Be Prepared!

Video games, text messaging, sports, the arts, extracurricular activities and clashes with societal values seem to have effectively elbowed the Scouting movement from its prominence in Western culture.  Perhaps it is just me mourning the loss of the “good old days”, but growing up I could not have asked for better preparedness training than the Boy Scouts.  Be prepared.  An anachronistic sounding isn’t it?  It is like an old three-mast sailing ship that has been cut adrift, left rudderless and dragging its anchor, easily left behind by the sleek and sensual seagoing craft that dominate the busy seas of entertainment, relevance and life’s demands.  Be prepared?  What does it mean?  Prepared for what?  Who has enough time to be prepared?  Things are changing so fast no one can possibly be prepared.

Seven years ago, January 19, 2006, I was diagnosed with Parkinson’s disease.  I was, to say the least, unprepared.  Emotionally, relationally, professionally and medically I had no clue what I was in for.  Of course, Parkinson’s disease is different for everyone who hears the words of that unfortunate diagnosis.  Unfortunately, in recent years I have found my busyness easily eclipsed the solid fundamentals of preparedness.  Indeed, that Thursday, 2568 days ago, left me grasping for life-bouys just to keep from drowning in the overwhelming implications of my PD diagnosis.  It still does in some senses.  But, slowly, I’m learning. 

Like I did when I was 14.  It was 1966.  I had long since graduated from the “dib, dib, dob” of Cub Scouts, and was moving through Boy Scouts into what was then called Queen Scouts (shortly after renamed to Venture Scouts).  One of the key challenges (badges) barring entry to what was then the highest level of Scouting involved a 72 hour “wilderness” survival camping trip.  Accompanied by an older scout, Brian, I had to be prepared to navigate using a map and compass, build a bivouac from entirely natural materials, and survive on a very minimal and basic food supply accompanied by berries and edible roots, leaves and other flora discovered along the way.  As well, I had to know first aid, the constellations, and the names of birds and animals we encountered.  Perhaps the greatest challenge was to light a fire without a match and keep it alive.  As I recall, the journey was a distance of some 20 miles or more through some pretty rough terrain.  I remember much of the route to this day.  I also remember being tired and quite hungry when it was over.  It had tested my skills, my endurance and my preparedness.

In some senses, we cannot be prepared for the eventualities of living.  It is often a journey that is full of surprises.  Although other people with Parkinson’s have walked the path way ahead of us, they will have experienced it differently.  But, just like a Boy Scout on a wilderness survival camping trip, dealing with Parkinson’s disease requires some preparedness.

How can we prepare to deal with a chronic, currently incurable, degenerative and debilitating disease with all its variables, offs and ons, shaking and freezing and ever-changing regimen of medicines and therapies?  As a fellow traveler on this journey, let me share seven things I have learned in the seven years since my diagnosis.

 

1. 1     Don’t try to go it alone.  There is no need to.  Let someone else walk alongside you.  If not physically present, a companion who is electronically present can help.  For safety and sanity, stay social, stay connected.
2. 2.     A map used by others can be a helpful tool, even if not perfect.  Reading about, listening to, communicating with other people with PD can provide encouragement and advice as to how they made their way along the pathway.  Their experience, their map outlining the way they went, can be incredibly useful in plotting your own course.
3. 3.     Sometimes all you need to know is the direction you need to go.  A compass is a simple instrument that points True North.  Just like the key principles in your life, it will point you in the right direction.  When you’re feeling lost the map may not help you.  But a compass will orient you.  Keep your eye on the direction you’re heading, the important values you believe in.
4. 4.     Have a place of shelter.  In survival camping you learn to make a shelter under varying circumstances.  When darkness falls or inclement weather approaches, a convenient sheltering tree, rock overhang, or even a cave (uninhabited you hope) can provide shelter.  Finding a place of comfort when it’s time to stop and rest is important for our soul.  Where do you retreat when the storms roll in and it is difficult to keep going?  Find a place.
5. 5.     Treat your body well.  Eating, exercising, and resting are all fundamental to enduring our battle with Parkinson’s, just as they are to enduring survival mode camping.  Having the disease is like being in a wilderness where the fundamentals are sometimes difficult to maintain.  Take care yourself.
6. 6.     Learn what you can.  Being on a wilderness hike provides the opportunity to observe and experience in special, even unique, ways.  Parkinson’s disease provides similar opportunities to discover the unique abilities of our bodies, and how those same bodies can react to disease.  But it’s not just the disease that we can study.  It is how we can fight, and even conquer, its effects.  The more we know about our ailments, the more we know how to respond to them.
7. 7.     Finally, when you’re tired, discouraged and have limited desire to carry on, persevere anyway.  We need you to keep the fire alive, grit your teeth and push harder along the journey.  Even if no one else notices, be your own hero.  Take each day as it comes, with its challenges and opportunities, and makes the most of it.

