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1. Aching for Repair
On a June afternoon in 2014, I lay in bed, body screaming and brain ablaze. Ears buzzing, I barely heard the phone ring. Someone from the physician’s office was calling to report multiple red flags on my recent blood panel. I was told to go to the emergency room right away. My partner picked me up, and on our short ride to Mt. Auburn Hospital, I braced myself for the worst. I feared the doctors would tell me my system was shutting down. But I was just as afraid they’d say I looked fine enough and then send me away to continue a half-life of mysterious chronic pain. By this point, I had gone months scarcely able to eat or sleep or get out of bed, much less work or play piano or socialize. The week before the ER visit, I had passed out twice from pain, the first time landing on my back, the second time smacking my head against a desk on the way down.
After an electrocardiogram, blood draw, and physical exam at Mt. Auburn, an affable doctor delivered the verdict that I desired and dreaded: no emergency. Besides signs of malnourishment and fatigue, he said, my condition wasn’t critical. Everything looked good. I could tell from his smile that he thought he was giving excellent news—surely a rare commodity in the ER—so I forced a croak of thanks. That night, as I tried to celebrate staying alive, I watched reruns of sitcoms in hopes that the occasional joke might tease an involuntary laugh out of me, against all odds. No such luck. I heard canned tracks of people laughing without me and saw cool comedies unfolding in spite of me. But the noise was still better than my body’s abject vibes. Around this time, I was sobbing more than all of Julianne Moore’s roles combined, though my breakdowns weren’t nearly as pretty. Anytime I cried, I couldn’t tell if I was yearning for a life before this pain, irretrievable; the present gauntlet of pain, intolerable; or some future relief, unimaginable. Tears ran together anyway, just vapor in the end.
Daydream in Thunder
It all began a year earlier, the summer of 2013—a searing feeling that spread across the abdomen and under the ribs, like a stomachache that never let up, with or without food, day or night. A constant companion, the pain wrenched me awake in the morning and beat me into uneasy slumber each evening. Medications, herbs, and dietary changes had no effect. A workup of endoscopies, ultrasounds, CTs, and MRIs turned up nothing. With each clean exam, doctors congratulated me, exclaiming I should be relieved that I didn’t have ulcers or celiac disease or esophageal cancer. I sensed my body shutting down in slow motion and my mind coming apart, yet experts and charts and numbers and hard evidence—everything I trusted (as a scholar, as a person)—were saying I was okay. Nothing felt more real than the pain, but I started doubting its reality all the same. For once in my life, I wasn’t seeking normal. I didn’t want to pass in society or pass medical tests with flying colors. Although I recognized my tremendous privilege of having access to healthcare, this acknowledgment didn’t mitigate the worst moments, when implosive pain would collapse any belief in bearable, much less privileged, existence.
Gastroenterologists didn’t know where to start. They were perplexed as to why acid-inhibiting drugs were ineffective and why the gentlest palpations of my abdomen caused me to flinch greatly. Light contact—hugs from friends, a fitted shirt, or even dangling wires of Apple earbuds—fired twinges across the torso. One doctor concluded that I was overly sensitive to pain and sent me away with a vague diagnosis of functional dyspepsia. Thus began my resigned migration from internal medicine to pain clinics, from specialists I hoped could solve the problem to those who worked damage control.
Waiting rooms at pain clinics were hushed places. First rule of the clinics: no talking in the clinics. Sounds may disturb. Newcomers would quickly grasp that words weren’t welcome. Patients snuck glances at one another but never held a gaze for long. Perhaps we feared that, with eye contact, we would see too much of one another’s pain as well as the sorry reflections of our own. The only breaks in silence came from the greetings of nurses who fetched us one by one. They’d say to a patient, “How are you today?” and more often than not, the patient would mutter, “Good.” A pleasantry, an empty exchange. Just vibrations, sounds of good without much truth.
