I figured all it would really cost me is a little momentary discomfort. I could just give money, of course, which was the heart of the challenge. You either put up or pay up, so that anyone, no matter who they were or where they were in their lives, could contribute. But money is only half the battle. We learned that in the 80s with AIDS. It took education and awareness to turn the tide, and that's true of anything that demands true change.
As a minor public figure, I figured I could use my brand to further the cause. I went online and learned about ALS, which, to be honest, I had never researched before. It hadn't touched me personally (thank God,) so I had no real impetus to do so before. This is true for so many things in life. We learn based on opportunity and interest, and the #IceBucketChallenge provided me both.
What I learned was heartbreaking. ALS stands for Amyotrophic lateral sclerosis. It has no cure and is 100% fatal. The average patient will die within 2 to 5 years of the diagnosis as they are virtually buried inside their bodies through paralysis until ALS eventually attacks their respiratory system, where they usually die of respiratory failure or pneumonia.
While this is dire, I had never heard about it. I knew there was something called Lou Gehrig's disease existed, but that was the extent of it. Likewise there is still a lot to learn within the scientific community. Lou Gehrig died in 1941, but the first drug used that altered the course of ALS wasn't approved until 1995.
That's a long fucking time.
That was why it was important not only to put money behind this cause, but to tell people about it. Every 90 minutes someone is diagnosed with ALS. And someone also loses their battle to it. This is unacceptable to me.
I decided to use my public image to further that important cause.
I didn't do it because I wanted attention. Anyone who knows me can tell you that kind of thing sends me promptly into major anxiety attacks. I fight a fairly disabling social anxiety disorder, where any attention paid to me personally is extraordinarily uncomfortable. This is why I don't post a lot of personal pics of myself or post a lot of videos of me doing anything, and generally only go where I'm asked (rather than ask to be included.) I posted this video (and did this challenge) in SPITE of those things. Why? Because I couldn't do nothing. Once I knew there was a problem of this magnitude, I knew I had to play some small part in making a bad thing better.
That is the heart of progressiveness. We're not just content to complain and to whine. We are constantly looking for a way to make a difference.
And by all accounts, the #IceBucketChallenge is making a huge difference. As of today, more than $40 million has been raised for a cause, which more than doubles what it made all of 2013. Take a minute to let that sink in. The same social media that usually tracks celebrity gossip, cat videos and current TV/music and movies became a driving force for ALS awareness by raising $8.6 million in one day.
That is incredible.
And yet... unbelievably... this challenge walked hand in hand with controversy. Participants were virtually shamed by other celebrities and social media leeches who use current trending topics to sharpen their hipster brand with snarky criticism. It was criticized for not being used correctly, even though it was even more successful than anyone could ever dare dream. People quickly grew tired of the constant videos in their feed that interrupted celebrity gossip, pop culture news, bitching and whining about the government and politics and those all important pet videos. They were quick to voice their discontent about how inconvenient it was that something positive and uplifting was cluttering their feed.
People, I should say, who still have the use of their hands to type out these messages, who aren't facing a shortened lifespan that demands we treat each moment as a gift because there just aren't as many out there as we had hoped.
Ask yourself what you might be complaining about if you knew you were going to die in two to five years. I think you might find that list would change dramatically from the current status quo.
Some turned it into a weapon of political attack as a joke, which did absolutely NOTHING to benefit the cause, and only worked to keep people divided and hateful. Which is ironic, if that's the kind of public figure you were satirizing at the time.
If you click on the #IceBucketChallenge trending topic, there are those who have leeched onto the trend to assert their piousness and cynicism in some kind of dickhead hipster move. It takes absolutely NOTHING to type out a snarky 140-character criticism of something you know nothing about, just because you want to throw a little shade at something that is popular.
"I sure hope the people taking the #IceBucketChallenge are actually donating money."
My question is...Are you?
Newsflash: if you dare criticize something like this without donating to the cause or even do a little research to find out about ALS and share what you've learned, then YOU are weakest link in this scenario. YOU could be the one donating or spreading awareness, in other words ensuring that those things you "fear" are covered, but instead you'd rather chastise or complain. In the end, what has your negativity truly helped?
It certainly hasn't raised $40 million dollars.
Instead, what you're really doing is saying, "Yeah, there's a problem. I hope someone ELSE is taking care of it so I can sit here and be dismissive and critical."
Then there are those who try to limit what we can do with some senseless and ridiculous either/or argument, like this particular meme:
But again, pointing this out and sharing this pic solves NOTHING unless you provide alternatives. Post links to donate to charities who provide clean drinking water for kids in Africa. (I have raised money for Charity: Water and regularly post it to drum up donations.) Or be a revolutionary and post links to BOTH Charity: Water and the ALS #IceBucketChallenge. I know it doesn't seem so with this limited meme, but you really CAN tackle these two problems simultaneously.
But whatever you do, do something productive. Say something productive. Organize for your own pet charities or get the word out about those things you feel need attention.
In other words...
What an ALS Family REALLY Thinks about the Ice Bucket Challenge
Nothing you do to help someone else who is suffering is wasted. So do something. Please.
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