Suddenly Vulnerable

Perfectly timed. It was late Saturday evening when we arrived home after a restful vacation. I was a little anxious, having missed taking my 8 PM Sinemet tablet (Parkinson’s medication). Turning on the tap to get a glass of water, there was a sputtering sound and then… nothing. Not even a burp or a bubble. Nothing. If the water supply system was like a battery, ours was dead.  I checked everything (which only took me a few minutes given that I had no clue what “everything” was). We had no water. I felt a sudden sense of vulnerability as I began running down a mental list of things you cannot do without water… make coffee, wash clothes, brush your teeth, take your pills, flush toilets and, on the top of my mind just then, shower.

I called the “water people” who had installed the pump in our well that sucked the sparkling clean and cold liquid up from the aquifer some 179 feet below the surface.  As I listened to the voicemail message, I remembered that this was Saturday night, a conclusion that was quickly made more complicated by the fact that it was a long weekend (Monday was Queen Victoria Day in Canada and, despite the fact that she died in 1901 at the ripe old age of 81, Canadians hardly seem embarrassed when they use her birthday as an excuse for a holiday). Any hopes of a quick fix in response to my call… I was hoping for something like “Flick that red switch twice with one eye closed”… were quickly dashed by the “water people” out of office recording. “Please be advised that weekend or holiday callouts will be charged at a four-hour minimum rate of $105 per hour per person, with the hourly rate increasing to time and a half after the first four hours”. I left a message for the “water people” to give me a call Sunday morning (emphasizing that I did not want anyone being “called out” without further discussion).

Sure enough, Sunday morning Dave, one of the “water people”, called my cellular. When he heard the symptoms I described he quickly diagnosed the problem as a “pump failure”. Apparently, the 22 years that had transpired since the original installation of the pump was substantially longer than the pump’s life expectancy.  Who knew? Dave went on to warn me that a crane truck would be required to pull the pump up the steel straw-like well casing so that it could be replaced. This was no minor house call and, given the long weekend, it was priced accordingly. I felt suddenly helpless, having taken for granted the ready access to water at the turn of a tap.

Now, drawing water from the swimming pool solved the problem of flushing toilets. A bucket full dumped into the toilet was all that was needed. But having a shower (hot, or at least tepid) required more than innovation. It necessitated a friend, and not just any friend. This had to be someone who might be home on the long weekend just waiting for a call from a desperate, dirty and, likely, odoriferous friend in desperate need of a shower. It occurred to me that the deprivation of one modern convenience I often take for granted left me dependent on others.

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The metaphor dawned on me as I swallowed my Parkinson’s medicine, helped along by a warm soft drink from the pantry. My neurological full functioning, like the running water in my home, will no longer taken for granted. In fact, the analogy of my crippled water system, left me wondering; perhaps someday a person with Parkinson’s will be able to have their neurological “pump” replaced so that it will again function correctly. In the meantime, let’s not take anything for granted. And when we run out of independent options, we need to remember that we have each other to help us through.

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The World Parkinson Congress is held every three years. This year, 2016, it will be held in Portland, Oregon, USA. I will be there, just as I was for the 2010 (Glasgow) and 2013 (Montréal) events. It is an extraordinary opportunity I would not want to miss. It offers invaluable understanding, innovative ideas, incredible camaraderie and inestimably important; hope. While it is an intense three days, there’s nothing quite like it for healthcare practitioners, scientists, resource people and people with Parkinson’s. It is a time when the disease actually draws people together from all over the world for a very worthwhile purpose: to better the lot of those who are challenged by this debilitating, degenerative and, supposedly, incurable neurological disorder.

This year also represents the 10^th anniversary of my Parkinson’s diagnosis. I am now a decade into this strange “season” of living. Time for a look back at the most meaningful lessons I have learned (limiting the number to the top five).

Perhaps the most profound thing I have learned over the past 10 years has been to recognize the truth found in the words of the song, “Turn, Turn, Turn”, written (actually borrowed from the Book of Ecclesiastes in the Old Testament) by Pete Seeger, this song was first performed when I was 10 years old, and was subsequently performed by dozens of major artists and groups. You may remember the opening line to this timeless and classic hit: “To everything there is a season, and a time to every purpose under the heaven”. It reminds me that the one constancy of life is change. It is unpredictable. Life has its seasons. And, of course, the onset and progression of PD is neither predictable nor controllable. Change is inevitable as the seasons, and we must adapt with each change.

That leads to my second revelation. While one cannot control whether one gets PD, each of us who do have control over how we respond to that diagnosis. Whatever our circumstances, and I don’t pretend that they are exactly the same for any of us, we each have to choose what we do in response to the diagnosis received. The array of choices can be overwhelming. But even to refuse or fail to make the decision is a choice. Choose we must.

The third conclusion I have reached in my decade with this rather insistent partner called Parkinson’s is that the most important thing I choose is my attitude. PD is more than the sum total of its symptoms and causes. It is a battle for control over one’s attitude. We can remain positive, solution-oriented, determined and purpose-driven. Or you can choose negativity, self-interest, withdrawal and purposelessness. This choice is left up to you and me, to be exercised every day, perhaps multiple times each day. It is likely our most important legacy to those who watch our journey.

The fourth of my top five lessons learned is something I tried to teach my children. “Falling is part of learning”, I often assured them whether they were trying to learn to ski, ride a bicycle or achieve some success or goal. It is not how many times we fall, or fail, it is how many times we get back up and try again. PD is challenging, there can be no doubt. It may literally mean falling, shaking, or not moving at all. But whatever it is, it will require discipline and perseverance in order to deny PD the victory.

The fifth, and final (at least for this blog entry), lesson that I have learned in the past 10 years is the danger of facing this ever-demanding opponent alone. I understand the tendency to withdraw from others when you feel conspicuous, clumsy, embarrassed and intimidated due to tremors or other uncontrollable physical symptoms, but accepting oneself, PD symptoms at all, is a critical need for all of us. This means we have to be ready to talk about it, even if we are not inclined to discuss the dreaded disease. Most people will not bring it up unless we create the environment or opportunity to do so. The more people understand, the better it is for all of us. The idea of “independence” for any of us, whether we have PD are not, is often illusory. We are all part of a community, and the best way to live in community is to recognize our interdependence, our need for each of us to understand that we are better together

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These five lessons are not about surviving PD, but rather thriving despite, or maybe because, of the disease. Let’s chat further at WPC 2016, September 20-23, 2016. There are lots of lessons to be learned there. You won’t regret making it a priority.