Once inside the physician’s room, questions didn’t get any easier. Inquiries such as “Where does it hurt?” led me to gesture toward my abdomen, but if I wanted to be more comprehensive, I would’ve also mentioned my seized-up back, my locked hips, my throbbing head—just . . . inside. “Pain is a symphony,” points out Atul Gawande, “a complex response that includes not just a distinct sensation but also motor activity, a change in emotion, a focusing of attention, a brand-new memory.” It’s easy yet wrong to assume that most people with chronic pain experience the totality of their pain in one localized area of the body. Cascades of pain can lead to physical inactivity, tension, depression, alienation, loss of appetite, and side effects of medication, taking compounded tolls. A symphony; or rather, cacophony.
Sometimes, talking did help. I began meeting weekly with a cognitive behavioral therapist, Heidi, who imparted mindfulness techniques and encouraged me to keep a diary of my pain levels and feelings throughout the day. The result has been a sixty-page-and-counting document of pain scores (0 to 10) and strings of broken prose erring on the side of sad. Two things Heidi said have stayed with me. First, without feeding me promises that it gets better, she told me I “can still live a beautiful life” even with chronic, idiopathic pain. But during actual moments of excruciation, reclaiming beauty struck me as an impossibility: I felt wretched (emaciated, dejected, antisocial); believed I sounded bad (inarticulate, curt, defeated); and, even though I would go on walks along the Charles River and will myself to take in beauty everywhere, I usually ended up coveting all this resplendence as the pageantry of an alternate universe fairer than my own. Heidi’s second insight: “Any pain is endurable if you know it’s temporary.” All pain is, of course, temporary in that death promises release. The question is whether there’s life after pain.
I spent the next year in a daze, sleepwalking through entire seasons, now just yawning gaps in my memory. On the worst days, I didn’t leave my apartment or eat or speak. On the best days, I wore a taut mask and forced myself outdoors. My ears rang inexplicably like church bells on the fritz. My vision came smeared with scrawls of floating dots and graffiti. Unable to focus or sit still, I found it difficult to read, much less write. Among prescribed medications, the drug gabapentin caused aphasia, leading me to grope for basic words like curtains or polo shirt. Syllables would sit on my tongue, then dissolve. Emails took an eternity to craft, and in live conversations, my speech was full of holes. Elaine Scarry’s thesis in The Body in Pain—about the opposition between pain and creation, and about pain’s language-destroying and world-shrinking effects—rang true in my case. I ceased producing and was no longer invested in making anything of myself. My priority wasn’t moving up and advancing my career, but simply going on. And instead of worrying about what scholarly legacy I could leave behind, I fantasized about leaving . . . period. Ideas of nonexistence lost their bite. A few depressive episodes earlier in life had been attended by angst about mortality, despite an otherwise healthy body. Yet with health now failing for real, death’s threats sounded hollow.
Suffering blackouts, hallucinations, and nightmares, I could feel my tether to reality starting to fray. In the spring of 2014, I had published a book about music and video games, with case studies devoted to explorations of porous boundaries between the real and the virtual. But none of this knowledge kept me grounded. Fancy deconstructions of the real-virtual binary didn’t ease my plight, nor did my familiarity with pertinent literature. In the clutches of pain, I couldn’t translate critical insights into palpable doses of relief and resilience. Pretty prose floundered against ugly feelings. Social models of disability didn’t contain instructions on how to cope. Compassionate theories of pain’s inexpressibility didn’t remedy my loss for words. Knowing that others had gone through ordeals similar to (or far worse than) my own didn’t make me feel less lonely. I became profoundly, sometimes ragefully, envious of people around me who looked pain-free, from a smiling barista to the hardcore cyclists braving Boston traffic. But I also began thinking about how even people who looked indomitably happy and able-bodied might be enduring pain all the same. Around this time, I tried picking up on others’ chronic pain, the vibes of friends and strangers who may keep agony shut up in stoic facades. Small clues here and there: subtly raised shoulders, a grimace under a grin, sentences punctuated by breathy cadences. Maybe I was just projecting my problems onto others. But I couldn’t help suspecting some of us shared memberships to a secret club of afflicted bodies, even if we all returned to our own homes at the end of each day to wither and burn, alone.
