Monday, February 28, 2011

The Thorn in My Thumb

How easy it is for the trivial to trump the significant.

Saturday was unusual. Instead of the typical late February rainy day, it was snowing. Rather than reading in the family room beside a warm fire I was straining and slipping down the barely discernible, steep trail to the Salmon River behind our house. Making my way through the leafless and frozen scrub should have been easier than it was in the full foliage of summer a few years ago when I last made the descent. But my Parkinson's disease was more in command now and, taunted by the cold, made the going tougher on the frozen ground. Big snowflakes were being blown in my face by a gusting, icy wind, reminding me it was -10° Centigrade (14 Fahrenheit) with the wind-chill. It was a temperature I was used to when I was young, but now found difficult to ignore.
Despite the weather, the terrain and the effort required, it was a delightful time. I was seeing the sights and the swirling snow through the gleaming eyes of my 2-year-old grandson, PJ. To him it was an adventure of epic proportion, never before experienced. He needed little coaxing as he walked beside me on the flat parts holding onto two fingers of my left hand. Even when negotiating our way down the switchback path to the water he was content to hold my hand. It was only when he encountered the thatched maze of bush branches and fallen trees that he wanted to be carried.
The Salmon River is really not much more than a shallow creek. At this time of year the water is slow-moving enough to be frozen over in some places as it tumbled and twisted its way through the small valley it had formed over the years. We looked for the fish that had been plentiful during warmer months. But finding none PJ and I laughed in the simple pleasure of splashing down the creek bed in my tall rubber boots while he rode in my arms like a prince being ferried across a ford in a river.
While getting down to the river had been somewhat difficult, returning up the slope toting my grandson through the winter jumble of the once well-kept path had me sweating and struggling, resting every few feet. I felt every one of PJ’s 31 pounds, and every day of my 58.7 years. It was then, grabbing for branches while balancing on the incline, that I felt the sharp piercing blackberry thorn enter my thumb.
And there it remains, or at least part of it. The small spike is buried, invisible, somewhere below the surface, evidenced by only the slightest red spot on the surface of my left thumb. Despite its size, it announces its presence constantly.
Life seems to be strewn with its fair share of thorns. They are often invisible and impossible to dislodge but they can cause no end of discomfort and even pain. How can such small, trivial matters sidetrack our attention?

It seems to me that much of life is commandeered by trivia. It is the small things that seem to shanghai our best intentions. But maybe, just maybe, these tiny irritations can be a blessing, a reminder of something or someone important. In my case, the thorn in my thumb gives tribute to the priceless treasure of an hour one wintry day spent exploring the wonder of my backyard world with, and through the eyes of, my only grandson.

Thursday, February 24, 2011

It’s Three in the Morning and He Has Returned

Luminescent green and blue eyes peer at me from the dark corners of the room. I am surrounded by the silent denizens of the night. I move cautiously, watching for shadowed shapes in my path. The eyes, gleaming stares, seem to follow every stiff, shuffling move I make. The bedside digital alarm clock noiselessly announces that it is 3 a.m. My night stalker has returned.

I will not turn on the light despite knowing that flicking the switch would send the eyes soundlessly scurrying from sight. These nighttime observers are my friends, silent sentries that keep the vigil with me, doing their duties in the dark. I am comforted by knowing they are there.

It is an oft-repeated ritual. Some hours before I had plodded upstairs to bed with barely enough energy to engage in the pre-sleep necessities that pay homage to losses that attend my age. I begin by setting out clothes for the morning, deciding whether I should start with the tie that I want to wear and then match the rest of my meagre wardrobe from there. After I glance at the confusing choices of colour, pattern and width, I usually give up. I should weed through those ties someday, but I cannot seem to shake the notion that one should never throw any out that are currently too wide, too narrow, too dramatic or too plain as the styles always seem to cycle back. Most often I default to first picking the next pair of pants in the closet "line up", then shuffling through my shirts to find a match. Belt and shoes are next, followed by the inevitable search for socks that share some shade of colour with my pants. All this decision-making so I don’t make too much noise struggling in the half-light of the next day’s dawning.

Next, I usually remember to take my meds. Only three pills to take at bedtime, always wondering if they actually are needed given the absence of any PD tremour or stiffness at night. I set out the five small tablets for the morning in silent acknowledgement that I am often in such a preoccupied state that I would forget them if they were not directly in my line of vision in their Sunday through Saturday AM and PM pill box on the counter the sink.

That done, I slip between the sheets and settle into my habitual starting position, only to be reminded of more aspects of aging. My hearing aids squeal their displeasure and my glasses press uncomfortably into my face at being crushed into the pillow. With those removed I feel vulnerable to the blurred and silent darkness as I turn off my bedside lamp. Oh…one more device reminding me of disability; my night guard. Without it my nocturnal grinding would soon erode my teeth to stubs.

