It was in the car that I first began to notice music sounded strange to me: the instruments less distinct, the vocals less crisp. I was driving a lot at the time, two hours total, sometimes more, on my commute to work and back. I kept needing to turn the volume higher, kept straining to make out the words, if there were words, or the melody.

Music is not as central to my identity as it has been for some: I don’t collect vinyl and I’ve never connected in any profound way with the MTV sound my cohort grew up with (and I’ve never understood its importance to them, outside of the obvious role it played in social cohesion, flashing the right signs as a way of blending in). But even if our tastes begin as a pretense they soon become who we really are, and one of the great lessons I’ve learned over the last ten or so years is to periodically try to disrupt that ossification. I’d pick categories of sound and study them, heading off to the library with an empty knapsack and coming home with a dozen CDs of opera or early jazz or whatever was charting. I’d listen to all of them, save favorites, assemble secret playlists.

When I’d visit my friend Adam, he’d sit me in his living room, pour me a drink and walk me through early Led Zeppelin or Pink Floyd, pointing out what had been new (and, so, important) and what I’d otherwise miss. After a few glasses I’d forget most of the details he was so painstaking about, but I loved hearing him talk about it, and I loved the sense that I was learning, deepening, better understanding these things that were so loved.

But my own taste tended to the lugubrious, to music that unfolded slowly: all those great ECM recordings of simple and gut-stirring stuff like Erkki-Sven Tuur, Paul Giger, Valentin Silvestrov and, later, John Luther Adams and Gavin Bryars. I love the blues (John Lee Hooker, Asie Payton) and pop that doesn’t stray far from the blues, or pop that’s both smart and can laugh at itself (my desire is to be buried with Leonard Cohen’s Various Positions and Tom Waits’ Swordfishtrombones). When I first heard Robert Ashley’s TV opera Perfect Lives, at a time when—through grad school—I had an institutional subscription to the Directory of American Music, I thought I was in Heaven. For two months I listened to it almost constantly, while I worked or fell asleep, or tidied, or showered. It’s “Blue”, Gene Tyranny’s wandering piano that keeps the sound on its toes just as much as Ashley’s off-beat modulation.

Eventually, but not immediately, my trouble with music extended to voices. I was teaching by then, and I’d find myself having trouble hearing the back row, then later the front row. I’d make a joke about it: “If you don’t speak up I’m going to have to lean down and cup my ear like an old man. Would you take me seriously if I was an old man?” I was, and am, in my thirties.

For a long time I’d been living with ringing in both ears, accompanied by the odd vertigo attack, where the room would spin and then reset itself, spin and reset, as though I were dangerously drunk. I’d grab onto the couch or the floor, grit my teeth and wait out the few hours it lasted, all the while sure I was falling, falling and never hitting the ground. Visits to otologists at the Massachusetts Eye and Ear Infirmary confirmed that the culprit was probably a condition called Ménière's disease, and that there was really nothing for it. I should try to eat less salt, avoid caffeine, maybe take water pills? I tried all of these. Gradually, with each vertigo attack, it was predicted that I’d lose a bit more hearing. One day it would be gone – both the vertigo and the hearing. There was no telling when that day would come. Nine years? Twenty? Two?

Oddly, my experience of this condition seems to be unique: five years later, my hearing still fluctuates daily, and is more often absent than present, but it sometimes re-appears in full, and I’m my old self again, if just for a day or an hour. My doctors—and by now I’ve seen at least 20—are visibly irritated by this, often incredulous. Sometimes they shrug. One, an ENT at the Mayo Clinic, tried tough love, minus the love: “Well yes, you’re unique, but we won’t know why until you’re dead and we cut you open.” My hearing was bad at Mayo, in Minnesota during last winter’s polar vortex, and so in lieu of music, I’d recite Yeats to myself, calling the poems up on my phone between hour-long tests, trying to get through them all in my head while the MRIs growled and whirled, or while I was covered in beige powder and wheeled into a giant toaster to measure my brain’s response to heat.

It’s ironic, in a way, that music is disappearing for me, because for years I was notorious among more than a few of my friends for abhorrent taste. It wasn’t just young friends: 60-year-olds hated what I played in the car every bit as much as 20-year-olds did. We’d be driving along and yukking it up and I’d pop in Congolese rhumba icon Papa Wemba’s “Awa Y'okeyi” and everyone would be patient for a couple of beats. Then somebody would break in with “Alright, what the hell is this?” and derision would ensue. The CD would come out and some indie thing slid into its place.

