I was in third grade when I crawled into my mother’s bed to find her sobbing. I was already crying, devastated by the ending of the book “Where the Red Fern Grows.” My mother, I learned, was crying because her brother, Jimmy, had just died of amyotrophic lateral sclerosis, or ALS, the same disease that killed her father less than a decade before.
I remembered this when the ALS Ice Bucket Challenge assaulted my Facebook wall. The memory was stark against the grinning participants unloading plastic pails of platitudes before disappearing under curtains of ice water.
I initially sided with the skeptics who thought this was more self-aggrandizing than awareness-raising. But as recent articles pointed out, we cynics missed the point. Before the Ice Bucket Challenge ALS was somewhat obscure, its infrequence making both awareness and funding difficult to come by. Trite though Facebook videos may be, the impact has been tremendous, raising millions of dollars.
The value of the fund-raising is indisputable, but the cringe-factor is lingering: In a post-ice-bucket-world, will any more people actually know what ALS is?
Maybe not — the disease’s devastating realities are a lot less fun than ice cube deluges on a summer day.
ALS is a fatal disease that steadily ravages your body while leaving your mind intact. You are mentally present to catalog your body’s descent into complete dependency upon loved ones, and eventually machines, for survival.
“Imagine being slowly duct-taped to a chair,” said my cousin, who is in medical school studying the disease. “In two to three years you go from being perfectly physically fit to depending on other people for eating and breathing.”
Eventually you can’t hold your own head up. You can’t speak. You begin to communicate by blinking.
My uncle Jimmy described feeling trapped and claustrophobic in his body, about his fears of drowning in his sleep as he failed to breathe on his own. He tried to explain the frustration of not being able to tell loved ones how he felt before he died, most painfully his newborn son. “We watched him waste away,” my mother recalled.
So maybe, if all these videos had a little more to do with actual ALS, they would feel less discordant.
There’s still so much we don’t know about ALS: Mao Zedong is suspected to have died of it. Stephen Hawking has a disease related to it. There was an epidemic of ALS in Guam that was linked to eating flying fox bats. Gulf War veterans, Italian soccer players, and NFL football players all have a higher rates of ALS — but we’re not really sure why.
So you know what isn’t trite about tens of thousands of goons dumping ice on their heads and shouting about it on the Internet? The millions of dollars it has raised for research to help get us a little closer to cracking the code. That will be what changes lives long after the last ice cube hits the pavement.
Abigail Higgins is an independent journalist based in Nairobi, Kenya and New York City. Follow her on Twitter @abbyhiggins.