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WAITING FOR GODOT

Good Place to Wait

Good Place to Wait

It occurs to me that … My life has become like that of Estragon’s and Vladimir’s, but instead of the elusive Godot, I am stuck on the side track waiting for a cure for PD.  It is not as if I have no patience, as over 19 years since my diagnosis in September of 1994, patience is one of the qualities of character that I have found to be most pronounced in my personality.  I am not a neurologist, nor a biochemist, nor a clinician, nor a wealthy philanthropist, nor any one of a myriad group of professionals and/or world shakers charged with figuring this stuff out, so it is not as if I can jump into the middle of the fray and start actually working toward a cure. So, unless I can find a medical school willing to admit a candidate who is 61 years old with a liberal arts background and a law degree, patience is what I must cultivate while sitting on the sidelines.  And to be perfectly clear, the patience I am talking about is with myself.  As to the rest of you who are some of the above listed professionals and world shakers,

GET OFF YOUR BUTTS AND GET THIS THING FIGURED OUT!

19 years.  That’s 4, 5 year plans with the cure being right around the corner. I have at least figured out why the concept of the  5 year plan, forged in the heart of communism in the old Soviet Union, has such a talismantic effect on human hope and expectation.  1 year is too short.  For someone to be 1 year out on any predicted result they would have to be able to show more than a shoeshine and a smile:  they would have to show work in progress; clinical plans on the drawing board; preliminary results that held hope and promise.  10 years on the other hand is just too long.  The group that you are selling hope to doesn’t expect to live that long, or at least they don’t expect, after 10 years, to be in that magic circle of those who will benefit in any substantial sense.  So, 5 years.  Just the right window to hold people transfixed in front of whatever screen is broadcasting the current “Show of Hope” tour.

Because, let’s face it, the West hasn’t done too well since we whipped polio and corralled most childhood diseases.  We’ve managed to keep some scourges isolated and outside the borders of the US, such as malaria, and, until recently, TB.  We have done somewhat well in the area of ameliorative medicine, particularly among those with PD, who are grateful beyond measure for the effects of levodopa and DBS.   But when it comes to a CURE for PD, or ALS, or MS, or Alzheimer’s, or Lewy Body Dementia, or MSA, or even the Big One, Cancer, we just don’t seem to be doing so well.

What we do well is create interlocking networks of care givers, family, loved ones and support groups to try to cushion the blow for the newly diagnosed.  We share stories of stem cell cures in China, and now in Florida.  We try to carry hope in a leaky bucket.  I fall back on the phrase I developed for our local PD group, the Parkinson Association of Northern California:  ”Until There is a Cure —  Hope and Healing, Everyday”.

There are some days when that phrase rings a clear sonorous note on my bell.  There are others when it clunks like a cowbell.  There are others when it doesn’t ring it at all.

There was a time in my life when I thought that what I was working toward was a joyful and happy end to a life well spent.  But, in all honesty, you can spend 80 or 90 years of life happily, and spend the last day in tearful depression, or hurt, or anger, or fear, effectively wiping out the previous time all together.  None of us get to be the author of our feelings for those last moments, we will simply be the actor on the stage when our time arrives.

So, I have to come up with another mantra to replace the “joyful and happy ending”, and it is one that has been rolling around in my head for some time now.  If you cannot guarantee the script that will be your last moments, then, quite simply,

The journey has to be the joy.

[Now, to the rest of you who are looking for a cure, GET BACK TO WORK!!!]

2 Comments on "WAITING FOR GODOT"

  1. Elliott Lee says:

    George –

    Man, exactly the same could be said for any of the uncountable EXTERNAL illnesses of which we see the symptoms every day, which frustrate us beyond measure, and whose cure seems to be ever “another seven miles” ( or 5 years).

    This is only further corroboration of your conclusion “the Journey Has to Be the Joy”!

    By the bye, the part of the journey we have shared has certainly been a joy for me, old friend!

    Elliott

    • unexep5 says:

      Feeling is mutual Elliott. Have got to say that our trip to Marin and the coastal areas of Cali remind me of why I enjoy being alive. Makes the whole journey worth it, almost!

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