Saturday, April 30, 2011

The Day I Was Defeated

It was another rainy April day 30 years ago. The gray skyscrapers blended with the gray rain from the gray skies as I walked away from the courthouse in the gloom of my dark thoughts. My mind searched frantically through its database of excuses and scapegoats but found none worthy of the occasion. I had no one to blame but myself. I had blundered badly in the important courtroom battle. I had failed miserably. Worse, I had failed others in the process. I could not ignore that reality. I saw in their eyes. I had not prepared my clients to lose. I had not prepared myself for that disappointment. I wanted to cry out in self-pity, rail against God because of my weakness, put on the proverbial sackcloth and sit in gray ashes in grief and public humiliation I was worthy of. But it all seemed wrong, selfish, melodramatic and too easy. Defeat had come at my own hands, as it unavoidably would from time to time over the next 3 decades.
Today I shuddered noticeably as I recognized the same sinking sensation and heard the same self-indictment, "You failed!". In my business this condemnation must be recognized for what it is: fact, as inescapable as my humanity. I have often felt the fear of failure, the specter of imminent defeat. And when it comes I remember its sting, its harsh criticism or its wagging finger reminding me that, "You could have done better". I will never grow accustomed to that sick feeling of shame. And that is a good thing.

I once heard a senior lawyer who, with chest puffed out as if to show off a string of shiny medals, announced to me, “I have never lost in court and I never will”. Immediately, I found myself both jealous, wanting to be able to make that claim, and disgusted, for I knew he was a braggart barking for attention, a liar covering his lackluster record or a coward for having never taken on a difficult case. Perhaps he was all three. In the final analysis, I felt sorry for him, for I had learned little in my successes, but a great deal through my failures.

In a sense, Parkinson's disease is akin to the type of failure I had experienced in courtrooms, negotiations and other legal “competitions”. Perhaps my prior failures had prepared me for grappling with this neurological giant. My past experiences have taught me to process "failure" carefully by asking:

1. Is “failure” just a feeling or a fact? Is it prematurely anticipated or fully realized? Is it a realistic assessment or simply the fruit of my excessive expectations? Many times PD leads to feelings, fearsome and foreboding.
2. Is “failure” stopping me from enjoying things? If, as is often the case, my sense of failure is more a feeling than a fact, it may still need to be vented. I have tried to find a nondestructive way to balance out the heaviness with something that refreshes me, like taking a ride on my motorcycle.

3. Have I learned anything? Most of my past failures proved to be invaluable experiences, teaching me things that I could only learn through a sense of defeat. Parkinson's is the same. While I may not feel like it, I try to redefine my losses as lessons from which much can be gleaned. This process typically sends me on a search for the treasure that may lie buried in the muck of my embarrassment. Parkinson's disease can yield much reward.

4. Is it necessary to beat myself up over “failure”? Pummeling myself over some human frailty rarely accomplishes anything, although failures can leave unnecessary "bruises" and scars if simply suppressed. For me, it seems necessary that I find a place (like a journal) to express my frustration. But having done so, such recognition time must lead me away from mourning to moving on. I need to take responsibility for my failures; I also need to forgive myself, let myself off the hook a little, and go forward.

As Alexander Pope said in 1711 in “An Essay on Criticism”:

To err is human, to forgive divine…
Not free from faults, nor yet too vain to mend.

Friday, April 22, 2011

Living Life by Accident

It was "Good" Friday 13 years ago. I had been awake since long before dawn. There was a sense of foreboding about the day, but nothing prepared me for the "perfect storm" that was to be unleashed. The events that followed (I will spare you the details) left me scarred, disoriented, my confidence shattered. It took days before I regained partial consciousness, only to find myself clinging to the charred remains of what had been a well-ordered life, my lungs screaming for breath as each wave sought to drown me. My life became a bewildering sea of confusion. With no idea of which direction to swim, I felt like Coleridge’s Ancient Mariner, “Alone, alone, all all alone, alone on a wide wide sea! And never a saint took pity on my soul in agony”.

Life can be a scary prospect. Accidents happen every day. Some of them are good, and some of them are disastrous. Bumping into an old friend on the street. Good. Backing into a post in the supermarket parking lot. Bad. Marrying someone who actually sticks around "for richer or for poorer, in sickness and in health". Extraordinary. Being estranged from someone you love. Heartrending. Being born into a family in a country that can meet your every need and provide opportunities that seem endless. Fantastic. Living life in a poverty-stricken Third World country, facing the crossfire between religious fanatics while at the same time losing family members to AIDS. Crushing.

