What does ALS stand for? What is ALS?
That’s my first question to all the people who have been sharing viral videos of the ALS Ice Bucket challenge. You’ve seen mega influencers from tech giants like Mark Zuckerberg and Bill Gates, to celebrities like Justin Timberlake, Andy Lau, our very own Singapore ministers, as well as your own friends who decided to join in the fun and tag 3 other friends to do the ice bucket challenge… but what does ALS mean? How much do we now know about this medical condition?
If you are time-starved and can only watch ONE video, do not miss this. Skip to 2:00 if you have to.
What is it like living with ALS?
It’s a brave question because the answers are not very pleasant. But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting.
If you would like to experience just a tiny corner of an ALS life, FaithIt came up with a list of “empathetic experiences”. 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. As the author mentions, “As I watch my strong husband struggle with things that used to be easy and automatic, I sometimes wish that everyone could see life from his perspective.”
- Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
- 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.
- 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.
- Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
- 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.
- 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?
- Go to bed and stay in one position for as long as you possibly can, moving nothing.
- 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.
- Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.
How much has ALS raised?
As of August 17, 2014, the ALS association has received $13.3 million in donations since the challenge started. This amount is a huge difference as compared to $1.7 million during the same period last year (July 29 to August 17). These donations have come from existing donors and 259,505 new donors.
Is the ALS Ice Bucket campaign a success?
On so many levels, yes. It’s very ironic, however, to know that one of the pioneers of the ALS Ice Bucket Challenge, philanthropist Corey Griffin, drowned that same weekend in a diving accident.
The campaign has generated PLENTY of buzz enough to get people to understand that a medical condition called ALS even exists. Only 30,000 people in the USA get diagnosed with that annually. Because of that, the pharmaceutical companies see little incentive to spend billions on research for a drug that is not “profitable”. For someone like Anthony Carbajal where ALS runs in the family, it’s heartbreaking to watch loved ones get weaker by the day, losing control of vital functions such as speech, swallowing and eventually breathing.
The truth is that this condition can strike anyone. There’s no treatment and no cure for ALS, and someone diagnosed with ALS can typically live between two to five years. At the end of the day, there’s still one major takeaway for everyone: Feeling well is so underrated. We should feel so blessed and be grateful for every day that we are alive and active. It’s a gift and privilege and we should never abuse that.