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”

Monastic Musings on Parkinson's

The meal was eaten in silence. That is, except for the reader. He was perched above us in a small balcony protruding from the wall about 8 feet above the diners. Thirty or so members of the Benedictine community sat silently on simple wooden chairs on the outside of the U-shaped table arrangement, eating and listening to an echoing essay about the Roman Catholic church in Africa. Supper was comprised of bread, salad and a rice dish, with applesauce for dessert. Not being a social gathering, it was over in about 25 minutes. The food was plain, but tasty, and certainly adequate, much like the room in which the meals were eaten. It was 25 feet high at its steeple peak, covered with wood paneling rising from colored concrete floors to windows through which beamed the unusually warm January sunrays. A vibrant, iconoclastic style mural of Christ and his disciples filled one end of the hall, evidencing a reverent and loving dedication of thousands of hours of painstaking attention to detail. I have always been honored and humbled to be eating with these men who have voluntarily surrendered many of what we would call modern life’s benefits. Father Placidus, Father Mark, Brother Luke and Father Abbot John welcome me despite the fact that I am not a Catholic. This is a community that lives St. Benedict's vow of hospitality.

This setting, Westminster Abbey in Mission, British Columbia, has become a place of refuge and peace for me for more than 25 years. I come here to a world that has no rush hour, or rush at all, to step off the treadmill for a day or 2, or more. The guest quarters provide the rudimentary comforts; a room with a bed, a small desk, chair and a lamp, and bathroom, but no more. It is here, in relative silence, beauty and solitude, that I come to think, read, write, plan and pray at least a couple times a year. I have never found a place that is better for these contemplative activities.

It took me a while, and still does each time I come here, to get used to living without the constant barrage of noise, distraction, people and obligations. I recognize that this may not be everyone's idea of a good time. But this is the place where I can unbundle the many applications that I have concurrently running on the hard drive of my life. It is a time of retreat. A time to refresh, reboot or defrag, if you will, for the onslaught of spam, viruses and phishing to which I will return.

Perhaps, most significantly for me, this brief repose gives opportunity to consider the important, instead of just the urgent, matters of living. Since being diagnosed with Parkinson's 4 years ago this month, I find I need and value these times more. Perhaps it is the fatigue or vulnerability caused by the disease. But whatever it is, these times alone at the Abbey provide a much-needed rest stop in the race I run.

I have found that, while the 2 activities may seem similar, there is a significant distinction between isolation and solitude. As people with Parkinson's it is often easier for us to isolate ourselves rather than face questioning looks and the seemingly inevitable embarrassment of social interaction. But solitude is not hiding. Rather, it is meant to prepare us for engagement with life as fully as it can be lived. But without time for contemplation, how can we determine what it means to live fully?

I wonder why we are so often afraid to be alone with ourselves in silence?

The Lone Ranger Did Not Have Parkinson's

Vietnamese food is one of my favourites. I am especially fond of coconut curry chicken. But a mutual love of the cuisine was not the reason "Big Jerry" (he prefers that over Big Mike) and I were meeting. We are both lawyers with Parkinson's disease. In fact, we found ourselves laughing about how much we had in common. He was diagnosed younger (he is more than 10 years my junior), and after I was told I was positively Parkinson's. We don't have the same types of law practices. But we journey along together on this challenging obstacle course called life with PD. Somehow sharing the fears and the funny stuff makes the whole thing a little more manageable. Even our wives benefit from this friendship as the four of us get together for a nice meal every few months.

For some the bigger support group serves the purpose. For me, at least at this point in time, a few friends of the PD persuasion, like Jerry and Patrick, are a great comfort.

Of course there can be discomforting risks of meeting with other PD people. I remember my first encounter with a fellow PD person. The first thing she said as she struggled into the coffee shop, sat down and focused on my face was, "Oh, I see you can still smile.". She then launched into a litany of symptoms that she prophesied would soon befall me. It was like being pelted by punches, and I inwardly groaned at the images of me in some future state of pathetic incapacity.

Life with PD can be a lonely affair. Sometimes we feel anything but socially acceptable. People may avoid us like we are carriers of the H1N1 flu pandemic. But for me it is critical to silence those inner antisocial hecklers, like Waldorf and Statler, the Muppet characters spewing negative comments from the balcony.
To listen to them is to let the PD win, defining you as not acceptable in social environments. To be accepted by others we must first accept ourselves. And learning this with the encouragement of PD friends has been enormously encouraging to me.

The Lone Ranger did not have PD. But even so, he had Tonto to stand by him and encourage him. He wasn't the "Lone" Ranger at all.