I do these things. I drink dandelion tea, I wear my ice turban; I stand, since sitting or lying down makes it worse, even though standing is still exhausting; I use my wedge pillow when I lie down. I quibble with the insurance company, which has billed me for both days, even though I left after half of one. It takes weeks for this infusion, this surge, to resolve, for my body to calm itself. I have rebounded, and this time the bounding part of it happens in slow motion, suspending me in midair, at the altitude of pain.
Gradually, the rebound gains a rhythm to it, begins to have its own ebb and flow over time. The infusion-induced spike fades back to the levels of my post-patching rebound high, and gradually my rebound high-pressure peaks become monthly, tied to my cycle, rather than daily—a week or so of terrible face headache and pressure fading back into the new normal of low-level face headache and pressure.
It’s comforting, in its own way, as nerve-racking as it is to have this constant anxiety of wondering if today will be the day that the pressure will be too much, will rip through the fragile reconstitution of my dura, will tear through the torn place. It’s comforting because, as worrisome as it is, as long as I have the high-pressure headache, I know that I’m not leaking. The rebound high pressure is proof that it’s working, that the seal is holding, that the leak is patched, however tenuous the patching may be.
Eventually, over time, this rebound high pressure will dissipate, the daily peaks becoming monthly peaks, becoming every-few-months peaks, becoming peaks that exist only when I forget and sit too long, or have too many Diet Cokes, or eat a too-salty thing.
Eventually, this rebound will align itself more with its proper definition, which is: to bounce back.
31
When you first begin piano lessons, time is a strict thing. The metronome is a looming wooden triangle on the music rack, a strange-looking clock, its one thin arm marking time by swinging faster or slower depending on where the adjustable weight is slid on the pendulum, a satisfying yet ominous, demanding, mechanical click emanating from it as it sets the tempo. Or it is a small rectangular plastic box leaning against the score before you, a dial to set the speed, a blinking light and digital click sound to alert you to the tempo. Or, now, it is an app on a phone, purely digital, a simulacrum of the old clockwork device, a visual thing, a movie of a metronome, a screen you slide and tap to set the pace, the volume. Whatever form it takes, the keeping and marking of time is exact and unforgiving, and a mainstay of early piano training. Scales and arpeggios become governed by the metronome’s unrelenting precision. Tricky passages of repertoire are practiced at slow metronomic speeds, the weight or dial or slider gradually moved to increase tempo as the passage at slower speeds is mastered. All of this to help the pianist internalize a sense of time, to help bring awareness to the places where there is a tendency to slow down, to race ahead. All of this to help regulate.
In the beginning, this is to help establish what time feels like, to bring awareness to the differences between the experience of internal time and the reality of external time, the differences between what you hear in your head while sitting at the instrument and what listeners hear while sitting across the room from you when you play. And for that purpose, time is strict, mathematical, precise. Deviation from tempo is a mistake to be corrected, whether it’s slowing down because a passage is too tricky for a beginner’s fingers to manage at full speed, or speeding up because of the excitement of momentum, your fingers a perpetual motion machine becoming increasingly faster and in danger of crashing to a halt. Being grounded in time helps you bridge the gap between what you feel when you play and what people hear when you play it. It helps the player become a reliable narrator, a performer in control of the material, putting an audience at ease through the regularity of tempo, no inconsistent slowing and surging, no speeding up like a runaway train.
But later you learn—after years of having precision and stability and predictability and consistency ingrained in your fingers, your muscles, your ears, your brain, your body—that time is not strict, or rather that there is fluidity within its structure. It’s a bit like the moment you discover, after thinking for so long that numbers are static and progressive and inviolable, that one comes after zero and two comes after one, and that’s the way it works, that there is actually an infinity of numbers between zero and one, and one and two, and so on. There is an infinity of time between notes, no matter how rigidly the metronome insists otherwise, beating on and on, exactly so, and the job of a true musician is to understand how to play with that time, how to manipulate that time, how to play within it.
