I came across this article in the NY Times back in March (find it here). I’ve been holding onto it unsure what to say about it, letting it steep.
The article is about writer Neil Selinger and his first book coming out, all against the backdrop of his ALS diagnosis two years ago. When I first read the article, I instantly recognized his name. We were in a writing class together at the Writing Institute at Sarah Lawrence a few years ago. I remember his first drafts of pieces that presumably became a part of his book, A Sloan Product (you can find it here). When I sat across from him, though, he bore no outward evidence of what I now know must have been newly diagnosed or soon to be diagnosed ALS. He was a recently retired lawyer with a kindly face and a soft voice. Like the rest of us, he was there to dip his toe in the writing pool, try out his stories and their telling on us, listen stoically to feedback.
The progress of his disease has been devastating. As the article describes, “Now, two years after a diagnosis of amyotrophic lateral sclerosis, Lou Gehrig’s disease, he has deteriorated with heartbreaking speed from cane to walker to wheelchair, to puréed food, an inability to speak and almost total immobility”. His friends and neighbors formed a group that takes turns cooking, driving, walking the dog. His writing group from Sarah Lawrence moved to his house. His mentor and members from the group read from his book at his book party as he could not.
So Neil’s story is tragic, yes, but fortunately, that’s never the whole story. There’s also the part about the light that glimmers in the darkest of places. How grace sidles up right next to calamity. The unexpected twists and turns of what’s up ahead, the stream of life carrying us to places we’d never imagined. How our bodies are so little of what we really are, how the spirit aches for expression. How you can’t keep a good story (or writer) down. In the vortex of the unraveling of his physical body, he finished his book while he could still type with one finger. He continues to write using a special machine that responds to his gaze. And probably my favorite, the goodness of people sticking by people: (from the article) “He thinks often of a Springsteen song with the lyrics: “And should I fall behind, wait for me.” He is amazed that so many people have”.
“There is a crack in everything, that’s how the light gets in”.