Choosing My Side

I’m not sure I can count the number of ALS Ice Bucket Challenge videos I’ve seen in my social media feeds. And, yes…I’ve contributed. Not just me, but my entire family was doused with ice cold water and donated money to www.ALSa.org in order to earn the chance to challenge our family and friends to do the same. There have been hundreds of videos, and that is to say nothing of the endless banter of back-and-forth from heated critics and passionate supporters of this particular social media movement (in all its forms). I can see and understand both sides, but I’m choosing a side in this.

Ultimately, for me, it boils down to the fact that I just can’t be a hater. Not here – not now. I can’t be annoyed or even mildly critical of even the most narcissistic and obviously uneducated (about ALS) who’ve participated…because…it. is. working. Both awareness and funds have been raised.

But, something more than that has also happened…

Before I get to that – lets visit a little more about what exactly ALS is and what life looks like for those who are diagnosed. Take a quick stop at Bo Stern’s Blog, Bo Stern The Difference of a Day – where in one of her posts she discusses what a day in the life of someone living with ALS might be like. Or, if your eyes are too tired to read, watch Anthony Carbajal’s ice bucket challenge video. Just be sure you watch the whole thing.

From Bo Stern:

If you would like to 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.

So…on that note, the something more that this movement has spurred? Gratitude.

In my time researching ALS since this media movement began, I’ve seen only gratitude from those impacted the most, those who have the most justifiable reason to take offense – the men and women suffering from Amyotrophic Lateral Sclerosis (ALS) and their families. How are they able to watch this imperfect, sometimes faulted, not-always P.C. movement take place and not find reasons to be annoyed, irritated, or offended? Well, I think they have perspective.

According to www.ALSa.org (ALS Association). Life expectancy of an ALS patient averages about two to five years from the time of diagnosis. ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries. ALS can strike anyone.

I think you’ll be hard pressed to find an ALS patient who doesn’t know these heart-startling facts. I imagine (figuratively – I don’t presume to have ANY idea what it is like to live with ALS), as an ALS patient, it is pointless to be bitter and critical of people who are trying – in all their imperfect glory – to help. And, we should all be helping more…helping more in every way – big and small, perfectly or imperfectly.

The gratitude this movement has spurred doesn’t end with the ALS community of those affected. Let’s be honest (It’s kinda how I like to do things), the average quasi-healthy-social-media-participating-human who takes the time to learn even the bare minimum about ALS, will undoubtedly experience the moment when they say a word/prayer/meditation…exclamation…of thanks for their health – and in that same moment they are acknowledging and honoring those who’ve fought and those who are fighting for their health.

And in keeping with this theme of honesty and gratitude – two things the world could use more of – I say thank you to all the imperfect, possibly narcissistic, brave, generous participants and donors of the #icebucketchallenge . You have forced me to think beyond myself – to consider how I can help more, what more I need to be grateful for, and to consider how many other lesser known illnesses are underrepresented and silently effecting hundreds, or thousands of people who need our support. Finally, to the warriors in the trenches fighting ALS, you are in my prayers thanks to this wildly explosive, sometimes controversial social media movement– and I’ll be honest, you weren’t there before…but you are now. You are now. You have one more faulted, imperfect, but willing, good-intentioned soul…trying, if in only small ways, to help. I’m on your side.