For some, life is what happens to you. It is comprised of reactions, attempts to escape the negative and enjoy the positive events encountered as we wander aimlessly. Life is lived by accident. There is no overarching purpose, no North Star. It is a jigsaw puzzle in which few of the pieces fit together at all.

For me, I choose to trust that the puzzle pieces do fit together, even if I cannot see the full picture at present. Despite the consequences that followed, neither the events of Good Friday many years ago, nor the diagnosis of my Parkinson’s disease, were accidents. Difficult though it has been sometimes, both "tragedies" focused my heart and mind. They caused me to ask the defining question, "What is my purpose?".

Statisticians say that 85% of us live life by accident. That is, only 15% of us have a definable, overriding purpose or plan, a set of lifelong goals or aspirations. 85% of us spend our lives avoiding or reacting to the events that invade our every day existence. Perhaps surprisingly, only 2% of us write down our purpose, plans, goals and aspirations. But it is that 2% who are 10 times more likely to achieve them. That is purposeful living.

It seems only fitting that, on a day that commemorates an apparently purposeless death by the cruelest means, we should consider how we might live life with a sense of purpose. Whether you are religious or not, the story of Good Friday, followed by Easter Sunday, became a defining example of a "purpose driven life".

I can now look back on those days, 13 years ago, and refer to them as some of the best things that have ever happened to me. The tumultuous events led to extraordinarily positive consequences, undreamed of opportunity and blessing. Now that more than 5 years have passed since the diagnosis of Parkinson's disease, I am beginning to see a similar pattern. A sense of purpose has arisen.

I am faced every day with at least two tough questions: Will I believe that life is a series of accidents, or is there purpose behind each event? Will I live life by accident or with purpose?

Sunday, April 17, 2011

Tearing Down Fences

It was an old, four-strand, barbed wire fence. From the look of the mostly-rotted posts that held up the rusty wire it should have been easy for my son and I to tear down. But when it comes to fences, whether constructed in relationships or built to separate portions of land, appearances can be deceiving. Removing a fence can take even longer than it did to build it in the first place.
One difficulty arose in removal of the fence because it was obscured by and enmeshed in the undergrowth that had sprung up over the years. In some cases, the wire was actually embedded in a tree branch. In other places the bottom strand of wire was buried in the ground among tree roots. To deal with the fence we had to clear some of the brush and excavate around some trees. But that was not the hardest part. Even after the barbed wire was carefully wound into wicked-looking wreaths, there were the posts to deal with. Some were easy, almost disintegrating in our hands. But others were like extremely stubborn sentries, defiantly resisting all but the most strenuous efforts. It was exhausting work. After hours of exertion we were successful in removing only about 25 metres of fencing.
I have built many "fences" in my life, or in some cases allowed them to be constructed. These were not physical fences, but they are nonetheless real. Most of them are hidden from view, having been overgrown over the years by the "scrub brush" that fills in each day. Despite obscurity, my fences remain haunting reminders of the past need, perceived or real, to have them in place. Initially, fences of all kinds are erected to keep something important in, or something dangerous out. They are intended to mark off territory, inevitably restricting both the freedom to come in and go out. Robert Frost once said, "Do not ever take a fence down until you know why it was put up". But even when any initial purpose has long since disappeared, the fence still stands, blocking, or at least impeding, access to what lies beyond. Long after their usefulness has dissipated, they remain a testimony to past insecurity.
While it may be true, as Robert Frost wrote in his poem "Mending Wall", that, "good fences make for good neighbors", it is also true that fences can constrain the growth of those kept in as well as those fenced out. "Fear is the highest fence". Sometimes, I have left the fences in place far too long, failing to tackle the task of tearing them down, perhaps out of laziness, or most likely because of fear.
Parkinson's disease, or most any other disease, can easily become a fence. Uncertain as to how others may respond to its visible symptoms, it can have the effect of keeping people at the perimeter of one's life, protecting the vulnerability that one so often feels. As I anticipate the increased challenges of the disease, I realize that it will take increasingly fierce and focused effort to clear away the daily distractions and tear down the fences that limit my freedom, and that of others; freedom to confront reality with all its pain and promise; freedom to live as fully as possible.
It is time to tear down some fences.

