For all my talk of the world-changing power of sharing our stories, there are some stories that I have trouble sharing, because they’re too hard to write about, or because I worry about the impact of sharing them, or because they’re not my stories, and even if I have permission to share someone else’s story – like, say, Tanner’s – sharing someone else’s story is always an enterprise that pitches me into a state of anxiety. What if I tell it wrong? What if I don’t do it justice? What if it provokes the kind of ugly reaction that I’m comfortable receiving on my own behalf but which sends me into emotional turmoil when it involves others, and especially those whom I love?
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.
Today, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs to be intubated? Until he can no longer sit up on his own? Until his lungs are compromised? Until he cannot breath on his own? Until my sister can no longer look after him on her own? Until, until…