What I loved about Papa Wemba, this song anyway, was the controlled, almost ritualistic swings of passion, the way the piano anticipated and then responded to his cries, and of course the fact that—as it was in Congolese—maybe less than five million people on the planet understand the words (nobody not born in Congo speaks Congolese, unless it’s a handful of haggard Belgian contractors who can’t seem to explain to the locals in French why they’re stealing all the minerals. What was that about money? Well, if you want a whole dollar a day we’re always looking for someone to dig through dirt …). Since the language is impenetrable (and any translation iffy) we’re left with pure sound, and we can pour anything into it, any fear or catastrophe or yearning, any warning.

There are still days when I can hear Papa Wemba with something like normal hearing, but on most days I pop in hearing aids first thing when I wake up, and those hearing aids communicate real sound by pixelating and then reconstructing it. The once-rich piano becomes a toy piano, heard as though on a radio through a radio. When the notes begin to fall on top of one another, they blend and muddy. It’s possible to pick up the thread, but it comes through memory, not the sound around me. At a friend’s wedding last month I went out to dance, but after a few bars of each new song I’d be sure to lean in to ask my wife what it was. Because it was a wedding, and wedding songs are wedding songs, I generally knew them all. It may seem incredible, but even “Billie Jean” (which I used to jog to daily) is indistinguishable from static unless the hearing-impaired listener knows it’s “Billie Jean”—then you can follow the beats, and the rhythm falls into place, even if the melody and the sense of the words are lost.

My case is different than that of most Ménière's sufferers. For one thing, both ears are affected, which is rare. For another, in every case known to me or to my doctors, hearing only fluctuates for a short time, usually in the period immediately preceding and following a vertigo attack. In my case, however, this is not so: my hearing has fluctuated for years; in the last year, it’s been dipping and rising every hour. The problem is that hearing aids are usually assisted by neural plasticity. If my hearing were declining steadily, gradually, or would settle at a certain level, my brain would have time to catch up, to begin to process what sound was now like, the new normal. But because I’m jerked around from clarity to distortion and back, I can’t adapt: the hearing aids aren’t working prosthetics, only amplifiers (and in the same way your speakers cease to produce crisp sound at high volumes, my hearing aids cease to provide sensible data when I’m forced to activate the highest settings).

There are few days when I can hear without aid now, but they still happen. I was able to hear a little background music at a cookout this week (sadly, it was The Traveling Wilburys). On the drive there and the drive back, I played Tom Waits’ “Town with No Cheer.” I played it because it had been stuck in my head (if you’ve ever had hearing of any kind, you’re prone to earworms) and because my memory is not eidetic, I ached for detail, and waited through weeks of roaring tinnitus and silence to have it. Then I was rewarded.

The song is about a real city, Serviceton, on the border between Victoria and South Australia, one that sported a thriving bar and restaurant in the first half of the century, when passengers had to switch rail lines—and drank and ate while they were there—in order to continue their journey from Melbourne to Adelaide refreshed and at their ease. But with the advent of café cars and the joining of the rail lines the town dried up and disappeared, save for a handful of ranchers and a few hangers-on.

What makes the song so moving for me is what I can’t hear now: the fade-in and fade-out of Waits’ voice in the persona of a dry local. He begins every phrase with something like a shout and then winds down to a defeated whisper, like a drunk lamenting his sobriety. The harmonium and synthesizer sound, respectively, of carnival and defeat; they merge and blur. Most days now the sound comes to me as though from down the street, as though the speakers were shorting out, and as though I didn’t know the tune.

But what I’ve lost isn’t just a set of structured sounds, but the world those sounds create, a world you can live inside: Bach on a snowy afternoon, hard blues on a long night’s drive, the background mood in a restaurant or at a party (or, increasingly, any public space not yet colonized by ESPN on flatscreen TVs). Music is color. When you’re young you’re the hero of a movie, and the Heifetz you play in your car or the Velvet Underground you first try out sex to isn’t just background, it’s location and weather. You feel it on your skin.