BE PREPARED!

Bonded Or Abandoned in Troubling Times?

Elsa was an extraordinary woman.  She died on January 15, 2013.  Even at 79 it seemed too soon for her to go.  She was my mother-in-law.  I loved her.  None of the normal mother-in-law jokes applied.  Amazing as she was, she did not have what you would call a “high-profile”.  In fact, from a public perspective her passing will garner little more attention than the obituary published in the local newspaper.  However, she left an awesome legacy, an endowment of sorts.  An investment that will continue to pay dividends decades into the future.  Let me explain.

The days leading up to Elsa’s death were deeply troubling for her family.  Starting in November last year it was the blood clots causing pain, swelling, fatigue and fear of anticipated repercussions.  Numerous hospital visits didn’t seem to provide any real answers.  Then, in December, she suffered a stroke that hospitalized her for what was thought to be a relatively short period of observation.  The day she was to be released she suffered a heart attack, which resulted in the widespread cancer being found.  There was no medical solution.  The family listened, their tears falling onto the table in the ICU conference room as the oncologist sensitively described her terminal condition.  Elsa’s wishes had been made clear in her Health Care Directive; there was to be no artificial extension of her life under the circumstances.

During the whole time of her hospitalization, including at the moment of her last breath, her room was filled with family.  Children, grandchildren, and spouses of both, all cherished the opportunity to hold Elsa’s hand, praying, singing, whispering in her ear how much each of them loved her, and even laughing.  While many patients in that ward lacked even a single visitor, hospital staff expressed astonishment as each day’s 24 hour family vigil lovingly continued.  Despite the soul-searching challenges that always seem to arise in these moments, the bonding evidenced by Elsa’s family was the finest tribute possible to her life’s work as a wife, mother, grandmother, and great-grandmother, and even mother-in-law.  Everyone knew they were loved by her, and by each other family member.  It was expressed not only in words but also when language could not express the sense of impending loss and grief.  Not a single family member was outside the circle.  No one was abandoned.  The family had been bonded together by glue that had taken a lifetime to lovingly apply.  To use the word picture of the Simon and Garfunkel 1970 hit, they together formed a “Bridge Over Troubled Waters”. 

Some families on that same hospital floor appeared to be drowning in troubled waters rather than bonding.  Take the woman, dressed in hospital gown and slippers, who literally chased her scruffy, glassy-eyed, smoke-saturated son on his speedy retreat through the lobby.  His escape was hastened by her shouting, “Don’t ever come back here!  I never want to see you again”, followed by other damning injunctions punctuated with expletives rarely heard in a hospital hallway.  The true character of a family, or of individuals for that matter, seems to become evident in troubling times.

Sitting in that hospital room, reading her favorite Psalms to my mother-in-law as she waited to die, I felt a deep sense of sadness juxtaposed with an even deeper sense of peace and confidence.  There was no unfinished business; no messages of love left undelivered.  Her life’s testimony stood around her; a family bonded together. 

