A few days ago, I was nominated to do the ALS Ice Bucket Challenge (Shoutout to Carmen Wong for the nomination!). ALS (Amyotrophic lateral sclerosis) is a neurodegenerative disease where motor neurons from the brain to the spinal cord and spinal cord to the muscles progressively die. As this happens, those affected become slowly paralyzed physically, but not mentally (still being able to think, express emotion, and communicate). There has been no evidence of preventive measures or cures.
By the time I had been nominated, the ice bucket challenge was on the high road, taking over Facebook feeds and news headlines (of both backlash and praise), raising 22 million USD, and having celebrities and billionaires passing the challenge to one another. Amidst the entertainment and frustration came 3 articles that reminded me what this challenge is all about and essentially defined why I wanted to do it (beyond the nomination):
- Read this to try to understand what it is like to be the daughter of someone diagnosed with ALS.
- Read this if you want a list of 10 “empathetic experiences.” Some include:
- 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.
- 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?
- Lastly, watch this if you want to know what it is like to spend the last few years taking care of family members then realizing that you will soon be the one who needs to be taken care of.
Everyone is entitled to their opinion so this is just mine. In short, I accepted the ice bucket challenge because:
a) I didn’t know about ALS and this social media campaign challenged me to take the time to discover the facts (I’m sure I wasn’t alone)
b) Approximately 5,600 people in the U.S. are diagnosed with ALS each year. This number may be minimal compared to other causes of death but that is not the point. No one is exempt from witnessing and experiencing loss from an accident or a disease. As someone who has found so much support and hope from organizations and people that understand and experience cancer, I can only hope that we can provide the same for those who have been inflicted with ALS.
Finally, c) I am living in a world where people all over the world can stay connected through a phone app, travel halfway around the world in a day, and share/create experiences and ideas with a bit of perseverance. With all of this, we are still fighting the same wars, losing people to the same diseases (and more), and living our lives the same way as if the world has always been this comfortable. Yes, I enjoy the cute animal vines and buzzfeed articles; yes, I am guilty of going to work, going home, doing chores, and starting the next day the same way. But what then is the point of having instant access to everything, to everyone, if we distance ourselves from what is happening 20 hours away from us. What is the point of our smartphones if it has turned us into people who panic during a blackout, who bump into a pregnant woman carrying groceries, and who sit comfortably on the T while an older person struggles to balance. If there’s anything this campaign has done, it has brought back the human spirit and has woken us up from our bubble and putting our time, money and effort into something that is uncomfortable, spontaneous, unifying, humbling, and most of all, bigger than ourselves.
So essentially, thank you to everyone who has taken the quick minute of their daily lives to participate in this movement. May the generations after us find these crazy videos in our archives and be proud and inspired of what we did with 2 minutes of our time.
In addition to donating to ALS, I will be donating to Gawad Kalinga.
1) Because this organization is providing quarterly reports on what has been done, what is currently being done, and what the plans are for Typhoon Haiyan.
2)The Enchanted Farm is such an awesome endeavor. While I am still figuring out my own social entrepreneurship journey, I am more than happy to support such an amazing one.
Kim Champlin, Kyle Ley, and Veronica Limcaoco, you’re up next for the ALS Ice Bucket Challenge! #icebucketchallenge #alsicebucketchallenge #strikeoutals