“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?”