There are many events in life, testing times when families either fall apart or pull together.  Some members will feel lost, even locked in loneliness, while others will feel embraced and empowered.  Elsa’s family members are definitely in the latter category. 

These last few weeks have reminded me – I must continue to reinvest my “riches”, ensuring that I pass on the legacy so selflessly invested in me by my much-loved mother-in-law and others.

Are You Miserable?

150 years ago life was much different.  Almost everything we take for granted didn’t even exist for the general population back then.  This includes the basics; clean water, readily available food, a system of healthcare, basic human rights, or even basic sanitary safeguards.  Living, for many, was a relatively short, hopeless, miserable subsistence.  And yet, for some, as dingy, desperate and depressing as it was, life still held meaning, even significance.  Somehow, people found redemption and purpose in the rubble of human existence.  Sometimes, despite, or perhaps because of, the devaluation of human life, people do the unimaginable and put others first.

Les Miserables, the miserable ones, is an archetypal story packed with the power and purpose of love and selfless devotion to others.  Although every subplot is full of loss, pain, sadness and injustice, those starless black nights do not prevail.  It is the costly blood-red sunrise of grace, forgiveness, hope and courage that wins out.  In the epic novel, as in life, only through sacrifice can the evil of self-interest be defeated.  Watching the 2012 movie rendition seemed like a fitting way to spend New Year’s Eve, although, even with his extraordinary acting talent, I did have trouble accepting Russell Crowe singing his lines. 

The book was written some 40 years after the events, giving some historical perspective to the author who lived in Paris through the explosive days of the 1820s and 1830s.  They must’ve been soul-searching times for Victor Hugo, challenging his worldview on topics from politics to the plight of the poor, religion to legalism, the coexistence of depravity and goodness in the heart of humanity.  One feels the inward battle being fought daily behind the barricades thrown up in the alleys and avenues of life.  All the while we echo the words of Fantine, mourning the loss of what could have been.  “I had a dream my life would be so different from this hell I'm living!”  Little wonder the book was written in 365 chapters, a type of devotional, giving us one reading for each day of the year.

Mine were not the only tears shed in that dark theater on the last day, the last hours of 2012.  We all knew the story, but in some way, small or large, we were part of that narrative, we played the role of almost every character.  We have been unjustly accused, angry and the victim of abuse.  We may have been thieves or thugs at times delivering retribution and rebuke.  And on occasion we may have played the selfless Samaritan, extending goodness and grace.  Regardless, we understood the author’s words; 

We are all prone to succumb to self-pity when called upon by life’s circumstances to suffer.  And like ex-con 24601, Jean Valjean, we have a decision to make when faced with adversity, unfair, undeserved and unanticipated though it may be.  We all must answer the question “Whom Am I?”  We must choose.  Will we be a number existing on paper or a person living with purpose?

“Life, misfortunes, isolation, abandonment, poverty, are battlefields that have their heroes; obscure heroes, sometimes greater than the illustrious heroes.”   Victor Hugo, Les Miserables

Moving Can Be Difficult

Maneuvering down the stairwell the two young men managed to put the corner of a piece of furniture right through the wall, leaving a jagged hole the size of my fist.  Two others learned too late the importance of counterbalance when moving several made-to-measure workstation counters.  Removing one from the dolly caused the other one to keel over, hitting the ground with a thunderous crack and rendering the counter useless.  Further mishaps included dropping custom-made wooden desks onto concrete, dragging fine furniture along exposed aggregate, laying fully laden metal file cabinets on their sides so that their drawers would never open or close again and tossing boxes carefully packed with computer equipment around like pillows.  At times it seemed to be more like the filming of a Three Stooges movie than a professional moving company doing its job.  It would not surprise me if the damage claim exceeded the fee payable to the movers.

Moving a small 20 person law office, even three blocks up the street, is a demanding feat.  Even when accomplished over Christmas break it is daunting and disruptive.  I have learned some things from this business move that seem applicable to my 2013 Parkinson’s “moving” challenges.

1.     If you intend to stay vibrant, dynamic and relevant as a business (or as a person), you must be prepared to grow.  While it is easy to stay put in one’s comfortable surroundings, previously chosen premises, or patterns of living, will not typically remain appropriate.  Moving often becomes a must.  For people with Parkinson’s it is a necessity if we expect to maintain a reasonable quality of life.

2.     Moving requires significant advance planning.  In our case, changing addresses required almost a year.  Finding out what we really wanted was critical.  The planning needed to reflect the priorities of the people occupying the premises.  There is no one-size-fits-all.  We needed to know what was important, not just desirable?  What was realistically doable?  How would we make the transition from where we have been to where we want to be?  Who needs to be involved in that process?  What resources are required?  All of these observations and questions apply to my own Parkinson’s disease planning.

3.     No matter how well-planned, a move rarely happens without difficulty.  Things aren’t quite ready on time.  Aspects of the transition go slower than anticipated.  Even our new offices have the inevitable blemishes and imperfections, especially after the movers have their way.  Moving is very hard work if done correctly.  And there will be some disappointments along the way.  The same is true for people with PD.  Despite our best efforts, satisfaction is never guaranteed.  But then what is the alternative?

Transition, moving, is often painful.  But the alternative is not worth considering, at least not for very long.  There may be times when inertia sets in and the challenges of change simply seem too much to deal with.  However, looking back on our old offices and comparing to what we have now confirms the correctness of the decision to move.  Similarly, looking back on those days when my Parkinson’s disease made for increasingly cramped quarters, the solution was obvious: get moving.  Cheerless, purposeless, sedentary living is unacceptable.  We must move!  The reward is well worth the risk.

So for 2013 my personal theme will be “MOVE!”  No more drifting with indifference.  No more frustrated “I don’t care” answers to demanding questions.  To move will be hard work, regularly threatened by failure.  I may flounder from time to time.  But I will “move” in the year ahead; move to a better place in terms of my physical, spiritual, mental, emotional, relational, and even professional, quality of living.  How?  I am not sure yet.  Step one is to decide that the comfortable but cramped “old place” no longer suits my changing needs.

Parkinson's Disease: An Unexpected Journey

It was pure fantasy.  Old, almost classical, make-believe worlds populated by strange characters with even stranger names.  And yet it was stuffed full to overflowing with significance, like a stocking hung by the fireplace on Christmas morning.

The story is about an unassuming fellow, who enjoys his books, a warm fire, good food and casual times with friends.  He had lived what we would call a simple, comfortable life in which, apart from a celebration now and then, each day was predictable.  But the unpredictable happened.  Shock, frustration, denial and confusion flooded into this unsuspecting character’s life, and in the process swept away his innocence and uncomplicated existence. 

“The Hobbit” was written by J.R.R. Tolkien 75 years ago.  It has taken Hollywood that long to do justice to its imaginary tale.  Its story is both simple and complex, suitable for children (except the very young or overprotected) and challenging for adults.  It portrays both evil and good, but recognizes the shadow of one in the other.  It shows the wizardly wisdom of Gandalf happily coexisting with simplistic naïveté of Bilbo Baggins, the hobbit.  Courage and camaraderie combine to thwart the seemingly insurmountable destructive powers of darkness and despair.  But it was its subtitle, “An Unexpected Journey”, which led me to conclude this story could be an allegory for life with Parkinson’s disease.

Seven years ago my life was pretty simple.  Staring into the future as far as I could see it all looked predictable, even comfortable.  Little did I know then that my life was about to be figuratively and literally shaken to its very core.  I was totally unprepared and left reeling from the January 19, 2006 diagnosis of Parkinson’s disease.  Life would never be the same.  The path ahead became unpredictable, leading through fields of false hope, black nights of fear and into narrow tracks in the unknown.  At times I found myself lost and alone in what seemed like a maze of caverns. 