Alone at home, then, I sought answers on the Internet. Online message boards for chronic pain were inspiring and disheartening in equal measure. People related devastating stories and cried for care (figure 1.1). Many messages were rife with grammatical errors and misspellings and non sequiturs and ellipses. But these posts weren’t incoherent. Rather, they were painfully coherent, a surplus of expression in typos and caesuras. Entering these forums was like walking into a thunderstorm: no triage, just a booming world of hurt. The gist of every post was the same. People were exclaiming (as they say in cell phone commercials): Can you hear me now? Now—right away, please. Pleas shouted into the ether in hopes of fetching echoes. On rare occasions, someone would come bearing happy news (that the pain’s under control, or a cause has been found) and receive an outpouring of congratulations. Usually, this fortunate person would then vanish from the forums, never to be heard from again. And who could blame them? Go, fly, live. Maybe some day everyone will join you.
One bad night, I was in bed scrolling through an online support group when I came across a post, dated two years back, by a man who listed a phone number. He was experiencing complex pain syndromes, his insurance was maxed out, and his doctors had pretty much given up. He couldn’t take it anymore. If someone could reach out, he said, please call, please care. As if by reflex, I picked up my phone and punched in the number. Before pressing dial, I paused: what if he remained sick, and I could only console him with clichés? Much of my own internal dialogue was a merry-go-round of “No pain, no . . . ,” “What doesn’t kill me . . . ,” “Blessing in . . . ,” “Look on the bright . . . ,” and other fragmentary mottos punctuating the rhythms of hard days. Or what if he were well, and he made me feel queer for calling a stranger’s number and disturbing a peaceful family dinner? Risking mild embarrassment, I dialed the number.
The phone didn’t even ring once. Instead, I got an automated message saying that the number was no longer in service. I hung up, fearing the worst.
Making a case for reparative readings, Eve Kosofsky Sedgwick declared that the “vocabulary for articulating any reader’s reparative motive toward a text or a culture has long been so sappy, aestheticizing, defensive, anti-intellectual, or reactionary that it’s no wonder few critics are willing to describe their acquaintance with such motives.” Strange, isn’t it? For isn’t motive crucial? Economists regularly home in on the incentives driving human choices and social behaviors, and legal trials forcefully weigh intent in cases of life and death. So it is curious that I drafted much of Just Vibrations without including the present chapter and reflecting on how I came to be interested in reparative work. I had allowed my own circumstances to go missing from the puzzle. The sentiments laid out in these pages originated from times when I most desired rehabilitation, yet was least able to imagine its fruition. I rebooted a mild writing regimen in late summer of 2014. I wasn’t completely better (not by a long shot), but with the aid of medications and visits to the Beth Israel, Brigham, and Dartmouth-Hitchcock pain clinics, I gradually became able to sit still for twenty-minute intervals. I would write at the computer for as long as I could, trying to make up for lost time, then lie down to catch my breath; sit up, then go flat; and on this cycle went.