There is a law of conservation with time and music, just as there is with physics. The total time of a piece remains constant, and yet the time within it—stretching out a phrase for emphasis, condensing a passage to heighten its impact—is fluid. Any time you take from one place—slowing nearly imperceptibly as you resolve a chord, for instance—must be made up in another, otherwise the performance would be as rambling and uncontrolled and ramshackled and unpracticed as a beginner’s who doesn’t understand the importance of the larger consistency of time, and who thus cannot respect the infinities within it. But to be able to take those liberties, you must have a solid basis, a solid grounding, not only in the practical, literal, written score, but in the body, in the practiced muscles and ears and brain.
Early practice, the first approaches to a piece of music, if it’s done smartly and with an eye toward building a performance from a solid foundation, takes into account this fluidity of time, this infinity between each note, because early practice is slow practice. If revision is the heart of writing, then slow practice is the heart of playing. In slow practice, you can savor time, because you are outside of time. You can sink into each note, each chord, and allow your muscles to relax into place, allow your brain to align its pathways, new connections forming as you repeat and replay, because this, too, is the hallmark of early practice, and of being outside of time. Repetition, and slowness, and the gradual learning and relearning and telling and retelling of a pattern, of a process, of a progression.
This kind of work, this slow, deliberate work, outside of time but decidedly within it, taking place over a passage of time, is like recovery.
It is a kind of healing.
I have been outside of time, even as time passes, for so long with this illness, and with this recovery. Time, when I was leaking, was stasis: the ceiling above my bed, the walls of my room, nothing changing as I lay flat day after day. And yet all around me time was passing. I could hear the low whoosh of cars driving past outside my windows, the clock tower bells from City Hall chiming toward me some quiet days. My children, growing taller, becoming more and more themselves every day, outgrowing their clothes, their faces acquiring cheekbones, morphing into adult shapes. Nothing stopped merely because I stopped being able to participate in it. Even within my own body time continued its pace, blood circulating, fingernails growing, hair graying, monthly cycle cycling, all the cycles cycling of sleeping and waking and hunger and elimination. So I was suspended in time even as time continued around me and within me, I floated in the infinity between one note and the next, between one number and the next.
Can a self exist outside of time? When I was leaking, I felt as if I had no self. Or rather that the self I thought I always had been, and that had always been in charge, was in fact revealed to be a fiction, as imaginary and theoretical as in-between-numbers infinity. I had made the rookie mistake of confusing my mind for my brain: I thought that “I” was the driver of all my thoughts and decisions and actions. But, deprived of enough cerebrospinal fluid for my mind to function properly though my brain continued its work, it became clear that this “I,” this self, this mind, was no driver at all, that in fact the proper mechanical analogy might be that if my body is a car, my brain is the driver, and my mind, in fact, is merely a passenger. This makes me think of two things: of the amusement park rides where you “drive” cars, which in fact are entirely programmed
to go where they need to go, without your doing anything at all; and of a toddler, sitting in a car seat, in the back of the car, with a pretend steering wheel, imagining that he is driving the big machine. My self, my mind, all along, has been this deluded passenger, this backseat driver, while my brain and body oblige it, allowing it to believe it’s in charge while they continue their work.
Stuck in time, my mind is exposed as a thing entirely separate from the ongoing duties of my brain. Recovering means integrating these things, rejoining time. Returning to the myth of myself as the true driver.
In real life, I don’t drive at all. I walk everywhere. If I need to go someplace far, I use an app to summon a car service.
I don’t even have a driver’s license.
Rests do not mean “to rest,” my piano teacher told me, back when I was still a teenager, at the conservatory, learning how to think about music, about art. This an opportunity to stop time, prepare. Sometimes savor. Do you know what this means, stop time? You hurry, hurry. But there is time. Feel it. Rest means active. There is music even in the waiting, even in the silence.