Sleep follows immediately. But it is inevitably temporary, as if some old angry enemy awakes me at the stroke of 3 AM. Rarely is it nature calling, as bladder control is not a part of the list of symptoms on my personal list of Parkinson’s problems. Maybe it is timed to the intensity of my dreams, often vivid but rarely disturbing enough to be remembered or retold the next morning?

What to do then? Lie there in frustration staring into the darkness? Or do I traipse downstairs in defeat, resigned to the time-tested truth that sleep will not return for at least another hour? After a short self-assessment, and trying to recall whether there are appointments early in the morning restricting my freedom to sleep in a little, the decision is made.

Insomnia is a tyrant that tortures body and soul. Perhaps it was the earliest sign of my Parkinson’s disease when, years ago, it first stood uninvited at the foot of my bed. Regardless, I soon learned that its favourite strategy was to frustrate me to the point of anger at the unproductive hours I spent staring at the ceiling, mind churning. My counter-attack was to act. If it was a panicky thought about something I needed to remember I made a note on the glowing screen of my Blackberry that was also “sleeping” within reach on my bedside table. I have learned to quit chastising myself with thoughts like, “Just forget it and go back to sleep!” That, I knew from experience, was the very effective reverse psychology implanted in my thoughts by the enemy.

Getting up, reading, making lists of what is on my mind, responding to emails, texting a far away friend or family member or drafting a blog entry are some of the ways I fight back. I deal with the scourge of sleepless hours by making them useful. In doing so I find my initial resentment turns to the ability to return to rest, knowing that my nightly visitor cannot claim victory.

It is now 530 a.m. This post is finished. It may not offer a solution for many, but it has worked for me once again. Time to head back to bed.  Now, if I only had night-vision glasses to avoid walking into the door I had closed.

Thursday, February 17, 2011

Parkinson's Disease: Step Down, Step Up, Step Forward, Step Back?

Decisions and more decisions. Each day confronts us with a barrage of choices. Many are made by habit or subconsciously, while others are avoided and left dangling like some hapless victim of a lynching. Choosing between equally tempting alternatives, such as which dessert you wish to devour may well be difficult. But picking among various undesirable options can be painful to the point of paralysis.

Parkinson's disease, or any other life-changing occurrence, inevitably presents a series of dilemmas. We may be shocked, stopped dead in our life journey, but we cannot stand still indefinitely. Life requires that steps be taken. PD demands that they be taken with some urgency.

Step up. Step up to the plate. Step up to the challenge. Step up the pace. As someone once said, "Every once in a while, people step up. They rise above themselves." It is like the story of the old mule that fell into an abandoned well. The farmer who owned him decided it was too difficult to get him out. He decided to bury him there. He and his neighbors began shoveling dirt into the old well. The mule was braying bitterly as the dirt fell, seeming to seal his fate. Not being particularly attracted to that unhappy ending, he suddenly had an idea. As the dirt fell on him he shook it off and stepped up onto it. In time, the well was filled and the mule stepped out and walked away.

Parkinson's disease provides an opportunity to step up to meet its demands and refuse to give up. Step forward to face the fears that seem to lurk just out of sight in the future.

Step down. Step down from a position. Step down off the ladder. There is a time to step down, to step back. Recent events in Egypt have demonstrated that a failure to step down at the right time can be devastating. Stepping back may enable progress to take place. It may allow others to step up and take the reins of responsibility that we may have clutched so tightly for so long. As Lao Tzu said, "Do your work, then step back." Sometimes you can only get perspective when you step down and step back.

In life, our steps rarely seem to get easier. Even walking on level ground presents more challenges to those of us who are prone to stumble. Let us not stop taking the necessary steps towards our goals, our vision, and our unique adventure ahead. The journey goes on, and we must choose our steps wisely. Step up, step down, step forward, and step back. There is a time for taking each of them.  What step is next?

“What saves a man is to take a step. Then another step.” C.S. Lewis

Wednesday, February 9, 2011

The Battle Between Brian and Todd

Brian and Todd lived together but could not have been more different. They were a very “Odd Couple”. Although they knew each other well, each seemed to have lost the ability to understand the other. And it was getting worse.

Brian usually acted every bit the 20-year-old. Appearing to be in sync with others that age was very important to him. Youth was a supple, self-confident goddess to be worshiped. There was nothing that he could not do. At least that is what he thought.

Todd, on the other hand, looked and felt all of his 60 years. Acting his age was not difficult. He was more concerned that he looked older than he really was. Definitely on the downhill side of the curve, he felt overwhelmed by the demands that confronted him daily. The anticipation of aging, wit its increasing disability, was like an eclipse that slowly blocked out the sunniest days. Everything seemed difficult.

