Unless you live under a rock, you are surely aware of the ALS Ice Bucket Challenge. Actually, even under a rock you’ve probably at least seen someone in the distance taping themselves pouring a bucket of ice water over their head to raise awareness of ALS (Amyotrophic Lateral Sclerosis ) or Lou Gherig’s Disease. Within 24 hours of being nominated, you are supposed to make a video of yourself being doused with ice water, donate $10 to ALS, and nominate three more people to take part in the challenge; if you don’t do these things you are supposed to donate $100 to ALS research. The whole thing is meant to raise awareness (and of course money) of the disease.
Celebrities and commonfolk alike have participated in the challenge, and as of today, the New York Times reported that more than $41 million dollars has been raised in the past month, more than twice the total donations during all of 2013. Not only will the donations be critical in funding research for the cause and cure of this awful disease, but suddenly ALS is on the map whereas many hadn’t heard of it previously. What is it? In a nutshell (thanks to www.alsa.org):
[ALS] is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
There have been some people who have not jumped on the Ice Bucket bandwagon. Dissenters say that this has just turned in a “fraternity stunt” and doesn’t actually do anything to educate people about the disease. Others have an issue with so much previously un-donated money going to this one particular cause when there are so many others that are worthy.
I was nominated around dinnertime last night to participate in the challenge. The timing wasn’t great as it coincided with a frantic effort to pack up and deliver my son for his freshman year of college today. Thus, I have not completed the challenge and will happily donate $100 to the cause. As part of my penance for being lame, I decided to share my personal connection to ALS, which I am unfortunately able to do because my grandfather lost his life to it almost 29 years ago. It makes me sad that so many years later there still seems like so much work needs to be done, but I’m also excited that this horrible disease is getting some attention.
My grandfather made a career teaching electrical engineering at the University of Illinois. I didn’t really appreciate the magnitude of that until I floundered through economics at the same school years later. Growing up, whenever our family visited my grandparents in Champaign, Grandpa would take us on outings- sometimes some sort of animal farm, sometimes a special performance at Assembly Hall (the circus!), sometimes to an open field to teach us how to fly a kite. He really loved being a grandfather, and he also loved technology, computers being in their infancy in the early eighties. Sometimes my mom will comment about how much Grandpa would have loved today’s technology. I like to think he would have been one of those hip grandpas who was super computer savvy. I’m sure he would have been.
One summer during high school, my sister and I were staying with my grandparents for a couple weeks at their summer home in Michigan. Twice during our visit, my grandfather fell inexplicably. A later visit to the Mayo Clinic would reveal the reason: he had ALS. Over time, ALS robbed my grandfather of his ability to walk, talk and even swallow. I will never forget a dinner at our house when he started choking because he couldn’t swallow his food; we had to call the ambulance. He lost his battle with ALS in November 1985.
In retrospect, I feel awful about the way my grandfather must have felt as his disease progressed. How frustrating it must have been to slowly lose the ability to control his own body, and what a loss of dignity it must have felt like to watch his own decline.
There are a million crappy diseases that deserve research, and I would love for all of them to be sufficiently funded. But selfishly I am grateful for the Ice Bucket Challenge and what it will hopefully do for ALS research. I would love to think that my kids might have had the opportunity to get to know my grandfather and that someday the outcome for someone else might be different.
Please consider taking part in the Ice Bucket Challenge or at least making a donation and learning a little bit about it. You can do both here.
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