But the truth is that, like Bilbo Baggins, I would never exchange the unexpected journey, with its challenges, friendships and adventure, for a predictable, comfortable, stay-at-home life.  No, despite the many setbacks, I would not give up the invaluable lessons I have learned along the way.  Like Gandalf said when questioned about allowing Bilbo Baggins to come along on such a dangerous journey to challenge such a formidable foe.  Some believe, he said, that “it is only great power that can hold evil in check, but that is not what I have found. I found it is the small everyday deeds of ordinary folk that keep the darkness at bay. Small acts of kindness and love. Why Bilbo Baggins? Perhaps because I am afraid, and he gives me courage.” 

Indeed, “it is the small everyday deeds of ordinary folk that keep the darkness at bay.  Small acts of kindness and love.”  The power of Parkinson’s disease in my life has been held in check by the small, everyday deeds of my friends and family.  Their reassuring words and simple acts of kindness and love give me courage to continue fighting. 

Whatever your views about Christmas (whether you are the “Happy Holiday” type or something else), there is something compelling about the story.  A baby, gifted to humanity by God yet born to ordinary peasant parents, he was destined to hold evil in check and keep the darkness at bay through sacrificial acts of kindness and love.  Why?  Perhaps because when we are afraid he gives us courage. 

Perhaps you’re a little like me as I anticipate with some trepidation the New Year, 2013.  If you are, maybe reciting words of Bilbo Baggins will give each of us courage as we embark upon the path ahead.  “I am going on an adventure” makes more sense to me than “Auld Lang Syne”.

                      

Does Pain Have Meaning?

The passenger jet slammed into the ground killing six people in the process.  But 96 survived due to miraculous flying, creative ingenuity, intense calm and, perhaps, an act of God.  Most credited the pilot of that flight for his pinpoint precision crash landing in an open field after an heroic display of aeronautical genius that was unlikely to be ever repeated.  But the real story recounted in “Flight”, a recent movie starring Denzel Washington, was about the pilot’s alcoholism, stubborn denial and reckless living.  Covering up the pain in his own life he caused inestimable suffering in the lives of those he cared about.  It was only because of the plane crash, and his own personal crash that followed, that he was able to come face-to-face with reality, with the meaning and importance of pain and the need to deal with it. 

The pain caused by Parkinson's is rarely discussed. It seems to be overshadowed by the tremor, stiffness and the other non-motor symptoms.  But the pain can be very real.  Painful cramping of leg or arm muscles, pain from distortion caused by dystonia, “frozen shoulder” pain and other results of muscular rigidity are but a few of the physical consequences of PD.  And then of course there is the psychological pain of misunderstanding, loneliness, rejection and the significant sense of loss of quality of life.  Pain comes in all shapes and sizes from acute to aching, chronic to intermittent, unbearable to inconvenient. 

Our society places a great deal of emphasis on alleviating pain.  In fact, a significant part of the pharmaceutical industry feeds our culture’s addiction to pain avoidance.  But does pain have importance and meaning? 

Victor Frankl was more than a psychologist, he was a prophet.  His basic theory, contrary to that of Freud, was that humanity has a primary need for purpose not pleasure.  He came to this conclusion in a Nazi concentration camp where prisoners suffered excruciating physical and psychological pain.  Many of his fellow prisoners gave up hope in the face of almost certain extermination at the hands of their captors.  But Frankl found that the simple antidote was to believe that life had meaning.  There is purpose in the pain, even if it leads to death.  He determined that if he were to die it would be as a martyr, not a victim.  He said, “In some ways suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice”. 

Pain, loss, suffering, they all bring us face-to-face with some of the deepest questions we can ask.  Our persistent pursuit of pleasure can easily blind us to reality.  If pain is the greatest teacher, and there can be no building of character without pain, then when we experience pain we must learn how to suffer without self-pity or “sedation”.  Here are some principles I am grappling with in my own confrontation with pain.

