gate 7. I wondered, as we were being patted down and our bags searched, whether the very serious-looking, uniformed security personnel had a sense of humour and would crack a smile if I said, "Do you really think I am going to hijack a twin-engined Navajo with a nail file?" Given past experience, I thought better of it and made my way to gate 7 in the corner of the cattle call boarding area where the same two pilots were waiting. They took our "boarding passes" and walked us out into the rainy night.
The 8 passenger Navajo Chieftain stood strangely out of place, as if double parked and hoping not to be noticed in the shadowy corner 150 yards away from the Victoria International Airport terminal. Although only 5 p.m., it was dark, raining hard and windy, and worse was expected. The waterproof coat I had grabbed from home that morning passed the drenching test as I tipped my hooded head into the storm for the too long sprint to the plane. Unfortunately, my dress shoes were quickly soaked in the unavoidable puddles that covered the tarmac. Seven of us struggled through the rear hatch door, wet and anxious to settle into the hard seats in the narrow-bodied craft.
Two pilots? For such a small plane? After we climbed in, one pilot squeezed by us, while the other tried, several times, to close the hatch we had just come through. Finally, he succeeded, or so it seemed, as he quit slamming the thin metal door into the frame. "Would it stay shut?" I wondered. As he made his way up to the "cockpit" (which I could reach into from my second row seat), he gave the damp passengers the "safety briefing". He explained that there were two exits, one via the hatch door he had just closed, and one by my right elbow. Despite the fact that we would be over water the whole flight I do not recall him mentioning where the life vests were kept. I began to ask, but thought better of it. It would sound ever so wimpy and the three women in front of me were stone silent and clearly fearful. Given the weather conditions life vests were probably not the highest priority. The pilot craned his neck around, looking at us in the dark of the "economy class cabin" as he attempted to start up the twin engines one at a time. He reminded us to ensure our seat belts were securely fastened as we were going to encounter "a little turbulence" on the 20 minute flight. The motors roared after the third attempt and the pilot gunned the throttle as if to say, "See, they work just fine, even in a storm."
As we pulled onto the runway the storm brewing outside was juxtaposed by the silence inside. There was a quietness that only fear could fill. The female passengers who had been chattering incessantly as we went through security, appeared to be holding their breath and could not seem to get a word out. Strange as it was, I welcomed the "ceasefire". Even before we picked up speed enough to launch off the runway the wind was lifting the small plane off the ground. Finally, with a burst of power, and the help of a heavier than expected gust, we were airborne.
Immediately we experienced what the pilot meant by "a little turbulence". The term "bumpy" was also inadequate, unless you classify riding a mechanical bull at full torque "bumpy". Anatomically I had always wondered how one's stomach could find its way into one's throat, but it surely did, and took up residence there for longer than I was expecting. The ride made the Space Mountain at Disneyland seem like a pedal car going over a few speed bumps. Airplanes, especially the smaller variety, can turn on any axis, and I can now verify that in a gusty wind-driven rainstorm they do.
For some reason, as I stared out the window at lights below that pitched and bobbed as if caught in a raging sea, I thought that this flight was like my life. For some time I rode serenely along as if on a supersonic wide-bodied jet, high above the shifting air masses, smiling all the while. But a few years ago I boarded a flight, booked without my choosing, that mimics the mishaps of Wiley Coyote. Some days I grit my teeth and ask myself, "Can this get any worse?" And, of course, it can and sometimes does. But the flight does not end there.
As the plane touched down at the Abbotsford Airport I heard the passengers collectively exhale. Striding towards the terminal as quickly as I could to hide the 'Parkinson's disease plus adrenaline' amplified tremours, I smiled. Behind me the women jabbered so loudly I could barely hear the Navajo as it taxied to find its well-deserved resting place. Another day of adventure. When life gets "bumpy", hang on!
"Your organization of this seminar is pathetic,” my co-presenter said with a sneer that only someone from the legal profession could make. "Your premise is wrong. You are not prepared. And the topic you have picked will take 15 minutes to deal with, not the 3 hours you have scheduled." My normally modest Parkinson's tremour shifted into overdrive. It was less than a half hour before I was to give the opening for the seminar. I had left the "planning" meeting too late and I knew I was about to be embarrassed, even scandalized, in front of my peers. I was totally responsible for this debacle. My brain flew into rescue mode, but no amount of improvisation, ad-lib, or 'fly by the seat of your pants' skill could save me from professional suicide. I was frantic. Suddenly, I woke up drenched in perspiration, breathing as if I had been sprinting well beyond my aerobic training. I was relieved the nightmare was over. At least I thought I was.