I share this ongoing episode of my life out of neither self-congratulatory transparency nor a wish to claim exemptions in readers’ judgments of the book at hand. I share these stories because, in my mind, what follows makes little sense without a sense of self at the center. In fact, with myself in these lines, I hope readers will feel free to scrutinize the book more, not less. Some writers, to be sure, still believe that academic and first-person narratives don’t mix well. Feminist and queer theorists repeatedly run into accusations of narcissism, of overmixing the personal and the political. Disability scholars who admit their own hardships are likewise charged with indulging in “moi-criticism,” appealing to emotions (and scoring so-called sympathy points) rather than to the intellect. My own writing has tended toward an interplay of moods and styles, merging anecdotal, journalistic, and academic registers that at once embody fractured feelings and reparative ambitions. Given academics’ valorization of experimental art (rife for interpretation and politicization), I’ve long found it odd that much of academic writing itself shies away from experimental rhetoric. A fear may be that, were unusual writing to proliferate, some academics could undeservedly claim bad writing as something that sounds good, or pass off ungrammatical fragments as brilliantly neurodiverse and neurodivergent. Critical writing is the scholar’s safe haven, an expressive vehicle beholding but not beholden to art’s radical standards. Rita Felski puts it this way: “Critique often thinks of itself as a weightless, disembodied dance of the intellect—as something that is outside, against, at odds with prevailing norms and patterns of thought.” In this quote, “critique” is positioned as the sentence subject (a wink from Felski), capable of “[thinking] of itself.” Such syntax riffs on how people attribute agency and exceptional status to critique. The myth is that good scholarship can stand on its own merits, good ideas speak for themselves, and a good paper practically writes itself. But surely scholarship about art or about anything else is no more autonomous than art itself. Pretending otherwise risks leaving human interests out of the equation.
For months, I refrained from divulging my illness—my human interest—to peers in academia because I feared they would see and treat me differently. The first professional commitment from which I withdrew was an essay for The Oxford Handbook of Music and Disability Studies, and one of its editors, Joseph Straus, was the first colleague to whom I disclosed my pain. Joe replied graciously, closing his email with this advice: “I hope you will take the time you need to get better. Nothing else really matters anyway.” Until this point, I had relayed my problems only to my partner and a few close friends. I even held out on telling—and, I assumed, causing unnecessary stress for—my parents until a week before my first surgery (a gallbladder removal that, in retrospect, targeted not only a red herring but subsequently worsened the pain by far). As I resumed professional duties over time, I role-played as someone of sound mind and body, getting through conferences and job interviews with a mix of painkillers and pure adrenaline. I came close to tears at random moments on these occasions, but each time, would compose myself, usually by dashing into the nearest restroom stall. I wasn’t yet ready to stumble out of this closet of illness, worrying that people would consider me broken. But some colleagues eventually perceived something was up anyway, asking if I was okay and pointing out that I looked low-energy or not quite like myself. This bred a whole extra set of insecurities. If people were noticing I didn’t look well or sound good, would they start speculating about my condition? Would they judge my work with heightened suspicion or, alternatively, handle it with kid gloves? Would my terse replies and weak smiles signal aloofness, haughtiness, even inebriation? Would declining invitations to happy hours or conference receptions brand me as rude and reclusive?
Pain was a queer experience unto itself. My everyday rituals involved negotiations between passing and coming out, between self-effacement and self-advocacy, between craving and rejecting concrete labels. Abject yet immanent, pain unmoored my perspectives on futurity and finitude. Hopeful and hopeless feelings took turns preying on the purview of who I was and who I could be again. Pain necessitated a performative lifestyle, the undertaking of physical, physiognomic, and verbal choreographies that could either keep people in the dark or let them in on the secret. One problem was that I had no clear diagnosis and didn’t know how to describe myself anyway. No external violence had been done to me, and I hadn’t suffered a trauma per se. I briefly discussed disability leave with my department chair and dean, but didn’t comfortably identify as disabled. Perhaps I didn’t feel entitled or courageous enough. And what if the pain disappeared one day as suddenly as it came? With doctors scratching their heads, with tests coming out clean, what if the pain was truly in my mind (as opposed to what)? Or, on the contrary, what if I was downplaying the pain and therefore not receiving sufficient aid? I remember leaving certain physicians’ offices scolding myself for not speaking up as vigorously as I could have on my own behalf. During one visit to a pain clinic, the nurse who took my vitals asked me how much pain I was experiencing on a scale from 0 to 10, with 10 being the worst. I first said 6, then quickly changed my mind and mumbled, “Wait . . . actually, 8.” The nurse grinned and told me she had to write down the first number because it represented my gut instinct (my gut, as if it could think straight). I considered pleading with her to update the number and convey greater urgency to the physician. But I ended up just nodding and smiling.
