“Have you heard of Lou Gehrig’s Disease? ALS?” my supervisor, a certified speech therapist, asked me, as she drove us further into Revere, the working-class Cape Cod of Boston.
“Yes,” I answered, “But I’ve never seen anyone with it.”
“You’re about to meet a sufferer. It’s a horrible disease. This young woman needs help with swallowing, that’s my role as a speechie. I want you to be ready— remember we need to offer support to her grandmother, so we should be calm.”
I saw the ocean peeking out between the high-rise low-income apartment buildings. The water glinted in the sunlight, but the beach, in mid-October, was mostly deserted. I was ticking off observation hours towards my own degree and certification as a speech therapist, so all I would have to do was act friendly and polite, and I felt certain I could manage that.
“Here we are,” my supervisor chirped.
My supervisor’s patient, a woman in her twenties with long brown hair tied up in a disheveled ponytail, was writhing on the sofa when we walked in. Her grandmother greeted my supervisor.
“She’s gotten worse,” the grandmother confided. “I think she’ll need a feeding tube soon, but I don’t know how I’m going to manage that when she can’t keep still.”
The young woman had started to groan. Her body seemed to be undergoing continual discrete spasms; it seemed to be entirely out of her control. I feared she would fall off the sofa. I realised I was staring, and quickly rearranged my face into what I hoped was a friendly and polite expression.
My supervisor spoke softly with the young woman’s grandmother for a few more minutes, then said goodbye. We let ourselves out.
“Are you all right?” my supervisor asked me as we pulled out of the driveway.
“Yes, I’m fine, but you were right, that is one horrible disease,” I said.
“It’s awful. And she’s so young. It’s very sad.”
I accompanied that speech therapist on several more challenging home visits, and I went on to do a placement at a state-run veteran’s hospital, but I saw no one more ravaged by disease than that young woman during the rest of my training. In fact, during my forty-odd years of life, I have yet to meet anyone more visibly suffering that the woman with ALS on the sofa in Revere.
Enter the ALS Ice Bucket Challenge. I knew the Ice Bucket Challenge was a “thing,” but I didn’t pay very much attention to it, figuring it was just a fad like the No Makeup Selfie, that would make some money for charity before fizzling out. I hadn’t even watched any of the many Ice Bucket Challenge videos that appeared with increasing frequency in my news feed until this past weekend, when both me and my husband were “tagged” for the challenge, me by the pillar member of my running club, my husband by his boss. My husband has only worked at his current place of employment for a few months, so it was a given that he would need to accept the challenge, but I have been running with my club for several years now, so I felt free to consider my response. Something about the phenomenon rubbed me the wrong way, but I didn’t know what, and I wanted to figure out what my issue was rather than just jump on board because everybody else had.
Part of the problem with the Ice Bucket Challenge, for me, is the concept of tag itself. I felt honoured to be chosen— to be called out publicly— but at the same time, I worried that some of the members of my running club who hadn’t been tapped may feel left out. I attended junior high school in the era before bullying was even labelled as such; during those awkward years, I was a somewhat overweight, bookish outsider, and all through junior high, whenever our physical education lesson included a team sport, I was always one of the last two or three kids to be picked for a team. The feeling of sitting on the cold, highly varnished wooden floor of the gymnasium, wishing that I could just disintegrate rather than suffer the humiliation of listening to twenty-eight of my classmates’ names called out before mine again, has stayed with me. I didn’t want anyone to feel snubbed that I had been tagged before them, and I certainly didn’t want to in turn slight anyone with my own nomination of three friends.
There was no reason why I couldn’t douse my head, make the donation, and skip the nominations, but even without the tag element, the Challenge still rubbed me the wrong way. Every still shot in my news feed showed one of my friends, or the child of one of my friends, smiling. Some were standing, some were sitting, but all were smiling. The gulf between my cheerful friends and the woman I had met all those years ago was unfathomable. I understood that if it meant more money for research into a possible cure, all of those directly affected by ALS would no doubt smile even more broadly than my friends at the money raised by the campaign, but I wondered how many of the people merrily pouring ice water over their heads had any idea what ALS even was, let alone an appreciation of its ruthlessness. I further suspected that those who posted the videos may not always be following through with the intended donation at all. Without the education about ALS or the financial contribution towards the disease’s obliteration, the Ice Bucket Challenge seemed to me to be a dare like any other dare. I learned as a child to be wary of dares, so I continued to let my allotted twenty-four hours slip away.
Not so for my husband. If it’s your new boss nominating you, in a public forum, to accept a challenge for charity, it’s best to step up. My husband purchased a bag of ice, and after dinner, he informed me and the kids that the time had come to assemble in the garden to witness the Ice Bucket Spectacle. I was designated cinematographer. My husband made the obligatory short speech that included his further nominations, then he dunked his head in our good-sized red plastic cleaning bucket, stood up, and poured the bucket’s icy contents over himself. When the bucket was empty, he smiled. I stopped filming. The kids clapped and cheered, and the dog began to chase the scattered ice cubes.
