The ALS Ice Bucket Challenge, and Why It’s Important

For the last 2 or 3 days, the internet has been inundated with videos of celebrities, YouTubers, bloggers, and even just regular Joes doing this challenge. And it’s been quite amusing to watch some of these, especially the people who put some thought into it and made it funny or interesting. Benedict Cumberbatch was especially memorable, getting dunked not one, but SIX times, including once in the shower. Meow.

But the internet can’t seem to let anyone have a good time for long, someone was bound to start an anti-ice bucket challenge rage. And sure enough, these started popping up all over the place:

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Besides the fact that they pull all the fun out of something amusing that also just happens to have a good cause, it’s also a bunch of hypocritical bullshit. The people posting these aren’t third world people, they’re people like us, with all the luxuries we have. If you’ve ever stayed in the shower for 5 minutes longer than it took you to wash yourself, then you just “wasted” more water than Benedict did in his whole video. So get a little perspective, hunh?

The Ice Bucket Challenge IS important, because for all the people who do it only for the gag of getting doused in freezing water, there are those who are really doing it for the cause. Benedict talked about ALS and had a sign with the info you need to donate money. Lady Gaga said nothing, but donated 10,000 of her own dollars to the cause (and her video is the shit, too). Even the ones who say nothing of ALS are still spreading the awareness. It’s not a very well known disease, and, like other rare illnesses, cures are long in coming because there’s not enough money to be made if only 30,000 people in the world are sick with it. So really, anything that can be done to get things rolling in finding a cure is good.

I had a more visceral reaction to that photo than most people, I guess, because I know what it’s like to have a disease that gets no funding for research. I’d dump a million buckets of ice on my head if it meant finding a cure. Seven years ago I got diagnosed with Lupus. Not much is known about it, why it happens, where it comes from, even exactly how it will evolve (devolve?). It’s an auto-immune disease, like Crohn’s or AIDS (though Lupus isn’t transmittable), that seems to attack almost whatever it feels like. The full name is Systemic Lupus Erythematosus, short-formed to SLE. The most common form (discoid) is the one that attacks the skin, causing painful (and yes, ugly) red rashes on the skin, usually the face, neck and/or back. At the moment my rashes seem to be mostly controlled, but every so often I still flare up. Next is musculoskeletal SLE, which I also get, which is inflammation of the joints causing pain, which is sometimes so bad I can’t walk on my own. On top of the physical distress, patients with SLE also often battle depression (a disturbing 60% of patients), chronic fatigue, insomnia (which pairs awesomely with the fatigue, let me tell you), anxiety, confusion (also called “brain-fog”), photosensitivity, and even psychosis. And that doesn’t count the side effects from all the medication you have to take to try control it.

Thankfully, “all” I have for moment is all that (minus the psychosis, I think :-p), and if I’m “lucky” it’ll plateau here. But SLE can be fatal. If it decides to attack my heart, I could be in for a short ride. I still haven’t decided which straw is shorter, quick death, or life with very limited ability. I’ll let you know when I figure it out.

So that’s why I think raising awareness in any form, even in a silly challenge, is good. A lot of people who didn’t previously know what ALS is now know. And the campaign has raised a ton of money, over 53 million last time I checked. That’s amazing. More than amazing. Hopefully that money will help find a cure, or at least something to help improve quality of life. I know what it’s like to live in fear of what your body is going to do. No, my physical body will never get as bad as ALS sufferers. I can move and, no matter how much it hurts, I can walk. But really, we’re not going to start the “who’s suffering more?” game. Nobody wins. Any disease that takes away a person’s ability to do things on his or her own is going to be that much harder on the psyche.

 

This video is from a young man named Anthony Carbajal. It will change the way you see the Ice Bucket Challenge. It starts as a funny and silly video, but things quickly get heartbreaking. I was literally in tears at the end, because so much of what he feels, I feel. And he’s so very brave to face the camera as he’s talking about it. I’d originally planned to make a video about this, but no, I’m not brave enough to risk crying on camera. My hat’s off to you, Anthony. And my deepest sympathies.

So thanks everyone for taking the time to read this. If you haven’t already, go on over to the ALS Association website and give a little something if you can. You can donate any amount starting from $5 (on credit card, checking account or PayPal), and if that’s all you can afford, that’s fine. Every little bit helps.

Your regular, light-hearted programming will resume normally tomorrow. Stay tuned!! 🙂

M.

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