The waiter, who blamed the kitchen, could not make good on his promise to have us in and out of the restaurant in an hour and a half. There were too many pre-Christmas diners and too few cooks. We were going to be late for the concert, and look like fools when we attempted to find our mid-row balcony seats in the dark. The usher would be standing at the end of the aisle with his small but ever so bright flashlight shining on our empty seats as if to say, "There they are. Next time get your act together and arrive at the proper time". I ate in a frenzy, my tremor-prone right hand finding it difficult to get the large chunks of chicken into my mouth indigestion would certainly follow as I swallowed, barely chewing. I drove to the concert hall too fast, risking the frustration of a totally deserved ticket and parked illegally, hazarding another fine. There seemed no other choice. Unfortunately, this was real, not a bad dream. Fortunately, I did not get what I deserved.
And in other areas of my life add the following accelerators: I had forgotten that I had offered to meet for coffee with a friend the next day to discuss a tough decision he had to make. I was struggling to catch up on a mountain of after returning from vacation. I had committed to return to the gym 5 times a week in the remaining time before Christmas so that I would not retain the rotundity of the Pillsbury Dough Boy. My passport was expiring leaving me fearful that this oversight on my part would prevent me from leaving the country for business or vacation. I had not yet put up the Christmas lights and our house looked like a black hole in our neighborhood brightly lit for the holidays. I had just signed on to assist with an important task force to help develop a long-term plan at my alma mater. I had gifts to buy and deliver. Time was running out. Christmas was less than 3 weeks away and I was already wishing it were over. "Just have to get through this", I panted! How do I get myself into this frenetic pace? Overcommitted, over my head, overtired, overstuffed, overdone and overwrought. How did I not see this coming?
After waking up from the dream described in the first paragraph, and revisiting the embarrassment of the scenario in the second paragraph, I found myself lying wide-eyed and awake this morning. My mental 'to do' list spun rapidly and repeatedly around in my head. I was gagging on guilt and remorse.
I do not think I am alone in this hyperactive, overcharged feeling. But most people do not experience any bodily reaction to that frenetic pressure. I, however, feel the spike in voltage as my Parkinson's disease goes into a power surge with increased tremors, muscle stiffness, exhaustion and insomnia.
Given that this has happened on numerous occasions, I decided to try and do something about it. So far, this is a one-day, 5 item 'just try it once' list that includes the following:
1. Slowdown. Just for once, I will drive under the speed limit and let people pass.
2. Reduce noise. I will turn off the car sound system and get comfortable with silence.
3. Switch off. I will call forward the phone and not answer the Blackberry for an hour.
4. Relax. I will give myself permission to spend an hour a day to accomplish nothing.
5. Breathe. I will breathe big, deep, slow breaths whenever I feel anxious.
In medieval England, the word "frantic" meant "insane". Now it simply means, "characterized by rapid and disordered or nervous activity". Maybe they knew something back in medieval times.
It was reminiscent of watching a televised shopping spree where one lucky shopper had just 5 minutes in a store to grab as much merchandise as possible. His eyes could not stay fixed on any one thing as he ran haphazardly up and down the toy store aisles like a frantic clerk taking last-minute inventory of every item on the shelves. He held one thing after another, always seeing something better, or at least more desirable. Yet, at two years of age, and despite his frenetic pace, he learned quickly and became surprisingly discriminating. First he latched onto items displayed prominently at the end of aisles, like the miniature overnight suitcase complete with the Toy Story characters, Woody and Buzz Lightyear, emblazoned on it. Next, there were the myriad of trucks and cars ranging from cheap plastic generic vehicles to perfect miniature models of Porshes, Mustangs and Ferraris in enamel-painted die cast metal. It ended in some tense and teary moments as Grandpa removed his reluctant little body from the seat of a pint-sized, electric-powered, black Cadillac Escalade he had chosen from the line up of designer vehicles.
It had sounded like a good idea at the time. Having missed PJ’s second birthday we thought that going to Toys R Us stood the best chance of finding something he liked. We had under-estimated the human inclination of wanting it all, the escalation of expectation. We wanted to give him a choice. Instead, we created in his mind a kind of pre-Christmas chaos, his own overwhelming "Black Friday" (the retail sale day after US Thanksgiving when shoppers gorge themselves on deep-discount bargains and retailers determine whether the December buying binge will be a bonanza or a bust; "black ink" or red).
