I watched the videos fly by in my timeline, people dumping buckets of all sizes on their heads, everyone with the same O face afterwards. The fails and the flops. The lady on a horse, the entire Reds outfield.
And then, weeks after it began, when everyone was starting to become fatigued and the backlash was in full swing, I was challenged by my brother. He said that I could lip-sync to "Ice Ice Baby" if I wanted to, and lord knows I know all the words, but it didn't seem like enough. As I watched the water fly around Facebook, I realized that even though I'd seen a hundred videos, I had no idea what ALS really did to a person. My awareness of the challenge was raised more than my awareness of the disease.
In response to my brother's challenge, I thought of doing an "Ice Cream Bucket challenge," eating an entire pint of Graeter's ice cream. I thought of dunking my cats into an ice bucket. The internet would have loved that. Videos aren't really my forte, though, so I thought I might write about ice buckets. About the shock of O face you see when someone tells you they have a disease. The feeling of loss at an announcement of death.
But I do enough of that.
None of it seemed quite right to me. None of it told me the story of ALS, a story I'm only distantly familiar with, once watching a friend's grandmother waste away with it in one of the darkened back rooms of her house. I had no other knowledge of the disease other than that memory of a silent old woman lying so still there in her bed. And so I decided to do a little research instead.
At first I tried to find videos showing affected people on YouTube, but when you search "ALS" there, all you see are videos of ice bucket fails and Bill Gates' contraption. So I did some grown-up research by actually reading a few things. It didn't take that much longer to find information on ALS than it does to dump a bucket of water on your head. Here are some facts about ALS I found on the internet, including on the ALSA's website:
- ALS stands for "amyotrophic lateral sclerosis." Lou Gehrig had it, and his retirement from baseball is when it started to receive greater attention from the public, which is why it's often called Lou Gehrig's Disease. Here's his farewell speech, with the help of some other ballplayers.
- The early symptoms of ALS are muscle weakness or stiffness. "Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows."
- There is no test for ALS, nor is there a known cure.
- The life expectancy for people diagnosed with ALS is variable. While many people live no more than two or three years after diagnosis, "about twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years."
- A small number of ALS cases are attributed to a hereditary gene, though most cases (90-95%) are not. Anyone can get ALS, though it is not contagious.
Still not satisfied? Sorry for not posting a video of me getting wet, but here is a much more important video to watch of a man who has just been diagnosed with ALS taking care of his mother, who also has ALS, so that you can actually see what it does to a person. In it, he talks about why this viral awareness is important to those with ALS: since the number of people with ALS is so small, drug companies don't want to invest in finding a cure. It's not a popular enough disease to warrant treatment. That made me incredibly sad.
I'm making donations to both the ALSA as well as the Michael J. Fox Foundation for Parkinson's Research, because I want to make sure that other organizations and causes I care about don't lose out, and I'm challenging all of you to educate yourselves a little bit about a disease that may not have affected you personally, but seems to be on the tips of everyone's tongues lately, or at the bottom of an ice bucket.
Wherever you find it, that's my challenge to you.