If you are on any social media platform, I’m sure you have run across the Ice Bucket Challenge. If you haven’t (do you live under a rock?), here’s what’s going on:
The Ice Bucket Challenge, is a campaign to raise awareness and money to fight the disease Amyotrophic Lateral Sclerosis which is also commonly known as ALS, Lou Gehrig’s Disease, or Motor Neurone Disease if you live in the UK or Australia. If you are challenged you can either dump a bucket of ice water over your head (people usually post it on Facebook or another social media platform) or donate money to the ALS Association (or other ALS charities such as Team Gleason). Many people will do both. The challenge began in July and has been gaining popularity in the US over the last couple of weeks as more and more celebrities and public figures are taking the challenge.
There are cynics that are calling this movement “slacktivism” or saying that it’s “narcissism masked as altruism” and that it is a passing trend that won’t do any good. Except it has done good. According to the ALS Association website, “The ALS Association has received $15.6 million in donations compared to $1.8 million during the same time period last year (July 29 to August 18).” You read that correctly. That is a huge boost to a charity that is often ignored. More than the money, this campaign has raised awareness. People are asking “what is ALS?” My own children asked about ALS and why so many people are talking about it, and for the first time I was able to talk to them about a subject that isn’t always easy for me to talk about.
In 2003 my world was rocked when I lost my grandmother to ALS. Grandma Betty was a remarkable woman who, like all of my grandparents, shaped much of who I am today. She instilled a love of reading in all of her grandchildren. I cannot remember a time that she wasn’t lugging around a huge bag filled to the brim with her lasted tomes (she was very much like Rory Gilmore that way). Everyone loved borrowing one of her books and seeing the pages all marked up with her notes in the margins and her favorite quotes underlined. If she was reading something and it made her think of you, she would buy you a copy. Over the years she introduced David to some of his favorite authors and when she learned that I had a thing for Shakespeare, she presented me with a copy of his complete works. Bookstores were like Heaven on Earth for her and she spent countless hours perusing their aisles. I honestly think that the main reason that she liked Disney’s Beauty and the Beast because of Belle’s library.
Her love of books was just a small piece of who she was. She was a champion of all creative endeavors and encouraged storytelling, singing, dancing and building massive forts even if it meant we turned her basement into a disaster zone. She was also one of my greatest defenders, once saying that she wished she could drop a bowling ball on the head of a rather rude swimming coach (don’t worry… she didn’t actually do it). Then there was the time that she cleaned my room while I was at school to keep my mom from grounding me over the mess. She was an amazing cook even though she never followed a recipe. No one has ever been able to replicate her delicious stews (that she could throw together at a moment’s notice) or her legendary spaghetti. And she loved movies. We could watch films for hours on end and there are still movies that I cannot watch without thinking about my grandma and how they made her laugh.
There were so many qualities that I loved about my grandma; I could bore you for hours listing them. The thing everyone misses most about Grandma is her conversations – the conversations that ended months before her death because the disease she was battling stole her voice long before it took her body. One of the most painful things about watching her battle ALS was seeing the frustration in her eyes when she wanted to contribute to the conversation but could no longer do so. Sure, she had her Dynawrite, where she could type her thoughts out into a little computer that would read them back to us, but it wasn’t the same as hearing her voice or her witty repartee.
My grandma is just one of the many faces of ALS. There are so many other families like mine who had big holes ripped in their hearts as they watched a loved one succumb to this fatal disease. That is why the Ice Bucket Challenge is important to me. It is why I took the challenge (along with my husband and children). It has warmed my heart to see my family members who were close to my grandma take the challenge, but it has been even more heartwarming watching my friends and family members who weren’t close to her come out in support because they know that it means something to me and to others like me. To the cynics out there who think this has done no good – aside from the money that has been raised (and it has been a lot) there is a whole generation out there who had never seen Pride of the Yankees, who had never heard of Lou Gehrig or his eponymous disease and who didn’t have the slightest inkling about what ALS stood for that have been enlightened to this horrendous disease. Because of the Ice Bucket Challenge they will now have empathy for the people struggling with ALS and the families that love them. Money is crucial but awareness is key. You never know – maybe one of these young kids participating in the challenge will grow up and find a cure for ALS. I can only hope. A big thank you to all who have participated and an even bigger thanks to those who have donated.