I’m Gonna Bury You

Corinne Leong

My greatest source of shame isn’t the feeling I get when my doctor fizzles onscreen in cyber white and tells me what we’ll do: slice open the skin at the palest part of my neck with the exactitude of literal surgery, excise the twin bones that fuse the top half of my face to its bottom, screw an L-shaped hinge into each curve of my jaw until it functions the way an ice cube melts, all smooth and unwilling. It’s not that I only occasionally understand why I’m subjecting myself to all of this, these small amputations—that despite the insurance authorizations and expert urgings, I can’t help but suspect that something fraudulent shelters in my need. Instead I might reference my semi-regular use of Facebook, which could very well fuel all the rest.

When I was nineteen, I uploaded two posts to a private “patient-centered support group,” eponymously named for a rare condition called Idiopathic Condylar Resorption. The first was a diptych of x-ray images from my orthodontist: one panel a panorama of my teeth, the other a shot of my skeleton in profile. I offered the group members a short, clinical description a doctor had ascribed to my jaw (“small”) and asked whether it might be worth having a specialist assess the state of my mandibular bones, which, assuming normative function, were each meant to slip seamlessly into a welcoming notch in my cheekbone and allow me to chew whatever I wanted. My second post, written less than two days after the first, was a long and mournful monologue rich with disoriented lamentation. A surgeon had taken a cursory glance at an MRI of my temporomandibular joint and diagnosed me with something called Idiopathic Condylar Resorption.

Idiopathic Condylar Resorption (ICR) is a condition affecting the temporomandibular joint. It involves the progressive degeneration of the condylar bones that attach the lower jaw to the upper jaw, causing the former to retract and frequently resulting in loss of contact between anterior teeth. Some support group members like to describe their jaw as “melting,” or the jaw bones as “eating themselves.” The condition has no known cause, hence its designation as “idiopathic,” but it mostly affects women—often younger ones. According to anecdotes from the Facebook group and the literature its members have painstakingly collected, puberty, hormonal birth control, pregnancy, and orthodontic treatment are all common triggers for resorption.

The condyle in question is around just two centimeters in height—roughly the size of a penny—but those with ICR report life-altering effects: reduced jaw movement, chronic and intense fatigue, difficulty breathing. One support group member says her “lower jaw reduced [her] airway and caused sleep apnea to the point where [she] was gasping for breath all night and CPAPs didn’t work.” Another remarked that jaw degeneration had left her with contact on just a single tooth in the back of her mouth, which promptly began to crack. In lieu of chewing, she used her tongue to mash soft foods against her palate. There can be debilitating pain, which is one of the reasons most commonly cited by group members for undergoing surgical intervention; icepick shocks rip through the diseased bone and adjacent muscles, or the strain of a gesture as simple as smiling draws deep aches, radiating outward into the neck, the chest, the shoulders. ICR cracks teeth, demands they be plucked from receding gums, causes migraines awful enough to motivate other surgeries. Some experience so much difficulty eating due to jaw pain or an open bite that they become critically malnourished, adult weights hovering in the high eighties. Alongside the seemingly inconsequential bones, the structure of one’s face also recedes and erodes—a self-alienating saga of aesthetics frequently referenced among the Facebook group’s members.

All of this was explained to me in the comments section of my second Facebook post. The first commenter limited her feedback to a single line of text: “Replace the TMJ. Find a surgeon who can do that.” A slew of personal narratives from other members followed, each beginning in childhood, meandering in the middle around scenes of worsening symptoms, all terminating in the same outcome: total replacement of the temporomandibular joint via surgery. Resection of all diseased bone, replacement with a metal prosthetic. Bionic life! Like a hip replacement but for cutesy female twentysomethings. The resounding sentiment: It’s good that you know now. I wish I had done it when I was your age.

