During the final weeks of August, I couldn’t sign onto Facebook for more than five seconds before stumbling across yet another ALS Ice Bucket Challenge video. These videos featured people, both ordinary and famous, dumping buckets filled with ice on their heads and nominating three new people to participate in the name of raising awareness for Amyotrophic Lateral Sclerosis, a neurodegenerative disease that affects the motor neurons. If a person was challenged, they had 24 hours to post a video or they had to donate $100 to the ALS Association.
I was getting cranky. The environmentalist half of me cringed with each new video that popped up. I considered all of the the people who don’t have access to clean water. I thought about the awful drought in California and how despite lacking water, people were continuing to waste so many gallons for the sake of 20 seconds of Facebook fame. Like many of the other trends that I ignore on social media, I ignored this one too and hoped that no one would ever challenge me.
Then I was nominated. The thing I had spent so much time passively ignoring was now staring me in the face. Do I just pretend I didn’t get any notifications? Do I just write a post saying I was donating and that’s that? Or, do I try to see the good behind it all?
I had to start looking at the facts. Donations had hit 8.2 million dollars by that point. Even if people were only participating to be a part of the crowd, they were learning what ALS was in the process. I knew what the disease was because of stories my grandmother told me about her older sister, who died from it. But according to the ALS Association website, only 30,000 people in America have it. $8.2 million raised to help find a cure for 30,000 people. You have to admit, it’s an impressive and admirable feat.
That’s when everything clicked. I was looking at this challenge from the wrong angle. When I removed my social media bitterness from the equation, I realized what a powerful tool the ALS challenge was. Couldn’t this same concept be applied to other causes? Causes like RA awareness?
All of us with RA complain when someone compares our condition to their grandma’s arthritis. We’re often accused of “faking” illness. And we’ve all had that moment when we wish more than anything that an unsympathetic healthy person could switch bodies with us for just ten minutes.
No, I’m not advocating that we dump water on ourselves. What I am saying, however, is that sometimes advocacy goes far beyond newsletters and 5k runs. We live in a time where technology rules our lives, and the Internet is far more powerful than we think. If the Internet can give us RA forums and blogs full of hope and support, then couldn’t it also help us find a cure?
I’ve seen some people with RA try to create their own ALS-esque Facebook challenges, but they don’t seem to be catching on. I hope one does someday, but that will require large numbers of participants.
Anyway, I manipulated the ALS challenge so I could participate. Rather than dump fresh ice water on my head, I decided to jump into 55 degree pool water at midnight. Believe me, it wasn’t pleasant.
It would be wonderful if RA awareness could become a mainstream topic. Let’s work on that.