No Water, Less Sizzle, More Steak—A Response to My ALS Ice Bucket Challenge

Glass of Ice WaterSplash.

That’s the sound that my friend wanted to hear as I doused myself with ice water (or as most people have done, water with ice added at the last moment).

You see, I have been challenged by my friend of more than twenty five years to pour ice water on myself, or face the “penalty” of donating $100 to an organization to which I had never before donated. Sincerely, to my friend, I am honored to be among those you challenged. And the challenge has promoted me to look at ALS more closely.

The challenge is honestly a really cool idea. Awareness has been raised about the horrific challenge of Lou Gehrig’s Disease (ALS). Money has been donated. Arguments for and against the concept have been hurled into the mix by many.

I kind of wish it was a beef jerky-eating challenge. Or a watching “Breaking Bad” challenge. Or maybe taking a nap. (I might just do any of those things just for the heck of it.)

And, yes, I’ve enjoyed watching my drenched friends in their videos. As a fairly well-known known fun-loving, comedic guy not afraid of the spotlight and physical humor, I figured I’d probably get challenged.

Candidly, I was hoping I might never be challenged. Then I don’t have to deal with it.

Then I narcissistically thought “Why isn’t anyone challenging me? Why am I not at the top of consideration by a number of my friends?” Sheesh….

Today, I was.

First thought: “Woo hoo!”

Second thought: “Crap.”

A good part of me wants to meet the challenge. Part of me does not.

The part that does says “What the heck, why not, what’s wrong with playing into the whole thing??? C’mon, be a sport. No flack by participating. Don’t be the ‘Get off my lawn’ guy!”

The other part says “So I do this just because someone challenged me? That’s my duty now? Can I do more than pour water on myself and then put three other people in the same position?”

The biggest problem is—despite the likelihood that many of my friends are well-informed, far too many people are doing the challenge without understanding why, or even what ALS is. Moreover, they are not donating, feeling they’ve done their part. The thing is, if you share it on Facebook or Twitter, chances are a mere 10% of your friends will actually be delivered your video posting and less will actually see it. You may have only delivered a message to a few people in the end…

So here’s what I propose: Let’s make a change—give people an option to dump the ice water, look up what ALS is and write a message about it—and post that. Then challenge 3 or 5 people to write something about what ALS is and why people should support the cause. And share it forward etc etc.

Sure—not as hilarious. Not as “sexy.”  More steak, less sizzle.

I have nothing against ice water. Or heads. Or combining the two on video. In fact I don’t even object to the Ice Bucket Challenge. I just think we don’t have to stop there.

So my answer to the challenge I was given is this blog post. Which I will share with everyone in my social media circles.  And I will challenge three other people to use ice water if they want, but nevertheless to post info about the disease and the ALS Association at a minimum, then donate what you can.

Here’s the info I will share, according to ALS.org:

Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease.

While there is not a cure or treatment today that halts or reverses ALS, there is one FDA approved drug, riluzole, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.

Importantly, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences.  There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate. No matter what your individual course or situation may be, The ALS Association and your medical team are here to help.

To learn more about the personal stories of people who are living fully, click here. As one man put it, “I’ve made ALS part of my life, not my whole life.”   als

Of course I made a monetary donation to the ALS Association whose mission is: “Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.”

 

I am thankful that, while many people are posting about people they know or who have known with ALS, I have yet to witness anyone suffering it’s effects thus far. To those who have, I am grateful you choose to share your stories.

While I absolutely salute every person who has done the ice water challenge, I tend to travel my own path and I’ve rarely done something exactly the way others do, so I won’t just do ice water “because”. Yet I also don’t back away from a challenge. Again, this post, while more steak than sizzle,  is my individual response to the challenge.  So, with apologies to my friendly challenger—no water.

In a way, Gehrig’s own words work well here, as inspiration:

“Lets face it. I’m not a headline guy. I always knew that as long as I was following Babe to the plate I could have gone up there and stood on my head. No one would have noticed the difference. When the Babe was through swinging, whether he hit one or fanned, nobody paid any attention to the next hitter. They all were talking about what the Babe had done.”

Thank you for reading, and for whatever you do next.

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