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