I’ve since spent a lot of time on this Facebook group. The people are kind, tender, and intelligent. They’ve amassed an incomprehensible amount of knowledge about a mostly undocumented condition, combing PubMed and personal anecdotes, swapping theories, drafting spreadsheets. Some have made it their mission to bring ICR to public awareness. Others host strangers from across the country in their homes when they visit for surgical consultations. Months post-surgery, they meet up in midsized cities and eat together. Burritos. Sandwiches stuffed thick with cuts of beef. They post pictures and look lovely when they smile. Within the group there are eight clinical-grade ice machines—deployed to reduce postoperative facial swelling—that circulate throughout the United States, cost twice what my campus job earns me in a week to rent for the same length of time, and can be reserved for free via the admins, depending on one’s surgery date. There’s an active, well-informed orthodontist who habitually rebukes or responds in all caps to offhanded medical inquiries shuttled into the Zuckerbergian void: “THE DISC DO NOT STRETCH. IT CAN WEAR OR BREAK BUT DOES NOT STRETCH.”

When my diagnosis came I was living on the east coast, my home at a three-thousand-mile remove. To the Facebook group’s unbounded space this meant nothing. It was the women who toasted tortilla-swaddled proteins like pint glasses in cities like Pittsburgh and Syracuse that taught me how to question what my doctors told me. To self-advocate. I was offered commiseration and prescription and often these were the same thing. When I attended my first surgical consultation—over Zoom, screen-to-screen with a surgeon tucked deep in the Midwest—he cited the outcomes of other women in the Facebook group with the assumption that I already knew them. To tell him otherwise would have been a lie. (When I tried to turn the strategy back on him, referencing a post one of his patients had made, he told me he was disallowed from either joining the group or posting in it.)

By the time I returned home to California, I had chosen a surgeon. The world we’d drawn ourselves was so small. I raced from one end to the other, outpacing a physical decline that had yet to come.

The same inquiries, issues, and answers circulated often enough on the support group that its vocabulary came to me without effort: total joint replacement (TJR), double jaw surgery (DJS), cone-beam computed tomography (CBCT), that bruxism is a fancy way to say grinding your teeth, where exactly on the body a ramus is, the pterygoid muscles, that vague triangle of a coronoid process. That left me to decipher what was meant by all of the images, of which there are many. Before-and-after pictures are by far the most popular content within the support group, spawning the only hashtag (#beforeandafter) in use and amassing likes in the triple digits. (The group, founded in 2016, is approaching four thousand members.) Meanwhile, earnest queries about ancillary turbinate reduction or whether you can ride a rollercoaster (loop-de-loop)/have dimples/perform oral sex in the imagined postsurgical future wallow in the realm of pure text. I, for one, asked a highly specific question about my Invisalign retainer as it existed in 2022—gone now but never forgotten—and am still awaiting both a like and an answer.

The before-and-after isn’t a particularly imaginative format. Frontal images of the face are appreciated but not demanded. An unspoken code mandates only two shots, both of the side profile, an angle that for ICR acts as a kind of visual stand-in for all losses suffered and restorations enjoyed. What differentiates the two images in a pair is the invasive surgery that takes place between them. Then, the consequences that follow. Visually, these can be subtle: skin that bows from the curve of the neck in one image tautens in the other, the chin falls behind then beyond an imagined line drawn vertically down the eye. In other instances, the disconnect between before-and-after images fills me with a sense of deep uncanny, as if in mere months—or in the millisecond it takes to click from one image to the next—a face has reconfigured itself around a new set of principles.

Everyone looks great, to be clear. I wonder if this is a problem. Sometimes when I encounter a before-and-after post by a group member I’ve previously observed writing about an inability to consume solid foods or experiencing a sensation like suffocation each time they’re about to fall asleep, I feel called to make some acknowledgment of their tenacity or the joy they take in their newfound bodily ease. But I find it hard to locate any language that isn’t strange in its solemnity, equivalent to bringing a bouquet of roses to a barbecue. The postsurgical posts tend to paint in broad strokes (“best decision I ever made”/“hardest thing I’ve ever done”), and for the most part comparison pictures speak for themselves, requiring no context. The complimentary forms set by previous commenters and my own genuine feelings lead me only to something like Wowww gorgeousss ｡･:*:･ﾟ☆—so in the end I comment nothing at all.