Over endless consultations with gastroenterologists, anesthesiologists, surgeons, nutritionists, and acupuncturists, my ability to describe pain hardly improved. I was easily stumped by routine questionnaires asking whether the pain was sharp or dull, shooting or throbbing. One visceral irony lay in how despite the amazing medical technologies of imaging and auscultation, I didn’t always feel seen or heard. Although stethoscopes let physicians eavesdrop on my heartbeats, these rituals of “hydraulic hermeneutics” couldn’t substitute for my own illness narrative. Physical exams of palpation and percussion (tapping my abdomen, checking for masses) treated my cavities and organs as vibrating instruments, but couldn’t glean the agony induced by, among other things, precisely these forcible tests. Among the most dissonant experiences arose during MRI scans, which bombarded my supine figure with brassy noises of magnetic fields and oscillating coils; inside the tube, the sounds were harsh, yet, in my imagination, every beep served a purpose, working to sketch my scars and prove my pain. Even as MRIs homed in on my atoms, I longed to retain a sense of self apart from whatever results emerged. Physicians’ tests positioned me as a resonant vessel, an object poised to confess structural flaws. The exams alone could not, however, say much about who I was—who I hoped to be—as a person, a musician, and a writer.
Piano and Prose: Impasse
During the time I took a hiatus from research, I also stopped playing piano, and as of 2016, I have yet to resume. In years past, I had given regular recitals, including a series of performances in graduate school called Improvisations on Themes from the Audience. These performances began with audience members recommending themes (anything from Bach to Beyoncé), which I would work into real-time mashups according to classical idioms of the eighteenth and nineteenth centuries. I loved the interactivity, the freedom, the danger. Austere etiquettes of Western art traditions flew out the window as people shouted out “Flight of the Bumblebee” or “Bohemian Rhapsody” or “that theme from Star Wars . . . no, the other one!” During a performance, I could reciprocally hear the audience’s hearing of my playing because people would chuckle upon recognizing variegated melodies. At the same time, I tried to make listeners feel heard by weaving their recommendations into the recital’s musical fabric. Ten fingers, numerous voices. To be clear, I don’t think my improvisations always sounded good. I would hit weird notes or fudge up the pacing or linger too long on a single theme or overdo clichéd circles of fifths. But it was my favorite way to play, a way that felt electric and alive.
With the onset of illness, it became painful to sit on a hard bench and difficult to concentrate. My hands turned disobedient and my run-throughs of even easy repertoire became disorderly. Passagework sounded broken, yet not in a beautifully salvageable way. There was nothing romantic or poète maudit about playing through physical anguish. As much as I would’ve hoped to find some transcendental inspiration in pain, it hasn’t panned out. No overcoming narrative, no supercrip courage. But it wasn’t for lack of trying. Some people, after all, have better luck when it comes to finding distraction or even respite in musical activity. In his book Anatomy of an Illness, Norman Cousins recalled his astonishing encounter with the conductor and cellist Pablo Casals in 1966, a few weeks before this musician’s ninetieth birthday. At the time, Casals had developed difficulty breathing and walking and dressing himself. “His hands were swollen and his fingers were clenched,” Cousins remembered. But one day before breakfast, Casals headed to his piano. According to Cousins:
I was not prepared for the miracle that was about to happen. The fingers slowly unlocked and reached toward the keys like the buds of a plant toward the sunlight. His back straightened. He seemed to breathe more freely. Now his fingers settled on the keys. Then came the opening bars of Bach’s Wohltemperierte Klavier, played with great sensitivity and control. I had forgotten that Don Pablo had achieved proficiency on several musical instruments before he took up the cello. He hummed as he played, then said that Bach spoke to him here—and he placed his hand over his heart. Then he plunged into a Brahms concerto and his fingers, now agile and powerful, raced across the keyboard with dazzling speed. His entire body seemed fused with the music; it was no longer stiff and shrunken but supple and graceful and completely freed of its arthritic coils.