It seems to me that we are all much the same. As children we develop a sort of greed for gifts. Once we have acquired one thing, we look for something better. Modest appetites evolve quickly into avarice. It seems to be a rule of human nature that as soon as we have something we begin to take it for granted. And the Christmas season can often be the worst. We can move from gluttony, masquerading as Thanksgiving, to self-indulgence disguised as Christmas giving. As soon as we celebrate what we are thankful for, and before our gravy-stained fork hits the dishwasher, we begin to lust for what we do not have. By December 1, every medium screams its message, "Buy! Buy!", until we are caught up in its noise and impatience. It can become pandemonium, literally.
To have Parkinson's disease is to experience the reverse process: the de-escalation of expectation. PD is an affront to our expectations. When we were younger all of us had anticipated a carefree, healthy retirement or, in my case, working until I decided to do otherwise. But now the shelves that once held so many shiny new opportunities and adventures are more modestly stocked, and sometimes out of reach. We have to think more carefully, plan more seriously, and anticipate the likelihood of a less glamorous, action-oriented future. Life must become simpler.
But is this all bad? I think not.
Isn’t it a completely artificial world that promises the best of life only by continually adding "new & shiny toys"? While I may have been blessed with extraordinary benefits and experiences, I try to see life for what it really is, a spectrum, a continuum of choices, a series of seasons. I hope to learn to accommodate and live with the cold and heat, abundance and need, healthiness and disability.
And since grandparents are not responsible for teaching these difficult lessons to 2-year-olds (yet), we did leave the toy store with several new toys. A fire truck, complete with siren, motor sounds and the ability to spray water (I look forward to when he figures that one out), the "Toy Story" suitcase and a few toy cars. However, common sense did also prevail. We did not buy the $500 Cadillac Escalade. Someone else can feed that escalation of expectation!
Shafts of sunlight poked holes in the heavy clouds that hung on the horizon. My camera attempted to capture the morning of our last day aboard Oceania’s “Regatta”. Like the weather, with its conflicting messages, I had mixed feelings, whilch were like the beautiful sunrise that would disappear too soon. The prior 14 days had been extraordinary but the voyage was coming to an end. There was sadness, as I knew I would miss the people that had made places for us. There was the great Georgian group of six that shared their long-established camaraderie, welcoming us to join them in team trivia where we laughed, moaned at missed answers and celebrated collaborative successes. Lane and Maria from Missouri offered kindness and faith-filled wisdom as we exchanged our life stories over US Thanksgiving turkey dinner. Pausing between Scrabble turns Nancy from Ontario told her story of strength, suffering and survival, giving me encouragement in words and by example. Guy and Marilyn from Florida had us playing Canasta and laughing at their stories. Of course, these are only a few of the new friends who made the past two weeks memorable.
I realized today that when I replay the memories of any vacation it is the experiences with people that matter. When, at the end of my life, I am distilling the accumulation of glossy, electronic or mental pictures, I fully expect to discard the sights and save the faces of friends. What would travel, or life, be without others with whom to share it? It would be as sad as a lonely sunset. To me, living is meant to be shared. I need not fly alone, cry alone or die alone as I am blessed with a sea of friendships, deep and wide, long and short.
But how can the circle constantly expand to accommodate new friends without squeezing out prior relationships? As I age I realize my Parkinson’s disease will diminish the energy I have to spread around. Must I prioritize people? Can I be intentional about friendship without avoiding new friends by being aloof and exclusive? Is it careless to cast one’s heart into the wind like a kite left to explore without controls? Should I conserve my energy and warmth for a few? Can I have too many friends?
In our fickle era, it seems that friendship is often broadly defined. Is a "friend" found on Facebook, next door, at work or in the faded pages of a high school yearbook. It seems that the word “friends” has now been given a modern but relatively meaningless context by a television series. It all leaves me bewildered, searching for something more meaningful. I prefer "friendship" to leave room for interactions that have potential for seriousness and celebration, fun and purpose. For me, there must be some mutuality among friends, although not necessarily in exacting terms, for like a kiss it cannot be maintained without some reciprocity. Communication may well be key, but not necessarily using words. Something must be shared, be it sports or science fiction, gardening or games, passion or pain. Acceptance of the person is needed, but also recognition of differences.