So many of the big, meaningful scenes of my life have become centered, in my memory, around music, and not just concerts (though concerts are huge). I think of the time I spent every last dollar I owned on a 3-disc set of Einstein on the Beach and put it into the stereo while I drank coffee and thought about finding a real job; from the first notes (the numbers, chanted) I felt like I’d walked into a new life. Or the time Adam and I spent an hour driving through fogbound Portland, Maine and playing Genesis’s “Mama” over and over, not able to get enough of its brutal camp. There was the time Bill and I debated the respective merits of various Johnny Cash records on New Year’s Eve while apportioning drugs on the back of one of the jewel cases. Or when Jaime and I realized, after seven years, off and on, that it was finished between us, this time for good, but she hung around my tiny apartment all afternoon because neither of us wanted our new lives to start quite yet. I played her Samuel Barber’s “Knoxville, Summer 1914”—she’d never heard it, didn’t know who Barber was—and we listened to every note and were ourselves silent, wholly owned, her cigarette smoke uncurling above us.

Cigarettes, drugs: lots of music seems hopelessly bound-up in cool. As any number of writers have pointed out, obscure one-upmanship can be cruelly exclusionary. I remember eating dinner with a couple of friends in college when the conversation turned to alt-bands and then to bootlegs and then to sundry variants of those bootlegs and I was lost—Were they scoring points against one another? Were they bonding? There were no smartphones then, so I took out a book.

But as much as I didn’t care about new music then, I regard it now as one of the major obstacles to understanding human language. Just as I didn’t understand how to share in the fruits of the cool in Bikini Kill and Run DMC when I was younger, so now the aural pain that pounds out of corner stereos and ceiling speakers obscures the very words around me. Half of the time I don’t even know music is present, but because of the way my ears and brain can’t settle on a steady input, any music completely obscures all proximate sounds.

If I’m really struggling to understand speech, I’m the joykill who asks that the music—the background sound of good times, Shelley’s “where the spirit drinks until the brain is wild”—be turned low or off. Part of the fun of the music at those parties, or in those restaurants or—god help us—elevators and supermarkets, is the way it connects us with our past. You hear a bad Billy Joel song in the freezer aisle at Safeway and time is refuted: you’re twelve years old, driving off to football camp, or to dancing class, your mother’s station wagon one major metal antenna.

Back in college my friend Vita gave me an EP cassette she’d found in a free bin at Newbury Comics, from a local group called, I think, Fledgling, and while the A side didn’t do much for me, the B side wouldn’t let go. The name of the song didn’t seem to appear on the tape, but the slow plucking of strings and the sudden rush of a woman’s raw voice and the rhythm kicking in … well, I loved the song. And I carried that EP from apartment to apartment until I no longer owned a means of playing it One bit of the lyrics always got to me, just as the tune moves to an upswing: “when there's so much out there you can't imagine / it's such a drag but it's so much better than me…” The way she held out that “so” both times, dug into the “better,” clipped the “me.”

Twelve years later—maybe six months before all these symptoms began—I was walking down Massachusetts Avenue in Cambridge one evening, past the Lizard Lounge, and as I sometimes did on a whim when I had an hour to kill on a weekday night, I walked down to the grotto to hear whoever was playing.

The video above is the only copy I can find of that song online, and as I recall I was on the stool just to the left of the camera. Within a few minutes of my ordering a drink, I heard that deconstructed chord, and the same voice. Eileen Rose and the Holy Wreck was the band’s name and it was clearly her song, the same song Vita gave me in 1996. I didn’t even know Vita anymore.Sitting there, listening and longing, my heart fluttered into my throat. Every moment I’d lived with the song compacted, contracted. I felt absorbed and released and excited for hours after. I tried to explain to my girlfriend how amazing it had been, but it’s like trying to tell a dream. I can still rehearse those songs in my head, and that’s a pleasure, but, like memories, the mind re-makes old songs as it repeats them; you hear the real thing again and you connect with it again, smile at what you’ve missed.

We’re lucky now, in that we live in a world where total deafness is rapidly becoming a thing of the past as cochlear implants become more advanced and increasingly adaptable. But while many implanted patients can hold conversations again or even talk on the phone, these otherwise-miraculous devices are notoriously bad with music. The University of Washington is doing fascinating research in this area, but nobody thinks they’ll be replicating “real” hearing anytime soon. Tones will still blend, a slamming door will be identical to a barking dog, the whistle of a teakettle and the wail of a siren one.

And so my troubled but beautiful-to-me life with and around music is probably drawing to a stuttering stop. Gradually, that time, spent time, acquires a lasting shape, even if it’s an aleatory and unintentional one, my whole life with an art.

John Cotter is author of Under the Small Lights, a novel.