By Carrie Cook
My husband loves the ALS Ice Bucket Challenge. No, he hasn’t done it (he eschews all cameras), but he did take some of his Facebook friends to task for pooh-poohing it, citing the 100 million dollars raised for ALS research. Criticism abounds. He is engaging in a Sisyphean game of whack-a-mole: Wastes water! 100 million! Useless social-media activism! 100 million! Stem-cell research! 100 million! His support is utterly uncritical. Why? I have ALS. He believes that hundred million dollars can pardon my death sentence.
I’m more ambivalent. Ambivalence is interesting. It is conflict; it is the war waged between the heart and the head, and those battle wounds are always raw. It’s something I try to engage with in my stories: to make my characters conflicted about each other, to leave you feeling equal parts hatred and love for them as well. If you feel that – well, I’ve done my job, because you will keep thinking about them, turning them over in your head, trying to resolve the conflict.
For the last few weeks, I’ve tried to resolve my own ambivalence about the Ice Bucket Challenge. I don’t care to watch or comment on the videos – even the ones dedicated to me. I am unable to engage with the most prolific ALS fundraiser of all time, one that has given ALS some of the street cred usually reserved for breast cancer and type 2 diabetes. I’m happy for that kind of awareness, I really am. But then I see gems like this popping up in my Facebook feed: “The Ice Bucket Challenge mimics what it’s like to have ALS.” This is not even remotely true, but the let-your-anesthesiologist-paralyze-you-without-actually-putting-you-under challenge doesn’t seem to be catching on. The idea that ice water mimics ALS symptoms is a retcon*, designed to give the challenge’s origin story a little more heft. More likely, it has its roots in the polar bear plunge, where people jump into a cold pool or lake for the charity of their choice. Because I am a pessimist at heart, I think the Ice Bucket Challenge is more suited to a viral breast cancer awareness campaign targeted to sororities, because wet t-shirts plus ice – well, you get the picture.
And then there are the haters. Everything popular (even Chris Pratt, possibly the most perfect human ever assembled) gets pushback; that’s just the way we’re wired. California’s in a drought and by 2050 we will all be trading wet naps in a dry, post-apocalyptic wasteland, so why are thousands of people dumping buckets of water on their head? Save it for the children! And can’t we see, say the most curmudgeonly (curmudgeonliest?) among us, that this is just another instance of internet slacktivism, designed to make people feel like they’re doing something – #Kony2012, anyone? Then there’s the ALS Association itself: bloggers report 73% of donations to ALSA goes to overhead, and the association even tried to trademark the words “Ice Bucket Challenge.”
Personally, I just can’t get worked up over these claims. People waste water every day: as they warm up their showers, or fill their pools, or water the lilies in front of their picture windows. It takes more than 1,000 gallons of water to make a t-shirt, and I guarantee every one of us has a collection of unworn cotton shirts sitting at the bottom of our closet – but this waste is invisible, so there’s no concerted effort to stop it. The slacktivism? Well, all kinds of things find popularity, from silly bands to swallowing goldfish – why shouldn’t we attach trendiness to social activism? In a summer bookended by Elliot Rodger, the MRA mass murderer, and Darren Wilson, the Ferguson police officer who shot the unarmed Michael Brown, I really don’t have an issue with people looking for something uplifting, something easy they can do in order to make the world a little bit better. Finally, according to Politifact, Ice Bucket naysayers earned a pants-on-fire rating: the ALSA uses 79% of donations for “purposes that advance its stated mission” – and it dropped its ill-advised adventures in branding.
I think the root of my ambivalence lies within that 100 million my husband likes to cite. It’s possible that money could result in an actual, viable treatment. It’s happened before. What would I give to see my forearms plump with gently sloping muscle? To be able to shake hands, to wave gracefully, to flip the bird to drivers who cut me off? What would I give to even arrest my ALS in its current form, recovery be damned? To simply not get worse, to be able to keep my voice and my legs and my arms just as they are, even if I would still suffer the occasional humiliating fall or need help to button a shirt? But that’s just a fantasy. Matthew Herper points out the gains made in Cystic Fibrosis research – the drug Ivacaftor – made possible by a grant from the Cystic Fibrosis Foundation. The drug treats only a small portion of sufferers, those 4-5% with a specific genetic mutation, and it costs each person $300,000 per year. That’s the reality: small, expensive achievements, gained inch by $100 million inch. Does that make it unworthy? Should they stop trying? Of course not. My conflict is my personal stake; I live in my body, and I have to prepare for what I know is inevitable. I don’t know what I would give, but I know what I can’t – hope. I spent eighteen months in a diagnostic limbo hoping that I had anything other than ALS, and it nearly destroyed me. The conflict between hope (that feathered thing that won’t shut the hell up) and my reality rages whenever I see someone post yet another video of another celebrity dumping ice water over his head. But for that, I would dismiss the Ice Bucket Challenge as simply more proof of the internet’s inherent absurdity. And I would do it without a second thought.
*Do not click! Internet time suck ahead!
Carrie Cook is a second-year K-State graduate student in creative writing. She also has a degree in Apparel and Textiles with an emphasis in fashion design, and she enjoys purchasing fabric and then not making anything out of it. Last year, she completed her goal of using her entire GI Bill, and she recently started collecting rejection letters.