I was scrolling through Facebook seeing all these videos of people pouring water on each other and naming people to “the challenge”, except I noticed the “challengers” never explained the challenge. As Texas endures another serious drought, this seemed like a huge waste of water just to “call someone out”. I mean… what’s worth increasing drought conditions? As the challenges went on… it seemed like people used more and more water, not even caring to dump it on grass or gardens.
I was curious. I kept watching, and even agreed with a post I thought was lamenting the wasted water. I didn’t know what ALS was and freely admitted my ignorance. The reply was a clearly irritated, “how hard is it to look up ALS”? Uhm… not hard at all, but why be cross? We ARE in a drought, and pouring water out without explaining the challenge seemed extravagant. I can hear mothers everywhere screaming “turn off the water”! The more videos I saw, the more of a gimmick it became.
Eventually, the challenge made the local news where I finally learned it was supposed to be to educate people about a disease called ALS, commonly known as Lou Gehrig’s disease and raise money for it. You either donate OR pour ice on your head to raise awareness. I’d seen dozens of these videos and no one mentioned ALS, so I had to wonder is this really educating people about ALS? Are these people affected by ALS? Donating to ALS? Remind me again, what is ALS? Even the news focused on ALS donations which hit an unprecedented $50 million as of today. I still didn’t know what it was.
OK, I looked it up. It means Amyotrophic lateral sclerosis, and it’s a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
And then I saw “Uncensored and Sexy” Anthony Carbajal.
It starts off rather cheesy. I almost turned it off. Then, this handsome, funny man trying to raise awareness for ALS starts talking and through his grief, fear and frustration he tells you about his inheritance. And ALS became human. My mind went back to the definition of ALS… “affects” is not even remotely close to a definition….. “affects”!!!???
I seized on my former childhood neighbor’s angry retort. We clearly missed an opportunity – of him to educate me about ALS – of me to offer kindness. This definition was hardly a tangible explanation of the human cost of ALS on those afflicted and those supporting them. I accepted with great sadness my inability to do more than offer words to my former neighbor and I felt his anguish. My childhood neighbor’s relative had ALS along with 30,000 people in America. Through Anthony Carbajal I understood the response to my ignorance. My friends’ brother is slowly losing the ability to have his body function properly, there is no cure…. and enduring this devastation, your mind as sharp as ever knows what the body no longer undertakes. ALS diagnosis forces you to ….. HEY! Did you watch the video? All of it?
It’s beyond definition. From wasted water to a watershed moment I waded through the wasted water becoming grateful for all the goofy videos and hopeful for Mr. Carbajal, James Rudy and my childhood neighbor.
So please, if you’re taking the challenge, NAME it. Consider a donation so we save the water … and a life. To those dealing with ALS, please let our ignorance of this disease be an opportunity to share the human story of ALS. Anthony Carbajal, you are a walking miracle of love; James Rudy…. you’re a brave and witty man; and to my childhood neighbor…thank you for helping me understand the human definition of ALS.