In defense of the ALS Ice Bucket Challenge

I’ve come across a blog post in the Detroit News that was published Monday. It was written by Kathy Hoekstra, a Michigan graduate and communications manager. It upset me.

I shouldn’t have to defend the ALS Ice Bucket Challenge. By now, nearly all of you know and understand what it is all about. You’re challenged by someone you know to dump a bucket of ice water on your head and then you nominate someone else to do it. Simple. All to raise awareness for this awful disease.

My dad passed away from Lou Gehrig’s Disease in July of 2012, fewer than two years after he was diagnosed. I’ll never get over it and I’ll never understand why it had to happen to him. It will haunt me till the day I die.

So when Ms. Hoekstra asks, “Does Stephen Hawking care if you dump ice on your head?” it’s easy to see why I’d be upset.

Let me tell you something. If Stephen Hawking – who has lived with a motor neuron disease damn near similar to ALS for more than 50 years – is anything like my dad, I know that he cares.

For more than 50 years, Stephen Hawking has been wondering what he did to deserve ALS’ wrath. He’s sat in his wheelchair, day after day after day, likely wishing he could hear the sound of his own voice come out of his mouth instead of in his mind. He’s yearned and desired to breathe like a normal human instead of through a ventilator. Stephen Hawking, one of the most brilliant scientists in the history of the world, has been forced to watch his mind grow while his body seemingly decomposes right in front of his eyes.

I’ll bet that Stephen Hawking has spent hundreds if not thousands of hours wondering if there will ever be a cure for ALS. Wondering what the day will be like when a cure is found. Wondering if it will happen in his lifetime, or wondering if it will take another lifetime.

If Stephen Hawking is anything like my dad, and like most ALS patients, he cares.

An amazing benefit of the coping process is that we learn about these diseases and conditions.

This is 100 percent true. Before my dad was diagnosed, all I knew was that 1) it was going to kill him, and 2) Lou Gehrig had it. As the disease wreaks havoc, you learn more about it than you want to know. The disease is nightmare inducing and takes you to the depths of hell. It is the worst thing in the world.

Did you know that ALS has been around since 1869 and still has no treatment options? That there is no clear cut way to diagnose it, other than to rule other diseases out first? That two out of every 100,000 people will get the disease? Or that 30,000 Americans are living with it right now?

But what has the ice bucket challenge done? Educate people on these facts.

We raise money for research, treatment and help for the victims and their families. This involvement helps us feel like we are somehow making a difference — if not for the person who suffers, for whom it might be too late, then for those who follow.

Then just stop the article here. With a disease that has no cure, ANYTHING that’s done can make a difference. Yes, the difference made by taking the ice bucket challenge often isn’t tangible to the person taking it, but I guarantee that it is to someone who has ALS. The whole point of this raise awareness and raise money – anything makes a difference with this disease.

And any of us who have ever worked in the media get involved ten-fold as participants and storytellers to these efforts. The more gimmicky, the better, right? Raise your hand media friends if you have ever spent time in ‘jail’ to raise ‘bail’ money for the March of Dimes? Or relayed for life? Or shaved your head to conquer kids’ cancer? Or sat up on a freeway billboard until people coughed up enough money for you to come down?

How can you trivialize things like that? As “storytellers,” those in the media should be able to see the passion behind raising money for March of Dimes. The dedication it takes to participate in Relay for Life. The bravery displayed each time someone shaves his or her head in honor of a friend of relative with cancer.

Yes, there are idiots out there who have done the ice bucket challenge as a way to make themselves more popular on social media. Congrats to them. But the underlying point remains. Each time a person posts an ice bucket challenge, SOMEONE out there learns about ALS. One more person than before is more educated about this stupid, stupid disease that has stripped lives away from the greatest people on earth. One more person makes a donation, or decides to get involved with the ALS Association.

So, yes. With all due respect to the celebrities, Gov. Rick Snyder and many of my colleagues who have taken the “ice bucket challenge” to raise money for amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease, it has struck a nerve. An article in Slate explains:

“As for “raising awareness,” few of the videos I’ve seen contain any substantive information about the disease, why the money is needed, or how it will be used. More than anything else, the ice bucket videos feel like an exercise in raising awareness of one’s own zaniness, altruism, and/or attractiveness in a wet T-shirt.”

I would argue nothing has been more influential in raising awareness about ALS than celebrities doing the ice bucket challenge. To say it strikes a nerve is, in my opinion, vein.