No matter how accurate or embellished this description may be, suffice it to say that I haven’t been capable of showing such virtuosic transformation during pain. My inability to translate suffering into artistry has in fact made me doubt how much I care about music—a queer thing for a musicologist to wonder. If I loved music enough, shouldn’t music sometimes be enough to comfort and care for me? Or, to frame this as the three-word inquiry people ask about difficult relationships: Is love enough? As my body and worldview came undone, it wasn’t a huge stretch for me to start questioning my relationship to music. Playing music didn’t serve as a magical security blanket, and listening to it couldn’t help me sleep. Music wasn’t exceptional. It was just one more thing excised from daily activities, one more broken luxury in a life falling silent.
My sense of inadequacy extended from the playing of piano to the perusal of books. In the summer of 2014, on the better days when I could focus enough to get some reading done, I opted for a mix of queer memoirs (for enjoyment) and critical theory (to stay abreast of academic literature). In many ways, the two genres couldn’t be more different. Memoirs come across as vulnerable and transparent, while critical theory can border on domineering and opaque. Authors of memoirs often sound out reparative measures, recounting life’s challenges in search of meaning and closure, whereas critical theorists traffic in paranoid discourse, deferring meaning and closure via deconstruction. It was around this time that I began exploring ideas of resonance, the physical and metaphorical vibes at work in interactions between selves and surroundings. The writings of French philosopher Jean-Luc Nancy left a mark on me, though not in the traditional sense. Consider the following excerpts from Nancy’s Listening (Á l’écoute):
To be listening is thus to enter into tension and to be on the lookout for a relation to self; not, it should be emphasized, a relationship to “me” (the supposedly given subject), or to the “self” of the other (the speaker, the musician, also supposedly given, with his subjectivity), but to the relationship in self, so to speak, as it forms a “self” or a “to itself” in general, and if something like that ever does reach the end of its formation.
And, a few pages later:
We should linger here for a long time while on rhythm: it is nothing other than the time of time, the vibration of time itself in the stroke of a present that presents it by separating it from itself. . . . Thus, rhythm separates the succession of the linearity of the sequence or length of time: it bends time to give it to time itself, and it is in this way that it folds and unfolds a “self.”
Self, “self,” self, itself, “to itself,” in self. With my own sense of self eroded by pain and painkillers, I had a hard time wrapping my mind around these passages, which I ended up highlighting in green and annotating with question marks. Nancy’s writing struck a nerve, and as I now write this, over a year later, I think I’ve figured out why. To be clear: rather than gloss here what I take Nancy’s words to mean, what follows is my attempt to describe my own feelings toward these words. Granted, people don’t usually elaborate on the emotions elicited by others’ scholarly writing. The aesthetic objects of critique (music, poetry, photography), maybe; but critique itself—less so. We do, in other words, commonly talk about what we think someone like Nancy is trying to say and what his theories let us say in turn. We don’t talk about how Nancy makes us feel. Enlightened? Obtuse? Irritable? Under the generous canopy of critical inquiry, there should be room for discussions about the affects elicited by, not least of all, affect studies and phenomenology.
Nancy boasts a monumental oeuvre and has plenty of admirers. But as I scanned and rescanned his definitions of listening and rhythm, I stayed stumped. Here was Nancy, showing off language resembling nested math equations, operating with what sounded like second-order and third-order logics—and here I was, out of order, making do with a shortened attention span and diminished retention. I could have coolly dismissed Nancy’s writing as sophistry and shaken my head sagely at its esoteric pretense. I could have chosen to laugh at the impenetrable rhetoric and shared it on Facebook with a humorous tag (#obscurantism). Instead, I wept as I read: teardrops hit paper and made neon watercolors out of the highlights. Affliction had whittled down my patience for mind games and wordplay. Latching onto these few lines of text was arbitrary, even irrational. I know I reacted with disproportionate sadness and shame toward Nancy’s abstract musings. Perhaps I fixated on this mental impasse as evidence of my futile endeavors to steady my intellect and repair my body. The hard words stood for all the things that no longer came easy: producing good work, eating good food, enjoying a pain-free summer car ride to the Cape with windows down and radio up. The smudged ink before me coalesced into a snapshot of my muddled psyche. It represented the end of my line, telling me this was as far as I will go.
