Open Letter to those Criticizing the Ice Bucket Challenge

Dear Ice Bucket Challenge Critics,

I’m writing because I’m intrigued, confounded and perhaps a tad repelled by some of your censure of the Ice Bucket Challenge.

My bafflement is not directed to views labeling the challenge “silly” or a “show off tool.” I also believe that dumping a bucket of icy water over one’s head (floating ice in it and everything!), while the one in question shrieks is a bit simple indeed. But that’s where the similarity between our opinions of the challenge as a whole ends.

You see, in my heart of hearts—and in my brain, in case you’re wondering—I believe that certain illnesses, and the immense hurt they promise to all those affected by it (patients and those who love them alike), are so seriously devastating that the heart and soul need to break the ice before even touching the topic. Some of us need to grab hold of something we can control, before we can dig out the strength required to face the helplessness brought on by diseases we are yet to learn how to cure… to withstand the agony spawned by the effects of witnessing the premature death of someone we love.

This might not make sense to some, and that’s perfectly all right; often times we need to fall and bleed a little before we understand why someone else screams after their skull hits the pavement. “No one learns with someone else’s head,” one of the wisest women I ever met used to say. But words have power… So I wanted to share some words, which I hope will illustrate why things like the Ice Bucket Challenge are of great importance to some of us.

A good friend of mine contracted HIV while doing infectious diseases research overseas. His infection was asymptomatic, and perhaps because of it he didn’t discover that he was positive until after the virus had already claimed his wife. She developed AIDS, and lost the fight against an army of opportunistic diseases six years later. After the loss, my friend wanted to let himself die. But his wife had blessed him with two daughters before she traveled to the Summerlands; and deep in my friend’s soul he knew that following his wife wasn’t an option.

When my friend noticed that depression was robbing a nine and an eleven year old of their father, he did everything he could to deal with the loss of his wife: he went to therapy, he started working for an organization that assisted individuals affected by HIV and AIDS (that is how we met), he volunteered to educate those who didn’t understand the virus… But he was still depressed. It wasn’t until he started running to raise money for HIV research that my friend began to find purpose again. 

The High Heel-a-Thon had been one of his late wife’s favorite running events. Before learning about my friend’s circumstances, I (being a very serious Marine and all) spent many hours telling every high-heeled runner I had ever met how ridiculous it was to run in shoes that promised nothing but a twisted ankle. “It is unsafe. And it doesn’t really mean anything,” I said to anyone who approached the topic in my presence.  

And the day my friend asked me to jump into a pair of heels, dress up, wear makeup and run a high-heeled race to celebrate the memory of his wife with him, I didn’t even blink before I said, “Of course!” Heck, I would have run topless wearing a sign that read: I Whore My Running Miles for a Cure, if I had known that it would be the thing to bring the light back into his eyes.

I ran slow in heels. I felt silly the entire time. I ruined a perfectly awesome pair of shoes. And I felt like a heroine every time I saw him grinning like a happy idiot. We reached the finish line laughing like lunatics (and maybe crying a bit).

The things we do, or how we do them, won’t always make sense to every mind. Events such as the High Heel-a-Thon, Save the Tatas, and the Ice Bucket Challenge might seem “silly” or look like “attention-seeking” tools, but to some of us they represent hope and a way to stop feeling so damn helpless. A person might not be able to save the world by dumping a bucket of freezing water over his or her head, but in the hearts of many this act lights a beacon that whispers: I know. I see your pain. It scares me, too. I don’t have all the answers; none, actually. But know that my soul walks with yours. And here are a few dollars for research.

So dear Critics, it’s quite all right to think that the Ice Bucket Challenge is ridiculously dumb, a waste of time, even an insult to the way you view the world; it’s perfectly fine to voice your outrage at the sight of actions that don’t affect you in the least; you, after all, are the bearer of the freedom of speech, which so many of us have given years of our lives—some all of their lives—so that you can have. Still, I needed to let you know that I don’t understand your resentment. I would really like to make sense of why something that brings hope (even if such hope only brightens the life of one person whom you have never met) makes you so angry. How does your negative criticism of these sorts of efforts bring anything positive to your own life?

Hoping for Elucidation,

Magaly Guerrero

My running in high heels didn’t save the world. To be honest, the morning of the run found me feeling a bit dubious about the whole thing; hence the half-smirk on my face. But the silliness brought laughter to a friend. And sometimes, that is all we can do…

60 comments:

  1. And, this "stunt" has raised a ridiculous amount of money in a short time. So, Huzzah! I am sharing this my friend because I have felt the same way and was totally baffled. <3

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  2. What a wonderful way to describe something that others (like myself up until this very moment) didn't understand.

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    1. We've all been there. Me too many times... And the more I live, the more I know that the times will just add up...

