Just Leave Me Alone!

When life’s circumstances seem to trap you, squeezing you in their grip, applying increasing pressure and demanding a response to questions that are bombarding your universe like incoming meteors, everything gets messy.

We feel out of control (as if we ever were). Death, disease, disability, discouragement, depression, disorientation or disaster - and these are just the things that start with the D - threaten our daily existence. We find ourselves scrambling for cover, digging a foxhole, curling up in a ball, or hiding our eyes to shut out the fear, the pain, the inevitability.

“Just leave me alone!”, we shout to no one and nothing in particular. Can’t we just make it all go away? Can’t we just fix it?

The answer is “No”. We might be able to deny the situations we face for a while. Difficulties might be delayed somewhat. But ultimately, we must deal with the tough stuff, face our fears, fight back, accept suffering and sacrifice as necessary, or at least inescapable, parts of living.

Lately, too many friends are being confronted by the harshest of realities; difficulties from divorce to dying, and a veritable invasion of other sad events. Sometimes, like missiles, these struggles come in clusters, as if the destruction caused by one is not enough.

When it all seems too much, too hard, where do we turn? The Greek philosopher Epictetus said, "We cannot choose our external circumstances, but we can always choose how we respond to them".  But let me add, doing life alone, especially in the crucible when heat and pressure so easily overwhelm, is not the answer.

We are designed for interdependence, relationship, community. We cannot hope to prevail on our own. We need to share the burdens, the pain and the tragedy, especially when they don’t make sense. We need the freedom to ask” Why”, while knowing that there is no obvious answer. We need caring listeners to be our mirror. We need allies to help us fight back, maintain the hope regardless of the odds. But in the process we must risk being misunderstood, rejected, and disappointed by others. After all, we are far from perfect ourselves.

P.S.  While drafting this post I felt alone. I had planned to be attending the World Parkinson's Congress in Japan next week.  I was looking forward to being there mostly to spend time together with friends from around the world who are part of Parkinson's disease community. Unfortunately, I will not be there.  Maybe 2022?  In the meantime, let's stand together. As Michael J Fox said,“We may each have our own individual Parkinson’s, but we all share one thing in common. Hope”

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.