Arguably the all-time most-viewed ICR content on the internet is a minute-long TikTok video with 92.3 million views and 6.6 millions likes. A 23-year-old woman—and active support group member—named Lillian (@chunka.munka) posted the video to commemorate the passage of a full year since her TMJ replacement surgery, a time by which the patient is considered fully “healed.” It’s a timelapse of sorts, a montage of linear moments fast-forwarding the viewer through Lillian’s postsurgical recovery. There’s only one clip of Lillian prior to surgery; for seven seconds, she tearfully displays the degraded state of her bite. The final frame is a still before-and-after-style shot composed of images pulled from her orthodontic records. The “after” pictures are pristine and vibrant in a way that is almost knowing. Floating just above her beaming face are the words “Say hello to the new you.”

ICR’s most public face glimmers with the same exuberant hope as a similarly ephemeral artifact: the limited edition postage stamp that opens disability scholar Eunjung Kim’s book Curative Violence. Issued by the government-owned mailing service Korea Post in 2005 and titled “Stem Cell Cloning Process and Hope,” the stamp depicts a frame-by-frame progression of a masculine silhouette in a wheelchair: standing, running, jumping, and finally embracing a feminine figure. Unassisted by the chronology implied by Lillian’s video, a holographic effect instead dances across the surface of the postage stamp, marshaling light to create an illusion of left-right momentum that extinguishes as it reaches the man’s newly abled body. The stamp was issued to commemorate researcher Hwang Woo Suk’s alleged discovery of a new method for cloning human embryonic stem cells, a breakthrough that in public fantasies would eventually produce a cure for those with spinal-cord injuries. “I felt like crying. Something about that boy stabbed me in the heart,” Hwang reportedly said of meeting Hyeoni, a boy with quadriplegia. “I want to turn him back into a normal boy so that he can fight with his friends and pull girls’ hair.” In 2006, Hwang’s research was found to have been falsified.

The commemorative stamp seems an analog predecessor to the TikTok timelapse, the before a fixed point while the after sprawls outward, its destination radiant with possibility. Lillian eats a spoonful of baby food, a Wendy’s Jr. Bacon Cheeseburger, she paraglides down the face of a hill. Say hello to the new you. The silhouettes on the stamp are overlaid atop an enlarged microscope image of a needle penetrating a human cell, implied to be a stage in the process of stem cell cloning. Both mediums fashion medical discovery and intervention into the backdrop against which human progress and meaning-making take shape—a stage for the future in all forms. In the same frame that introduces her restored self, Lillian’s poorly lit “before” pictures hug the bottom of the screen, each background yellowed as if in decay. I can’t tell if her face broadcasts pain. If I’ve imagined it there.

As in my half-baked and unsent Facebook comments, physical beauty comes up frequently in replies to Lillian’s TikTok posts. She has wide blue pools for eyes, skin with the texture of undisturbed water, and invites frequent comparisons to Emilia Clarke. It would be easy to argue that the unprecedented popularity of her video finds its origin in a simple, well-known spectacle: woman emerges into canonical hotness. But even in the wake of her transformative surgery, Lillian’s profile is populated with plenty of thorough, well-researched informational videos that elaborate upon her condition and chronicle her ongoing struggles. These receive far less traffic. It’s something else the viewers are responding to: the notion of a narrative resolution, an end to a rare, debilitating condition. And with it, the end of disability altogether.

A few months ago, a woman I’ll call K. made a post not dissimilar in length to my first post, the teenaged requiem to my formerly undiagnosed jaw. Does anyone else feel completely hopeless like me, she asks. She doesn’t want to get total joint replacement (TJR) anytime soon. I can’t handle it mentally, K. says. I know it will completely ruin my mental health. She means the waiting, the worry. The convalescent pain. My body does not handle trauma well. K. has scheduled an alternative surgery in the following months, a traditional osteotomy that lengthens the lower jaw to a proportional size but preserves the diseased condylar bone most members urge each other to rid themselves of. She expresses reluctance to discuss her impending procedure due to the group’s strongly held belief that “TJR is the only answer to your problems.” K. says, I can’t relate to most in this group because of my feelings on this. Her resistance to the most invasive surgery for a rare condition has only led her to further alienation.

