Part of what’s been puzzling me throughout this whole experience is the very question that puzzled the doctors at its inception: When did this start? And so I’ve been endlessly tracing my steps, as if locating that moment was the key that could unlock the door to all explanation. But at a certain point it doesn’t matter anymore where you started; at a certain point, it only matters where you are now, and where you go from here.
Of course, when you’re performing a piece of music, especially for other people, it does matter where you start. There must be a context. It doesn’t make sense to begin a piece in the midst of the middle development section of a sonata, or initiate listeners with the bonus content of a coda, the tail end of a piece. Playing music is just like telling a story: You begin at the beginning, and let everything else follow from there. This allows the listener the opportunity to understand how the entire piece unfolds from the smallest of gestures at the very start, how the first measures hold the clues to everything—structure, melody, shape, intent. Everything is there, if they are able to listen, if you are able to lead them to it as a performer. If it works, they will understand, even if what they understand is not your own specific understanding.
But when you’re practicing it doesn’t matter where you start. In fact, it’s better to start anywhere but the beginning. The more you can deprive yourself of context, the more you are able to fully pay attention to the work. Start at the end and work backward. Isolate the difficult measures of a secondary theme. Transform the dazzling, flashy, fast passage into a technical exercise, break down the cadenza, mirror your right hand with your left to understand the finger work, work in dotted rhythms, work at half tempo, work at the slowest tempo possible. Look at it all inside-out. Don’t allow yourself to be lulled into the story—unless, of course, it is the moment in your practice when you must be lulled, to understand what work is still left for you to do.
Practice is the back of a needlepoint, all tangled threads and chaotic stitching. Performance is the front, the pleasing picture whose existence depends entirely upon that messy hidden work. It’s the process, the daily practice, the work nobody sees, the hidden music, that makes performance possible.
Illness is the back of a needlepoint, all tangled threads and chaotic stitching. Full recovery is the front, the pleasing picture whose existence depends entirely upon that messy hidden work.
I’m not performing yet. I am somewhere in between the chaos and the finish. I am recovering. And so I can start anywhere. I don’t need to know where the beginning is, I don’t have to determine where it might be, I don’t have to choose a precise moment when it all started, and when it all went wrong. Because in practicing, it doesn’t matter, and the more I practice, the more I see that in life it doesn’t matter, either. I pick a point, and work from there, and that’s the work, that’s the point. Every day I work a little longer, increase my stamina, nourish my brain, and every day it helps me stop the futile quest for the answers to everything, which of course could never be located in one perfect, precise moment. Every day I continue to start where I am, because I’m not performing, not yet. I’m practicing.
37
June 2016
By early June, I have been practicing my piano brain therapy for almost two months, and when I check in with my doctors, they all ask me the same thing: “What the heck have you been doing?” My therapist and my neurologists note my improved facility with words, my improved ability to make connections, to understand concepts; my improved ability to have insight and to be able to express that insight, my improved ability to follow complex instructions and remember things. They notice my boost in executive function, my increasing ability to tolerate noise and other sensory information, my overall improvement in general. “Are you taking any new medication?” they ask me, and I tell them, excitedly, “No, this is my brain on music.” I share with them the findings of this highly-selective, ultra-biased, one-person ongoing research study I’m performing, and while they’re skeptical of its true efficacy, not to mention its replication possibilities, they’re happy to encourage me to keep going. “If it’s helping you feel better, keep doing it,” they tell me.
So I do. I try to spend forty-five minutes each day practicing piano, helping my brain get better, helping my dura increase its tolerance for sitting. At the point when I feel a sense of diminishing returns—when the playing becomes easier, when I notice my mind wandering instead of concentrating—I try to mix it up: sight-read unfamiliar repertoire, work on learning a piece that’s totally new to me, take a familiar piece of music and break it down so that I tackle it in small chunks starting at the end of the piece and working my way to the beginning. I try to fool my brain by taking things out of context, now that my brain is getting better at understanding context. I try to focus on both repetition and novelty, to encourage my brain’s ability to change, to reorganize itself, to heal.
By early June, it is also nearly six months since my procedure at Duke. The six-month mark has been a milestone looming so far in the future it seemed a myth. When I was leaking, time wasn’t a concept I could fully participate in. I couldn’t think in hours or days, couldn’t make plans for the next week or month; I could only exist in moments, one minute to the next, everything disconnected, discrete. In the beginning days and weeks after being patched, it was still difficult to think ahead, to project myself to a point in time beyond where I was at whatever moment I existed in at the time, because healing was still so new, so fragile, so time-dependent. When I began to feel better, when I began to improve, I began to have a better sense of what I was capable of—I could plan to take a shower knowing I would need a nap afterward; I could plan to be upright, walking around for an hour, knowing I would need to spend a corresponding hour lying down, recovering. And eventually, I could make plans a day in advance, a week in advance. It no longer seemed like an impossibility to think about the future and rely on the fact that I’d probably be able to be a part of it. I could make a plan for a faraway time and assume I might be okay by then, maybe even better than I was when I made the plan in the first place.
But it feels like tempting fate to think about meeting that six-month mark, the unit of time Dr. Kranz said it would take for me to know whether or not I was past the most tentative, risky part of healing from my patch. If I can make it to the six-month mark without the leak recurring, there’s a very good chance it might not recur at all. I’ll still have to hold my breath to make it to the one-year mark, when the chance of my spinal CSF leak re-leaking would be even smaller; but making it to six months without the leak coming back would be a very encouraging indication that my prognosis is good.
