“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?”
Adopting an open attitude to Parkinson’s encourages openness and choice in non-sufferers. It leaves the door open for the exploration of Parkinson’s that the non-sufferer may choose to take. If the sufferer closes the door it takes away that choice and makes the Parkinson’s journey a lonely one for both sufferer and non-sufferer.
ReplyDeleteParkinson's is not my enemy, it is part of me (but not the whole of me); treating it as an enemy ends up treating myself as the enemy, which is self defeating.
Jonathan
dialoguewithdisability.blogspot.co.uk
Thanks for sharing this, Bob. It's an important reminder to me when I work with so many amazing PwPs about what you (and others) are really experiencing. I am sometimes so impressed with your output that lose site of what I often don't see.
ReplyDeleteI just stumbled across your bog and wanted to say thanks for shaaring this. I have PD and struggle with this question of "introduction" also. I work as a union rep, and act as lay counsel in arbitrations, and have decided that a brief, factual disclosure of my condition is the lesser of 2 evils. It is sometimes awkward, and may appear to be a bid for sympathy, but that is preferrable rather than the risk that they perceive my shaking, etc., as nervousness/fear.
ReplyDeleteCan't wait now to sit down and read the back entries in your blog!
Good article Bob. It is difficult to know "if" and "how" to introduce our companion "Parkinson's." But even though it can sometimes be awkward and the words never come out as I had planned, I find it such a relief afterwards to get it over with and to get on with business. You did such an excellent job of describing a situation that I can easily relate too.
ReplyDelete