But for me, while friends may be given defining adjectives (“best”, “long-time”, “dear”, “school” or “new”), the category must be kept open. There is room for both planned and serendipitous human interactions, and they can each have significance without demeaning the other. Friendships are not a burden, but expectations are. True friendships at any level offer some degree of freedom, forgiveness and grace. Real friendships are not fickle, cheap or mercenary. They may be limited by time and circumstances, but both can be overcome.
Although there is sadness in goodbyes, I choose to believe they might not be permanent. Certainly, whatever the future brings, my new friends will remain brilliant colours in my life’s painting, sunlight that brightened these past 14 days.
Too many friends? I think not. Just too little time.
Tucked away in the corner of Deck 9 on Oceania’s “Regatta” is a small, but bright, well-appointed Card Room with mahogany tables and cushioned chairs. It attracts those who, like me, enjoy games. When I find myself in that room, its occupants fascinate me. There are elderly women baiting and berating each other as if bantering was the real game being played rather than Mah Jong. Then there are the two male Cribbage players in their 70s who seem to revel in catching each other making “mistakes” in pegging their points. Of course, there are the usual card-playing characters frowning at their hands and bemoaning their lack of a particular suit or the absence of face cards. And while I can enjoy almost any game, I am there to play my favorite; Scrabble.
Now if there were ever a subculture of game-lovers, Scrabble players would perhaps be the standouts. There are no stereotypical characteristics or clothing that identify Scrabble players. They are not like the tweed-jacketed Chess players, fashion-conscious Bridge players or the lone wolf jigsaw puzzlers. Those who enjoy the word game originally called “Lexicon” can only be distinguished by the unobservable; the love of words. There is an odd ability to see the letters in words interact, expand and intertwine in crossword fashion. But for me there is more to this pastime, there is a fascination with vocabulary, the world of words, the more obscure the better.
Isn’t life a little like the game of Scrabble? Each of us gets seven letters at a time and must choose how to play them. It is pointless, literally as well as figuratively, to complain about the letters on our tray. Sometimes the play we choose is small and gains little. But it may lay the base for the seven-letter ‘homerun’ word that earns the 50-point bonus. We cannot always see the possibilities that lay ahead in the game. The reality is that we play our tiles in connection with others. They can both block and facilitate our play by how they take their turn. In the end we define winning as the person who gets the most points. But what if it were different?
Imagine if we could all cooperate by showing each other the letters in our tray, disclosing our weaknesses and strengths without fear that we would be taken advantage of. What if the object of the game was to ensure that all players had the opportunity to make the most of their tiles? What if the key strategy was cooperation instead of competition? Imagine the dialogue that we could enjoy instead of the long moments of waiting for someone else to complete his or her turn. What if we redefined winning as the highest cumulative score?
It seems to me that life is better played as a “team sport". It could be more like the trivia competition we have played on Deck 5 each afternoon in the Regent Lounge. Despite our self-demeaning team name, “Les Miserables’, we have succeeded by each participant serving an important and unique purpose. As in life, with its relational intricacies, each person we meet has a potential contribution to make. Sometimes the role is to muse out loud, risk suggestions that sound silly when spoken or affirm fellow team members. But it seems our culture is built around the concept of "winners" and "losers", with one group automatically defining the other. Someone is right and another is wrong. And I, for one, can so easily buy into that. I often fail to recognize the value of the humility and courage required by those who are not always "winners". I suspect that I am not alone in secretly dreading being labeled a "loser" in this upside down game of life.
As getting older looms, along with my Parkinson’s disease, it may become easier to retreat from the world of competition rather than face defeat. It is likely to be much harder to keep up with the “winners’. The words I play in Scrabble may have fewer points and be less poignant, and the any contribution I can make to a trivia team may well decline. How can I approach this pending reality with a positive spirit?
Scrabble has taught me several useful life strategies. The first is that winning can easily become a narcotic that blocks the joy of just playing. The need for the next “fix” makes it difficult to be either a gracious winner or loser. Second, we can choose to be in a constant learning mode, offsetting to some degree the deterioration of age or disease. Third, and perhaps most important, I must remember that it is the relationships with my fellow game players that count. To fail to learn these lessons is to leave us playing a lonely and sad game of Solitaire. That is NOT the future I want. So let’s just play. Game on!
