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How I kicked the bucket and learned to love the Ice Challenge anyway 

Oh, ALS Ice Bucket Challenge, what a freezing tempest you've created.

Two weeks ago, I was befuddled by the barrage of videos featuring excited people in wet T-shirts, soundlessly playing by themselves like an issue of The Daily Prophet Gone Wild.

Once I caught on that all my Facebook friends were not in fact auditioning for a community theater revival of Flashdance, I was bemused but skeptical. What exactly did this Slurpee sloshing have to do with curing amyotrophic lateral sclerosis (ALS)? As far as I understood it, you only donate if the ice stays in the tray.

When I was inevitably nominated—and if you haven’t been, you will be because the laws of exponential friend mathematics dictate there is no escape—I dutifully clicked the PayPal button on the ALS Association homepage and went back to chasing down the dog for her insulin shot.

There’s really nothing I detest more than being cold and wet, Tybee Polar Plunge notwithstanding. I promptly forgot about calling out three more people. (I break chain letters, too. Sorry.)

But choosing not to drown in my own personal glacial waterfall has opened me up to the slings and arrows of righteous outrage. Several people accused me of being a “hater,” which isn’t fair at all. I prefer to think of myself as more of a “grumbler.”

As the ice storm has reached blizzard proportions, I am way ready for it to be over. When your 10 year-old—who doesn’t even have a Facebook page—starts wailing at 10:30 p.m. because someone at soccer practice nominated her and she has to do it right now to meet the 24-hour deadline, you dump your half-melted cocktail over her head and tell her to go to bed.

While it seems like almost everyone else has chosen to make a splash instead of a donation, I’m not the only one who eschewed the bucket dump for the tax deduction: As of print time ALS has raised almost $50 million. That’s been boosted by legions of good people who dumped AND donated, including every politician and celebrity looking for an excuse to be caught on camera.

Sure, some of them are asshats like Charlie Sheen who used the challenge to massage himself in his own narcissistic juices, but I guess his $10,000 spends as well as anyone else’s. Even Cookie Monster and Kermit the Frog ruined their fur blow-outs.

As for awareness, it’s already trended on Twitter longer than Nicky Minaj’s new album, and millions of Americans who’d never heard of Lou Gehrig’s disease—let alone Lou Gehrig—now know that ALS is a rare degenerative neuromuscular condition that strikes one in 50,000.

I’ve personally learned that military veterans are twice as prone to it as civilians, and that one of my favorite jazz musicians, Charles Mingus, died from ALS. (I’d just assumed that he’d O.D.d like everyone else, my bad.)

Most patients die within five years of diagnosis. Quantum physicist Stephen Hawking has been living with a form of ALS for almost 50 years, which may but probably does not have anything to do with his savvy understanding of the space-time continuum.

The point is that ALS is a variable, mysterious, tragic syndrome that has confounded researchers for over a century. Employing stem cell transplantation has been promising, and there may even be clues in an ALS-Lyme Disease connection. A recent study suggests that aluminum in the central nervous system may play a role in ALS and other neurodegenerative disorders.

(Short PSA: Aluminum is the main ingredient in anti-perspirant. Throw that poison out and get yourself some aluminum-free deodorant.)

The unprecedented success of the ice bucket challenge undoubtedly means more studies can be funded to provide keys to its causes and possible treatments. Some have called out the high salaries of ALS Association administrative staff, but the organization has a stellar four-star rating on CharityNavigator.org, and the bulk of its budget goes to education and research, with generous resources and equipment for ALS patients and their families.

The Atlanta-based Georgia Chapter of the organization eased the burden for locals Leigh Stefanick and her husband, Michael, who died from ALS in July.

“When he lost the ability to speak, they sent us a Dynavox computer with Eyemax recognition,” she told me last week. “They do a great job of helping people who have this disease.”

Michael was a Savannah son and devoted father who held the state fishing record for wahoo. He was diagnosed with ALS in July 2012, and as he struggled with the painful and withering effects, he lamented to his wife how difficult it was to have a disease that no one had ever heard of or cared about. That may have been true just a few weeks ago, but the ALS ice bucket challenge has changed that forever.

“I just wished this had all happened before he passed,” said Leigh, who said a group bucket challenge helped with the grieving. “But I’m able to go on with my life knowing that people care.”

Now that ALS is in the spotlight, Leigh hopes to establish a local presence of ALSA that will continue the support. Perhaps we’ll see a yearly fishing tournament in Michael’s honor that raises funds and awareness for generations.

Which brings us to the flash flood nature of the ice challenge. Sure, it’s been a harmless and undeniably helpful kind of fun, but a one-time donation won’t cure ALS or anything else. Michael Hiltznik of the L.A. Times even wonders if such “stunt philanthropy” will negatively affect the charity’s ability to build a sustainable donor base in future years. Others question the obnoxious waste of water as other worthy causes and local non-profits scrape pennies together.

But maybe it will just keep inspiring us to do and give more: Delivering a bag of toothpaste and tampons to the Inner City Night Shelter doesn’t make for a cute Vine post, but it takes about the same amount of time. If you prefer sizzling hot rock ‘n’ roll to ice baths, check out Stattsfest at the Jinx on Sept. 13, a benefit for our chairbound brother Jason Statts who was paralyzed by a bullet on the streets of Savannah in 2008.

In the end, though I remain dry, I think it’s wonderful that the ice challenge has lit a fire of virtue in people that Ferguson police in riot gear, a beheaded American journalist, 1 in 68 children with autism and myriad other causes have not.

But all the videos and rubber bracelets and colored ribbons are no substitute for the true work, the challenge of quietly and unglamorously taking care of our own.

As everyone towels off, it’s vital to remember to parse the antic from the altruism, lest we move on to eating caterpillars for Athlete’s Foot.

cs
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About The Author

Jessica Leigh Lebos

Jessica Leigh Lebos

Bio:
Community Editor Jessica Leigh Lebos has been writing about interesting people, vexing issues and anything involving free food for more than 20 years. She introduces herself at cocktail parties as southern by marriage.

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Connect Today 11.19.2017

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