My queer failure to understand Nancy may offer its own humble revelations. I think of Noam Chomsky, who, among others, has admonished postmodern theorists for polysyllabic posturing. These theorists, Chomsky says, envy (and seek to mimic) the complex, rarified work of physicists and mathematicians. Revisiting the two Listening excerpts, however, it seems as if Nancy envies not only science but also music. Look at his language. It’s arguably more musical in itself than it is about music itself. The prose delights in repetitions with minor variations and coy inversions, echoing with assonance all the while. And as with music, Nancy’s words can accommodate sprawling interpretations. Recall that a trait of paranoid criticism is, according to Sedgwick, its attempt to ward off others’ faultfinding efforts. One way to accomplish this involves comprehensive topical coverage and displays of erudition. Another way is to write in a manner that defies comprehension altogether. High theory’s golden logic states that if you don’t get it, you’re not smart enough; if people can’t see the emperor’s new clothes, quip the sly weavers, it’s because they’re unfit for their posts. As much as I’d like to feel as confident as the vocal child who denudes the emperor, there’s always the fear that I’m the one who’s lacking acuity, that I alone am the one who cannot see.
Assumptions about the intangibility and ephemerality of sound enable us to talk about it in abstruse, ambivalent ways. Discursively, this is freeing. Sociopolitically, this can be problematic, as such abstractions may be partly responsible for how sonic offenses go unaddressed. To me, Nancy’s language is unclear. But does it also verge on unethical? Lest we doubt his elitism, consider how Nancy regards musicology and its Others: “If someone listens to music without knowing anything about it—as we say of those who have no knowledge of musicology—without being capable of interpreting it, is it possible that he is actually listening to it, rather than being reduced to hearing [entendre] it?” How many people subscribe to this characterization of musicology? Is it strange that an author so invested in ideas of listening would write in a manner comprehensible to so few?
At the time, getting worked up over a morsel of cloudy philosophy may have been a poor use of my dwindling energy and scant moments of lucidity. Yet these passages by Nancy exemplified much of what I’ve found troublesome about academic operations and social hierarchies at large: worlds divided into the haves and have-nots—those who have purported knowledge of music and those who don’t, those who just get it and those who cannot. A reparative reading of Nancy would give him the benefit of the doubt, refraining from accusing him of condescension. But more to the point, what is the purpose of sounding smart and writing well? Amid the imperatives of knowledge, aptitude, and eloquence, where do compassion and care fit in?
I remember the day a doctor offered a correct diagnosis for my condition. He was a gastroenterologist, yet his diagnosis was not gastroenterological. After listening to my description of symptoms and previous treatments, he informed me that perhaps there was pain in my abdominal wall—the layers of skin, muscle, and fat surrounding the stomach and nearby organs. It goes by the name of abdominal cutaneous nerve entrapment syndrome (ACNES), or just abdominal wall neuropathy for short. As the doctor explained this, things started to click: why endoscopies came out clean, why changes in diet made little difference, why antacids were ineffective, and why I would yelp uncontrollably upon palpation of my abdomen. A quick online search brought up several medical articles pointing to ACNES as a frequently overlooked problem when it comes to idiopathic abdominal pain. It can be brought on or exacerbated by specific incidents or injuries, but often, people with the condition are seemingly just born this way.
