If you鈥檝e become wary of endless Ice Bucket Challenge videos in your Facebook feed, take a moment to read one woman鈥檚 poignant blog post on what it鈥檚 really like to live with ALS, the fatal disease at the centre of the fundraising movement that鈥檚 gone viral online.
Bo Stern, a U.S. author and speaker whose husband Steve was diagnosed with the neurodegenerative disease in 2011,
鈥淚f you would like to experience just a tiny corner of an ALS life, I have a list of empathetic experiences for you,鈥� she wrote.
Among them:
- 鈥淧ick up a 10-pound weight. Now imagine it鈥檚 your fork and move it from your plate to your mouth repeatedly without shaking.鈥�
- 鈥淏efore 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 鈥� or any other food 鈥� for the rest of your life.鈥�
- 鈥淧ut 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?鈥�
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.
鈥淐ritics complain that the challenge is really about feeding our American narcissism and does nothing for ALS awareness or funding,鈥� she wrote.
鈥淭hey assert that people should just quietly donate their money and move on with their lives.鈥�
Ice Bucket Challenge videos may be getting tiresome after two weeks, but they are making a difference, Stern argued.
鈥淏ecause here鈥檚 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.鈥�
