Order in Court – Parkinson's Disease on Trial

“Order in Court!”, the court clerk announced as the judge entered the courtroom.  Everyone rose from their seats, standing respectfully while the robed Madam Justice Daniels took her seat in the large oak and red leather chair behind the dais called the “bench”.  Legal counsel nodded at her deferentially, a poor excuse for the waist deep bow of yesteryear.  The somewhat respectful motion was returned by Judge Daniels.  Lawyers took their place at the long counsel table facing her ladyship.  The oak table was divided in the middle by a small speaking podium which was to become the focal point of the next 3 days’ argument.  Taking their cues from counsel, the interested parties in the gallery took their seats on the padded pew-like benches.  These seats were behind a sturdy wooden handrail, the “bar” that historically was meant to separate the lawyers from the public just as the “bench” separated the judge from the lawyers.  No one spoke except the court clerk who announced the case to be heard, “In the matter of… My Lady”.  There was no smile on any face.  Everyone in the courtroom knew this was serious business.  The war of words was to begin.  In the end there would be a winner and a loser, a victor and a vanquished. 

I stood to introduce myself to Judge Daniels, as is the custom at the beginning of trials, despite the fact that I had known her for many years before she became a judge.  As I did, I knew that I was facing two battles.  In one, my opposition was my “learned friend”, as legal counsel are prone to politely (usually) refer to each other in a courtroom.  But the more imposing opponent was that which caused my hands and legs to shake uncontrollably: Parkinson’s disease.  Its presence was so obvious that it needed no introduction.  However, feeling less than the confident advocate I wanted to portray, I felt compelled to explain or excuse its influence over me, as if to fail to do so in this austere and controlled environment would be disrespectful.  As the explanatory words tumbled awkwardly out of my mouth I immediately regretted my decision.  As I listened to the language I used it somehow sounded to me more like a plea for sympathy than a factual clarification.  I felt it sounded weak; an excuse for anticipated lackluster performance.  

That’s the way it is with Parkinson’s disease.  I always seem to struggle with how to introduce this rather intrusive character who accompanies me everywhere.  At times, it seems safe to ignore his presence, pretend he doesn’t exist.  In some social circles it can become a silent pact of mutual denial.  “Don’t ask.  Don’t tell.”  Somehow, it reminds me of the Hans Christian Andersen’s fairytale, “The Emperor’s New Clothes”, a sad story about dishonesty, self-delusion and prideful hypocrisy.

At other times, I have been tempted to use the “PD Card”.  It is a membership card that is intended to make available special privileges reserved for the disabled, for whom such privileges are necessary as opposed optional.  It is like wearing a handicap parking sign around your neck just to ensure you get a spot closest to the door.  I expect that I may need that privilege card someday, but at present I can walk a few extra steps to the door and rarely need special treatment (other than a little patience when I am getting the necessary change out of my pocket or quickly trying to fill in a form).

 

And between the two alternatives lies the vast middle ground marked out by everything from understatement to complaining, from making excuses to refusing a helping hand.  Whether in a courtroom or on the street corner greeting a fellow lawyer or old friend, it is in this middle ground that I struggle to find the right words.  I suspect other people with Parkinson’s face a similar dilemma.  Trying to choose my words carefully and find a convenient place to introduce my companion, PD, into the discussion is often, to say the least, awkward.  How do I raise the subject, and at least satisfy the other party’s obvious curiosity, without the Parkinson’s proclamation banishing all other topics of discussion?  How do I avoid becoming the subject of someone’s pity while honestly communicating the reality that I have an incurable, chronic and degenerative disease?  This is my dilemma.  

The way I process this problem is to ask myself several questions.  First, is an explanation necessary or appropriate?  Not everyone I meet needs to know I have Parkinson’s.  But a short description may be helpful even to a store clerk whom I will never meet again.  Often, a simple admission, a label without more, is enough.  Most people are more self-conscious about asking about what’s wrong with me than I am about telling him or her.  But the benchmark question that I find most helpful to ask myself is, “What would I want to be told if I were in the other person’s shoes?”

After 3 days in court, my unrelenting tremors seemed less obtrusive.  Other than struggling a time or two with turning the pages of my written argument, the shaking had minimal effect on my performance.  And while Madam Justice Daniels probably didn’t realize it when she delivered her reasons for judgment late that Friday afternoon, I experienced a double win; a resounding victory over opposing counsel, as well as my mortal enemy, Parkinson’s disease.

Burning up on Reentry – Parkinson’s Style

10 years ago, February 1, 2003, seven lives were lost as the Space Shuttle Columbia reentered the Earth’s atmosphere.  Popular misinformation would have us believe that super heating of a returning space capsule is caused by friction due to its supersonic speed.  In fact, most of the heat (24,000°F) is caused by the supersonic (24 times the speed of sound) object “snowplowing” and compressing the atmosphere.  The compressed gases in turn cause radiant heat, which if not dissipated by “heat shields” creates a high-tech incinerator. 

For people with Parkinson’s, or at least for me, it always feels like there is a significant potential to “burn up on reentry” when returning to work after a restful vacation.  Don’t get me wrong, I love being a lawyer, especially being able to practice with such a great team of professionals.  But having PD creates more than just physical challenges for me.  The experts suggest that people with Parkinson’s should avoid high stress activity and engage in a consistent, well-planned exercise program.  Obviously, I fail at both.  Stress and the consequent adrenaline rush are hallmarks of the legal profession, or at least my practice.  And exercise…well… let’s just say it’s more and more difficult to make time to battle the daily fatigue to even fit in a walk around the block.

