Who Knew dousing someone with a bucket of ice water could net so much attention. Not to mention money.
I have to be honest and admit to being somewhat out of the whole Ice Bucket loop. I’ve read just enough to know what was happening with the challenge. Well, sorta. Does anyone really know what started happening once the challenge went viral? Except for the fact that it drew a lot of attention towards the ALS community, both positive and negative, and a whole lot of money.
It was while reading an article on Blogher that, for the first time, I had a strong reaction to what all was being said about the “ALS Ice Bucket Challenge” – some made it sound as though it was some sort of ‘money-making-trick’ made up by the ALS Association. The ALS community didn’t start this challenge. But more about that in a minute.
First, I want to say I enjoyed the article on Blogher – it was a well-written piece touching on the writers view of the positives and the negatives being bandied about the social platforms. And, I might add, I agree with her opinion regarding the plethora of diseases that could use more time and way more money than they’re being given.
That said, what I couldn’t understand was, uh, well, for the lack of a better word, the attacks made on the ALS Association for, dare I say, exploiting the hoopla around the challenge in order to bring in more money than the disease has ever seen – let me say that again, more money than they have E.V.E.R seen!
Instead of using all that energy pointing out the reasons ALS doesn’t deserve, need, warrant the recent outpouring of attention and money, it could have been an opportunity to high-five what has been accomplished in the ALS world then go on to highlight other diseases that are also in need of money for research, education for better understanding, etc. And besides, it isn’t as though this was the brainchild of the ALS Association. They were not the originator of the challenge.
In fact, the Ice Bucket Challenge didn’t even start out targeting the ALS community as its prime benefactor. I copied the quote below from Time.com that explains the origin …
“The ALS Ice Bucket Challenge has quickly gone from a fundraising campaign to a viral Internet sensation, raising $15.6 million so far for the ALS Association to research Lou Gehrig’s disease.
But how did a campaign that has drawn in celebrities from Oprah and LeBron James to Bill Gates and Mark Zuckerberg actually start?
Chris Kennedy, a golfer in Sarasota, Fla., was nominated by a friend to participate in the Ice Bucket Challenge, which at the time, had nothing to do with ALS. The campaign was not tied to any specific charity, and participants would select a charity of their choice for donations. Kennedy’s friend had selected a charity that benefits a young child with cancer in the area. Kennedy, passing the challenge along, then selected ALS because a relative is suffering from the disease. Kennedy nominated his wife’s cousin Jeanette Senerchia, whose husband Anthony is the one suffering from ALS. Kennedy posted this video on July 15—what appears to be the first instance in which the Ice Bucket Challenge and ALS were linked.”
And this quote is from the Wall Street Journal’s online site (online.WSJ.com):
“The so-called ice-bucket challenge—dump ice water on yourself, post and tag yourself on social media and challenge others to do the same—got its start among golfers as a way to support pet charities. In just a few weeks, it has become a major fundraising coup for patients and organizations with ALS, a neurodegenerative disorder. It is commonly called Lou Gehrig’s disease, after the baseball player who had it.”
So, while things quickly spiraled into the stratosphere for ALS, it was just a fluke … and, regardless of how anyone feels about the groundswell that surrounded the ALS community, it is l-o-n-g overdue and definitely deserved, needed, wanted, hoped for, worked for, and warranted. And for me to say that in no way is to suggest that I don’t believe every other disease out there isn’t just as viable, needful, etc.
I do have to say, however, that I had a difficult time when reading the refusals. Hey, nobody has to accept a bucket of ice water being poured over their heads … to be honest, I’m not sure I would care to be doused with freezing water and I am living with ALS. Can’t help it, I wouldn’t want to get my power chair wet, or my ventilator, or well, hey, I wouldn’t want to get myself all wet – unless, uh, like, if I was in the throes of a hot flash I might have acquiesced, then again, perhaps not.
