Tom Finneran: Cynics On Ice…

Friday, August 22, 2014

Tom Finneran, GoLocalWorcester MINDSETTER™

Invoke the mercy rule. It’s officially a butt whuppin’. And in this contest, the good guys have won.

I speak of the “ice-bucket challenge”, the feel-good/do-good crusade that has swept the nation and brought millions of dollars of donations to ALS research. Some early cynics derided the effort, suggesting that it was a silly gimmick, a narcissistic hey-look-at-me moment, with no appreciable effect on disease awareness or donations. Were they ever wrong! WRONG. WRONG. WRONG.

Let’s begin at the beginning, about the disease itself. It’s a relentless remorseless absolute killer, a death sentence with no pardon and no escape. ALS, or Lou Gehrig’s disease follows a vicious path of slow steady killing of bodily function and bodily control. Amyotrophic-lateral-sclerosis is the official name. Lou Gehrig’s disease is the street name. Gehrig, as baseball fans know, was the superb first baseman for the New York Yankees teams of the 1920s and 1930s. He was a gifted physical specimen of athleticism, strength, and stamina who began wasting away at the early age of thirty five. The “mystery disease” which was attacking his body was particularly frightening because of his obvious physical gifts and his relative youth. This was not just a disease of the aged and infirm. All people, young and old, men and women, black and white and brown, were potential victims of this scourge. And once in its clutches, no one has ever escaped. At least with cancer, particularly with early diagnoses, there are a lot more than a few survivors. In fact there are many many thousands. Not so with ALS.

Everyone knows a cancer patient. Every family has been touched in some way by that dread disease and by now almost everyone is familiar with the protocols of chemo and radiation treatments. The commonality of cancer makes it an obvious target for fundraising research dollars. Think of the Jimmy Fund, the Pan-Mass Challenge, and the Avon Walk for Breast Cancer. These and other enterprises and events are beloved community efforts and assets. ALS, because of its comparative rarity, does not enjoy such broad-based recognition and support.

Notwithstanding that relative rarity, my wife and I know several sufferers and victims, including family members, friends, classmates, and colleagues. The late Governor Paul Cellucci was a sufferer and a victim. When spoken as a diagnosis, the letters ALS are the most ominous letters in the alphabet. They spell inexorable death. And thus the fun of the “ice-bucket challenges” sweeping the nation. It’s a bit counter-intuitive but the fun of family and friends throwing challenges to each other has raised more money for and more awareness of ALS research than its advocates have ever dreamed. Who knows, it might become an annual phenomenon, an “August event”, a part of family picnics and beach days every single year.

So back to the cynics, the ever-present wise guys in our midst who are so quickly dismissive of humanity’s better instincts and angels. The best definition I’ve ever seen of a cynic is “someone who knows the price of everything and the value of nothing”. How true that definition. Unfortunately, cynics abound in our society and I cannot deny that we all give them ample ammunition with which to play. After all, consider the many imperfections of man… But, that said, daily we see evidence of our better angels. Consider the impulse to help a person in need, to feed the hungry, to heal the sick, or to visit the lonely. Consider the impulse to hug and to protect a frightened child. Those are the impulses of kindness and compassion. Those are the impulses of humanity. And those are the impulses which gave birth to the ALS ice-bucket challenges. Those are also the impulses which make plain the truth that it is better to give than to receive. Thus lives the impulse to “do something” about the scourge of ALS.

Few of us have the knowledge and skill to understand the science and conduct the research necessary for finding a cure. But all of us have friends and all of us can donate to help the cause. So give voice to your better angels. Put your most cynical friends on notice, throw them a challenge to rise to the occasion, and then put them on ice!

To donate to local ALS research centers, call the ALS Therapy Development Institute in Cambridge at 617-441-7200 or the UMass ALS Cellucci Fund at 508-856-5520.