My grandmother was a strong, stubborn woman, part Irish and part Pennsylvania Dutch, raised amid the worst of the Great Depression. She didn’t take kindly to anything that slowed her down, and this included the early symptoms of ALS.

By the time the formal diagnosis came, the disorder was moving very quickly. In rapid succession, she lost the ability to climb down stairs; to walk; to sit up; to talk at all. During one of our last visits, I can remember marveling at the steely determination she showed as she raised her hand and pointed.

She became good at pointing. She pointed when she wanted something done; she pointed when she wanted you to know she loved you. The effort she summoned to make this small gesture was the same amount a healthy person might muster to climb a mountain.

She died in 1998 of an unrelated cause, shortly after she lost the ability to swallow. To the end, she remained sharp. It was only her body that failed her.

grandmother-als1

Before the diagnosis.

Even as our visits became more and more frequent, I remained too young to understand why she could no longer do the things she’d once enjoyed; why a task as simple as putting a puzzle piece into place had become suddenly impossible. Long after she passed away, I assumed that the things she’d gone through were, for some people, a natural part of the aging process. It took a few more years and the internet for me to understand what Amyotrophic Lateral Schlerosis really was – and just how horrible it can be.

The fact is that, unlike the martial, upbeat language that often characterizes the American fight against cancer, the dynamic around ALS is very different. There is no “beating” it; you can only bear it. While there are prominent examples of the disorder’s onset being slowed, any diagnosis that runs its course is destined to end the same way. ALS is the process of being gradually entombed in your own body. Couple this terrible inevitability with its relative rarity (roughly 3.9 U.S. cases per 100,000), and it’s easy to understand why so many people have avoided talking about it.

That is, until this month. The “ice bucket” challenge, begun in Boston and spread intially via pro golfers is, by volume of attention, now the most successful awareness and fundraising campaign in history. As of August 22, total donations to the ALS Association stand at $70 million dollars. This is a 35x increase over funds raised in the same period in 2013.

The real benefit, however, is that Americans are finally educating themselves about the disorder, and becoming acquainted with the stories of those who face it. According to preliminary Google Trends data for August 2014, search interest in “ALS” has increased by orders of magnitude. In fact, it’s arguable that the attention being paid to ALS is at its highest point since the diagnosis of baseball player Lou Gehrig in 1939. His name has been synonymous with the disorder ever since.

Not even $70 million is enough to drive a drug fully from development to testing to trial and use – but it doesn’t have to. The awareness generated from the ice bucket challenge has now become entrenched enough to persist long after the funny videos stop bouncing around Facebook. This new awareness of ALS lets us empathize a little more with those who have it. It also incrementally increases the pressure on politicians and pharmaceutical companies, which in turn paves the way toward a real cure.

Of course, as the challenge’s popularity has grown, the number of naysayers has grown as well. This is another consequence of social movements on the world wide web. Some of these criticisms have been thoughtful. Others have been very, very stupid.

Let’s deal with the stupid ones first. There’s a vocal minority who have attacked the success of ALS awareness because it “steals” attention from other, competing causes, be it the protests in Ferguson or the rise of the Islamic State in Iraq. There’s even been an argument made that the whole thing wastes too much water to be worth it.

The fact is that, as the popularity of a given movement grows, there can also be an accompanying urge for people to play the role of contrarian – and deflect some of that attention back on themselves. The world’s appetite for charitable causes it not zero sum; coolers of ice water dumped and re-absorbed into the ground will not deplete the Earth’s fresh water reserves any faster. Those who insist on trying to poke holes in such a good cause also happen to be those most in need a long ice bath.

There is another, more considered point of criticism. Many Facebook users have shared and passed on the ice bucket challenge without even trying to investigate the cause behind it. Moreover, the levity of the campaign does seem at odds with the terrible disorder it’s intended to draw attention toward. Could ALS have generated a similar level of awareness and donations while leaving out the ice buckets entirely?

The short answer is “no.” The ALS ice bucket challenge has been so successful precisely because it capitalizes on what makes the web work. It’s a “challenge,” designed to aggressively multiply as each person participates and passes it forward through their friend network. The product, a video, is short and almost consistently hilarious. Even the ingredients required – some ice, a bucket, and a camera – are basically dummy-proof. Thanks to realities of the twenty-first century, some people have probably had more trouble acquiring the bucket than the camera.

At play with the ice bucket challenge are the same viral trends that have allowed certain web companies to essentially print money with their mastery of the saccharine, shallow, and highly shareable. The difference is that this is for a good cause. Those fretting about the obviousness with which some Facebook users have approached the ice bucket challenge should worry less. If this didn’t make them pay attention to ALS – what would? By simply participating, these people who fail to educate themselves about the cause can still pass on the challenge to someone who will.

Ultimately, the ice bucket challenge is super cool – as hundreds of thousands of Americans are now discovering. It’s a prime example of charity empowered by twenty-first century technology. Where it’s blazed a trail, I suspect many more will follow. This can only be a good thing.

In lieu of a funny video, I’m donating to the ALS Association. If you’re still with me and have yet to donate, make a fool of yourself, or both, I encourage you to do so. Thanks for reading.

 

http://www.youtube.com/watch?v=wCisNA4Wbw0