Once ACNES was raised as a possibility, all health practitioners who were involved recognized that we were dealing with neuropathy rather than gastritis or cholecystitis or pancreatitis. But for over a year, I had already presumed the malady to be digestive in nature, something deep within. I had developed an eating disorder through the systematic elimination of foods from my diet, becoming anemic in the process. I had grown to fear mealtimes, especially on social occasions. Lastly, I had lived with an assumption that my threshold for pain was unusually low, given that even soft contact with my abdomen would cause me to wince. In essence, I had learned to feel weak. But my complaints now sounded justified, for with neuropathy, my peripheral nerves were transmitting needless pain signals to the spine and the brain. The problem didn’t stem from organ failure. The problem was pain itself.
In a January 1939 interview, Winston Churchill spoke about the need for democracy and free press in the face of totalitarian threat. “Criticism may not be agreeable, but it is necessary,” said Churchill. “It fulfills the same function as pain in the human body; it calls attention to the development of an unhealthy state of things.” Preserving people’s rights to criticize their government keeps powers in check. Pain receptors alert us to injury, telling us to take our hands off a hot stove. In short, pain serves the body in the way that criticism serves the body politic. Norman Cousins, who lived with and recovered from chronic pain, shared Churchill’s sentiments: “Pain is part of the body’s magic. It is the way the body transmits a sign to the brain that something is wrong.”
But suppose that your nerves fire unnecessarily and pathologically, as in the case of neuropathy. Suppose the only wrong thing telegraphed by this pain is pain. Neuropathy is a body crying wolf, paranoia overdrive. Misfiring synapses yell Watch out! on a loop, raising alarms about phantom threats when in fact these nerves are their own worst enemies. The pain is useless and has, now and again, made me feel useless in turn. It’s easy to call pain magical or inspirational or a badge of honor. It’s harder to appreciate such silver linings when you’re still caught in the storm.
Suppose, contrary to Churchill’s analogy, that certain practices of criticism likewise stem from socialized rituals rather than thoughtful decisions and reparative aims. Neuropathy involves pain for pain’s sake; do paranoid readings, among other discursive practices, showcase criticism for criticism’s sake? Suppose we, in daily interpersonal and academic activities, introduce more injurious stimuli into the world than needed, for the sake of . . . what? Pursuit of truth? Authority? Thrill of competition? Do we ever get so busy trying to sound good and do well that we forget to care for others? Has naysaying become a reflex rather than a choice, a tendency hardwired into neural pathways? If so, would we even know it?
To date, I can’t say what has or has not definitively come out of my pain, because I have not yet come out from it. I remain in it, it in me. I still visit pain clinics, receiving consultations, injections, and radiofrequency ablations. I underwent an anterior abdominal neurectomy at the end of 2015 with only minor relief. More surgeries loom. Pain is my shadow, forcing me to check my mood and stamina every time before booking a trip, teaching a class, or agreeing to coffee with a friend. On dark days, I stay at home, unavailed, letting hours dissipate, fantasizing about what I would trade to make the pain go away, barricading myself in the bargaining stage of grief, the futile stopover between anger and depression. On bright days, I write avidly, laugh loudly, and love better, wishing for each minute to linger a little longer.
As I’ve gradually shared drafts of this book, one shining spot is how many friends have reciprocally shared their own personal tales. Walls came down, sound barriers shattered. Across these emotional exchanges, a valuable affective commodity began to stir: confidence. Not confidence as in resilient authority or self-assurance, but confidence as in confidentiality—a readiness to trust, to empathize, and to be vulnerable in the company of another (figure 1.2). As I continue to wonder whether I can be unbroken, what 0–10 pain level tomorrow brings, and how I can make it through a conference next month, the sentimental vibes in these honest conversations have felt refreshingly truthful. They have confirmed my suspicion that it’s possible to tread alternate paths of critique and care. For the moment, what I care about most is seeking a reparative lifestyle for myself and for those closest to me, as long as I’m able.