Reposting this to fix an egregious error – I should know better than to trust Scott Morcott when it comes to facts! Also, as of yesterday the ALS Association reported raising over $64 mm in the past 4 weeks, compared to a little more than $2 mm during the same period last year – which is awesome!! Glad to hear that people are donating as well as dumping!!
Probably like most people, a couple weeks ago, I started to see videos on Facebook of people dumping buckets of ice water over themselves and challenging others to do the same.
“What is this Ice Bucket Challenge,” I wondered and Googled it.
There I found that while the origin of the challenge wasn’t clear, it was initiated to raise awareness about ALS, also known as Lou Gehrig’s Disease. In addition to raising awareness, it was also in the hope that the Ice Bucket Challenge would help raise money in support of research to find a cure for this terrible disease that currently represents a death sentence for anyone unfortunate enough to be diagnosed with it.
The idea is simple enough, I guess. If challenged, you have a choice. Either dump a bucket of ice water over your head or, if the thought of doing that is unbearable, make a donation instead to the ALS charity of your choice. I had heard that some of the participants who were posting their videos were doing both – making a donation but still dumping ice water over their heads in a show of support as they “passed it along” to others.
“I hope,” I thought to myself, “that most people participating in this thing are giving some thought about what this represents, and making some kind of donation to the cause in addition to sharing these videos.” Because if the connection to ALS is forgotten and donations aren’t made, it simply becomes an exercise in passing on the challenge to other people, to see if they too are dumb/crazy/brave enough to dump ice water over their heads and sharing in the social media experience. I haven’t looked for or read many criticisms of the Ice Bucket Challenge, but one I did see today characterized it as “narcissism masked as altruism.” And if the original purpose is forgotten and donations aren’t made, then maybe that is an apt description.
When I first started to see these videos and learned what it was all about, I wondered if the challenge would find its way to me. This was only after I had seen a couple videos, before it had become a social media phenomenon, and before I had given much thought to the need to maintain a connection between the social element of the challenge (i.e. “joining in and participating”) and ALS. But I made a mental note: If and when the challenge worked its way to me, I committed that in my video, I would acknowledge the people I have personally known who have been stricken with ALS and state that I was making a donation in support of ALS research.
For whatever reason, so far the Ice Bucket Challenge for ALS has passed me by. As a result I haven’t made a video dumping ice water over my head. And when I woke up this morning, I also had not made a donation to the ALS Association or any other ALS related organization.
This afternoon, things took an unexpected turn. Before I get to that, I just want to say something quickly about a couple of the people I have known who have been taken by ALS.
In high school we had a science teacher named Mr. Risto. He was a great teacher with a jovial personality. He continued to teach long after ALS took most of his motor functions. He never asked for anyone’s pity and often used his sense of humor as his greatest defense of the disease.
In the early 2000’s, Tim Sullivan, an IT manager I worked with, started walking with a cane. Before too long, the cane was replaced by crutches, the same kind I remembered my father using in the early days of his battle with another nervous system disease, multiple sclerosis. “Dude,” I said to Tim. “What’s with the crutches?” He responded, matter of factly, that he had been diagnosed with ALS. “Oh man,” I replied, not knowing what the hell to say, but knowing what that diagnosis implied. “That is a shitty hand to get dealt.” He smiled back at me and agreed with my uncomfortable conclusion.
Tim continued to work as long as he could but the disease progressed incredibly quickly. Within a matter of months, he had moved from crutches to a motorized wheel chair. And when he couldn’t speak any longer, he still worked from home, where he could communicate with people by email. His work ethic was incredible. But ALS took his life in less than 18 months from when he first started walking with a cane. And he left behind a wife and two young children.
A few years ago, my good friend Mike Heyse’s mother Carol was diagnosed with ALS (I briefly mentioned this before here). His father Ken gave up everything else in his life to care for her 24/7 as the disease progressed to its final stages. For family members, that is the ultimate cruelty of ALS – they have to watch helplessly, as a loved one slowly becomes incapacitated right before their eyes.
Then came today. As I was scrolling through Facebook on my iPhone, I saw a face that I immediately recognized as someone I knew growing up. But it was out of place, because it wasn’t posted by any of my Facebook friends from Dearborn, MI. Rather, it was a blogpost link shared by a friend from a completely different time and place in my life. But I KNEW I recognized that face. So I clicked on the link. And I was connected to a blog written by the daughter of someone I haven’t seen in more than 20 years – Kreg Palko.
Kreg and I played Little League football together growing up in Dearborn. Then we played football against each other in high school at rival high schools Dearborn and Edsel Ford. After high school, Kreg followed his older brother Kevin to the United States Air Force Academy in Colorado Springs, CO.
Several years later, I was in Charleston, SC visiting a college friend of mine and I ran into Kreg as I was walking out of a bar (random encounters like this happen to me on an eerily frequent basis). I went back in with him and we briefly caught up over a beer. He was still in the Air Force and, if I remember correctly, he was flying C-130 cargo jets. That was the last time I saw Kreg – until his face randomly appeared on my Facebook wall today.
My heart sank as I read the blog – because the post, entitled “Why This Matters,” was in fact about Kreg, and his own battle with ALS. As my friend said in sharing the link, it is a truly heartwarming and insightful post. To that description, even though I haven’t seen Kreg in a long time, I would also add heart wrenching.
Which brings me back full circle to the purpose of the Ice Bucket Challenge for ALS. It’s not just about raising awareness about ALS. And it sure as hell isn’t just about dumping a bucket of ice water over your head and passing the challenge on to your social media friends. I heard tonight while watching the Chiefs-Panthers preseason game on Fox Sports that since the challenge began in late July, ALS organizations have raised over $13 mm compared to less than $2 mm in the same timeframe last year. So the impact of the challenge has been significant and I hope everyone that has posted a video has been mindful of the purpose.
If not, a simple request – if you have posted a video of yourself or of your children as part of the ALS Ice Bucket Challenge but haven’t made a donation to the ALS Association, please do so now. The amount doesn’t matter, but I do think it matters that you don’t lose sight of the purpose of this whole thing.
As for me, I’m not going to wait around any longer for the challenge to reach my doorstep, or my wall as the case may be. I’ve made a donation to ALSA in memory of Mr. Risto, Tim Sullivan, and Mrs. Heyse. And in support of a long forgotten friend who wakes up every morning to face the challenges ALS puts in front of him. I hope that a cure may be found as soon as possible.
Kreg – thoughts and prayers are with you. Keep up the fight.
Here is the video of Kreg and his daughter Gabriella doing the Ice Bucket Challenge for ALS: