What An ALS Family Thinks About the "Ice Bucket Challenge"

Source: Bo Stern.com

Well, we are on week two of the very viral, very everywhere ALS Ice Bucket Challenge. I know, I know, I can hear the groans…it started out cute and now it’s out of control. Played. Clogging up social media sites everywhere.

Critics complain that the challenge is really about feeding our American narcissism and does nothing for ALS awareness or funding. They assert that people should just quietly donate their money and move on with their lives.

I get it that they’re cranky, but I think maybe they don’t realize what it’s like to face this insidious disease, and then realize that it’s nearly invisible to the rest of the world.

As I watch my husband become entombed inside his own body, I feel desperate for people to understand that this sort of inhumane condition exists. But for some reason, while everyone acknowledges it’s one of the worst fates imaginable, funding for research and patient care is nearly nil.

I recently mentioned to a doctor that my husband has ALS and she first looked confused and then said, “Oh, that’s Lou Gehrig’s Disease, right?” Right. But why does she — a doctor of medicine — still only know ALS as Lou Gehrig’s Disease? Because we humans associate things with people — it’s easier that way.

That’s why the celebrity faces and personal challenges happening in the ice bucket challenge are so effective at bringing in money. And if someone gets to look good while plunking their $50 in the ALS tip jar, I have zero problem with that.

We are in for the fight of our lives with this monster, and the VERY LAST thing I want is for people to give quietly, anonymously, and then slink away.

Raise the roof! Raise a ruckus! Call all sorts of attention to yourself! I will be happy for you and every Facebook like you receive as you nudge ALS an inch or two closer to the collective public consciousness.

But fear not, dear reader — this, too, shall pass, and your Facebook newsfeed will go back to cat videos and kids singing Let It Go. Until that happens, here’s a little reminder about what it’s like to live with ALS and why this level of awareness is like gold to families like mine:

A Mile in ALS Shoes

  • Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
  • Strap 25 pounds to your forearm. Adjust your rearview mirror.
  • Before you eat your next meal, take a good, long look at the food…Now, imagine never being able to taste it – or any other food – for the rest of your life.
  • Install a text-to-speech app on your smart phone or tablet and use it exclusively to communicate for one day.
  • 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…
  • Imagine that this is your life. Your only life.

All ALS patients are encouraged to enroll in the ALS.org national registry. Click below for:
Making A Donation
More Info on ALS
New Jersey Neuromuscular and ALS Center
New Jersey Support Groups

Bo Stern’s husband passed away in June of 2015.

 

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