Here’s the Bill Gates ice bucket challenge:
And here’s a celebrity compilation:
https://www.youtube.com/watch?v=-YOSqYGqW6A
The ice bucket challenge, to raise money and awareness to combat ALS, has become somewhat controversial. The campaign has been called a celebrity-driven stunt and the phrase “raising awareness” can seem vague. On the other hand, up until now, it’s been near-impossible to fund research regarding ALS, and the celebrity videos have brought about millions of dollars in donations.
My friend Jay Holman had ALS, and he died earlier this year. The disease is especially horrific and insidious, because it causes a person’s entire body to shut down, bit by bit, while their mind remains intact. Jay eventually became imprisoned in his own body, unable to move or speak. He was cared for by his extraordinary and loving partner, Bernard. During Jay’s final months, when he could only manage the most minimal forms of communication, Bernard would translate. Jay had a great, dry sense of humor, and even as his disease progressed, he’d manage to express skepticism, amusement and disdain.
I’d met Jay in college. I’d been intimidated by him, because Jay was always very well-dressed, and no one’s well–dressed in college. Jay also hung out with an extremely cultured group of friends, who appreciated film history and spoke French. Jay and I eventually got to know and enjoy each other, and then we both moved to New York, where Jay worked for Saturday Night Live, and produced a film of the Willa Cather story “Paul’s Case”, starring Eric Roberts. Jay then moved to Los Angeles, where he flourished as an interior designer, and found great happiness with Bernard, who’s also a terrific designer. Because Jay and Bernard were both handsome, elegant men with superb taste, I always figured that they had two choices: they could either hate each other, or fall in love.
I visited Jay over the course of his disease, and witnessed his courage and frustration, as his world narrowed. Even as he had trouble walking, he could still drive, although I’ll admit that I was a little scared , as his passenger. He loved going to movies and theater, and began doing so in a motorized wheelchair. He told me that, at first, he’d researched his disease online, and spent time in the ALS chatrooms, but that the news was always bad: there were no treatments, minimal research, and the people in the chatrooms would disappear, one by one. As he became almost completely paralyzed, his struggle to be understood was agonizing.
Jay was a wonderful man, quirky and funny and loyal, and he’d always let you know exactly what he thought, about everything from global politics to an unfortunate lamp. So even if the ALS ice bucket challenge can verge on silliness and exploitation, it’s still doing valuable work.