Still, it feels risky to hope.
“‘Hope’ is the thing with feathers,” begins one of my favorite Emily Dickinson poems, and right now I understand it, the small bird you hold in your hand, the lightness of it, the fragility, its fleeting nature, the possibility that, at any moment, it could fly away.
In the leaker group, I read posts from people who were patched months before me who never made it to their six-month mark, who began leaking again days or weeks after returning home. I read posts from people who were patched after me who are already leaking again. Occasionally there are encouraging posts from those former leakers who are “sealed and healed,” in the terminology of the support group, and back to living full lives comparable to how they lived before their leaks began; but most of the posts are about grappling with pain, with the uncertainty of whether or not a leak has truly been fixed, with the disappointment and grief of having a blood patch fail, of having a surgery fail, of having everything fail.
My best friend from the leaker group, Nina, the funny, upbeat former lawyer who went to Duke two weeks after I did, has been my patch partner, my partner in recovery. We check in with each other daily, comparing symptoms, commiserating with each other about the awfulness of rebound high-pressure symptoms, reassuring each other when those symptoms subside and seem to be replaced by the old familiar leak sym
ptoms. We make jokes about the medical realities of our lives now, the torture of sitting, the annoying, unyielding slope of the wedge pillow we hope to one day never again have to use. We dream about the day we are both free of headaches, rebound or otherwise, when we can have our lives back. “But this is our life right now,” she reminds me. “We’re not waiting, we’re in Year Zero, the year we start over.”
But as we get closer to that six-month mark, our paths begin to diverge. I’m experiencing far more high-pressure days than leak-feeling days, with the majority of my symptoms being due to the effects of a higher intracranial pressure than I’m used to; and she’s experiencing more leak-symptom days. No longer is she needing to sleep on a wedge pillow to prop her head up, and no longer do caffeine and salt make her headache worse. Lying totally flat now is what makes her head feel better, and caffeine and salt either do nothing, or ameliorate her pain slightly. She’s back to having only minutes of upright time before the headache comes on, looming into sensation at the back of her head. “I’m leaking again,” she tells me, “I know it”; but I don’t want to believe it. She has been suffering with her spinal CSF leak for so long, far longer than I suffered with mine. She’s been leaking for nearly a decade, she’s had multiple surgeries. She deserves to recover more than I do.
“Don’t be ridiculous,” she says when I tell her this, but it doesn’t feel ridiculous to feel guilty. I want us both to sail past the six-month mark, to fly through the eight-month mark, the ten-month mark, all the way to the end of Year Zero and the beginning of Year One, the year we will be past the bulk of the healing process, with all of this, hopefully, behind us. I want this for everyone who posts in the leaker group, for everyone who tells stories about jobs lost and marriages broken, about missed diagnoses and botched surgeries, about setbacks and complications, and losing all hope.
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 runs out: I slip on one of the top steps and fall hard, landing with my full weight on my right hip before tumbling down the other ten stairs and coming to rest on the landing. Nothing is broken, thankfully; but the bruises blossom immediately, and all I can think is: I’ve ruined it. I’ve torn the patches. I’m going to start leaking again.
I lie down with ice packs on my back, my butt, my knee, my arm where I caught myself on the banister during the fall, and I take some Tylenol for the pain. I’m supposed to take the kids to their grandparents for the day, but my skin hurts when I walk, and my muscles cramp from the assault. I put on compression shorts under my summer dress, even though I know they will squeeze me, squeeze my dura and make my brain foggy with an upward push of fluid, but the compression helps contain the sensation of the growing bruises, so I make the trade-off. I sit on the train gently, balanced on my left leg and butt cheek, since the right one is so tender, and every jostle makes me wonder if this is it, if I’ve torn open the leak spot, if all my recovery has been for nothing.
The pain from the fall at first is almost welcome, because of how different it is from the kind of pain I’ve become so used to. It’s almost a relief to experience pain that’s not a headache, pain
that has a different kind of immediacy and texture to it. And yet somehow, after a few hours, it starts to feel as though this pain from the fall has become the gateway pain to all the other pain in my body that has been holding itself at bay, waiting for the right time to manifest: I feel the ache of my arms, my ankles, my back, the nagging, worrying throb of a wisdom tooth beginning to emerge.
By the time we arrive at the grandparents’ house, when I check on my bruise I’m horrified to see it is already a massive red and purple welt covering my entire right butt cheek, and my jaw ache begins to morph from an annoying nagging sensation to an insistent stab. I lie down with ice packs on my butt and Orajel on my wisdom tooth, which has picked the absolute worst time to try to break free, and say to myself over and over, Please don’t let me be leaking again, please don’t let me be leaking again, a pathetic incantation that might as well be a leaker’s prayer.
I commiserate with the other leakers, posting about my fall, my hurting tooth, my worries that I might have undone my almost six months of progress. I tell Nina about my fall, about how my butt hurts, about how bad the bruise is, about how I can’t even tell if I have a leak headache because of how bad my tooth pain has suddenly become. As my bruises deepen and spread, it becomes impossible to lie on my back or my side, and I have to somehow sleep on my stomach while keeping both my butt and my head elevated, which seems as comical as it does impossible. The bruise darkens to a horrifying purple-black and I try to sleep with a heating pad on my butt as I lie in a constellation of pillows, googling things like ass bruise death and wisdom-tooth pain death and can falling down stairs give you a spinal CSF leak and can a person die from a really bad butt bruise.
The Beginning of Everything Page 25