1.     Pain is not the enemy.  It simply forces us to come to grips with its cause.

2.     Listen to your pain.  It is trying to tell you something important.

3.     Search for meaning in the pain.  Don’t give up until you find it.

4.     Pain leaves a legacy.  Choose for it to be characterized with courage.

At the end of the movie, the pilot, played by Denzel Washington, finally recognized that he could not run away, continuing to deceive himself and others.  To ignore the painful lessons of life is to live a lie, which is not to live at all.

“Endure and persist; this pain will turn to good by and by.” 

 Ovid

Adapt, Adopt and Ad Lib

Life with Parkinson’s disease demands a great deal from its captives.  To avoid being sucked into the deep vortex of despair, swallowed by self-pity, banished from normalcy, we must be able to adapt, adopt and, when all else fails, ad lib. Let me explain.

5555.  There was no particular reason to choose that number, except perhaps that it was located in the middle of the screen of my iPhone, within easy reach of my slightly more reliable left thumb.  It also solved a developing difficulty.  My normal 4-number password required dexterity I could only rarely display.  I know, even healthy people have difficulty typing in their password correctly some of the time.  But multiply that times 10, along with the resulting exasperation and sense of ineptitude, and you have someone dealing with Parkinson’s disease.  Trying to unlock my iPhone one day in the presence of my friend, Carson, I explained my problem.  “I either hit the wrong button or, more typically, the right button too many times!”  This tremor-induced typo would result in the bold message, “Wrong Password.  Try again”, emblazoned across the top of the screen.  After the third or fourth time of being reminded how uncoordinated I had become, frustration, even anger, bubbled to the surface.  Stubbornly failing over and over again seemed unavoidable until my friend said, “Why don’t you make it same number.  That way you can hit it any number of times without getting a failure message flashing at you."  Painless adaptation.

It was 12:38 AM.  As usual, I had been able to fall asleep easily, but this time, as I had a few times before, I awoke after what amounted to a short power nap.  My right leg was throbbing and stiff, while my right arm seemed to compensate by shaking uncontrollably.  How do you ignore that disobedient duo, one cramped, the other flopping about like a flag on a brisk fall day. It was impossible to rest or to return to sleep.  I got up.  For a few minutes I walked aimlessly around the bedroom.  It seemed to provide some relief.  Fearing I would wake my wife, I found myself wandering around the house.  On one of my circuits I noticed the dusty treadmill in the corner of the TV room.  I remembered my wife suggesting I could use it to walk off my restless leg syndrome if it was too wet or cold walk outside.  In a few minutes my feet were hot from striding along the moving belt (I know, you are not supposed to go barefoot on a treadmill).  The cramping muscles began to loosen up and my shaking right hand calmed down considerably.  Within 20 minutes I was ready to head back to bed.  I adopted a new strategy.

Over the last few months I've learned to eat with my left hand. Ad lib. Improvisation.  Spontaneity.  Call it what you will, these words enlist our imagination, suspend our disbelief to allow us to reach for things we have never seen.  For most adults, creativity is a frightening exposure of the child within, the raw reality hidden deep in our souls.  People with Parkinson’s can easily feel chained down by their ever-expanding list of disabilities.  We sense the insidious and endlessly reminders of the disease as if it were an incessant tap, tap, tap, tap on the shoulder.  PD demands attention, insisting upon repetition; pills, therapy, rest then more pills.  But its boring refrain can be silenced from time to time.  When was the last time you tried something different?  Took a walk in the rain?  Drove home the long way?  Wrote a poem?  Asked a person about his or her tattoo?  Ordered something off the menu you had never eaten before?  Allowed yourself to make a frivolous, spontaneous decision?

Most of us are people of repetition, habits ingrained over the years.  Let’s face it, it works…for the time being.  We often suffer from narrowness of vision, shrinking horizons, and…well…boredom.  We could all use an attitude adjustment.  Let's be prepared to adapt, adopt and ad lib.