A few weeks ago at SXSW in Austin, Texas, the lovely Karen Walrond sat me down and asked me a few questions about heartbreak. Not about the sad and the terrible and the woe-is-me of heartbreak, but about the beauty of heartbreak. And it was a wonderful and, I think, important conversation, because there is beauty in heartbreak, such that it’s actually misleading to call that exercising of the heart a break. The heart never really breaks. It pulls and stretches and moves and expands, and that movement can hurt terribly, but it’s not a movement toward breaking. The heart is not bone or ceramic or glass, Debbie Harry’s assertions notwithstanding. The heart, as I’ve said before, is a muscle. Its movements are extraordinary, even when they hurt. I needed to remind myself of that.
Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of his boyhood in the ways that other boys take for granted – but now, there are only somber descriptions of what will happen next, of what needs to be done to make things easier, of what use can be made of his diminishing time.
They want to put rods in his spine, she tells me. So that he can stay upright for a bit longer.
Rods in his spine. He won’t be able to bend, I think, before remembering, he cannot bend now. Not in the real, active sense of bending, anyway: he slumps, he droops, he slides forward in his chair, unable to hold his own weight even while sitting, a Pinocchio without strings. His spine is collapsing under the weight of his body, his muscles having deteriorated beyond the point where they can provide any support. He’s like a doll now, a puppet. But he has no strings by which he might be pulled up. He has no Blue Fairy to wave a wand and make such strings unnecessary. He has only surgeons, and rods.