Wednesday, April 13, 2011

I Just Do Not Care

Why vote, it does not matter who gets elected. Who cares who wins the Stanley Cup? Why bother working so hard, what difference does it make anyway. War in Libya? What does it matter? I just do not care.
Do you ever get to the place where you find yourself repeating, "I just do not feel like it"? The things that you once enjoyed do not have any "kick". You find yourself just wasting time with mindless and meaningless activity. Life just seems to have had the joy sucked out of it. Not a fun place to be, is it? But most, if not all, of us, at some time or other, find ourselves in those emotional doldrums.

Apathy. Indifference. The absence of excitement, motivation or passion. It is different than depression, boredom or just feeling down. Apathetic folks become lethargic, uncaring and distant. With all that life has to offer, even if there are some problems to be faced, it is hard to believe that apathy is even possible, let alone prevalent in our society. Feeling embarrassed, guilty, even ashamed, the truth is that apathy slips into my thinking more times than I would like to admit.

For people with Parkinson's disease, retreat into an apathetic state is an increasingly significant threat. It seems that as the dopamine drains from our system it takes with it our enthusiasm for almost everything. A recent study shows that a minimum of one-third of high functioning PD patients are apathetic, whereas this number skyrockets to 80% for those on the extreme end of the disease. Maybe it is the loss of dopamine, or maybe there is a loss of control over our bodies.

So what do you do when you "just do not feel like doing anything"? Regardless of the source (chemical or emotional/psychological), I have discovered that this is a battle I must fight with strategy and discipline. Psychologists believe that apathy affects "executive functioning" (which is not sitting behind a big desk with the title of "Chief Executive Officer"). The executive system is thought to be heavily involved in handling situations in which routine thinking or behavior would not be sufficient for optimal performance, including:

1. Planning or decision making
2. Error correction or troubleshooting
3. Unrehearsed or novel sequences of actions
4. Dangerous or technically difficult situations
5. Overcoming strong habitual response or resisting temptation.

These, then, are the battlegrounds upon which apathy can and must be fought. Getting apathetic? Try the following:

1. Plan a trip to a place, near or far, you have not been before, at least for a long time. Make a decision that you have been putting off, like going through your dresser or closet for clothes to give away.
2. Fix something that is broken, such as a dripping tap, a hole in the wall, a light bulb that needs replacing. Figure out how to use that computer program you have avoided.
3. Go to an event that might make you feel uncomfortable, like a "slam poetry" contest, improvisation theatre, or a yoga class.
4. Do something edgy. Sign-up for parachute lessons, a self-defense class or volunteer at a rehab centre.
5. Give up your favorite "comfort" food for a month and replace it with something healthy.

Whether it is Parkinson's disease or something else, apathy is an enemy that slowly steals our initiative, our motivation. Getting in means we go blind, deaf and dumb; we lose the vitality of our senses of smell, taste and feel. To surrender is to sink into a lifeless sleep so that apathy may plunder our soul. We must recognize our opponent for what it is: a slow and senseless death sentence. Prepare for battle!

Sunday, April 10, 2011

A Day to Disregard Deadlines

Amidst the deadlines and the demands of this busy season of life,  I was reminded of this blog I posted a number of years back now.  Convicted yet again of the value of time and being careful to choose the right priorities.

Gusty winds made his cheeks redden, looking as if he had discovered makeup for the first time. At 11 AM it should have been warmer, but the spring sky remained cloudy, threatening rain, and the temperature hovered winterlike at 5°C (42° Fahrenheit). There was work to be done, both inside and outside, with little time to do either. But I had promised that young man we would do something and, even though he might not remember, I would. The work would have to wait, as I could not let my words spoken to him echo in painful regret and shame into the future days, or months, or longer.
My grandson, PJ, sporting his yellow slicker just in case the rain came early, was bundled against the chill as I walked, him running ahead with excitement, toward the edge of the hill behind our house. He knew where to go, although leafless trees guarding the edge of the property scarcely hid our destination. "Go down the hill, Grandpa?" he said, momentarily stopping. Knowing the path that lay ahead through the trees he let go of my hand and ran as fast as his legs would carry him. Catching up with him just before the terrain tipped into the shallow ravine, I grabbed his hand again. Breathless, all he could say was, "Let's go see the water, Grandpa."

