It was bound to happen eventually. With the message so viral and my family so social—both online and in real life—one of us was sure to receive the ALS ice bucket challenge.
Sure enough, yesterday both my husband and my youngest child were nominated to douse themselves in ice water, in the name of raising awareness about a disease that few of us understand.
Up until about two weeks ago, I didn’t even know the acronym ALS, and I certainly didn’t know “amyotrophic lateral sclerosis.” I had heard of “Lou Gehrig’s disease,” but I don’t personally know anyone who has it.
Little wonder. The National Institute of Neurological Disorders and Stroke reports that only “12,000 people in the U.S. have a definite diagnosis of ALS.” This is not a common disease.
So may the odds be ever in your favor.
But the odds are not in everyone’s favor. Over the past few days, I’ve read and heard and watched gut-wrenching stories from friends and strangers, about how this random illness has robbed their parents and siblings and neighbors of muscle control. And life.
Their stories have been a painful way to learn, but I understand ALS and its impact now, at least a little.
So, in terms of awareness, the campaign works. Before: I wasn’t aware. Now: I am.
Evidently, the challenge has also generated a huge spike in donations to ALS research. According to TIME on August 11, “the ALS Foundation national office reported collecting $5.5 million in donations since July 29, compared with $32,000 in the same time period last year.”
So, in terms of fundraising, the campaign works. Before: thousands of dollars. Now: millions.
Still, every day that that this campaign continues, I am relieved when I am not called out to participate.
I don’t want to be a spectacle. As my sister put it, “I don’t post on Facebook when I have contributed to a disaster aid, the local school, or a woman’s shelter.” True. What’s more, why would I want my charitable action to become someone else’s online entertainment?
I don’t want to waste water. My son spent two weeks in Rwanda this summer, and his experience has made me a more sensitive steward of our resources. The Midwest is not experiencing drought, by any stretch of the imagination. (Enough rain already.) All the same, I don’t feel right publicly squandering a bucket-full of H2O while tiny kids on the other side of the planet are hiking miles of rough terrain, several times a day, to haul water that wouldn’t meet our sanitation standards and barely satisfies their daily needs.
I don’t want to make an ignorant donation. I barely understand ALS as a disease. I know nothing about efforts for its treatment or cure. I don’t know how ALS-related organizations use the funds they collect. I don’t know what people with ALS need. I don’t know what kind of support their families appreciate. How, then, can I choose where to direct a financial contribution?
I wallowed in these considerations much of last night and today, deliberating about how to help my daughter respond to her challenge. (My husband can deliberate for himself, of course. For a nine-year-old girl, a bit of direction is in order.)
To get behind this cause, I needed to find some positives.
I do want my family to be part of a positive movement. I want my kids to have that feeling of making a difference. I want them to have fun participating in a viral effort where the intentions are good. One friend passes the challenge to another. Friends and family members we love and respect have taken the challenge. There is solidarity in this campaign. A simple action helps little girls (and people of all ages) feel empowered and united against a scary disease. Why wouldn’t I encourage my daughter to respond in the same friendly, adventurous spirit her friend conveyed in her nomination?
I do want to be authentic. I want to support this cause in a way that is true to my values and beliefs. Sure, I can write a check. Buy my family and religious heritage suggests that I do more. How can I be arms and legs or ears and mouth for people dealing with ALS?
I do want to be helpful. While considering the ice bucket challenge, I realized that I’d prefer to offer direct support to an individual or family dealing with ALS—whether they’re in the throes of the disease or grieving a loss. I posted as much on Facebook this morning. Within an hour, I knew of three families that may welcome support. I’ve invited specifics from each, so we can respond in the most positive and useful way possible. Meanwhile, all three families have my prayers.
This is a chance to do something truly helpful.
So, about an hour ago, when my youngest reminded me that she wanted to do her ice bucket challenge before taking this evening’s shower, I told her to go fill a medium-sized bowl with ice water. (Not too big, so we could justify the water waste. Maybe.)
We all went out to the driveway, where she stood at the edge of the concrete, beside our pickup truck. Her big brother climbed into the bed of the truck, ready to drop the water—on her count. Her big sister held a beach towel nearby. I crouched low and readied the iPad to record. I gave her the go signal, and she said all the words—her name, the friend who nominated her, three more fourth graders she hopes will accept the challenge, too.
When the icy water met her head, she didn’t flinch or scream. She just took it.
It was a little anti-climactic.