There’s a taut, deterministic logic to the online support group. It’s manifested itself since that first comment on my second post: “Replace the TMJ.” Total joint replacement, it truly does seem, is the only answer to your problems. There are a few commonly held beliefs that I see recirculated with every surgery-related post, not to mention that somewhere over 90 percent of posts on the Facebook group concern surgery, rather than any other means for living well alongside ICR, in the first place. I learned the language quickly: Everything else is a band-aid solution. You are not addressing the true problem. Your dentist is a quack. The vitamins don’t work. Braces will hasten your degeneration. An orthotic will hasten your degeneration. Any jaw surgery that leaves the diseased bone intact leaves you certain to relapse and worse off than you were before. The fewer surgeries performed on the joint prior to TJR, the better your ultimate outcome will be. And there will be an ultimate outcome—there are endless members who have exhausted all other options only to find themselves where you are now. Who can tell you so.

Recently “Idiopathic Condylar Resorption,” as a Facebook group, seems to me more aptly named “Temporomandibular Joint Replacement Surgery.” The group’s enthusiastic notion that TJR is the only way to “halt resorption of the joints” when the procedure amputates them entirely, leaving the user dependent on medically regulated prosthetics, seems a pretty on-the-nose illustration of the fundamental problem. As Eunjung Kim sees it, cure is a concept and practice that erases disabled bodies through their assimilation, without dissecting ableist systems of power and “everyone’s complicity” in them. On a more material level, cure disregards the nuances of invasive intervention, treating procedures like TJR as wholly positive forces in a gesture that obscures the psychic and bodily concessions they force their subjects to make. For K., the trials implied by “curing” ICR would constitute an obvious loss. And yet the conventions of the online support space made existing without its promise a kind of unanswerable question.

“For many,” Kim writes, “cure demands that we suspend our living in the present and instead wait for a future without disabilities and illnesses.” Never do I find “suspended” so accurate a description of my life as anytime I go on Facebook, where the mood of the place is that of a perpetually stillborn 3 p.m. When its members aren’t offering rapid-fire responses to impressively specific questions—I, freeloader, usually fall on the asking side of this equation—the Facebook group tends to converge around collective mourning, most often for one’s “old,” “original,” or “actual” face. “My face feels like it has been stolen from me and replaced with one I do not know.” Rather than loss, the language is that of theft, the rage voiced less evocative of tragedy than crime: “I want my fucking face back.” Medicine, then, is restitution; members upload pictures from childhood: “Hopefully Dr. [X] can give me this face back.” Sometimes the face is animated from a passive, stolen artifact into a greedy double, skilled at invasion. “Strange thing,” “ugliest creature.” What use is living to the fullest extent possible if the vehicle for doing so is an usurper?

In a particularly heartbreaking TikTok released by another support group member in the before-and-after tradition, one of many unreleased Alex G songs plays. He wails, voice so frail as to blow away: “When I get home / I’m gonna bury you.” Only two images are shown, shifting from one to the other as the music surges, alongside the final syllable, into the minor key. There’s one picture of the poster before total joint replacement surgery. There’s one picture of her after. Given the lyrics, I’m sure you can imagine which image went where.

Because cure narratives—as with the before-and-after format—isolate intervention as the only way forward, Kim makes the case that popular imagination relegates “incurable” bodies to a form of “nonlife,” divesting them of the future and exiling them from the present. But my sickness could be cut out of me. I thought of the little bones, slow and secretive in their deterioration, irreconcilable online with what we thought of as living. Under a series of pre-surgery portraits one poster said were disgusting, deformed, made her gag, she wrote, “I want to start my actual life.” I couldn’t help but notice the careful layers in her clothes, the way her cheeks were brushed with bronzer.

When I broke from the cold of sedation, skeleton retrofitted with metal, and time spilled over as if from exactly where I’d left it, what exactly would that void of a “before” become? Where would she have gone? I mean the person medicine had summoned me to unseat, replace. I never asked myself if, in availing myself to cure, there was a body I was begging to die.