Brian was constantly jabbering at Todd. "Get off your butt! No wonder you are looking old and decrepit, you are not taking care of yourself. You have become lazy. Are you just going to give up? Why are you surrendering to the aging process? Fight, man, fight!"

Todd reacted defensively. "You just do not understand. Growing old sucks! I am just not able to do everything that you think I can. I just do not have the energy. I am past my prime. Maybe I should be thinking about an early retirement. Maybe I will just slow down and let the fast-paced living pass me by."

Brian was indignant. "How can you talk like that? You only go round once, you know. Your life is not that bad. Lots of people have it worse. Do something about that attitude, buddy. Be positive. Push yourself! You can do it. Get that flabby body to the gym. You need the endorphins to feel better, to sleep better and to live better."

Feeling guilty and beat up by Brian's remarks, Todd spoke in hushed tones, struggling to find the right words to communicate. "You are just not being realistic. Every man, including you, must understand his limits. Some days even getting out of bed will be a struggle. How can I fit more in my day when I already feel like I am falling down from fatigue?"
Overwhelmed and saddened by the emotional exchange, Todd retreated from Brian’s relentless guilt-producing badgering. He began to tremble. Tears were forming in his eyes. What he felt was partly self-pity. But mostly it was a genuine sense of failure and helplessness. He felt caught in a vice-like grip that made even simple movements difficult. Medication helped a little, but it also left him increasingly apprehensive about his dependence on pills just to function. Was he escaping one master to embrace another? Todd found himself thinking about his younger days. He wanted to believe in Brian’s “you can do it” mantra, but he was afraid to commit to a course of action that would take even more of his depleted reserves of energy. He was caught in a tug-of-war between two opposing forces: the invincible and the inevitable. He felt immobilized by the struggle.

For a person with Parkinson's disease, or someone one on the backside of 60, this is the daily dialogue between Brian the brain and Todd the body.

The Parkinson's body experiences the pain, stiffness and slowness of movement despite the mental messages commanding it to move with ease. No positive mental attitude can restrain the tremors that make simple tasks into monumental feats or, worse, embarrassing episodes. But determination and mental discipline can contribute much to quality living.
Despite the mechanical features of Parkinson's dysfunction, the brain continues to be fast moving, usually too fast, maintaining a very short attention span, sometimes limited to seconds. In failing to recognize reality, the brain is constantly overstating its abilities and makes a habit of "over promising and under-delivering". The word "No" does not seem to exist in the brain's vocabulary, which gets the Parkinson's body into constant trouble. The brain has difficulty letting go of its youthful self-concept. It is as if the brain, ironically the source of the PD problem, is not communicating effectively with the body. Of course, that is the definition of Parkinson's disease.

So the combat rages on. Strangely, the battle represents balancing the deterioration of the body and the determination of the brain. We who face the challenge of PD benefit from the tension that is found in the conflict between brain and body. The healthy response to Parkinson's disease, and perhaps aging, is a byproduct of the dialogue of dispute between Brian and Todd.

Saturday, February 5, 2011

Distraction, Destruction and Distress: Growing With Parkinson's Disease

Seven…that is the number of times we have expanded our offices since July 1998. And here we are renovating again. Although necessary to accommodate growth, just the thought of getting bigger shifts my Parkinson's disease tremor into overdrive. Taking on additional leased premises (with the increase in overhead). Putting up with the noise, inconvenience and uncertainty of construction. Being sidetracked by priorities other than the work currently toppling from my in-tray. They all leave me wondering about the wisdom and expense (both direct and indirect) of expansion.

Pondering the process of our office renovations, I saw parallels with my Parkinson's. Each involves distraction, destruction and distress. With proper perspective, both can facilitate growth.

Our law firm has always taken a conservative view of potential expansion. Adding team members to our carefully cultivated culture has been approached with some angst. The influence of one person who fails to understand our mission and core values can be more disruptive than a fire in the file room. However, adding people to our common endeavor becomes inevitable if we are to continue being successful in serving the expanding needs of clients who place their trust in us. From a humble beginning of one lawyer and one assistant in July 1998 to our current complement of at least 20 team members has meant a steady string of renovations and additions. Over the last several months the reality of our need for additional space has become acute again.

The first obvious consequence of engaging in renovation is the distraction it brings to everyone's focus on the work at hand. It takes time to plan expansion. Drawings, budgeting, scheduling and relocating all require hundreds of decisions, each of which require care and attention to detail and, typically, need to be made immediately. Since PD entered my life it has been a sometimes all-consuming distraction. The shaking, stiffness, fatigue, insomnia each dictate constant awareness of the disease. Add to that the need for medication, neurologist appointments, physiotherapy, and a nap from time to time, and you have more than a small disruption of daily routine. In a word, Parkinson’s disease is definitely disruptive.