Slipping and sliding in fun down the narrow path that leads to the valley's bottom, we arrived at the small river's edge. Knowing the answer already, I asked my young companion what he wanted to do now that we had arrived. "I want to go in the water. Please Grandpa?". Before finishing the sentence he grabbed my hand and pulled me toward the riverbank. As he neared the "river" (more like a creek, really) he reached up to be carried. We both entered the water with a sense of anticipation, his being the prospect of the adventure that lay ahead, mine being the potential that the swift running, frigid water would overflow my boots.
Despite feigned close calls on slippery rocks and pretending to be stuck in soft sandbars, we soon found what was becoming our favorite place, a pebbled shore where rocks were in abundance. I quickly forgot about time as we threw an endless barrage of everything from small stones to boulders into the rushing stream, creating a variety of splashes depending on the size and trajectory of the rock thrown. An hour went by. We talked little, except to comment on the distance of a rock thrown, the size of a splash made, or the discovery of a worm underneath a piece of ammunition we needed for our assault on the river. A wide grin never left either of our faces.
It was only later, when I held my pajama-clad grandson, celebrating the day and kissing him goodnight, that I realized how during the aimless hour we spent tossing stones into the river I had entirely forgotten my waiting work and even the fact that I had Parkinson's disease. It was as if the complexity of my life was swallowed in the simplicity of his enjoyment of that hour. All of my demands and deadlines ceased to exist during that time, disappearing like the stones we had thrown in the water.  This poem I found (author unknown) seems to say it all.

Drive hard to deadlines day-by-day,
My discipline dictated,
Demanding I be duty bound
Delights must stay deflated.

Dawn leads to dusk and every day
My dreams seem strangely distant.
Disease draws near, depression's crown,
Discourager persistent.

Despite life’s daily drudgery
My destiny calls, "Forward.
Defeat the dark and death delay,
Destroy the gloom, march onward".

Decision made, defying doubt,
My task a young boy’s wishes,
Depose all lies that toil and sweat
Dare rival hugs and kisses.

Wednesday, April 6, 2011

5 Insights into Inspiration

Breathe in. Breathe out. Breathe in. Breathe out.

You cannot breathe out what you did not breathe in. Each breath is a gift given to each of us that we cannot retain. It is the gift of life itself.

"Inspire" literally means, "to breathe in or onto". You cannot inspire others until someone or something inspires you. To the extent that someone is inspired he or she will naturally inspire others. Inspiration is a gift.

Since being diagnosed with Parkinson's disease in 2006, I find myself continually seeking inspiration. Who does not want inspiration? And who does not want to be inspiring?

But how do we live an inspired and inspiring life? Just as a breath disappears in a moment, it may also be true that any insights into inspiration are equally fleeting. But, for what it is worth, here are my thoughts.

1. Like the air we breathe, inspiration is all around us. Like taking a deep breath of crisp, clean, mountain air, inspiration may be good. Or like inhaling brown, polluted smog, it may be bad. There is no noticeable shortage of either. Inspiration may be found in the vastness of nature or isolated in the end of the drug-dripping needle.  Your choice.
2. If we value our ability to breathe, we need to be discriminating about what we breathe. There are plenty of toxic fumes that can prove lethal. In fact, my own Parkinson's disease may have resulted in part from growing up in pesticide-protected apple orchards. Ignoring where we get our inspiration can prove just as toxic.

3. Deep breathing is healthy. It feeds every cell in your body, lowers your heart rate and decreases stress. It releases nature’s built-in painkillers, endorphins, into your body. It exercises your body and clears your mind. Inspiration, too, has seemingly supernatural potential. It enlivens us and gives us perspective. It feeds our souls.

4. Breathing is a continual process. Our bodies were built to rely upon it. But rarely do we actually recognize its presence and importance. Likewise, although our spirits long for inspiration, we often ignore its sources. We take it for granted, settling for ignorance, diversions, entertainment and the unimportant. Without inspiration we live in dissonance, knowing we are missing something vital, yet dashing on to the next distraction or drama.

5. The more you breathe in, the more you breathe out. It is a cycle. And so it is with inspiration. Whether good or bad, that which has been inhaled will be exhaled. While it is generally true that, "we are what we eat", it is also accurate to say that we only inspire others as we ourselves are inspired.

Listen, wait, read, and watch attentively. All the while discern the best sources from which to breathe deeply. Be prepared to be delighted with the discoveries you make.