Mid-Atlantic. Nothing but ocean in every direction. Entirely alone. Adrift with nothing but the winds and currents providing direction. Imagine floating, not knowing what lurks between your bobbing body and the ocean floor, 11,000 feet below. Wave upon endless wave threatens to cut off each gasping breath with seawater. Your body heat is slowly being sucked from fingers, toes, then arms and legs, the hypothermia advancing towards your vital organs. Confusion turns to semiconscious delirium as your mind loses track of time and context. All hope feels lost. It would be easy to sink into the dark, wet, anonymous liquid that surrounds you.
Aboard a cruise ship, at least 1000 miles from the nearest continent, it is easy to feel at sea. Not just in the literal sense, but figuratively. Freed from the rigour of daily demands, schedules and responsibilities, my thoughts are left to toss about like jetsam and flotsam, drifting where they will. Unanchored and aimless, I find that my ideas take undisciplined detours and end up swimming away from the ship toward the distant horizon. I am at sea.
I realized today that having Parkinson’s disease has often left me feeling at sea. Sometimes self-pity and sadness eat at my emotional balance like fish nibbling away at a life jacket. I do not like to admit those feelings even to myself, let alone in a blog with such an unyielding title. But honesty, even transparency, is necessary if I am to regain my bearings. When your world loses the normal geographic markers you cannot but feel lost. Swells of symptom onset can block out any sight of hope and swallow the anticipation and challenge of life’s high seas adventure.
Lost at sea I search for answers, strategies and wisdom. How does one find one’s way when all familiar and firm footing is gone and there are no clear directions? Life for me was once like swimming laps in a pool with lanes painted on the bottom and floating markers on the surface. Each lap brought the reward of touching the end wall, even though briefly, before stroking towards another accomplishment. But now, with PD, I am in open, unchartered waters. The swimming is progressively more difficult, with limited opportunity for any sense of achievement. Each day discloses new potential for drowning. How can I survive? Is there any opportunity left to thrive and find meaningful direction in this vast deteriorating expanse?
How does one survive if lost at sea? How does one navigate in a new world of circumstances never before experienced? Strange as it may seem, I find the sea breeze conjures up lessons I learned from the animated film, “Finding Nemo”, the story of a clown fish that could not be protected after straying from the familiar and fell into danger.
The film repeatedly states the first and enduring rule: “Never panic”. Flailing about emotionally, letting one’s post-diagnostic shock and fears scream out frantically, may be a natural and therapeutically cathartic response at first, but it is unlikely to result in any meaningful plan.
Secondly, Nemo’s father learns that when you are lost, hang onto something that will keep you afloat. Breathe. Be calm. Think. Tread water for a moment. Consider: what do you know that will keep you from drowning for at least the time being? It may be a belief system to which you can cling when the prospects look bleak. For some faith may be as tenuous as a stick of driftwood, while for others it may be as secure as a survival suit. Maybe it is a relationship with someone who can take you through the trauma stage. Or it could be a resource of some other description.
The third motto comes from one of my favourite lines in the movie. Dory, a brave but forgetful fish, keeps motivating herself by saying, “ Just keep swimming”. Other phrases come to mind. “Keep at it.” Don’t give up.” No circumstance is hopeless if we keep on trying. Often the difference between survivors and casualties is simply a refusal to quit, illogical as it may be; a decision to keep on swimming. Even if the prospects of being rescued by some cure-carrying cargo ship seem remote, there are always reasons to be hopeful.
The last of the lessons that I learned from Nemo was that survivors can be buoyed up by friends and family. There is a sense in which we are never alone. We carry others in our heart, as they do us. This gives us good reason to live; to love and be loved by others. Searching solely for self-gratifying survival is to be truly lost, for who will search for you?
I, for one, must each day refuse to stay lost in the sea of Parkinson’s. For I am only truly lost if I give in to the panic and pain, or languish in loneliness. I can thrive, not just survive, by choosing to learn lessons wherever I can, even from cartoon characters.
Diagnosed with Parkinson's Disease in 2006, I was 53. I currently serve as the President of Trinity Western University, of which I am an alumnus. I remain engaged as a lawyer who practices as general counsel to a wide variety of clients, primarily in the Vancouver region of British Columbia, Canada.
Married for 40+ years (to the same loving and long-suffering woman), with 3 grown children, and one grandson. Besides my wife and family, my passion is living the adventure called life as a God-given gift, which includes motorcycle riding, scuba-diving, blogging, Scrabble and looking for the treasure hidden in each day.