Another result of engaging in expansion of the office space is the need for destruction of perfectly functional office improvements. Renovation requires removal of fixtures, demolishing walls and tearing up carpets. These are all necessary to permit the reconstruction of improved premises. Parkinson's results from the destruction of dopamine, and the consequential loss of functionality. At times the disease strikes with sledgehammer effect, damaging or destroying expectations, aspirations and opportunities.

Perhaps one of the most disconcerting aspects of expanding our offices has been the stress that we all experience. The "normal" office configuration is upset. Process and people are rearranged. Uncertainty replaces the usual, every day regime. Change, even when it means overall improvement, inevitably creates some distress and insecurity. Will it work out as expected? How will all this affect me? Similarly, those of us who face the stark reality of Parkinson's are confronted by a constant "new normal". Continual degenerative condition can easily create a disturbing sense of distress. What will the future hold? How fast will the disease progress? How will this all affect me?

Despite these difficulties, the resulting growth can be an exciting process. But whether it is the expansion of physical or other less tangible horizons, growing involves challenge and stretching. Even before being diagnosed, I recognized the wisdom of what James Freeman Clarke said in the early 1800s, "We are either progressing or retrograding all the while. There is no such thing as remaining stationary in this life". Little did I know that this “progress” would play out in my life in the challenging way it has.

Comfort leads to complacency. “Adversity precedes growth” [paraplegic, Rosemarie Rosetti]. We need to grow. Refusal to “renovate” means a rejection of growth. The only alternative to expansion is resignation to stagnation, a form of slow dying. I am totally convinced that Parkinson's disease provides opportunities for growth. It presents opportunities that would not otherwise be available.

…be ready at any moment to give up what you are for what you might become.
W. E. B. Du Bois (black civil rights activist)

Tuesday, February 1, 2011

Life and the Long Train

The long striped arm swung down from its sentry position stopping the battered pickup from bumping its way across the single pair of railway tracks. Two red lights perched blinking on the bar like owl's eyes on a swing-down target at a shooting gallery. Indeed, the scene was like a carnival with frantic clanging of bells and flashing of lights that hung below the white X-shaped sign that crowded the side of the road. Of course, that clamour was simply a warning of the imminent arrival of a late night freight train. The farmer in the old truck had often heard the shrill whistle as he worked in the barn a half a mile from the country railway crossing.

While he waited, the rain fell hard and was instantly slapped away by the windshield wipers only to be replaced by another sheet of water. Despite the racket of it all, the weary farmer mindlessly counted the boxcars, covered hoppers and flat cars as they rumbled by some 10 feet in front of his old farm truck's headlights. One, two, three…he could not take his eyes off the passing cars for fear he would lose count. Meaningless, he knew, but somehow the grey-haired man was compelled to continue counting. It took his mind off his longing to get to the welcome of his warm home. Yet, at the same time, the numbers he spoke out loud prodded at a forgotten pain he felt inside his head.

23, 24, 25…he wondered how soon the end would come. His squinting stare strained to count the railcars that slid by. Each set of wheels marked its turn with the same staccato rhythm on the rails. 38, 39, 40…his eyes grew tired of keeping pace. The ache developing in his head began to throb in sync with the groaning rail bed he saw in the truck’s lights. He felt the ground under the train rhythmically sink then recoil under the weight of each set of steel wheel that passed.

61, 62, 63…when would he count the last one? He knew it would not be a telltale caboose. They had long since been abandoned or sold to railroad connoisseurs for private enjoyment of a bygone era. Whatever that last railcar was, he knew it would arrive suddenly and be gone into the stormy night. It would click over the joints of the smooth rails and fade into the distance with only its electronic ‘FRED” (flashing rear end device) marking its departure.

87, 88, 89…then, without warning, an empty open hopper car with nothing behind it fled past. The farmer was left alone with an odd sense of loss. Perhaps, he thought, it was the end of the ebbtide of problems that swept back to claim the territory lost to the train’s arrival. Or maybe it was a dim memory of missed boyhood opportunities to place pennies on the track to be flattened by the daily train into treasured souvenirs. The years had gone by so quickly.

The red and white protective arm, gripped in the claws of the “owl”, red eyes no longer shining, rose into the suddenly silent night. Putting the pickup into gear and touching the gas, the farmer bounced over the rough crossing. As he did, he glanced after the long train and vowed to himself to count the cars on each train he saw at the crossing. Maybe he would keep some pennies in the truck, just in case. After all, life is short.

Life passes like a long train
We count the cars like years
It flattens all our pennies
And leaves us souvenirs
We trade our childhood wonderment
For struggles, hurts and fears
We give up grand adventures
For hurry, wealth and tears.

Wherever our train travels
Until it disappears
Let’s live each moment bravely
Come jeering or come cheers
Let’s live each day in conscientious care
Of family and of peers
Then leave our living legacy;
The truth for eyes and ears.