[updated Aug. 23 2014]
This is personal for me, so excuse the angry tone and forgive me putting this on a blog otherwise filled with irregular, trite nonsense (or don’t, I don’t really care).
My father passed away from ALS (amyotrophic lateral sclerosis, otherwise known in the States as Lou Gehrig’s Disease). Any terminal illness is in its very nature horrifying, but ALS is particularly cruel in that it destroys your body while doing nothing to your cognitive abilities, so you literally become trapped in your own body. Over the course of three brutal years, my brothers, my mother, and I watched a man who earned his living as a carpenter, handy man, fixer-of-everything, a man who sat behind his drum set every chance he could, a man who could talk your ears off for hours, slowly degrade until he could no longer speak at all, let alone move even a finger. At first, he had trouble walking and was given crutches. We had to drive him to doctor’s appointments because he could no longer drive – a man who spent uncountable hours working on his car, who took pride in driving and teaching me and my brothers to drive. Then he needed a wheelchair. Then he couldn’t move the wheelchair himself. A home health aid was brought in to help take care of him since he could no longer even get in and out of bed on his own. The medication he was on required an IV and we had to administer his daily cocktail of medicine ourselves because the nursing service wouldn’t do it. When he could no longer speak, we communicated using a board with letters on it. We cleaned him up when he couldn’t make it to the bathroom on time; we fed him blended up food because it was the only way he could eat; we cut his nails, trimmed his hair. This is only the tip of the iceberg. On October 3rd, 2006, at the age of 53, he died of asphyxiation, due to ALS, in a hospital bed in the middle of the night, alone.
The picture I hope I’m painting for you is not a fun one. It is ugly. It is terrifying. It is sad. It should be. It is not a fucking photo op of some asshole tech billionaire getting ice poured over their head. For what? ALS awareness? What the fuck is that? This isn’t the flu, being aware of ALS doesn’t mean people are less likely to get it. You think because more idiots are aware of the disease that somehow makes it better for the people who have it? Granted, the thought of Mark Zuckerberg cold and uncomfortable for even a split second could give anyone a brief moment of joy, but really? You want to be aware of what ALS is? Go read my last paragraph again. Go look up the stories of other people who have, or had, the disease. Fucking hell, you could even go read Tuesdays with Morrie. Some celebrity dousing themselves in ice has about as much to do with ALS as them taking a shit onto a plate (#PlateShitChallenge!)
This is not ALS:
This is ALS:
The ALS Association claims it has raised $2.5 million more because of the campaign. Great. I’m all for an increase in donations, but the assholes getting their names splashed all over the news for pouring cold water over themselves make more than that in a day.
Here’s an idea: Instead of trivializing a horrific disease with an absurd marketing stunt/popularity contest, let’s have all these wealthy ‘philanthropists’ just donate a couple million each to ALS research directly and cut the self-serving bullshit.
UPDATE Aug. 23, 2014: First, thanks to everyone who’s read my post. I wasn’t really expecting it to get the audience it has received.
I’ve gotten a lot of comments on this post, on Twitter, on Facebook, etc from people who feel the need to defend the Ice Bucket Challenge. Everyone is entitled to their opinion, and I understand that there are other families who have suffered through ALS that have no problem with the Challenge, but I have a few points I’d like to respond to and then I’m done.
- The ALSA now says it has raised over $60 million. This is great. It doesn’t change anything else about what I’ve written in my original post.
- Further, I can virtually guarantee that other ‘ALS families’ that support the Ice Bucket Challenge would support a different fundraising campaign that was more dignified and did more to advocate for the disease.
- I’ve had people tell me that I’m “missing the whole point of the Challenge”. First, if I’m missing the point of the challenge, can you imagine how many people who don’t know anything about ALS are missing the point? And what is the point? To raise money and ‘increase awareness’? What does that mean? So now you know that there’s yet another horrible, terminal disease out there. Maybe you donated $100. Are you going to donate again next year? Now that you are aware of ALS, are you going to fight for stem cell research, better funding for the NIH? Will you go spend time with someone who is suffering from the disease and could use a friend a lot more than they could use videos of someone being drenched in ice water? In a few years, if someone mentions ALS, how many people are going to think of ice buckets instead of a debilitating and deadly illness? Being aware of ALS is literally the least you could do. I genuinely respect the ALSA and their work, but in this case I think they’ve made a big mistake in not tying real information and advocacy into a fundraising campaign. They chose to make a fun game that could easily go viral, a publicity stunt that smacks of corporate marketing strategies, rather than something that has any heart, empathy, or dignity behind it.
- Before you defend the Ice Bucket Challenge, are you doing it because you genuinely think it’s the best way to advocate for and help fight ALS? Or are you doing it because you’re mad that your fun got spoiled?
- tl;dr The ends don’t justify the means.
And finally, I’m turning off comments on the post and rejecting a few particularly nasty ones that have already been written. I’m not interested in debating random people on the Internet (nor do I have the time to respond to each comment), I don’t appreciate being told to ‘get help’, therapy, etc etc (you don’t know me – what a strange thing to tell someone), and *gasp* I don’t feel like defending myself for being angry about something I care about. I cursed a bit, I’m not some scary monster. Thank you to everyone who commented positively and respectfully.
Another brief update (Sept. 4, 2014):
Here’s another like-minded perspective from someone who’s battling ALS right now. If you’re really interested in ALS awareness, I encourage you to read through Anja’s blog.
My brother Noah and I recorded an episode of our weekly podcast yesterday and touched on the challenge. I addressed some more of the arguments I’ve heard in it.