The last line of the Emily Dickinson poem says of hope, this feathered thing, that “Yet—never—in Extremity / It asked a crumb—of me.” And it may be true that hope asks nothing of us. But it feels sometimes like hope is a lot to ask for in the first place. For the people on the board who are still suffering, for people like Nina, hope seems like nothing but crumbs, and it doesn’t seem fair for me or anyone else to hoard them. I feel a gnawing survivor’s guilt, as pressing and real as the fear of relapse.
Even if I do make it to the six-month mark without leaking, there’s still the chance that I could start leaking again at any time; it’s just that the chance is smaller. The uncertainty is still there, no matter what milestones I hit. “You can do it,” Nina tells me. But I’m not sure. I hope she’s right, and yet I don’t want her to be right, because I don’t want to do it without her, I don’t want to do it if it means leaving her behind. I don’t want that to be how the story ends, for either of us.
Endings are tricky, though. How will we ever know when this is over? Is there a point at which we can truly stop worrying about relapsing? We have both spent countless hours trying to trace our way back to our beginnings, attempting to find the source, the starting place where it all went wrong; and we have both come to understand the folly of thinking that there could be one moment that changed everything, even if we could find it. Endings seem to be as futile as beginnings: just as difficult to find, maybe even impossible to pinpoint, and equally beyond our control.
I keep practicing piano, starting at the beginning and playing through to the end, starting at the end and working my way through back to the beginning. I keep thinking of how a piece of music is a closed system, like the central nervous system, like the dura that encases my brain and spinal cord, and of the variability and fluidity that’s contained within it. I keep thinking about time and how repetition helps my brain, and how practicing is all about repetition, and how even in repetition there is variation.
There’s an old music joke: How do you get to Carnegie Hall? The punchline, of course, being Practice, practice, practice. It’s not exactly funny (in the way that older jokes aren’t always funny to modern ears), and it’s not exactly true (in the way that practice alone isn’t a guarantee of high-level artistic proficiency)—but there is a piece of truth built into the joke, and the clue is in the repetition of the punchline. Practice, practice, practice.
Practicing piano is all about practicing repetition and expecting new results. Playing scales and arpeggios over and over, solidifying movements into muscle memory. Breaking down patterns, recognizing patterns, repeating them to make music physically easier to play, easier to understand. The very idea of music itself is built on repetition: repetition of melodies, of phrases, of chord progressions. Repetition is even built into the musical structure of a piece, ideas iterated and reiterated. From the sonata form of exposition, development, recapitulation—taking a theme, developing it, and placing it in different contexts, making it all the more meaningful and savory when the theme returns, repeated in its original form—to the verse-chorus-verse-chorus-bridge-chorus structure of contemporary pop songs. It’s all about repetition.
There is another joke about repetition, doing the same thing over and over and expecting new results. The punchline to that one, however, is that that is the definition of insanity.
But I keep moving forward, keep practicing, keep repeating, keep tracking my symptoms, keep checking in with Nina and hoping against hope that we can meet our six-month mark together, our brains foggy with sealed-up pressure instead of leakiness. “This is the goal,” Nina reminds me. “To get better. It’s fine if you get there first. You can do it for both of us.” But I want to bring her with me, to the other side of the six-month mountain, where we can rest together after the high-pressure climb to the summit, never to repeat it.
38
There are several things leakers live in fear of after having their spinal CSF leaks patched, all of which are made more terrifying by the fact that these fear-inducing things are actually all normal, everyday occurrences. Everyday life becomes fraught with tension, infused with the low-level anxiety of a horror movie, as we try to move gingerly through the world without disturbing the patches, awakening the beast, restarting the leak. I dread the prospect of a summer cold, fear the consequences of a sneeze, under no circumstance do I ever want to find myself in the grips of a coughing fit. I worry about bending forward too forcefully, about twisting too hard, about running, about jumping, about falling.
I have been lucky thus far to avoid the school-borne colds and bugs my children bring home with them—“It’s nothing personal,” I tell them, as I slowly back away, avoiding their hugs, moving myself out of the line of fire of their coughs and sneezes, “I just never want to cough again ever in my entire life. You guys get it.” But then one morning while walking down the stairs, mere weeks before hitting my six-month, no-leaking milestone, my luck
