DIED 2015
THE ORIGINS OF THE idea of dumping cold water on one’s head to raise money for charity are unclear, says Wikipedia, but in the summer of 2014, that wacky idea went viral, and videos of the Ice Bucket Challenge were legion. Once soaked, the dripping victim would pass on the challenge, and the person named would either have to donate to ALS research or get dunked him- or herself, though most did both. One of these videos now lives on the website of KSAT, a television station in San Antonio. In it, a man in a wheelchair, a man who cannot move or speak, has fourteen buckets of ice water poured on his head while his mother and his best friend address the cameras.
Unlike similar videos, which are hard to watch because of the vicarious head-freezing, this one is hard to watch because the man’s limbs are wasted and his body is curled in on itself, his neck is crimped, and his beard is prematurely gray. He is forty-two, and he has been living with this disease for fourteen years. Using the last working muscle in his body, he can approximate a smile, and he does, briefly, with half his mouth. His eyes tell another story, electric with yearning.
He was a rock climber, a kayaker, and a wilderness guide, a fearless adventurer and a hopeless romantic poet, and he was not out of his twenties when it began. First the stumbling, the strange weakness, the trouble swallowing. Then the diagnosis, a string of terrible syllables that stood for losing everything, not just locomotion and speech but laughter and sex and beer and pushing his hair out of his eyes.
This broken young Hercules came from a line of men rooted in Wales, blessed and cursed by the stubborn belief that they could do the impossible. His grandfather had escaped from a German POW camp. His father, who was the boss at the software company, had saved people from burning buildings, had learned whole computer languages in the course of a single weekend.
Fourteen buckets of ice water. One for each of the fourteen years. And then a smile. I hope the cruel gods were watching.