Christopher Jones died June 25, 2014, in Wayland, Massachusetts. He was 55 years old, and had already, in his meticulous way, chosen the music and readings for his memorial service, and the location for his ashes.
Raised in Indiana and upstate New York, he'd been a grown-up kind of child — the last to leave a museum, the first to demand precise answers to unanswerable questions. He started asking his mother about infinity when he was three, in the middle of a bathtub moment. She can’t recall the details of what she said, but its non-specificity didn’t satisfy him. In and out of the tub, he asked her the question again for years.
By 13, he was showing the symptoms of muscular dystrophy. He couldn’t be a sporty boy, and was bullied for it. Instead, Chris was a musical boy, a sweet tenor, who took up classical guitar. He moved to Boston for its conservatory, even though the weakness in his fingers was growing.
When he could no longer play, he sang passionately for the rest of his life in various choirs.
Over the next decades, as he became more disabled — cane to crutches to wheelchair — he also became more activist. On the church building committee, he insisted on accessibility (an elevator is named after him), and demanded an alternative to the scented candles that made some congregation members ill.
It wasn’t from a sense of victimhood. He hated the image of the heroic, inspiring disabled person. It was from a sense of what should be done. And as Chris grew more physically unable himself, what should be done became clearer to him.
He and his wife talked long and searchingly about parenting. Muscular dystrophy is an inherited disease. But fatherhood, when it arrived at 47, was a state of light. He threw himself into adaptation — a changing table he could roll his wheelchair under, a baby carrier he could strap to his seatbelt.
Once, he came into his daughter’s kindergarten class when they were learning the alphabet. He was scheduled to bring poetry on the letter “P” day. But he was sick, and had to postpone to a different letter. Even so, he read the kids Ogden Nash, a poem he and his wife and daughter all loved: “Behold the duck. It does not cluck.”
Maybe because he couldn’t move fast, Chris loved speed. As a child, when a train rushed into the station, he stepped forward instead of back. He constructed intricate model trains all his life. And when he was in hospice, dying, but still talking about taking his family camping, maybe traveling with them to Australia, certainly buying Red Sox tickets for the upcoming season, he also asked his father to finish the three trains he was working on. It was a quiet reckoning.
The readings he chose for his memorial had their hearts in common, though the writers had never met each other. “My soul has grown deep like the rivers,” Langston Hughes wrote. “There is only one like you in the whole world,” Mr. Rogers replied.
Did you know Chris Jones? Share your memories in the comments section.