More people now know about ALS than ever before. For a disease that so many people know so little about, awareness is everything. As far as the Slate article goes, well, it’s Slate. Maybe my mindset is different than the author’s in that whenever I see a video, I think of the impact it could potentially have, instead of what’s being said in it. Most of the “substantive information” is likely relayed before the actual challenge is filmed. I just went through this with one of my roommates. We talked about what ALS is and my experience with the disease before he doused himself with ice water. Chances are, the people he nominated will do the same thing.

This is all designed to get the ball rolling. Dumping water on your head isn’t the cure to ALS. But it’s a start. Just under a month ago, I was still explaining the disease to people. Now, practically the entire continent at least knows what ALS is. Progress is a good thing.

The writer goes on to explain that some pro-golfers started the ice pail craze with the intent to simply get video of themselves doing something silly, “the charity part was an afterthought” and ALS was an AFTER-after thought at that. The Today Show’s Matt Lauer donated whatever money was raised from his ice shower went [sic] to a hospice program.

Well, former Boston College baseball player Pete Frates is credited with starting the challenge, not a bunch of golfers. If you want to cry, watch ESPN’s incredibly emotional piece on Frates and the challenge here. Matt Lauer is one of the most famous people on TV and did the challenge. Yeah, he probably should have donated to the ALS Association, but as I said, it’s awareness.

Although the ultimate use of this money is still rather murky to me, I’m not disparaging the $2.3 million raised for ALS. ALS is a horrible, horrible disease, an awful death sentence that typically stretches about five years. For the cause to have raised $2.3 million, compared to $25,000 at this time last year, is fantastic.

The ALSA’s expenses are outlined here. It has also reported that $15.6 million in donations have come in since July 29. There have been a total of 307,598 new donors. For ALS, those are astounding numbers. It’s fantastic. Why was this article written?

Has anyone asked Stephen Hawking what he thinks of people subjecting themselves to two seconds of icy discomfort for ten minutes of attention? I bet the renowned physicist and cosmologist would give us a science lesson of what happens to the ice crystals when they hit Lauer’s bald head. Or the cosmic reaction of ice water dripping down Fox and Friends’ Elisabeth Hasselbeck’s hair. And quite frankly, I’d be more interested.

This is almost insulting. More than $15 MILLION has been raised in under a month and you think Stephen Hawking, the second most famous person to live with the disease other than Lou Gehrig himself, cares more about ice crystals or whatever than that? Is this for real? I would love to know what Stephen Hawking thinks about the money that’s been raised for the cause, or the awareness the challenge has brought. Hawking has been the subject of jokes for years simply due to bad luck. The fact that this author cares more about Elisabeth Hasselbeck’s hair says a lot in my opinion.

Please, dump the ice bucket. Ice cubes melt in mere minutes and so will this fad. Here is a far more effective “challenge” to raise awareness about ALS that will leave a life-long lasting impression on everyone who tries it. Lauer, Hasselbeck, Oprah, Bill Gates, Lebron James, Gov. Snyder — everyone:

• Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
• Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
• Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
• Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.

I’ve long been on the fence about suggestions such as this. I wouldn’t wish ALS upon my worst enemy and while one could temporarily walk in an ALS patient’s shoes by following what’s above, no one can enter the mind of someone stricken by the disease and truly know what it’s like.

I saw my dad’s physical reaction when he could barely stand one day at Niagara Falls. I saw the look on his face each time he or I had to explain why he needed to enter a building with a broken hockey stick to hold him up. I saw the pain in his eyes every time we had to load him into our conversion van.

But I’ll never truly know what he was thinking. I can take a good guess, just like I can guess why Stephen Hawking cares about the ice bucket challenge, but I’ll never know exactly. As I’ve learned, living with ALS requires a shift in mentality. No longer can things wait until tomorrow. The sand in every human’s hourglass is set to run out at some point; for ALS patients, the sand seems to drain at the speed of light. Life deteriorates one day at a time, but one thing remains: hope.

For a disease that’s so tormented, those who are forced to live with it often are the ones with the most hope. Hope that one day ALS will be a distant memory and that precious lives won’t be taken from us when these people have so much more to give to the world.

That’s why I will always defend the ice bucket challenge. There has never been a better month for ALS awareness, research, and fundraising, and sometimes all it takes is a glimmer of hope to change the world. I believe that one day there will be a cure for ALS, and while some may disagree, every person who has posted a video of themselves pouring water on their heads can say they played a part in defeating one the world’s most devastating forces.

