Between my fall and this strange response to medication, and my waxing and waning high-pressure symptoms, my recovery feels very much plagued by setbacks, events that cancel out any progress I’ve made. It’s frustrating: I’d thought that once I’d passed the six-month mark, it would be smooth sailing, or at least a steady progression of improvement, no more zigzagging through a series of progressions and relapses. But that’s not how this goes, I’m learning. Nothing about this process is easy or predictable. It’s messy, it’s inefficient, it’s uncertain; it’s human.
Practicing piano helps my brain feel a little more in control of a process, breaking things down and building things up again, raveling and unraveling, performing exercises to solidify a skill, but working in such a way as to be able to take advantage of a spontaneous moment, to try something new. Beginning to write again is more daunting: I can write in small bursts, but I have to think about it a lot before and after; editing, a thing I used to be able to do as easily as playing a Beethoven sonata, is another thing that now must be reduced to its component parts in order for me to understand it. I write a little, and then, instead of being able to edit what I’ve written on-screen, or even mark it up on a page, I have to print it out and cut it up, make each sentence mobile, manipulable, able to be physically moved around in space so that I can better understand it in the context of time, of succession. When I confess this technique to a writer friend, she laughs at me: “That’s literally how I work!” Still, it is strange to me that things that used to make sense as purely invisible thoughts and ideas now only feel real and understandable when they are physical, palpable things I can manipulate with my body instead of my mind. But I try to adapt: I print things out and cut them out and move them around and retype them, and, just as with my piano practice, it does get easier.
I recommit myself to taking things slow again, recommit myself to the slow practice of sinking into my life and taking my time, doing the physical things I need to do to get well, allowing myself the mental space to continue waiting things out, growing stronger, getting better, getting my systems circulating again the way they’re supposed to. Reestablishing a rhythm with my kids, allowing them the relief of seeing me improve and reassuring them on the bad days that this is how it goes: slowly, and not in a straight line. This helps them, too, I think, knowing that slow progress is still progress, that they’re okay, too, that things are happening even when it seems like nothing’s changing. That part of the process of this, of all of this, from my illness to their adjustment to our new family configuration, is acknowledging the meandering nature of growth, its natural mystery.
My friend Nina’s mystery is also beginning to be uncovered: After months of decline after our post-patching paths diverged, the reason for her recurring leak is becoming clear. She returns to her neurosurgeon in Boston, who had performed a previous surgery on her spine, and when he goes in to look for the source of her continuing spinal leak issues, he discovers something he’d never previously encountered in a patient before: a rogue blood vessel, shooting out of a nerve root sleeve in her spine, shunting cerebrospinal fluid away from where it should be and sending it into her circulatory system. She was leaking due to what’s called a CSF venous fistula, an abnormal channel between the space where cerebrospinal fluid is and a vein outside the dura. This is something difficult to see on imaging; and yet it explained why in her case the numerous blood patches she’d had had done nothing to seal her up. Because the problem, in her case, wasn’t a tear or a leak. It was her own body, siphoning off cerebrospinal fluid through a vein. She has this vein repaired, tied off so that it can no longer redirect cerebrospinal fluid away from where it circulates within the dura, and now she waits. Her Year Zero clock is reset, beginning again, restarting her recovery, just as I’m about to begin my own personal Year One.
40
I am an unreliable narrator.
In truth, I always have been. I know this now.
Long before my brain became a fish out of water, long before my cerebrospinal fluid slowly began to seep away through a tear somewhere along my spine, I understood in a general sense that there were moments when I was fooling myself, talking myself into a story to force my life to make more sense, adjusting that story when it butted up against subtle but inconvenient points of reality, revising that story into a tidy narrative that worked, even if it wasn’t exactly one hundred per cent true.
Even in those times when my life seemed to hand me a story ready-made, and I wrote it down or retold it to someone else like a faithful reporter of facts, I understood that the mere act of including facts in a story did not make that story necessarily true.
A storyteller is constantly deciding: Which facts do I emphasize for importance? Which facts do I elide for simplicity? Which facts do I ignore outright because they don’t fit, or because they interfere with the satisfaction of a neat ending?
But all of these questions assume there is an I there to do the deciding, that there is a larger underlying, never-changing, reliable fact of perspective: the fact of Me.
But now I know that this fact is