During the final few days of my most recent vacation, I found myself increasingly anxious, irritable and generally out of sorts when anticipating the return to work.  In years gone by I would have been eager to get back into the fray after a good vacation.  But now PD seems to have damaged the “heat shields”.  My lifelong resistance to stress seems to have been compromised.

In thinking about this experience of reentry anxiety, I found myself searching for ways to grapple with it.  Lessons from Space Shuttle Columbia disaster provided some answers. 

First, like the Columbia catastrophe, it was during the launch when it started to go wrong.  It was a relatively small piece of insulation that came loose and ultimately damaged the craft’s ability to return home safely.  The analogy is obvious.  The messier I leave my desk and the more unprepared I am for departure on vacation, the greater potential for disasters to await me on my return.  As anxious as I am to get away, I need to think about the reentry before I “launch”.

Second, after I have left on vacation, I need to know about serious problems that develop.  In the Columbia situation, the “ground crew” was aware of the damage caused by the insulation debris, just not its severity.  For a variety of reasons, all well-intentioned, steps were not taken to address the potential consequences for reentry.  This is where my capable team is superb, recognizing that even seemingly little problems can become massive issues by the time my return unless dealt with.  

Third, it is better to address problems identified by the “ground crew” well in advance of reentry.  I’m certain that the Columbia support team at Kennedy Space Center did not want to alarm the crew of the space shuttle.  But there were some things that might have been done in space to address the reentry threat, such as the spacewalk to repair the panel damage.  I find I am more comfortable anticipating the known problems to be encountered on reentry rather than discovering them like some brightly colored surprise package on my desk. 

Lastly, even before the Columbia catastrophe, the space shuttles had developed means of reducing the danger of” burning up on reentry” by carefully choosing the trajectory they used in reentering the atmosphere.  Rather than a ballistic approach (something like a high diver hitting the water), the space shuttles uses controlled reentry by skipping along or surfing the upper atmosphere, thereby slowing down and reducing the super heating effect.  Returning from vacation isn’t just a matter of exchanging a pair of swim trunks for a suit and tie.  For me, planning a slower, “controlled reentry” is far safer and saner.  

Parkinson’s disease may continue to use anxiety, loss of confidence and insomnia and try to spoil my last few days of vacation.  But I’m learning ways to fight back and avoid” burning up on reentry”.

The Persistent Professor

Even observed closely, his smile left me guessing.  Neither cruel nor kind, or perhaps both, it was like that of a monarch who could punish or bless depending on his mood.  It remained unchanging as he climbed the stairs and strode effortlessly across the dais to stand in his familiar place high above the students.  His gaze, which from his vantage point took in the whole class, became a stare.  It was as if he knew that I was unprepared for the day’s lesson.  Foolishly, I ignored his silent warning.  I thought I knew the lesson plan and could forgo troublesome preparation.  Disrespectful, even insolent, I had concluded that the professor was intent on repeating a prior day’s lecture.  As he droned on the room became warmer.  Motivated by drowsiness and boredom, I let my eyes close, believing the professor would not notice. 

I awoke from my brief nap with no sense of foreboding.  Checking my watch I concluded that I had slept some 20 minutes.  While to others it might have seemed that the teacher knew I had nodded off and was glaring at me, I barely took notice.  In my self-imposed ignorance I had slept through a pop quiz.  Satisfied that I had spent enough time in the classroom for one day, I excused myself to go searching for other distractions.  It would take several hours before I experienced the sting of professorial punishment for having slept through my lesson. 

Not me!!!

I awoke this morning after a poor night’s sleep feeling a painful prickly sensation all over my chest.  Lifting my night shirt in front of the bathroom mirror my skin shone brilliant red with sunburn, except for the white creases that emphasized the weight I had recently gained around my girth. 

The pain of sunburn seems to be an insistent teacher, despite the fact that I am a poor pupil.  Perhaps it is the result of having lived so many years under the often gray skies of the lower mainland of British Columbia where the sun’s rays are welcome, and rain is perceived as the greater peril.  But you would think that at 60 years of age the dangers of exposing pale white skin to securing sunshine would be easily recognized.  Like a slow learner I seem destined to suffer the sunburn consequence of repeated failure. 

Some things we only learned through pain.  The loss of a loved one teaches us the value of relationships.  The injury resulting from a motor vehicle accident teaches us caution.  Throbbing muscles from exercise teaches that gaining weight is a lot easier than losing it for most of us.  Tennis elbow creates a painful awareness of lack of preparedness.  Pain is a tenacious tutor.

For those of us with Parkinson’s disease, pain is a milepost of progress (if “progress” is what you can call an increase in the number and severity of symptoms).  From toes that curl and crunch into strange contortions (dystonia) to relentlessly stiff muscles and joints that cry out for relief, pain is an unpleasant partner.  Yet, it is my teacher.  It insists that I exercise, rest, stretch and take care of myself or suffer the consequences of more pain until I do.

Most of us would prefer to avoid pain at all costs.  We do so at our peril, for lessons not learned today will be repeated tomorrow one way or another.  For pain is our persistent professor.