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.