Next summer I will submit to the surgery. I will tuck my bones into a biohazard bag and ditch them in a hospital trash heap. I’ll become bionic. As far as TJR is concerned, they consider me a borderline case.

Here’s the thing. I feel no pain. I sink my teeth into the crunch of anything underripe, and though my incisors no longer meet, my molars can make an easy meal of any food. When I run I find it unbearable to breathe. I never really have to run. My mouth bows open when I sleep. In these moments people take terrible pictures. All things considered, it seems like a small price to pay for my lower face’s disintegration.

There’s no sensible answer to the question of why I’d permanently dismember and render myself reliant on fallible prosthetics if my day-to-day life is interrupted on only the most minor level. Instead, I’m reminded of a time shortly after making my first posts on the Facebook group, a month in which I was diagnosed with an unrelated and surgically inoperable mass in a much more critical part of my body (brain).

Confronted by the possibility that, unlike with ICR, I’d never be cured of the lesion in my temporal lobe, I plundered YouTube for hours each day in search of people who’d had things like cancer or aneurysms and survived. Most of those who self-documented did not. The platform organizes creator videos in reverse chronological order, so I watched the stories of the deceased from the most recent—often uploaded by loved ones—to the already terminal point of origin. I stopped visiting the ICR Facebook group. I was repulsed by its certainty, by any notion of “after.” Their worries seemed petty, dysmorphic. Ironically, it was during an MRI of my degraded jaw joint, in preparation for surgery, that a doctor had discovered the lesion in my brain. My body had been on a fast-moving shuttle—see how quickly it fell off.

As always, the internet had ways of catching me. “It’s strange,” people would often comment under videos by the long-deceased. “I remember him like a close friend despite never meeting him.” But my looking wasn’t fond. It was full of the same fear borne by those in the frame. The incurable state of my body, echoed in endless videos that remained accessible despite my years-late arrival, sentenced me to be remembered, not to remember. There were no images that could account for the absence of cure. Just endings. When an ill vlogger stopped uploading, no matter how innocuous their last video, users in the comments opted for mourning over speculation.

When I reached the critical mass of digitized death, I’d leave cyberspace and the dank of my room to walk my dog, genuinely feeling like I had—inevitably—already died. My hellish reality took on a heavenly aura, everything too bright and too blurry. The internet’s archive of illness had shown me every mortal outcome, skimmed me off the top of myself. The girl holding the leash was in mourning of me. That or my family, in search of cheap labor, had found her on another Facebook group.

When my doctors eventually suggested a treatment plan for my brain, it was like any awareness of its necessity had evacuated me. I ignored instructions; I was reckless with my body. Cure had become possible. I returned to the ICR support group, freed from one wound to attend to another, still limp with loose ends. Someone had photoshopped a picture of Angelina Jolie and Natalie Portman with the same steep jaw and shy chin symptomatic of ICR: What if others who always tried to convince you to accept that that is just your face suddenly also had a dramatic face change? (“My personal opinion is that the aesthetic ramifications of ICR are a bit overblown,” one member commented. Another replied: “Keep in mind she didn’t edit their maxilla. Their noses also would have drooped and become humped and their palate would have become more narrow.”) The talk was still surgery, surgery, surgery. That was the group’s function. To ensure you spent as little time as possible in that bright, blurry world I’d just left, where you were forced to see your body, in all its fragility, from afar.

And still I understood the urgency. There is something about the Facebook support group I still find myself enmeshed in, just as there was something about the YouTube videos I indiscriminately devoured, that warped my sense of self and time, making every possible outcome more real—and what was required to reach it less so. I soared into my own future as I fell into endless others’ pasts. For a while I was touched by all the talk about doing right by the “me” of the future. This being the “me” who, on the flip side of twenty-six, would lack quality health insurance, the protective gauze of an academic institution, and her parents’ enthusiastic care. I’m said to be in the prime of my life, which means I’m in the prime of my life to undergo invasive surgery with a months-long recovery. But this speculation in itself is an act of time travel, and it animates too much of my surgical calculus.