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  3. Let me see? Ice cube, cold , bucket of water over head will give you a mear minuscule peak into this soul sucking disease, also to embarrass or not the pharmaceutical companies who don't see profit in this disease....
    If it wasn't for the internet and social media, IGNORANCE wouldn't be assaulting intelligent minds.
    ( on many events of these days)
    Those who know what is right , do right, I would rather be ridiculous and IGNORANT!
    Love Ya! xoDebi

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    1. We can be ridiculously ignorant together! And cackle while we are at it. Cackling is always good. ;-D

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  4. The ice bucket challenge seems like a mad crazy stunt to me and I admit it isn't something I couldn't do. Yet I've enjoyed watching the videos that have come up on my FB feed, everyone who's done it has done so with a smile and enjoy their moment, so what if it's silly or showy, it's raising money for a good cause. I've also had a giggle over all the melted witches pictures. I give full kudos to all those who have taken part in the challenge. The amount of money they have raised is outstanding and everyone who has done it should be proud they've been a part of that. Hopefully that money will bring help to many people. Good luck and well done to all who take the challenge.

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    1. Exactly! I can't do the challenge--my doctor would probably murder me, if I did. Like you, I think that a nice "Gook luck and well done" message to the participants is in order. If not, we can always should to stay quiet...

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  5. Very, very well said.

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  6. I have loved watching the challenge, and seeing the numbers rise rapidly on the donations going to ALS research & care. I read something that approx $30,000 was raised last year for the organization at this time. This year...about 5 million. It IS a successful campaign for so many reasons. And the water waste that everyone is panicking about? People waste more water washing their cars or doing laundry.

    GREAT post!

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    1. Water waste? Wow! I hadn't actually heard that. I can't believe someone would actually argue that point. Some people's children...

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    2. On one thread I read someone complained that the water used should be packed up and sent to Africa instead *facepalm*

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    3. I hope they weren't serious. I really do...

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  7. Best explanation I've read! Well spoken Magaly and may we quickly find a cure for that dreadful disease!

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  8. Thanks for this, Magaly. It is true and wise, and I needed to read it.

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  9. You took the words right out of my mouth Magaly, thanks you; gonna share this with a few people.

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    1. Great hearts and all, you know?

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  10. You're absolutely right, Magaly -- great post! If some harmless fun raises millions of dollars for a good cause, then why not? Judgy wet blankets need to lighten up, sheesh.

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    1. "Judgy wet blankets..." You always come up with the coolest word yum...

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  11. Magaly, as always your words are so well placed. You have stated what so many of us feel and you do it so eloquently. We all need a hero and we all need someone to stand for us. I agree that to some the ice bucket challenge may seem silly, but if you or your loved one were affected by ALS you would appreciate the out pouring of support across the world!

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    1. Life doesn't always offer a good tool for us to show solidarity to our fellow man. So I'm always impressed (and grateful) when a person (or a million people) get creative. We all need someone to walk with us...

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  12. Thank you for taking the time to write this fabulous essay that will turn nay-sayers around.

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    1. I sure hope so. Or at least, for someone to come up with an argument that isn't laced with so much discontent over an issue that shouldn't evoke such negative emotion.

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  13. Hear, hear!

    I did the ice bucket challenge and raised a bit of money. I was happy to do it. I'm happy for most charities and causes, and my support of one does not mean that I've stopped caring about others.

    ALS is an orphan disease. There aren't enough sufferers to warrant the billions of dollars needed to research a cure. They don't think it would be profitable.

    But if you've ever seen someone die of ALS, you know how important it is.

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    1. I watched a man go from 193 lbs to 138... It was devastating to watch. And I can't even imagine how it was for him.

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  14. Beautifully written, Magaly. I am all for anything that brings awareness and donations to illnesses and need.

    My problem with the "viral-ness" of this particular thing is that I'm hearing tons about the ice bucket and very little about the ALS awareness. At my own work, for example, all the so-trendy-it-hurts twits are all about it, but they couldn't tell you what ALS stood for for love nor money. And they have absolutely no idea who Lou Gehrig is either. They don't even know what the ice bucket challenge has to do with those either. So I guess my problem is really with the unelightened twits I work with.

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    1. I understand completely, Jennifer. More than once, while working as a case manager, I sat in front of young people who would say something like, "I can't be infected with HIV because I only have oral sex." They were usually wearing a red ribbon. It is beyond frustrating.

      I know that people know little about the ALS, but just like a child's hug lifts the soul of a depressed person, people don't necessarily need to understand everything in order to offer a bit of light to another. Please don't think that I'm promoting ignorance: lack of knowledge is the scum of the universe. What I'm saying is that if 5 people feel the need to google ALS after reading about the million individuals who completed the Ice Bucket Challenge, then that is better than nothing.

      In the end, awareness--like everything else in life---must begin somewhere...

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    2. I bless the day I stumbled onto your blog. *hugs*

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  15. Thank you for this post. My uncle has ALS. He was diagnosed last September and is now in a wheelchair and losing the use of his hands. He used to put me on his lap and talk about books when I was little. He was the only one who could get me to take the medicine I hated that helped me breathe when I was sick. I could go on and on, I love him very much. If people throwing ice water over their heads and posting videos of it increases donations to find a cure for this horrible disease, I have no complaints. How could I when it could prevent more people from going through the journey that my family is facing now?

