I had heard of ALS, I knew it was fatal, scary, and incurable. One of my closest college friends (and my sorority Big) lost her father to the disease. We've talked about how hard that was for her family and the challenge it was watching the effects of the disease on her dad. I knew that ALS was synonymous with Lou Gehrig's disease and that, ultimately, it shut your body down while your brain stayed in tact.
Cockily, I felt like I knew enough. That I'd participated in the casual fundraiser within our chapter in memory of my Big's dad. That I'd read facts about ALS during awareness weeks. But, like many things in life, I didn't take that step further to learn more and educated myself.
My opinions about the #ALSIceBucketChallenge looked much like those you see floating around the internet in educated -errr, opinionated- articles. Over the course of two weeks, they've varied and changed from the idea of "slactivism" to celerity namedropping to selfish attempts to go viral. WE'RE IN A DROUGHT they say, loud and boisterously, that we're not really doing anything simply wasting water, that it's just a glorified wet t-shirt contest that isn't educating or bringing awareness to anyone. I heard those arguments. And I've ranged from agreement to outrage.
But, like any good ol' wanting to be smart girl, I decided I wanted to figure out how this #ALSIceBucketChallenge started, where it's roots are, and maybe, there, I'd see the value.
It went viral with this man.
If you don't have time to watch the seven minute segment ESPN did on him, here's the short story:
Pete is 29 years old and was diagnosed two years ago. He can no longer walk or talk and requires 24-hour care staff to assist in getting through his day. He's married, expecting his first child, and dying all at one time. That's heavy, heart-pulling stuff when he was just two years older than me when he was diagnosed. Four years older as he looks at fatherhood and fatal effects of his disease.
He's been a face of the challenge -speaking honestly about his experience with the disease, bringing awareness to it's difficulties, and making it relatable to us: a young, athletic, excited generation. The disease is rare, but can happen to any one of us, even a promising baseball player with a bright bat-yielding future.
Originally, the #ALSIceBucketChallenge was both a charge to dump ice water over one's head AND donate to the cause. Like a good old game of telephone, the dares have changed, claiming water or money. The challenge was an attempt to raise funds for research and assistance in medical costs for families suffering through the disease as well as awareness. And, I believe, it's done both as well as coincidentally provide encouragement for the patients and their families suffering from this disease. With a total of $15.6 million dollars raised in just a few months and conversations about ALS surfacing on major news outlets as well as all forms of social media, the challenge seems to be a wondrous success.
Sure, it's not educating everyone, it's not bringing awareness to the masses per say, but it brought both education and awareness to me. And my guess is Pete Frates would be happy that just one person -me- be a bit more educated about an otherwise mysterious disease. And, with that, I'm stepping off my soapbox and back onto level ground; but not without a little encouragement for you to go and google the hell out of whatever might be tugging at that curious bit that lives inside of you.
Oh, also, if you didn't make it through the film: Pete Frates took the #ALSIceBucketChallenge himself. And that's his adorable pregnant wife lifting the bucket for him since he can't do it himself.
And finally, for the sake of a good laugh after a hard conversation, this is my favorite compilation of #ALSIceBucketChallenge fails, much thanks to BuzzFeed.