As much as the Facebook group’s rhetoric can be fatalistic, single-minded, even dysmorphic, the digital medium it rests upon—with its reliance on slippery chronologies and its tendency to recirculate the most attention-grabbing information—seems to me the most active player in the online imperative toward cure. The group is something of an echo chamber, yes, but its members tend to be both critical of evidence and receptive to new perspectives, at least relative to comparable Facebook pages. (Take as a counterexample the incel-adjacent “Craniofacial Action Group,” in which dental crowding is a death sentence and sober suggestions like the following go uncontested, even praised: “Here’s a great idea for younger children. Make it a rule that whenever they’re holding a smart phone or watching TV, their mouth needs to be taped.”) There’s also the fact that for every un-initiate like myself who comes to ask if surgery is “worth it” if they have “no pain” and “no functional issues”—a paradoxical kind of surgery, the primary purpose of which is to eliminate the possibility that one might eventually need it—there’s a member for whom surgery is an imminent need that might serve as the only remedy to malnutrition, asphyxiation, and unbearable pain. I believe that a good support group should have the room to accommodate both of these people, simultaneously.

What’s troubling is not that conversations eagerly promoting surgery take place, or that the online venue has somehow reached its maximum ideological capacity—K.’s post, for instance, was met with much sympathy—but rather that said venue’s architecture offers members only a singular point of exit. More so, that the exit itself is an illusion, reliant on the supposition that life can ever be free of disability. It’s an illusion that the digital medium, offering a support group both more immediate than the early-aughts forum and less material than foldout chairs in a church basement, is all too primed to reinforce.

Strip each “Idiopathic Condylar Resorption” post of all asynchronous conjecture, and Facebook upholds an uncanny temporality. Confessional posts from 2018 about the radiance of post-surgery life butt up against a series of diagnostic photos uploaded two minutes ago. A comment made this morning reopens a years-old debate, all original participants reanimated as if from social-networking death. A single member’s timeline condenses the entirety of their journey into a five-minute read. Combine this temporal folding with a mildly unreliable search function and the ability to scroll endlessly through a procession of variously vulnerable, emotional, and graphic disease-related posts, and orienting oneself in time, let alone within one’s chronologized experience, becomes an inconsiderate ask. Thankfully, the internet is undemanding of disability. All it begs is disappearance.

A terribly convenient thing other members told me in my early days on “Idiopathic Condylar Resorption,” before I offered any indication that I’d settled on joint replacement surgery, was that the group comprised an undeniably biased sample of users who’d had negative experiences with surgery. Unlike on YouTube, where a lack of recent posts presumed an individual’s literal death, a presence struck from the support group implied a kind of triumph for the missing. To ensure your safe return to the realm of the living: tell yourself that anything that might prevent you from getting there is a trick of the light, an omission of better information. Human absence was a lack of need, an overabundance of life, and those who remained in digispace after completing the mission were merely cut from a sadder, unluckier cloth.

Of that untraceable mass of people—the happy, want-for-nothing sort—how many refused surgery? Was that a possibility we ever allowed ourselves?

I recently had orthodontic braces applied in a cheeky return to pubescence, as well as a decisive shift in the consequences of my commitment to surgery from theoretical to material. My mouth ached for weeks as if met with a fist. I couldn’t eat solids, but if I was salt-starved enough I accepted that to bite was to wince. There are two fleshy gaps between my lower teeth and three tablets of Vicodin in my desk drawer. It’s funny, the point at which you finally manage to refuse. It’s stupid.

