Sunday, May 27, 2012

Positively Parkinson's in the Pulpit

I stood behind the music stand/makeshift pulpit, gripping its tilted top tightly with both hands to minimize the tremor. Was the microphone turned on? I wasn't quite sure, but someone helpfully adjusted it and flipped the switch so that my voice could be heard in the big auditorium. It was then I had a good look around. It finally sunk in: I was speaking to people who, with a few exceptions, I had never met. What could I possibly say that would be meaningful in the context of a church service? While I have gone to church my whole life, the spot behind a pulpit was not a place I had often occupied. Carson, on the other hand, is, among other things, an ordained pastor, familiar with such places. Wellspring Foundation shares its campus with an international church that holds its services in English. Naturally enough, Carson was invited to speak, and suggested I might tell my story as part of his sermon. I agreed, having committed myself before making this round the world trip to speak at anytime and anywhere I was requested to do so, given my goal of encouraging others.

The night before I had attempted to make notes, but this proved problematic. I had no printer, therefore making notes on my computer would not be of much assistance (unless I carried it up to the platform only to spend far too long trying to hit the right keys and inevitably risk losing my place, and my composure). Having no alternative, I resorted to pencil and paper, painstakingly printing my speaking notes in very short form on one page. This was not a narrative, but rather point form notes to remind me of the key issues I wanted to cover. But just the thought of standing in front of a large audience of strangers increased the amperage on my tremor, making my notes look more like wobbly and indecipherable hieroglyphics than clear printing that would have to be referred to at a glance. And, as is often the case with me, additional thoughts came to mind, which were added to the already scribble-covered page.

Although I carried the paper with my notes in my badly shaking hands, I did not read it or refer to it much. Rather, I spoke directly from the heart, more than from memory. I wanted to be sincere, honest and transparent. For the most part, I just told my story, using the analogy of Parkinson's disease as a different language (in the context of Carson's sermon). It went something like this:

"On January 19, 2006, I was given a new language to speak. It was based upon the fact that on that day I had been diagnosed with Parkinson's disease. It was a language that came from having something chronically, incurably, degeneratively and debilitatingly wrong with the way my brain produced dopamine, a disease that would ultimately rob me of much of my body functioning. It was a language resulting from the frustration and pain, embarrassment and even humiliation I would experience. But I determined then that, regardless of the source of this language and its negative vocabulary, it could be transformed and used to encourage, bring perspective, enable understanding and give hope each day. "

As I shared with a woman after the service was over, "Pain is too important to waste". For it is through our pain, our difficulties, our failures and our weaknesses that we can understand the language of others. That is not to encourage self-pity, judge others or deprive others of their dignity. Rather, with gentleness and humility, we can share the burden of living that sometimes must be borne; just as we can celebrate the conquering of challenges. We each have a calling, a contribution to make, and cause to serve. We must handle adversity well, share our struggles with it, learn its language, and use it to hear, understand and encourage everyone you can as a result of it.
 Of course, there were many ways in which I could have improved my presentation, including making sure my notes were typewritten in large font that I could read without having to hold them in my shaky hands. But hearing the responses from others after was very affirming.

While I am no preacher, there is a story I need to tell, and a message I need to share (even if preached from the pulpit): Parkinson's disease, although it may be powerful, will only beat us if we let it. There is hope, not just in a cure, or for better medicines, but for every day. We can choose to encourage others to become and remain Positively Parkinson's.


  1. Bob, wish I could have been there! Thank you so much for being willing to share with Rwandans, many whom understand that their own pain "is too important to waste."

  2. Enjoy your blog very much, Bob. Thanks for your positive words!

  3. That is a Sunday sermon that church won't soon forget. Your paragraph 5 above is going into my quote file. So well put! Bob, you are encouraging those you are meeting on your journey but you are also encouraging those you left behind. Thanks for letting us hitch-hike on your "vandringsstig (as the Swedes say)."

  4. A very encouraging message Bob. It looks like I am headed down this journey too as I await confirmation of my GP's suspicions by a neurologist in July. Right now things are a bit overwhelming as I sort through just the things I need to be concerned about today and try to remain positive through all of and be thankful for what I am blessed with.

  5. Richard E.

    I can still remember that sense of overwhelming. In your case, who knows. It may be something different. But you're right, the attitude part does not change. None of us have more than a day at a time, and we need to live with a positive sense of purpose everyday.

    Let me know how it pans out for you in terms of the diagnosis.


  6. Paul;

    As I Understand It, the Whole Country Was to Be Divided into Sections, with each section having its own Bar Association. That division never took place and only one Bar Association exists at present. That is anticipated to change in the near future, but for now the name is a historic anomaly.