My husband didn’t post his Ice Bucket video immediately. When it did appear in my news feed, a couple of hours after the deed itself, I was surprised to see that my husband had spelled out his intention to donate a substantial sum to the ALS Association, considerably more than I would have imagined, and certainly more than the amounts I generally donated whenever friends took on sporting challenges for charity or when my usual charity made special appeals for humanitarian disasters. When I saw the dollar amount he intended to give, posted in black and white, it hit me that another problem I had with the Ice Bucket Challenge was purely selfish; if my husband was going to donate more than usual, I didn’t want the money to go to an ALS charity. I wanted our donation to go to a Multiple Sclerosis (MS) charity, because my husband himself has been living with MS for the last several years. More money thrown at that MS may lead to more treatments like the oral medicine my husband had started taking about a year ago, a drug that had exerted a significant stabilising effect over his errant immune system and had thus made life with MS noticeably easier and a bit less terrifying.
I expect, based on the success of last year’s No Makeup Selfie to support breast cancer charities and the huge success of the ALS Ice Bucket Challenge, that surprising public acts nominally undertaken to support charities will be with us for the foreseeable future. These viral dares differ from the now-staid fundraising method of taking part in a sporting event because of their relative ease— anyone can opt out of makeup for long enough to take a selfie, and almost anyone can pour a bucket of ice water over her head with no ill effects, but not everyone can cross the finish line of a running or cycling race. Because of their accessibility, the online fundraising phenomena also carry a much greater social weight. No one will nominate you to run a 10K to support ALS or MS, and, particularly if you don’t normally run, no one will ask you why you didn’t participate. But refuse to pour ice water over your head and post the video evidence and you are teetering dangerously close to being a killjoy.
I nominated myself to fundraise for charity publicly a couple years ago. I was deeply shaken by the school shooting in Newtown, Connecticut that took place on December 14th, 2012. While still in a minor state of shock, I made myself a promise— I would run a half marathon and raise money to help end gun violence. Let me point out that I am not a real runner. As an adult, I had occasionally been seized by the desire to become a real runner; when I was in my mid-twenties I once made a New Year’s resolution to run twenty to thirty minutes twice a week for ten weeks. I kept that resolution— the only New Year’s resolution I have ever managed to keep— and went even further, running twice a week until July, but every session was a struggle. I gave up one hot and humid July day when, after ten minutes of sweating, I admitted to myself that I resented every stride. I turned around and walked home, doubting that I would ever willingly run again. But a couple of years before the Newtown shooting, a friend had talked me into signing up for a Couch to 5K-type course run by a local running club. With company, I found that running could actually be fun. Although my friend stopped when the course finished, I carried on running with the club, but never more than a couple times a week, and never further than six or seven kilometres. A half marathon would be a stretch, but I drew inspiration from another friend, who had never been a real runner either but had managed to complete the London Marathon a few years before I took my beginners’ course.
After I registered for the race, I spent about a week researching charities. To my distress, there were at that time no charities that seemed to be tackling gun violence in the U.S. with any success, and even if there had been, it would have been quite fiddly to fundraise for one of them as an American living abroad. I began looking for an English equivalent, and eventually settled on a London-based charity that sought to positively affect the lives of children at risk through engagement in sport and drama.
I trained seriously for a little more than six months. When I flagged, during long runs or on off days, I had only to think of the names of some of the children killed in Newtown to access hidden reserves of determination. I was running for a reason, and the reason meant enough to me to eventually carry me all the way through to the half marathon finish line. I posted the pictures of my triumph on social media, but I didn’t nominate anyone to run a half marathon next. Popularity did play an oblique role, by affecting the total value of my charitable donation, and I suppose that anyone who chose to contribute could see some of the hierarchy of my social network through my fundraising page. But unlike the names of those nominated next for the Ice Bucket Challenge, my fundraising page was not immediately visible, and a few donors also opted out of the public statement of connection by using their initials or, in one case, anonymity in their accompanying message. I was proud of my accomplishment, and I would consider doing a fundraising run again.
I didn’t complete the Ice Bucket Challenge within my allotted twenty-four hours. I donated somewhat more than my usual charitable amount to the Motor Neurone Disease Association, the British equivalent of the ALS Association, and I suggested to my husband that he may want to consider donating half of his own contribution to the MS Society. Even after the time limit had passed, however, I couldn’t put the Ice Bucket Challenge down; I was hoping to formulate a three-sentence explanation for my reservations, but it remained elusive.
Finally, after a week or so of grappling with my opinion, I took the question to one of my most straightforward sounding boards— my nine-year old daughter.
“So, Louise, what do you think about the Ice Bucket Challenge?”
“Well, I think it’s good because it raises money for charity, and it’s easier than running a race or something like that,” Louise said.
“So what do you think about Pappa doing it?”
“Brave,” Louise answered, with an approving nod.
“Does that mean you think I’m not brave because I didn’t do it?” I queried.
“No,” Louise said, without hesitation. “You’re brave too, but you think too much. What— why are you laughing? What’s so funny about that? Sometimes I just don’t understand grownups.”
To learn more about ALS, or to make a donation, visit http://www.alsa.org/ in the U.S. or http://www.mndassociation.org/ in the U.K.. To learn more about MS, or to make a donation, visit http://www.mymsaa.org/ in the U.S., or http://www.mssociety.org.uk/ in the U.K..