Adam, ALS and The Ice Bucket Challenge

I have to admit when I heard about the Ice Bucket Challenge I was skeptical. I abhor stupid publicity stunts and was struck by the number of people who know absolutely nothing about the disease, have never even heard of it, who are dumping buckets of ice water on each other’s heads.

But the “stunt” has grown on me. First, it has raised a ton of money for ALS research, which was horribly underfunded in the past. I believe the ALS Institute is close to passing $50 million in donations during this period when “Ice Bucket” became a trending term on Facebook.

Second, people have at least now heard of the disease. If you follow baseball and/or sports you probably know about it as Lou Gehrig’s Disease¹, which probably hasn’t helped the fundraising effort over the years as it confuses people about what they are donating.

Third, the Ice Bucket Challenge has added a little jocularity to what is otherwise an ugly and depressing disease.

I have a college friend who was diagnosed with the disease in his mid-30s. He joined the military after college and was diagnosed while serving. Apparently the incidence in the military is higher than in the general population. While no one knows for certain the last I read the primary belief was exposure to heavy metals.

Adam was a funny kid. He was extremely shy, had a heck of a time being friends with anyone because of it. We’d get together when he’d come home from the military and sometimes the conversation would be like pulling teeth. He was so quiet! It’s like having a long conversation with a stuffed animal. But he was an extremely loyal and thoughtful person and I always enjoyed seeing him.

On one of those trips home, when he must have been 34 or 35, we went to lunch and he told me he had been diagnosed. We talked about the disease for a while and he was certain he still had many years. The doctors gave him 7.

What impressed me most was his attitude. I would have been mad at the world, mad at God, mad at everyone for a life cut short. Adam wasn’t mad, he wasn’t upset. He has stood up to this nasty disease with such incredible bravery.

Before it got bad Adam did all the things he wanted to do. He traveled, saw a playoff game at Fenway Park (big Sox fan), spent plenty of time in Vegas. He stayed independent as long as he could, too, moving back home about a year ago. He even got over some of his shyness. He’d text me pictures of himself talking to girls — girls! — which is something I’m not certain he ever did before that.

I saw him this past weekend when we out at the coast. His ALS has advanced visually in that time but not as quickly as I’d feared. A year ago he was still walking around a little with the help of a walker, had control over his hands to some extent. Now hand control seems to be almost gone and he moved around in a desk chair. A scooter is coming soon. I believe he was diagnosed eight years ago now.

So I’ve come to terms with the Ice Bucket Challenge. A silly stunt? Sure. But maybe a silly stunt is exactly what this disease needs. Besides, I can hear Adam laughing at every person jumping out of his/her skin as that freezing water pours over head. I forgot to ask but knowing him for 21 years, I’ll bet he loves the Ice Bucket Challenge.

¹ Lou Gehrig may be the most famous person to contract the disease, although Steven Hawkings could give him a run for his money.