An incomprehensible sadness fell over me when I realized the little molars I’d carried for so long were gone. I’d just let the doctor take them and throw them away. Offered my arm up so everything could happen to my body without me in the room. “That vein’s been picked at,” he joked, then stuck me right beside the scab where last week’s doctor had, knocking me abruptly into sleep. I woke at ninety-degree angles to clot my mouth with gauze. I drooled blood on white pillowcases. I made too many smoothies and swallowed overboiled noodles whole. One morning my orthodontist took all of the metal out of my mouth, so I could get an MRI. The neuro team wanted imaging. The next day she put it all back—by nighttime it ached all over again. In her notes from my previous visit: “Remove brackets and wires. Dr. says Corinne might have aneurysm.” My paranoia was fierce, but not about that. Their willingness to accommodate me became suspect; I alone deserved inconvenience. I had chosen this. It stood to reason that everyone had grown deeply sick of me, a logistical puzzle devoid of all fun. I was hard to take seriously. Degradation precedes restoration—more simply, before it gets better it has to get worse. My surgeon told me this, as did the girls online. In these days I was prone to crying spells, fantasies of total collapse, not because my bones were shifting and selectively plucked in a regimen of pain, but because I felt humiliated. I’d made a pact whose terms had been violated. It was like I’d been cleaved in two—collateral and beneficiary. The future went hiding and this was the cost of joining the search. I had signed me away.

In truth I had committed myself to surgery long before I either clicked my way onto “Idiopathic Condylar Resorption” or knew I had the disease it was named for. When I was a teenager and a local doctor first suggested the less-invasive surgery K. had planned, I thought myself a reluctant participant in his schemes. I drew all manner of false lines in the sand; if a single element exceeded my comfort, I would opt out. But as soon as the support group insisted the procedure wouldn’t work, I shocked myself with how much further I was prepared to fall. I would shed bone, implant metal, take scars to the neck. Was there a point at which I’d have stopped? Did I keep going because the internet had haunted me with the possibility of an increasingly debilitated, dependent, and pained future? Or was I possessed by that pristine image of a postsurgical self: more capable, less uncertain, somehow more alive?

Perhaps the most horrifying specter exists outside of both of these credulous afterlives. Instead it’s all the blood I’m willing to suck through my teeth amid recovery, each mechanical opening of the mouth accompanied by a sound like sandpaper or wading through snow, the hours I’ll spend lying thoughtless in the plain dark under a film of narcotics as little fragments of my unlived life pass me by. The missed mundanities of it, like walking into the light during my last summer vacation or waving across my nascent adulthood as the people I love leave it for the world. All of the predictable medical suffering I could easily opt out of had I not come to see this diseased body as intolerable, unlivable. I’m horrified by what I’m so enthusiastically encouraged to do to myself, despite the disease’s relatively slender effects on my life. More than that, I’m horrified by my willingness to do it.

Contrary to the glowing before-and-afters aspirationally circulated on the support group, one member who documented her surgical process from her diagnosis onward says that life post-TJR is not like having normal joints. “I will never be totally normal,” she admits. As the Facebook group grows in membership and an increasing number thereof undergoes surgery, nerve endings falter, prosthetics lock and dislodge, new facial aesthetics unsettle. Our offline bodies struggle against the widgets that conceal them. The eight hours of surgery that cleave “before” from “after” encompass total joint replacement less so than the lifelong commitment to medical maintenance and lifestyle modification that the procedure ultimately demands. We’d spent a lot of time on the support group naming all we wished returned to us: an old face, a real life, existence free of disability. These things may never have existed in the first place.

Despite growing evidence of the limits of surgery, the Facebook group still fails to offer any model for life decidedly and voluntarily without it. One member posted the next-best thing earlier this June. “I truly believed nothing could help my jaw pain except surgery,” the post begins, going on to detail how physical therapy proved a breakthrough alternative in her management of symptoms. Rather than identifying her diseased body as a burden to be rid of, the user defines her struggle along the lines of localized pain, the relief of which has allowed her to forgo total joint replacement. While she makes a rare move to describe her pre-surgical experiences in the timbre of gratitude, implying a certain privilege in her ability to refuse traditional cure, her final statement leaves the specter of an inevitable consent to surgery intact: “I support those who decide to get the surgery, those who are waiting, and those who can’t.” Late last month she, too, began inquiring online about total joint replacement. Best to start with a plan. Cure is still our event horizon, our miracle salve. It can do anything but make won’t an operative word.

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