Last week, we were tagged by Nuffnang to do the Ice Bucket Challenge. We accepted the challenge, and our Singapore team stepped up to pick up the bucket. Thank you to Zalora, who accepted our challenge in great style, and Paktor, for its generous donation to ALS.org.
Do We Really Understand The Ice Bucket Challenge?
By this point, you would have seen that nearly every prominent figure has done the Ice Bucket Challenge. People are starting to question why this is being done, and honestly, the social media trend sweeping the world has been changed from the original version. The idea of the Ice Bucket Challenge was originally designed to incentivise donations by giving people tagged an option of either donating $100 or dunking a bucket of ice water on your head.
Some may not realise the significance of choosing ice water to be part of the challenge; it’s actually because it symbolises the numbing of the nerves, something that happens to ALS patients.
If you are tired of watching ALS Ice Bucket videos from celebrities, then you should definitely watch this one. Skip to 2:00 if you have to. It is the most honest representation of the ALS situation out there.
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 21, 2014, the ALS association has received $41 million in donations since the challenge started. This amount is a colossal difference as compared to $19.4 million in the whole of last year. 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. Monetarily, it is working immensely well (though in Singapore the progress is significantly slower), but many have stepped up to criticize the trend. According to AsianPopNews, famous movie actor Chow Yun Fatt declined doing the challenge citing his health and the ‘waste of water’, though he went ahead and donated anyway.
Sadly, one of the pioneers of the ALS Ice Bucket Challenge, philanthropist Corey Griffin, drowned last 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.
How can I help?
When the fun of watching people dump water on their heads is over, it is important to think about ways to actually help. There are various ways you can really make a difference, other than sharing the news. Making a donation, no matter how small, can contribute to making the lives of people suffering from ALS better. Some links are included below, where you can either donate to ALS research, or your local ALS supporting foundation.
Support in Singapore: Ministry of Funny MND Campaign