This is a post about a social movement, one of my favorite topics.
Q: What is the difference between a social movement and a mental illness?
A: The number of people involved.
I remember a chilly weekend in New York City when my boys were young. We gaped aghast as a young man stood on a street corner, removed his shirt, and proceeded to douse himself with water. Having lived in New York City long enough as a college student, I saw this, sadly, as part of the fabric of the city. Some might say he had a mental illness.
Lately, as millions of people around the world are publicly dousing themselves with water, I’m having a much different reaction. This time, I’m thrilled to see it.
As a result of this somewhat mad and giddy phenomenon, we’re all paying closer attention to a too-long hidden and too-little funded disabling illness: Amyotrophic Lateral Sclerosis.
It’s not as hard to say as it looks.
A – my – o – tropic is the hard one. Try it.
Amyotrophic Lateral Sclerosis.
It’s a progressive disease that attacks the neurons responsible for controlling voluntary muscles. That means that though the speed with which it progresses varies, it nearly always gets worse.
Voluntary muscles control voluntary movements. They are the ones we eat with, walk with, brush our teeth with, dance with. You get the idea.
One FB post on ALS listed a number of things we might try, to get an idea of what living with ALS is like. These two were my favorites:
- Speak with two marshmallows in your mouth. Pay attention to how often you must repeat what you want to say.
- Eat with a ten pound weight on your arm. Pay attention to how quickly your arm gets tired.
ALS affects two out of every 100,000 people in the US. Currently, it’s estimated there are 5,600 new diagnoses each year. Add that to the 30,000 currently living with the diagnosis. It’s not the biggest killer, but it is believed to be — eventually — a curable one. It only needs funding to further the research.
When I began jotting down notes for this blog post a few days ago, the total raised was around $40 million. Tonight, August 26, the Huffington Post reports the total at $88.5 million. That’s just from July 29 through August 26, 2014. During that same span of time in 2013, the total raised was a mere $2.6 million. (Yes. I will admit, I never thought I’d use the word “mere” to describe $2.6 million. But, as Einstein liked to say, “it’s all relative.”)
Read the full article here , which also touches on how the money will be spent and the fact that rather than slowing down after so many weeks, more money has come in during the last week than initially. The movement seems to be growing, not dissipating.
AND — a special treat for Matt Damon fans — a video of Matt Damon dumping water over his head. The advocate of water conservation does so in a unique way, too.
Here’s my Facebook post from Monday Night: me getting water dumped on my head.
With that post, my long dormant inner fund-raiser arose and I added a fund raising goal: $1 for each Like and $2 for each Share over the first 24 hours the post was up. At 6:45 tonight, that was 104 Likes and 75 Shares for a total of $254 that I’ll be sending to the ASL Association (asla.org)
So, that’s all good.
But let’s get back to the social movement aspect of this.
As with social movements in general, I was curious where or how this one began. Well …
It all began with Pete Frates. Here’s the video of his story. It’s not long.
Thanks for watching it. Well done, and it saves me from summarizing it all here.
Still, I knew nothing of this massive social movement that is literally sweeping the world until Coleman Gladis posted a challenge to those of us who supported his Kickstarter Campaign to produce a documentary about his mother, Mariah Fenton Gladis.
I mention Mariah in my ice bucket introduction. She has been my teacher and my friend for nearly twenty years. And she has had ALS since 1981 — over thirty-three years. Here’s a trailer for the documentary her son Coleman is putting together on his mother’s life.
I want you to see one more ice bucket dousing. This one is Mariah’s.
Or this link from her Facebook post
Interested in donating? Here’s the link I used for my $254 just now. It’s remarkably easy.
Next week, in Part II, we’ll dissect this video. Through various out-takes, you’ll learn the answers to questions such as: what do you do when traffic gets so loud you can’t hear your own voice, how do you get your husband to read your mind (or rather, how embarrassingly strident do you get when he doesn’t?), what do you do when someone you have tagged doesn’t want to do it? And, of course, the critical question: What’s in that other bucket? And why wasn’t it poured over my head?
As always, I want to hear from you. What’s been your take on this wildly unpredictable phenomenon? Have you taken the challenge yet? Can you think of other social movements that have caught on in this manner?
L. E. Carmichael
I can’t do the ice bucket thing (with my cold allergy, it would probably kill me), so I found another way to support the movement. I wrote a YA short story that includes a character with ALS. It’s for sale through my website and I’m donating 50% of the proceeds to research. I get to stay dry and conserve water, while still taking part in the phenomenon. 🙂
It’s so nice to see people come together for this, even if the mechanism is a little out there! Good for you for doing it, Janet!
What a great idea, Lindsey. I’m so glad you posted here about your experience. I think the more creatively we can figure out how best to become involved, the better. Don’t all have to do it the same. You’ll notice I haven’t challenged anyone yet. Most do. And I also contributed. Most do one or the other. I also took nearly a week; most do it within 24 hours. Lots of variation. The point is, this is a disease that’s been under wraps for too long. And it’s so thrilling to see it make the light of day. I still hope to add the challenge; just haven’t figured out who or how. It’ll come. Thanks for adding your thoughts.