LETTING IT SOAK IN: REFLECTIONS ON THE

ALS ASSOCIATION ICE BUCKET CHALLENGE

Years from now, when we look back on July and August of 2014, we’ll remember the phenomenon known as the ALS Association Ice Bucket Challenge. It was the most positive and lively wave to streak across the US in quite some time. Americans came together, ignoring the great political divide, in favor of participating for the greater good. People of all professions, backgrounds and ages drenched themselves with ice water, making a splash to raise dollars and awareness for a previously underfunded and obscure fatal disease. This was social media’s finest hour. This was also personal.

Amyotrophic Lateral Sclerosis claimed the life of my aunt six years ago. As many now know, this fatal illness destroys nerve cells in the brain, brain stem and spinal cord. My aunt’s sharp mind was left intact while the disease rapidly destroyed her body. How horrific for her, as her muscles deteriorated, while her family stood by, helpless, watching the paralysis spread, impotent to do anything to stop it or slow it down.

I visited my aunt, a teacher (and a teacher of the year) during her courageous battle. Before seeing her, my cousins David and his wife, Wendy, met me for lunch. They wanted to prepare me for how rapidly things had changed. Only five months prior to her diagnosis, my aunt and uncle visited us, along with relatives from all sides of our family, to share a lifecycle celebration. My aunt seemed fine, and even participated in a Pilates class. Six weeks later, there was another celebration. This time, we were the visitors and, as was always her tradition, my aunt and uncle hosted dinner at their home for all of the family. So when news of her illness came, it was implausible— shocking, unacceptable and surreal— because a diagnosis of ALS is a death sentence.

David told me he’d been attending an ALS Association support group. He explained that ALS is an orphan disease. It affects too few people for big pharmaceutical companies to invest in developing drugs that could combat the illness, because there is little financial incentive. I will never forget the pain in his eyes when he said, “There has been very little progress made since Lou Gehrig died from ALS in 1941.”

While clips and donations are still pouring in, videos of ice bucket challenge participants are now embedded into pop culture history, posted for posterity on Facebook, YouTube, the ALS Association website and beyond. One can smile watching the clip of former President George W. Bush challenging former President Bill Clinton; or, laugh at comedienne Wendy Liebman who accepted her ice…cream bucket(s) challenge.

Or, one can cry watching the powerful clip of Steve Broas, a father, husband and former teacher who has ALS. From his wheelchair, Broas, a devoted Giants fan, used computerized voice technology, thanking everyone for participating and donating to help find a cure. Broas then challenged Eli Manning. His story originally aired on Fox 5 TV and is now posted on YouTube: https://www.youtube.com/watch?v=Nj35i_Rsbr0

A ‘thinking outside the box’ clip was posted by fellow Medium writer and participant, Tyler Goelz. Tyler purchased 5 gallons of clean water, but opted to remain dry, preferring to donate the water to a local charity. He challenged others to follow his example. Tyler then split his donation between the ALS Association ( www.alsa.org/donate ) and the clean water charity (www.charitywater.org/donate .) Here’s Tyler’s clip: https://medium.com/think-for-yourself/als-icebucketchallenge-b9f126b28768 .

A particularly charming video on YouTube titled, Kids React to Ice Bucket Challenge provided some great insight from the younger generation. After watching videos of others, all of these kids accepted their challenge, getting drenched, laughing and smiling and knowing that they, too, had helped to spread awareness and raise funds. Link: https://www.youtube.com/watch?v=TKeG08hC8gk

Almost everyone, it seems, dived into the spirit, supporting the ALS Association Ice Bucket Challenge— politicians, athletes, actors, celebrities, police officers, firemen, adults, kids and even Kermit the Frog. But whenever something becomes an overwhelming success, that success elicits naysayers. Some of them raised concerns about the unprecedented influx of donations for a disease that affects relatively few. I doubt these individuals have ever experienced a loved one stricken with ALS. I’d like them to remember that this phenomenon (as of September 8, 2014, donations had reached $111.1 million dollars) does not offset the many years—- decade after decade—- of severe underfunding. The ALS Association is the only national non-profit organization dedicated to providing support, education and resources to patients and their families through its network of local chapters. It also funds research focused on finding a cure.

Other naysayers pontificated that the challenge is silly and narcissistic. Some claimed people should make donations without requiring recognition. Kudos to those who choose to give anonymously. But in this instance, according to an earlier post on the ALS Association website, during the same time period for 2013 (July 29th to August 31st) donations topped off at 2.6 million dollars, while this year, due to the ALS Association Ice Bucket Challenge going viral, donations exceeded 100 million dollars. Additionally, there are now over 3 million donors. Silly? Maybe, but ‘fun’ seems more fitting. Narcissitic? Not according to Steve Broas and his family or the other ALS victims who participated (some whose videos appear on the ALS Association website.) Not according to my family, and certainly not according to the millions who have accepted or will be accepting the challenge; who donated their time,creativity and dollars helping to educate, spread awareness and raise much needed funding. (I hope this wave continues indefinitely.)

So which video is my favorite? Though I’m partial to clips made by my own kids, I love the ones made by my aunt’s children and grandchildren, particularly the one made by David and Wendy and their two daughters. Dressed in their ALS Walk t-shirts, just before they drench themselves, Wendy, with her beautiful smile, exuberantly says, “My mother-in-law would have loved this!”

I agree. I think Aunt Sally would have laughed, joined in the fun, been completely awed by the power of social media and the outpouring of support, and made great use of such amazing, teachable moments.