Monday, August 31, 2009

The View from the 25th Floor Ledge

Staring out the window of the 25th floor boardroom, I swallowed hard...and jumped.

Whether to disclose one's disabling disease can be a daunting decision. The meeting that I had arranged with Patrick at his office began easily enough with the typical 'catching up' and pleasantries, having known each other for more than 30 years. When our conversation turned to Eric, a colleague we both knew, Patrick said, "Too bad about his diagnosis of Parkinson's disease.". With that cue I decided to jump in and found myself announcing, rather casually, and more than a little awkwardly, that I shared the same diagnosis. As questions and details followed it felt like I had just launched myself through the window and was plummeting toward West Hastings Street at terminal velocity. An irrevocable step had just been taken and its consequences were entirely out of my control. I was free falling. Second thoughts began immediately.

"Why had I made the unplanned disclosure?" I began wondering repeatedly to myself. There had been no apparent need to say anything. The look that hung in Patrick's eyes for a few seconds left me doubting the wisdom of the thoughtless leap. Would I be branded forever in his mind. And what about others he told? I could hear it now, "Bob has Parkinson's.” Was I labeled for life? Would my professional ability, reputation and 30 years of building a practice now live in the shadow of that disease title. Was this committing professional suicide as surely as a leap from the nearby ledge?

Tumbling through my mind were a handful of reasons for the unsolicited confession, most not particularly convincing.

First, I don't believe I was seeking pity. That was not and never has been part of my make-up. Second, sometimes, when the symptoms are especially noticeable (brought on by heightened levels of anxiety because of court appearances or other stressors), I anticipate the quizzical looks and head off the mystery and embarrassment by informing those assembled that I have PD. It just seems easier that way. It explains the tremors rather than have them misinterpreted. But that was not the case in that office tower boardroom.

So what was it? After more soul-searching I believe there is only one answer: I wanted to be understood. Seems to me that we all want to be understood. Don't we? This is despite the fact that the words, "I understand" rarely seem to ring true in the ears of those who hear them. After all, who can really understand a disease with which they have no experience? Despite knowing this we are ready or even craving to share our vulnerability. This has proven an enigmatic but powerful motivation in my life (and, I expect, others). I think that we all know in our gut we cannot experience real relationship with others unless we are vulnerable to some extent.

For those of us trying to live positively with PD, there is always the potential for us to hide. First we camouflage our symptoms. And when we can no longer keep the embarrassing tremors, stiffness and other socially awkward signs under control we are tempted to retreat entirely. The potential for rejection seems to rise to an acute level as this debilitating disease progresses.

So to avoid the isolating effects of PD I believe we must be prepared to jump, to believe that others will a least try to understand and care. There will be some who step away out of fear, but if we hope to be accepted for who we are, PD and all, we must believe in our own acceptability to take the chance.

So I say jump. The risk will be worth it.

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