Saturday, May 8, 2010

Black Knights, SerenAides, and Lou Gehrig’s Disease

Life and the media are filled with examples of people who have beaten the odds and overcome seemingly insurmountable obstacles through the sheer force of will. One of the more dramatic images that come to my mind is actually a fictional and quite humorous one with which I often identify. I am referring to a scene from the 1975 comedy “Monty Python and the Holy Grail”, which many of you are probably too young to remember. In this scene, the Black Knight is defeated by King Arthur while trying to prevent Arthur from crossing the bridge that the knight has sworn to guard. Each time Arthur relieves the knight of one of his appendages, the knight dismisses Arthur’s success with some belittling comment. At one point during the fight, with blood gushing in comic exaggeration from his armless shoulder, like water from a fire hydrant, the knight shouts, “Ah, it’s only a flesh wound!” Finally, reduced to an armless and legless torso, the defiant knight screams after the departing Arthur, “Come back here, you lily-livered coward! I’ll bite your knee caps off!” Despite the goriness of the scene, it is hard not to chuckle at the absurdity. Yet I always find myself admiring the knight’s tenacity in handling adversity. Each time I have lost a little bit more of my mobility, I have found myself reflecting on the knight and finding inspiration in his refusal to quit.

Last September, a more aggressive acupuncture treatment resulted in the loss of most of my remaining arm and hand strength. Operating my wheelchair and my computer mouse, the two remaining activities in my life that provide any physical independence, had become nearly impossible. For a short while, I felt crushed and defeated. I had arrived at another major choice point. Giving in to the depressing emotions would surely have led to more physical and emotional degeneration. That choice was unacceptable. Instead I chose to remain focused in the moment and not project my set back into a continuing pattern. I kept telling myself the weakness is now but, not necessarily tomorrow.

But I needed inspiration to regain my internal strength. Among the sources from which it emerged, there are two that stand out in my memory. One was the Black Knight. While it is difficult to bite the kneecaps off of a disease, remembering his tenacity helped to pull me through. The other source was SerenAide. For six years now, the people who participate in this wonderful evening of music have been an amazing source of emotional, physical and financial support to me and my family, and in the fight to defeat Lou Gehrig’s disease. I couldn’t bear the thought of letting them down. So I chose to fight my way back.

As a result, I have regained about 90% of the strength that I had lost. Last month I observed my 10th anniversary of living with ALS, an achievement marked by fewer than 5% of those diagnosed with this disease. It is difficult to find the words to adequately express my degree of gratitude to the people of SerenAide and to the Black Knight for the choices they help me to make.

2 comments:

  1. Here are a few youtube videos from this year's Serenaide:

    http://www.youtube.com/watch?v=8cXqKZAyPLE
    http://www.youtube.com/watch?v=botWVnQTWDE
    http://www.youtube.com/watch?v=ozZi55dHYdc

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  2. AMYOTROPHIC LATERAL SCLEROSIS (ALS)
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    Julianne Regan

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