The Unbearable Iceness of Being

(Sorry I’m not sorry for the pun)

This article, after nearly what? a month? of the Ice Bucket Challenge being “a thing” finally popped up on my dash, and well, it inspired me to do something I usually have no interest in doing: Offer a (light) rebuttal to something I know jack shit about. But, and here’s the kicker, it’s because I know shit about ALS and what it’s like to suffer with it that I feel compelled to comment.

Bo Stern’s post is beyond rebuke, it is beautiful, it is well written and it is succinct. Best of all, it does what the “Ice Bucket Challenge” fails to do. It raises awareness.

My basic knowledge of ALS is this: It is also called “Lou Gehrig’s Disease” after a dude who did sports, it is featured in Tuesdays with Morrie. There, two things.

Unlike breast cancer, which I think needs no more general “awareness” (money to fund research and treatment, a thousand times yes. Awareness that it is not just a disease women can get, yes. What color underwear I’m wearing and don’t tell the guys? No.), the general public could truly stand some awareness about ALS. But does it need the spectacle?

I can respect that, by nature, I am quiet person who likes to keep my business to myself. Unless I have something to gain by putting something out there, I don’t do it. I would have told no one about my grandparents’ deaths if it hadn’t been for the fact that I need to use the bereavement days. Perhaps because of this the idea of anyone filming themselves dumping ice on their head is inherently distasteful to my delicate sensitivities. Even if I do think they world would be a better place if everyone were just a little bit quieter, not everyone is me and I’ve learned to live with that. I know that what is annoying to me might be the best thing ever to someone else.

I don’t know what’s been showing up on everyone else’s Facebook feeds, but well, here is what I have observed from the Ice Bucket Challenge: A lot of videos, where people do not mention ALS anywhere, talk about how they are nervous about doing this, they name five carefully-chosen friends they want to go next, they dump ice on themselves and run screaming off camera. Nowhere do they provide any information about what ALS is, where I should donate, that dumping ice on yourself means you are supposed to donate $10 instead of $100 (learned that Monday of this week. Til then I thought dumping ice on yourself was a “get out of jail free” card). Maybe I just have horrible friends and they do not make up the norm for these videos, but I turned away knowing nothing more about ALS than I did before reading Stern’s post last night.

Awareness? What awareness?

I’m reminded of this strip from The Non-Adventures of Wonderella entitled “The BREAST Intentions” (someone out there is just as punny as me!)

Non-Adventures of Wonderella: The BREAST Intentions

Dumping ice on your head has gotten more people talking about dumping ice on your head than it has about ALS because again, before reading Stern’s post I still knew SHIT despite sitting back and sucking y’alls charity.

Complaining that the Ice Bucket Challenge won’t cure ALS is stupid and ignores the fact that the money collected is going to good use, but don’t claim that this is raising awareness. Are we so shallow as a society that we can’t donate to something because  it’s actually a good cause without prompting? If a donation happens without a giant spectacle does that money still go to research? If a tree…

What if, instead of prattling about who challenged you and who you’re going to challenge next, people made videos where they listed five facts they learned about ALS after being tagged? Yeah, that sounds kinda school projecty, but it would actually raise awareness. You can still dump ice on your head afterwards if that floats your little boat. Or what about the list included in Stern’s post? What if people filmed themselves performing tasks that simulate what it’s actually like to live with ALS and then commenting/donating (just… I’m pretty sure #7 is actually a game called Chubby Bunny and is inadvisable). (Of course, now that I’ve made a Chubby Bunny reference I should note that that ‘challenge’ was just about choking on marshmallows and had no philanthropic component.)

We can’t all be Charlie Sheen (never thought you’d hear that mentioned as bad thing, huh?)

Which is unfortunate because I would love to have 10k to just donate to charity. I am unfortunately having one of those months where $10 could make or break my ability to pay rent (September should be better). Had it not been through the friend who shared Stern’s blogpost, I ALS would have faded from my memory as quickly as the Cold Water Challenge (which, in it’s magnificent awareness-raising, I didn’t know it was to raise money for the  National Fallen Firefighters Foundation or any charity at all until I searched for a link to use in this post).

I am glad that this is getting donations for the ALSA. Truly. But what happens next? What is the big picture? When the fuss dies down, as it inevitably will, will people know anything more about ALS? Will it become “that ice bucket” disease instead of “Lou Gehrig’s?” My initial instinct when faced with these things is to wait for someone like Stern to come along and say “yeah, this is how it is for us.”  But I cannot stop questioning these methods. People nominating very young children for the challenge: are the parents donating? Will this, as Stern hopes “nudge ALS an inch or two closer to the collective public consciousness[?]” If I thought that it would, I would not be writing this post. I am glad that, unlike past “slacktivist” efforts, this has actually (reportedly) raised “millions” for ALS research! I suppose it would be perfectly fair to argue that is better than awareness! Hopefully it is enough to pad their coffers when they are no longer the issue du jour. Hopefully enough people have done their research that they will remember ALSA when it comes time for future donations.

I worry that when we combine “awareness” with “spectacle” everyone looses in the wrong one. Therefore, in addition to Bo Stern’s blog and the ALSA site, I’m going to give you five facts about ALS that have nothing to do with Lou Gehrig or buckets of ice:

1. ALS stands for Amyotrophic Lateral Sclerosis. It is a neurological disorder that causes rapid and severe muscle atrophy

2. While your chances increase if you have a relative with ALS, it is not strictly a hereditary disease and there is no official cause

3. There is no cure for ALS, though doctors can treat or slow the specific symptoms they cannot stop the progression

4. Even though a person with ALS’ body will deteriorate, having difficultly with walking, talking, eating, etc. There mind stays intact

5. There is no specific test for ALS, the diagnosis is reached through observation of the symptoms.

If you would like to read more, here is where I got this information.

I have to mention that, since I started crafting this post, this feature has popped up. I can’t not mention it. If this had been the first video I had seen perhaps I would feel differently. It Stern’s blog post and Carbajal’s video make way for a new norm in this fad, where all the videos start actually talking about ALS, where those are the types of media being shared (instead of say… the one with a fat woman jumping up and screaming every two seconds because she thinks they’re going to dump the water on her too soon?), I will concede that actual awareness is being raised. Until then, this is not the fundraiser people with ALS, or any other disease, actually deserve.

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