What One ALS Family Really Thinks About the Ice Bucket Challenge

Here's the deal: We are in for the fight of our lives with this monster that is ALS, and the very last thing I want is for people to donate quietly, anonymously and then slink away. Raise the roof! Raise a ruckus! Call all sorts of attention to yourself!
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Well, we are still being inundated by the 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 (which has raised an unprecedented amount of money for one of the most outrageously underfunded diseases) is a waste of fresh water. Another headline whined, "Is the Ice Bucket Challenge Going to Cure ALS?" Um, no, and that's probably an unhealthy bar to set for any fundraiser. Others argue that this is really about feeding our American narcism 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 that they're cranky, but it's hard to explain 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 inhumane condition exists. And yet for some reason, ALS remains hidden in plain sight. In fact, most people still know ALS by the name Lou Gehrig's disease, I think because it's easier to associate a condition with a person. Perhaps that's why the celebrity faces and personal call-outs happening in the ice bucket challenge are so effective. They bring normal people like your Uncle Larry and superstars like LeBron together on the common ground of a shared cause, giving that cause a face. A cold, wet face. And if Larry and LeBron get to look good while plunking their $50 in the ALS tip jar, I have zero problem with that and most of my friends in the ALS community feel the same way.

Because here's the deal: 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.

So, 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

If you would like to go beyond the bucket and experience just a tiny corner of an ALS life, I have a list of empathetic experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.

  1. Pick up a 10-pound weight. Now imagine it's your fork and move it from your plate to your mouth repeatedly without shaking.
  2. 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.
  3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
  4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
  5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
  6. 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.
  7. 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?
  8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
  9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That's the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
  10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.
And to my friends living with ALS: Please give us more ideas and help us move into your world for a bit. We want to help make your lives rich and full and I'm not sure we can do that without at least a basic understanding of what you are facing. I think I speak for many when I say: you are superheroes and we are in awe.

If you would like to make a difference in the fight against ALS, please visit www.alsa.org to learn more or to donate.

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