I remember standing in line at the drugstore with my mom one time when I was in high school. They were having one of those fundraisers where you give a dollar, and you write your name on a paper tag, and it gets taped to the wall behind the register. The wall was filling with white paper tags. The clerk behind the register began to check out my mom’s purchases. Before she finished, she looked up at my mom and asked, “And would you like to donate a dollar toward ALS research?” I could tell my mom had been ready with the quick negative response we’re all so good at giving those poor register clerks, but at the question, she paused. A beat. Then, “Yes. I will.”
The moment has stuck with me ever since. My parents were always generous donors to many individuals, missions, and charities. They gave regularly through our church. But the moment at the cash register was rare. It wasn’t often that I saw them say “yes” to that kind of request for a cause.
And I knew why the yes had been said. I knew what the pause meant. Those three little letters had made all the difference: ALS.
This one was ours.
***
My grandfather died of ALS when I was just over a year old.
I barely knew him, of course. I don’t have any memories of interacting with him. But I’ve got the photos of him in a chair, holding me as an infant. I remember the story of when my cousin, about eight months younger than I, was introduced to him. My uncle and aunt asked Grandpa if he wanted to hold my cousin. Grandpa looked down at his arms, then back up at them. “I’m afraid I’ll drop him,” he said.
I had lunch with Grandma last week. She’s been widowed for over thirty years now. She started talking about those final months with Grandpa, about the conversations they had. Conversations about whether she should consider getting married again. About how she would make it financially without him. About how his illness would progress. About how he would die.
I remember watching The Pride of the Yankees a few years ago and experiencing far deeper emotional reactions than I’d expected. I wasn’t just watching a story about a sports hero; I was watching my grandfather’s story. I remember weeping at the little moments—when Eleanor was able to best Lou in a friendly wrestling match and cheered that she finally won; when Lou fell from his chair in the locker room. Terribly sad moments you know were the early signs of his disease. My grandfather’s ALS began in his arms; and the deterioration quickly forced him to stop working as a paper-hanger and painter.
Yes, this story was ours.
***
The ALS Ice Bucket Challenge has been sweeping social media this month. And, like anything that goes viral, it’s received its fair share of backlash. Will Oremus noted the illogic of the challenge in an article for Slate, and went on,
“As for ‘raising awareness,’ few of the videos I’ve seen contain any substantive information about the disease, why the money is needed, or how it will be used. More than anything else, the ice bucket videos feel like an exercise in raising awareness of one’s own zaniness, altruism, and/or attractiveness in a wet T-shirt.”
I get it. I get that the challenge makes no logical sense—why are we celebrating not giving?—and —that it seems silly and narcissistic—really, you’re just dousing yourself with cold water?
But silly and backward as it may seem, the videos are having an effect. About a week ago, the ALS Association reported that donations had increased nearly 400% over last year’s donations at the same time. 70,000 new donors gave to ALS research in the first two weeks of August. Those numbers have only risen: The New York Times reports that over $13 million in donations was received as of last Sunday. Families fighting ALS are speaking out and commending the movement. I have friends who have said that their curiosity about all these posts made them Google ALS and find out what it is, because they didn’t know before.
70,000 new donors gave to ALS research in the first two weeks of August.
Social media is a quirky thing. You never can quite map what’s going to hit and what’s going to miss. Perhaps the very illogic of this challenge is why it’s a hit. For some reason, we like tossing ice water on ourselves, and hey, as a bonus, people are learning about a disease that many have never heard of. You can say the whole thing is dumb or annoying or a waste of time, but I’m guessing a whole lot more people have been reached through this than heard about ALS research and filled out a paper tag with their name at the drug store.
***
If The Curator’s purpose is talking about the world as it ought to be, it may seem strange that I’m writing about the Ice Bucket Challenge. But I think it fits within the category. The world that ought to be ought to be without diseases. It ought to be a world where amyotrophic lateral sclerosis never existed. That’s what it was created as, after all. Cornelius Plantinga, in the first chapter of Not the Way It’s Supposed To Be, says,
“Central in the classic Christian understanding of the world is a concept of the way things are supposed to be. They ought to be as designed and intended by God, both in creation and in graceful restoration of creation. They are supposed to include peace that adorns and completes justice, mutual respect, and deliberate and widespread attention to the public good.”
But sin entered the world, and death and disease through sin, and we now have to adjust our expectations of what the world ought to be.
Now, in its post-Fall state, the world ought to be one that has a cure for ALS. It ought to be a place where there is plenty of funding for research and support for impacted families. But perhaps the best we’re going to get is people dumping buckets of ice on themselves. And you know what? I’m okay with that.
Because the world ought to be a place where when we hear about injustice, when we learn about terrible situations, when we discover something awful and broken exists, we tell everyone we can. It ought to be a world where we are willing to bear the cold and discomfort to spread the word, one where we are willing to open our pockets and our hearts of compassion and give or serve as we are able. The world ought to be a place where we yell from the mountaintops that there is wrong and it should be made right.
Learn more about the ALS #IceBucketChallenge and the disease itself.