I still hurry, hurry. I still resist rest, I still resist stopping time. But right now resting is required, mandatory. Not just by doctor’s orders, but by my brain. I sleep so much, I need so much sleep. Being awake is exhausting, talking and thinking is exhausting. Reading a paragraph or two requires a nap. But I think about what she said, about this being an opportunity to prepare, in the stopped time; about the way resting can be active; about how there is music in the waiting, in the silence. And I try to be patient with it instead of fight it. I try to savor.
I am in the slow-practice phase, I realize, in my life. Repetition and slowness. The learning and relearning of what I am capable of as I heal. The telling and retelling myself and others of this story, to make sense of what has happened and what continues to happen and what might happen. The gradual process of a progression toward baseline, which is both a return to a place and an entirely new destination.
Eventually I will play with time again, stretch it out and compress it, find the places to lightly rush and to deliberately languish. For now I am in the process of sinking into the slow, measured phrase, learning to allow my brain to think in time again, each day a slow tick of the metronome as I reengage with the practice of living.
Pain, as a submodality of somatic sensation, has been defined as a “complex constellation of unpleasant sensory, emotional and cognitive experiences provoked by real or perceived tissue damage and manifested by certain autonomic, psychological, and behavioral reactions.” . . . Pain is described as having different qualities and temporal features depending on the modality and locality of the stimulus, respectively: first pain is described as lancinating, stabbing, or pricking; second pain is more pervasive and includes burning, throbbing, cramping, and aching and recruits sustained affective components with descriptors such as “sickening.” The intensity of these global reactions underscores the importance of avoiding damaging situations for survival and maintaining homeostasis. As opposed to the relatively more objective nature of other senses, pain is highly individual and subjective, and the translation of nociception into pain perception can be curtailed by stress or exacerbated by anticipation.
—Adrienne E. Dubin and Ardem Patapoutian, “Nociceptors: The Sensors of the Pain Pathway,” The Journal of Clinical Investigation, November 2010
32
March 2016
Back at the headache center for a follow-up visit, I fill out the same old questionnaire: Are there any events that have affected your headache? Have you had any headache-free periods? On a scale of 0-10, how severe are your headaches? Have your headache symptoms or location changed?
There are no questions that are tailored to my own particular experience of having a spinal CSF leak and getting it patched, no inquiries about pain that take into account my particular circumstance. Each time I must explain to the doctors I see that the headaches I have now and the kinds of pain I’m experiencing exist as a reaction to the procedure I had done and the amount of intracranial pressure I’m sensing now that my cerebrospinal fluid isn’t leaking out anymore.
Headache pain of any kind, especially headache pain that is chronic, is still a mystery for doctors and patients alike. “Headache” is a description of what’s happening, rather than a description of what’s going wrong in the body. And pain, from the Greek poine, meaning “penalty,” from the Latin poena, which means “punishment”; pain itself is of course subjective. Pain feels like a penalty, like a punishment, the price you pay for a message from your body that something’s not right. Sometimes this punishment can be deferred, as in those times of immense adrenaline-rushing stress, when you don’t notice the pain of an injury until after the intensity and immediacy of the moment has passed; and sometimes this punishment builds upon itself so much that, rather than your being able to delay the sensation of it, you become overly sensitive to it, and it no longer takes the same amount of pain for you to experience the sensation of pain at all. Pain becomes its own cycle of sensation, almost separate from the original bodily signals that provoked it in the first place.