My point is, while I can absolutely understand not wanting to have water dumped over your head, I do think there was a more gracious way certain individuals could have refused the challenge. For instance, I saw a video a mom made of her 9 year old daughter who did not want to accept the ice bucket challenge, however, she asked if she could accept a different type of challenge – could she lay in a lounge chair for 15 minutes without moving, talking or smiling. You see, her aunt has ALS and, while this 9 year old girl may not have consciously been aware of it, she was dignifying her aunt who must endure the indignities of ALS.
This 9 year old showed a graciousness far beyond the grasp of the many high profile adults who refused the challenge. She demonstrated a desire to validate what her Aunt endures every day – instead of an outright refusal she found a way to acknowledge the challenge. And what she contributed was priceless because she gave her Aunt (and all of us with ALS who saw her video) a measure of graciousness and dignity that ALS has taken from our lives.
I think that is what frazzled me the most when reading some of the refusals – it came off selfish, cold, selfish, lacking fellow feeling, did I mention selfish? The person used the moment to make it about themselves and what they thought was most important. Forget about pALS (people with ALS) and their families.
It was as though they were dumping an ice bucket of water over all our heads! Hey! I guess, in a way, whether they like it or not, they DID take the challenge … but, instead of our getting all wet, the negative publicity moved so many others to jump in and drive the bottom line up, up, way up, to the tune of over 100 million dollars(!!) according to an article on the Forbes site dated August 29, 2014.
I know man is limited in what he can accomplish when it comes to eradicating disease, however, I do hope the money raised from this challenge will, for the most part, go towards research into viable therapies and treatments. There are interesting ‘bench to bedside’ modalities being applied which would put these treatments and therapies within our grasp much faster.
I’ve read various remarks concerning the relief felt over the Ice Bucket Challenge finally losing steam or ending. I can only guess that such attitudes stem from lives not touched by a horrible degenerative, progressive, fatal disease. At least I would hope so. But, really, and perhaps even sadly, until research uncovers treatments, therapies or a total cure there will continue to be walks, races, auctions, and, yes, challenges with the (hopeful) goal of raising awareness along with money for various illnesses.
Though ALS has been in the spotlight these past few months some other terrible disease will soon be given center stage … on and on it will cycle because of the families and friends who are caring for, supportive of, and genuinely loving those of us dealing with ALS, Cancers – from Breast to Mantle Cell Lymphoma, Pompe disease, Huntington’s disease, Mitochondrial Myopathies, etc.
I know I am blessed to be surrounded with incredible family and friends. I want to close this post with a letter written by my sister, CJ, because I feel it demonstrates the inner fire our families have when it comes to a loved one diagnosed with serious and/or terminal illnesses. CJ has always been staunch in showing her support, yet, I must admit that I didn’t fully appreciate the depth of her loving support until reading this letter.
CJ wrote this in response to an actress who refused to accept the ALS Ice Bucket Challenge – I find it to be quite poignant and very touching … I hope you will as well. Of course, my sisters heart is large enough to encompass anyone suffering with illness, therefore, my name can easily be removed to insert the name of someone you love who is fighting daily to live with ALS, Cancer, etc.
Here is her letter:
Letter to Pamela Anderson.
I have always liked you and I know you love animals, BUT I can not believe your problem with the ALS ice bucket challenge! It is obvious that you, or someone you love, is not dealing with this horrible disease because you would want help for them. ALS is not a money making disease for the pharmaceutical companies so they have not done much since the time that Lou Gehrig was diagnosed. Have you really looked into the research? And have you looked into the research for almost every disease out there? I love animals also and never want to see any harmed in any way but I love my sister more, who is fighting ALS. She is this beautiful person that I KNOW you would really love and want to see her have a cure as well as all those dealing with this disease. I dare you to read her blog and come away not affected by her courage dealing with this horrible disease. THERE IS NO CURE! ALS researchers are doing all they can and I applaud them, no matter what it takes. I really think if anyone you love is ever diagnosed with this disease you will think a little different. Her blog is peppywrites.com. I dare you to read it and not be affected by it.
Thank you for your time.