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39 comments

  1. My name is Kim Dondlinger. You can find my Ice Bucket Challenge on my Facebook page if you care to watch. I loved your article. My father and my brother and my aunt have died from ALS. Another aunt and my uncle are currently battling ALS. I and my sister and our children have a 50/50 chance of getting ALS. Whoever that person was that belittled the effort being made to raise awareness and funds for research hopefully changes her tune. I know the pain of your loss, and I respect you taking the time to write this wonderful article!

  2. Reblogged this on Marriage, Love, and Writing and commented:
    Not sure about this reblogging thing, as I’m still new around here. However, I feel that this should go around the globe a hundred times, so I wanted to share it myself. Shame on Hoekstra for being so callous. ALS needs more awareness and certainly any disease needs funds to find a cure. Perhaps the ice bucket challenge is not going to lead to a cure, but it has certainly helped raise awareness [and dollars] to get a little closer to it. I will be participating shortly as my husband has been selected to participate and has already informed me that he will be calling me out later today. [video to follow either this evening or tomorrow when it is done].

  3. The only thing that bothers me relative to the Ice Bucket Challenge is the list of politicians who did it and also cut funds for ALS. And even that is not about the challenge. It’s about them. Anything that raises money and awareness is a good thing. It’s a horrible, horrible disease. Even in the comments here, I have learned something from Kim I did not know – that ALS could strike so devastatingly within a single family. Thanks for telling your story, Nick, and giving other people the opportunity to hear it, and share their own.

  4. Good work. With every human endeavor, you have imperfection: inevitable. One can focus on the negatives, or on the positives. In this case, we see a most unusally effctive fundraiser. Many involved have unlterior motives, of course. Who cares? Results matter far more than purity or perfection. Most fads accomplish basically nothing; this one has not yet ended, and has already succeeded far beyond most such efforts.

  5. Reblogged this on Becoming Jean Michelle and commented:
    Totally worth “re-blogging”. There are people in this world whose only mission in life is to criticize, condemn and put down the efforts of others while they stand on the sidelines doing nothing.

    You may not understand the ice bucket challenge, you may not understand walking in a circle to raise money for cancer or suicide prevention. There will be many things in life we will not understand; but a little empathy goes a long way towards the bettering of humanity.

  6. Thanks for this essay. My dad died of ALS in 1998, about eight months after his diagnosis, so I can relate to your pain. Yes, some celebrities and other assorted yahoos have hijacked the Ice Bucket Challenge to further their own press image, but the campaign has done what it was intended to do: Raise awareness about ALS and raise money for research. Well done.

  7. I’ve told many people, I fully support the challenge. I think it’s doing amazing things.
    I do not, however, support the people I’ve seen (most of whom I know personally) who don’t mention ALS at all and simply raise awareness for their hard nipples. I think maybe that’s why some people are so bent — because they have the same kind of friends I do.

  8. My son is required to write about a business related news article each week. Last week he read about the challenge. Until he read that first article, he knew nothing about the disease. On his own, he then proceeded to read 3 more articles about ALS. When he presented his paper to the class, he knew not only about the challenge, but about the disease itself. Then he turned to me and asked if he and I could take the challenge without being challenged. He offered to donate everything he had saved. For a 13 year old that is amazing. So, later this weekend, he and I will be dousing ourselves with ice water and making a donation. The challenge is raising the awareness not just of the adults, but of the younger generations who will be the ones to continue awareness to foster that one day cure.

  9. I lost a dear friend, good man father husband. His a fairy tale love we’d all hope for marrying his teenage sweetheart, bonded in love and life. Ten years, good innings for ALS he not only battles but raised his voice until he couldn’t organizing fund raisers for ALS. I wish he lived to see this amazing cause and hear all the collective voices for FIND A CURE FOR ALS. But it was time for him to rest. He couldn’t stay not even for the incredible love surrounding him which we’re sure kept him with us as long as he did. He was angel long before he went to heaven. Those who bash this raising awareness and funds, have ice running through their hearts. Please don’t let them take away this cry for help! I’m sure Lou Gehrig approves too.

  10. Thanks for writing this post. I am sorry for your family, but what you wrote is really important to read. Knowing and sharing matters. And a HUGE sum of cash is being raised… I personally think that the challenge is awesome.

  11. I’ve never understood why some people like to attack a good thing. The only reason I looked up ALS to learn about it was because of the ice bucket challenge. Really I hadn’t thought of it at all before that.