Throughout the process of my dura leaking cerebrospinal fluid, my main, most durable, notable symptom was pain: omnipresent, chronic, and overwhelming, and located, seemingly, in my head. And yet my CSF leak was not itself located in my head. I didn’t have a cranial leak, but my pain was entirely within my cranium, almost exclusively focused in the right side of the back of my skull. Part of why the pain of headaches is particularly confounding is because while the experience of pain usually has a localized nature, or at least feels like it exists in a certain spot, like my CSF leak headache, exactly where those pain signals originate from is not straightforward. Pain sensation in the head is generally transmitted via nerves that all bundle together in the region of the spinal trigeminal nucleus, a cluster of neurons that receive information about touch, pain, and temperature from cranial nerves including the trigeminal nerve, the facial nerve, the glossopharyngeal nerve, and the vagus nerve. This tangled bundle of nerves is part of why the precise cause of headaches can be difficult to isolate, and why pain felt in certain parts of the head can in fact be generated from locations elsewhere in the head and body.
There are a few theories about what exactly causes headache pain in people with spinal CSF leaks. The most obvious one is the loss of cerebrospinal fluid and the resulting lowered intracranial pressure: When a person with a spinal CSF leak stands up, that loss of brain buoyancy, and the effects of gravity while a person is upright and the brain shifts downward, can put pressure on pain-sensitive structures in the head and neck. Another theory is based on what’s called the Monro-Kellie hypothesis (named for the two eighteenth-century Scottish physicians who coined it), which posits that within the rigid compartment of the skull, there is a constant pressure-volume relationship between the brain, cerebrospinal fluid, and intracranial blood. A decrease in any one of those three things is compensated by an increase in the others. When the amount of cerebrospinal fluid is lower than normal, due to a leak, this volume has to be made up somehow. Brain tissue can’t really expand, at least as far as we know; and so what happens is the intracranial blood vessels start to dilate, to compensate for the lack of cerebrospinal fluid. This expansion of arteries and veins, which increases rapidly when a leaking person stands up, can be a painful sensation.
Another explanation of what causes pain in people with spinal CSF leaks involves the notion of compliance, or craniospinal elasticity. Just as some individual people can be more psychologically resilient than others, individual people’s physical anatomies can be more resilient than others (such as in Dr. Kranz’s example of the dural sacs of two different hypothetical people with the same level of spinal fluid pressure, one of whom has a dura that is flexible like a latex balloon, and one whose dura is more rigid, like a Mylar balloon). The headache pain that is such a hallmark of spinal cerebrospinal fluid leaks may come from changes in com
pliance. The amount of compliance or flexibility within the cranial space is limited, since it’s a closed space covered by an unyielding, impenetrable skull: The intracranial blood vessels can dilate, as in the Monro-Kellie hypothesis, but there’s only so much room for expansion. In the lumbar region, however, there’s more room to expand, as there’s no skull to contain it, only the self-limiting capacity of the tough (but more flexible than bone) dura. So there is a contradiction: the dura tight and noncompliant in the cranial space, with veins dilating and becoming stiffer, more engorged with fluid; and the dura looser and more floppy in the lumbar space, where there’s more room to expand, and where, due to gravity and a leak preventing the normal flow and circulation of spinal fluid, the fluid can collect, stretching and straining the dura mater. This contradiction, this interruption of the normally uniform distribution of craniospinal elasticity, can be a factor in causing headache pain.
The dura mater in general is not a stretchy thing, and although it accommodates changes in fluid pressure, it’s not elastic in the way we think of a rubber band or a bouncy ball being elastic. While I was leaking, the dura was explained to me in many different ways. I heard it described as a thin covering, like a cloth. I heard it described as a hollow plastic tube. I was told it was like packing tape, the kind with strings throughout it for added toughness and durability. I was told it was like duct tape, the super strong and sticky kind that’s hard to puncture. I was told it was a kind of connective tissue, which it is, and not a muscle, which it is not, and that it wasn’t something I could either strengthen or diminish through exercise or physical therapy. But what I didn’t realize was that this tube, as thin as cloth, as tough as packing tape, is, as yet another doctor explained, richly endowed with nociceptive fibers. Which means that this plastic tube encasing the brain and spinal cord is capable of sensing and transmitting pain.
The Beginning of Everything Page 20