The Danger of the ALS Ice Bucket Challenge

The awesome Ken Wilson, shortly after his diagnosis in 2007.

The awesome Ken Wilson, shortly after his diagnosis in 2007.

ALS stole my father’s speech eight months before he passed away, so the very last thing he ever “said” to me, two days before he died, was blinked out with his eyes one letter at a time: i-a-m-s-o-p-r-o-u-d-o-f-y-o-u.*

In the last year of his life, I lived with my parents and helped my mom care for him. I got to know ALS pretty well during that time. It’s the sort of disease that makes you relieved and happy when your loved one takes that last breath and is finally free of it.

I can understand why people are dumping buckets of ice water over their heads in an effort to get rid of it.

But the danger of the ALS ice bucket challenge is that, for most, it inadvertently fuels a misperception of reality: namely that we, the “healthy” people, are helping them, the “terminally ill” people fight their disease and win. Nothing could be further from the truth.

People who receive an ALS diagnosis are no more terminally ill than you are. And, really, they’re not terminal because they have ALS; they’re terminal because they were born into this world. You are also terminal. You may not have a “label” to attach to that condition right now, but your clock is ticking just as surely as the clocks of all those ALS patients—some of whom, I’m willing to bet, will die from heart attacks and car accidents instead of their disease.

In case you missed the news this week, the “healthy” co-founder of the ice bucket challenge, 27-year old Corey Griffin, drowned in a diving accident on August 16 after leaving a fundraiser where he reportedly raised $100,000 for the cause. He and his friend, Pete Frates, who has the disease, started the challenge together. I can promise you Griffin never imagined he’d be in a coffin before his friend! But the stark reality is that if he spent one moment agonizing over the thought of losing Frates, it was a wasted moment, a scenario he would never live to experience.

Don’t get me wrong. I’m all for stamping out ALS and cancer and every other nasty disease that causes immense suffering. I hope the $40+ million that has been raised will be quickly transformed into a cure so not one more person will have to watch a loved one waste away to a shell of his or her former self. But don’t suppose that curing ALS will mean the end of the terminal condition. Even if we cure every disease, we will still stop breathing and be put in a box and lowered into the ground in due course.

Even if you consider yourself “healthy,” today may be your last.

So please, don’t spend it worrying. Don’t spend it agonizing over future scenarios you may never be around to encounter. Instead, live it.  Do something amazing with it—like dumping a bucket of ice water over your head or writing a check for research that could ease the suffering of thousands. Play with your kids. Smile at a stranger. Respond to that angry internet comment with a kind word.

Don’t get sucked into the false security of believing that you’re going to be here tomorrow just because you don’t have a “label.” As you douse yourself with that gallon of ice water, remember that you are terminal, too, and live this day as if it was your last.


*Not nearly as proud as I am of you, Daddy.