Ice Bucket Challenge: A wife explains what it's like to live with ALS
Bo Stern and her husband Steve, who has ALS. (Source: bostern.com)
Published Tuesday, August 19, 2014 5:20PM EDT
Last Updated Tuesday, August 19, 2014 9:59PM EDT
If you’ve become wary of endless Ice Bucket Challenge videos in your Facebook feed, take a moment to read one woman’s poignant blog post on what it’s really like to live with ALS, the fatal disease at the centre of the fundraising movement that’s gone viral online.
Bo Stern, a U.S. author and speaker whose husband Steve was diagnosed with the neurodegenerative disease in 2011, is inviting people to walk a “mile in ALS shoes.”
“If you would like to experience just a tiny corner of an ALS life, I have a list of empathetic experiences for you,” she wrote.
- “Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.”
- “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?”
In her post, Stern noted the backlash against the Ice Bucket Challenge, which has seen celebrities, athletes, politicians and what seems like just about everyone else, dump ice-cold water on their heads.
Many people have criticized the premise of the challenge, which gives participants a choice between getting doused with cold water and making a donation to the ALS Society. But Stern defended the campaign.
“Critics complain that the challenge is really about feeding our American narcissism and does nothing for ALS awareness or funding,” she wrote.
“They assert that people should just quietly donate their money and move on with their lives.”
Ice Bucket Challenge videos may be getting tiresome after two weeks, but they are making a difference, Stern argued.
“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.”