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    1. Oh Kim, I can hear the tears through your words. This is such a terrible illness. This damn thing is a thief. I pray for a cure, and for the pain to be soothed...

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  16. If there was something like the ice bucket challenge to make people understand, for just an instant, what it is like to live with depression - I would spread the word to everyone I met. But I am always aware of the vitriol people are ready to spew onto anything (even innocent and beautiful things) on-line, so this doesn't surprise me.

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    1. I echo your words when it comes to chronic pain... and to the periods of depression that often come as a symptom for some sufferers. And about certain people online joining the beating of something that doesn't affect them at all... well, I'm not surprised either. Just a bit disgusted.

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  17. Thank you for saying what you have said here. Amen! (Since my name will likely not show, due to weirdness with my google account, this is Francesca De Grandis. Hiya.) ❤️

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    1. You are very welcome, Francesca. I'm glad this post has echoed the thoughts of so many. It makes me feel warmer towards my fellow humans. ;-)

      And we all know that Google is nuts.

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  18. If it has brought more attention to an otherwise lesser known disease and if the attention helps garner money for research and help then so what if it's silly. silly is fun. but...I won't be doing it. I have no desire to douse myself with a bucket of ice water.

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    1. Indeed!

      I can't do the challenge. My doctor would probably beat me senseless. And my Caribbean blood doesn't much care for icy water. But I applaud every person who has done it. May more dump the bucket every day... and tell the world what it means, too.

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  19. With the ice bucket challenge it has opened up conversations, brought smiles, and raised money for a horrible disease. My cousin died of MS and I would run in heels through ice water if it would have spared her. Laughter breaks the pain connection...at least for a while. Who wouldn't want that?

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    1. It's exactly what I mean. We go around saying things like, "I would do anything, if it would make the world a little better." Then the opportunity presents itself and some of us just moan and moan. Makes no sense.

      "Who wouldn't want that?" indeed.

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  20. It's hard for me to be calm and rational when I see people doing their best to drag this down, whether it's by simply spreading misinformation about some of the charities involved or by sneering disrespect towards people taking part in it. As the friend of someone who died of ALS last year I can say that the laughter and awareness raised not only cheered me, but my friend's family. And the amount of money raised is nothing short of miraculous.

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    1. When it comes to certain issues "calm" is just a fantasy other people can make into reality. For instance, when I hear a pile of so called human feces say that "people who join the military did it because they were too dumb to go to college" or the same pieces of crap suggests that military persons who get injured "need to stop their whining because no on forced them to fight in a war," I just want to strangle the closest idiot. So that's a conversation I can't participate in.

      I spent almost a week thinking about this post. And my first draft sounded like screaming... So yep, it's hard to be calm about this one...

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  21. This is excellent Magaly! I don't understand how people can be so negative to something that brings awareness for a disease such as ALS. Then I remind myself that people can be so negative in general, especially if it doesn't concern them.

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    1. "people can be so negative in general, especially if it doesn't concern them." This reminds me at certain individuals' ridiculous possessions when it comes to same sex marriage.

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  22. Well said my friend! I agree with everything you wrote! Why do people have to put negativity towards something that is doing so much good!!!
    Big Hugs xoxoxoxo

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    1. Because many people are totally nuts. That's my very scientific conclusion!

      Kisses and Hugs! ♥

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    2. I agree ;o)
      Kisses and Hugs ;o)

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  23. Thank you Magaly this is beautiful!!!!

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    1. Glad you think so.

      You've been missed around these parts, my the way!

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  24. This challenge has been a wonderful fund raiser...plus it is fun for those doing it...nothing wrong with that...

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    1. Nothing wrong, indeed. And so much right... ;-)

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  25. I think it's great the amount of awareness this Facebook fad has raised for ALS research, not to mention money, though it is unfortunate that a lot of the people (at least on my Facebook) doing it are probably not even donating and are just doing it to dump a bucket of ice water over their heads on camera lol. Any publicity is good publicity though :P

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    1. Well, the 70 or so million says that someone is donating, so wooohooo! Let's hope for more good. ;-)

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  26. You have put into words what I have been trying to express to all those on my friends list who've criticized the challenge. I myself did it and donated what I could to the cause. I do everything I can for these charities and donations when I can. Maybe not as much as I should but definately when it hits home for me. Thank you for your wonderful words of wisdom :)

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    1. I think this is one of the most wonderful things about the internet: it allows us to see that many of us share such similar ideas... then we can voice them together... and after that, the universe is the limit... ♥

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  27. I did it with my magazine staff. I was excited once the editor said she was covering the donation part. I have read and watched videos and posts about people that ALS has touched and how the ice bucket challenge is making them happy that their disease something that is under talked about and unknown is know in the forefront.

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