    As somebody who just lived through helping my mother through her own rare and I ununderstood brain problem (I don’t even know if it’s a disease or illness or condition ….), and having to explain to others what it’s about, I understand the need for awareness. Mom had something that my family doctor said he knew nothing about and had no idea where I could go for information on it. Awareness, at least in the medical community would have been extremely helpful to us.

    So, there is this whatever (fad?), that is making everybody learn more about something they never knew before, and raising millions of dollars and then a few party poopers have to attack it? Why? What’s it to them? Do they have something against raising money? Maybe it’s making live just a bit easier for those who have it that they are against? I really don’t get why some people feel the need to destroy every good thing they see.

  12. I have read quite a few posts and articles but what you have written really strikes the right chord. Everything that I read so far seemed to have a slight tinge of prejudice. But what you say here is definitely worth reading and pondering upon 🙂

  13. Very cogent article, well said. I think part of Ms. Hoekstra’s objection to the challenge may lie in the idea that illness and disability must be treated with seriousness at all times, something I disagree with. It is not as if people with serious illnesses live somber, downtrodden lives day in and day out. Joy, humor and silliness are precious, not offensive.

  14. Reblogged this on ketvelasco and commented:
    The ALS Ice Bucket Challenge has taught me that it’s more than just a gimmick to hit the world of social media big time.

    Above anything else, it made me aware of how simple and tricky things can make a great change.

    I support the ALS Ice Bucket Challenge and its advocacy!

  15. I think the ice bucket challenge has been quite effective. Yes, some people do it more for ‘fun’ purposes but I can say that it has created awareness. Before these videos, I had, sadly never heard of ALS. These videos resulted in me knowing about the disease and how I can help. I, however , wish people would also donate and not just dump ice on their head.

  16. Brilliant post! I just did my Ice Bucket Challenge and whilst donating on their website, I noticed they’ve updated the amount raised by it – $79.7 Million. I’d say anything that raises that much money and awareness for ALS is a winner! Stay awesome 🙂

  17. Reblogged this on maxlacher and commented:
    ALS ist eine blöde Krankheit, und es ist toll, dass so viele bekannte und nicht so bekannte Leute dafür spenden, aber es ist doch nicht fair, dass für ALS Kranke und für Forschungen wie man ALS heilen könnte, so viel gespendet wird (wo unter anderem nicht so große Chancen auf eine Methode, ALS zu heilen, besteht),aber z.B nicht an Leute mit Krebs, die 1.viel mehr sind (z.B sind in Deutschland c.a 1-3 Menschen von 100.000 an ALS erkrankt, aber über c.a 340.000 Leute Krebs haben) und 2. besteht eine höhere Chance Krebs zu heilen und neue Heilmethoden zu finden. Ich selbst finde es toll, wie diese Spendenaktion ins Leben gerufen wurde (soweit ich weis, hat ein Bruder eines ALS Kranken über ein Soziales Netz damit angefangen) und finde es gut, wie die Leute sich so in ihrem Gewissen berühren lassen, aber es gibt unter anderem zahlreiche Seiten, wo Leute behaupten die Spendengelder weiterzugeben, sie aber dann behalten und für andere, schlechte, Zwecke oder für sich nutzen. Darum fände ich es richtiger, die Spendengelder für ALS und aber auch für andere Zwecke, wie z.B Krebs oder auch für die Leute im Krieg, der momentan in Israel und dem Gaza-Streifen läuft, die ihre Häuser verloren haben, zu spenden.

  18. True that I learnt about ALS from this ice bucket challenge, but what I still don’t understand is how did wasting 1 bucket of perfectly good water became perfectly acceptable to all of us? Number of people affected by lack of water is far more than people and families affected with ALS, and that is true across the globe. The funniest thing is all these great people chose to dump a bucket of water on their heads, but not taking the challenge and donating 100$ instead, was “unacceptable”. The ALS ice bucket challenge is like “peak random kid from Africa/India/China/US/……spit on them, and voila, you have raised awareness about ALS”.

  19. I’m so glad you wrote this and thanks for sharing your personal experience with ALS. This voices everything that I found frustrating about those critiquing the ice bucket challenge and other methods of online fundraising as slacktivism. I think any little bit of activism is better than none. I learned so much more about ALS and before this summer I didn’t even know what it was. So I’m happy for this movement and I’m glad that so many people who have been personally tocuhed by the disease feel supported by their community through this challenge.

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