I have watched the growing popularity of the "Ice Bucket Challenge" Facebook campaign against ALS — in which people dare others to record themselves being doused with ice water and/or make a donation to an ALS charity — with growing unease over the past week.
My father, a physician at the University of Maryland, died of this little-known disease in 2001, about the time viral videos were beginning to take off. Until a couple of weeks ago, it was unthinkable that more than 2 percent of Americans would even have heard of ALS, though significantly more had at least heard of Lou Gehrig's disease — its other name. So, to see someone like Charlie Sheen championing the cause in his own crude style is as amazing to me as it is disorienting.
And it's made me realize that while Facebook is a fantastic delivery mechanism for simple or symbolic messages, it isn't the best place to try to work through more complicated emotional issues.
ALS, which stands for amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects motor neurons in the brain and spinal cord, slowly robbing patients of their ability to move and eventually breathe. I watched my father die of it, step by step, over a period of years that were as short as the days were endless. So watching other people suffer through a quick hit of cold water has a slightly different meaning for me. To this day, I am in awe of my mother who bore up to the emotional as well as physical wear and tear of fulfilling her marriage vows. 'Til death did them part.
Can we always trust the motives of celebrities taking "the challenge" to be as well-motivated as they are self-promotional? Does it matter?
It is ultimately an excellent initiative, after all. People are donating bucket loads of money to support ALS research, and awareness of the disease has skyrocketed. But it shouldn't be surprising if some of us who have lost loved ones to ALS react unpredictably, even inconsistently, to what we know will be the disease's 15 minutes of fame.
Frankly, if I'm honest, perhaps some of my own discomfort is selfish. It's just plain eerie to have something that until this summer felt intensely personal, profound and hidden go mainstream, almost overnight. ALS has stepped out onto the worldwide stage, demanding acceptance as one of a hundred other causes eminently worthy of our attention: cancer, genocide, homelessness among them.
And there's the rub: ALS has been transformed from something we'd never heard of into something that, to put it bluntly, we will spend most of our lives ignoring. I don't mean willfully ignoring or not caring. But the reality is, we have to live and function in this hurry-up world, and this requires that for the most part we keep our eyes on the things and people we deal with every day. And so before long, we will forget about ALS — unless it's part of our everyday.
Maybe I just don't want the memory I have of my father going the same way. Maybe by making ALS into a secretive, enigmatic force, I was just constructing a personal strategy for holding onto his memory over the years. I genuinely wish the ALS Association every success and pray for strength for all current ALS patients and their loved ones. But you'll have to forgive me if I continue to cling to my ambivalence over the ice bucket challenge.
Robert McLean is a journalist and former Maryland resident who now edits CIJ, Central Europe's leading property magazine. His email is email@example.com.
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