For me, I am often inspired by the courage of others who fight their own adversities and share with me their stories of wars, both won or lost.  Whether lost in the subtlety of a sunset, or confounded by the complexity of the human mind, or overwhelmed in the wisdom of the elderly or the unvarnished truth of a child's words, let us seek inspiration daily so that we may become inspire others. To fail is to expire before our time.

Saturday, April 2, 2011

How Many People with Parkinson's Disease Does It Take to Change a Light Bulb ?

When it comes to the bulb in a headlight assembly of the 2009 Ford Fusion, and I am the person with Parkinson's, the answer is "none".

It should have been a simple task. Having worked part-time in a Chevron service station as a teenager, I learned to change tires, do oil changes, fix flats and replace turn signal light bulbs and headlights. But that was in the 60s. Today, it seems, you need to be an automotive technologist (the word "mechanic" is now outdated, following blacksmith, milkman and carhop) in order to even change the wiper blades on any vehicle.

For the last 6 weeks I had been driving with one headlight out. Based upon what I thought was my junior garage mechanic status, I concluded it could not be all that difficult to change a headlight bulb. I went to the local Canadian Tire store and found a six-foot high (2 m) rack of bulbs that stretched 30 feet in length (6 m). Now, apparently, every vehicle has at least 2 different kinds of bulbs, one for high beam and one for low.

I asked an aimless, surly-looking sales clerk how I could find the right bulb for my vehicle. He muttered, "Look in the book". About halfway down the aisle of bulbs was a dog-eared book the size of a family Bible perched on a small shelf. Being trained to read critically, I found the make, model and year of my car and quickly located the line that displayed what I was looking for: "Low Beam Bulb – T9045-A". Looking at the rows of packaged bulbs I noted that they all had numbers on them. However, none of the bulb numbers were sequential. Repeating the right number to myself, I went column by column until I found the right number. "Eureka".

Having paid the $29.45, plus tax, for the little bulb I had hunted down, I felt I was almost finished the job. But once home, after reading the vehicle maintenance manual and popping the hood, I realized that I had been a little optimistic. As anyone who has looked under the hood of a recently manufactured automobile can tell you, the engine compartment resembles a suitcase tightly packed with wires, hoses, belts and plastic sealed units. There is very little space left for any intruding hand, especially if that hand, shaking uncontrollably, belongs to a person with Parkinson's. After 15 minute search I found a hatch had been cleverly hidden in the front wheel well of the passenger side of the vehicle, a plastic flap covering an opening the size of a softball right behind the headlight. "Easy", I thought as I removed the access panel, reaching elbow-deep in to grasp the burned out bulb.

After more than an hour of suffering scraped arms and bruised knuckles in my attempt to dislodge the bulb from the cramped headlight housing. Looking carefully at the one I had just purchased, and then the one that I had extracted, I realized that I had purchased the wrong bulb.

So, before heading home after work the next day, I stopped at the same store and asked a salesperson to find the right bulb for me. He asked me which one was needed, and I showed him the bulb that I had extracted with such difficulty. He found a replacement easily and even volunteered to put it in for me. That may have been due to my scab-covered knuckles or my trembling in trying to extract the proper amount of money from my wallet. But, unfortunately, I had left at home a small clip that was needed to complete the job.

So, on my own again at home, I managed to replace the bulb somewhat triumphantly after only 45 minutes this time. However, I was premature in proclaiming victory as, turning on the headlights, the right side was totally dark. Exasperated, I quit, vowing to take the whole thing into the shop next day to fix the wiring or whatever else was wrong with the headlight. This was clearly a task above my pay grade.
I marched into my home office to bury myself in work that I could actually accomplish. My 26-year-old son, Adam, who was visiting, poked his head in and asked me what was wrong. When I explained he volunteered to try his hand at fixing the stubborn headlight. In a matter of moments, me staring over his shoulder offering useless advice based on my failed attempts, he announced, "Dad, you were changing the wrong bulb."

It turns out that I had purchased the right bulb the first time, but removed the wrong bulb from the headlight assembly. In addition, Adam found that I had dislodged the turn signal bulb, thereby making it useless.

You know, I have decided something. If ever I am tempted to fix some small automotive maintenance problem, and Adam is not available, I will remember my mechanical misery and have a professional fix it. It will be worth it.