Pain is like vinegar: noxious at first whiff then startlingly ephemeral, evaporating to leave no mark on memory.
I have done battle with uncomfortable seats at parties and concerts, in airplanes and living rooms, only to later recount the experience with pure enthusiasm. I can remember clearly the conversation, the music, the view of Manhattan from above, but I forget that the dominant sensation in these moments was not wonder but pain.
It is therefore tricky to construct a timeline of my pain, to chart the fluctuations over months and years. The bad moments are quickly stripped of their potency, while the good moments do not even register as relevant. The only way for me to objectively assess my disability is by assessing what I could and could not do at any given time.
Two years ago I could sleep, sit, draw, read, and drive comfortably. Now the only thing I can do with ease is walk. Typing is unpleasant but bearable. It requires an extensive, expensive setup tailored to my disability. My neck burns ceaselessly and I can only write a few lines before stopping to stretch. Drawing used to be similar: I could sit with the discomfort long enough to do my work, then rest long enough to recover. But then my spine deteriorated further, pressing my clavicle into the nerves beneath it, weakening my hands and interrupting my career.
Before I was ever disabled, I used to have panic attacks so severe that I dissociated from my body. When I looked down at my hands, they registered as unfamiliar, separate from the mind that perceived them. They might as well have belonged to another person. I watched them with apathetic curiosity. Their movements seemed random, beyond my control. They flopped about on my lap like fish on a dock.
These days the dissociation is purely physical: it occurs when the blood vessels leading to my hands fail to deliver the requisite blood, pinched as they are between collarbone and rib. My hands grow cold and rigid. In those blue-tinged palms, I can see my future.
I see the cold spreading like a spot of ink, feathering out into the rest of my body, transforming me, turning me into someone else. The cold moves like time, only faster.
I have a spinal condition, a birth defect that for two decades lay dormant at the base of my neck, quietly rewriting my future. When it finally emerged it took center stage, a scene-stealing breakout star. It dominated my field of vision and I coped by closing my eyes.
Humans are wired to enjoy the impermanent. To most of us, the knowledge that life ends only enhances its value. Thus, in the years since my diagnosis, I have managed to enjoy my hard-won, short-lived success, knowing all along that it was not mine to keep. My time in the sun would always be a sunset.
Here is a lesson I learned twice: if you’re waiting for the perfect moment to quit, you’ll be waiting forever.
I learned it for the first time as an aspiring illustrator earning minimum wage, dreaming of freelance freedom. I learned it again three years later, as a professional artist losing the ability to draw. I relied on clients and customers for financial support, and I couldn’t imagine relinquishing the rest of my independence to family and friends and doctors. I held tightly to the things I could still do on my own—carry a bag and drive a car and generally take care of myself—even as they became more and more painful. Who knew what lay on the other side of surrender? I imagined it was nothing worth having. I had monetized my greatest joy in life and could no longer distinguish between the personal and professional: I equated the loss of my career with a loss of life itself.
Two months ago, I did a live Q&A session on Instagram. I sat before my phone camera and read from a list of questions submitted by strangers across the globe. The questions arrived one by one at the bottom of my screen, slipping up and away before I’d had a chance to process them.
Alone in my London living room, wrapped in a flannel pajama set, I felt excruciatingly exposed. Hundreds of unseen eyes lay just beyond the screen, shrouded in online anonymity. They looked on as I searched my panicked brain for answers, sweating like a spelling bee contestant, with a manic smile affixed to my face. In the top right corner of the screen was an eye symbol with a number that ticked up and down in real time as people entered and left the broadcast. The number disturbed me: what did it say about me as a speaker, an artist, a person? Discreetly, I put a piece of tape over it then carried on as though I’d just wiped a smudge from the screen.
For an hour I held court with a thousand strangers while staring into my own two-dimensional, quarter-scale reflection: a simpler, smoother-skinned me, framed in unfamiliar usernames. I watched myself answer the same old questions (about learning to draw and building an audience) the same old way (work hard and be consistent). I was the picture of health, casually leaning back in my chair, putting a foot up on the dining room table. I looked entirely at ease in my own body. But my neck burned. My arms throbbed with nerve compression. My hands lay numb, inert, in my lap.
The distance between these two selves was disturbing. It was a distance both physical and chronological: two feet and two years apart. My online persona hadn’t caught up to reality. No one else seemed to notice. “I want to be you,” one comment read. I watched it slide across my reflection before disappearing over a black-edged horizon.
This is 2020: do I need to tell you that what you see on social media is only a small fraction of the story? It’s a single immaculate sliver of cake cut carefully from a half-baked mess. This is my kitchen: I hold the knife, I decide who gets what. And at the end of the day, I’m stuck with the dishes.
I am the lone receptacle for a battalion of gut reactions, bad intentions, and misguided advice. They arrive quickly, tapped out in a few seconds, forgotten with a single flick of the finger: onto the next thing. Writing something online feels very different from saying it in person, but reading it feels much the same as hearing it: a line of text hits like a catcall, a screamed obscenity on the street. It stops me in my tracks and echoes in my head long after I’ve returned home.
If it weren’t for social media, I might still be working the checkout line at the grocery store in my New England hometown. Instead, I’ve lived in Berlin, Paris, and London, trading art for income wherever I go. I have no employer. I survive off hundreds of small purchases each month, averaging about $7 each. It’s a bit like digital crowdsurfing: precarious and exhilarating and wholly dependent on the whims of strangers.
For two years I was the perfect influencer. I surrendered myself to the algorithm, allowing it to set my course even when it contradicted my own instincts. I posted an original work of art every day at exactly noon. I skipped meals and canceled plans to get it done. I remember once being locked out of my apartment and crying inconsolably on the front lawn because my sketchbook was still inside on the kitchen table: I wouldn’t finish the day’s drawing in time.
When I dropped the ball, the numbers followed. I lost relevance in the span of days. This was more than simply discouraging: it had real financial repercussions. Lower engagement translated to lower sales. If no one could see my work, how could I convince them to buy it?
As I spent more and more of my time on social media, I began to prioritize numerical success—in the form of comments, likes, and follows—over my own creative judgment. I viewed my career as a complex mathematical equation, the solution to which would bring me recognition on a larger scale. I questioned every decision I made, and then questioned the questioning process. When a drawing received fewer likes than usual, I wondered whether it was genuinely bad or whether I’d simply posted it at the wrong time of day. My own taste rarely aligned with that of my audience. What I considered to be my best work yet—a series of highly detailed life-size portraits—went largely ignored, whereas a series of little flower doodles went viral. I overrode my impulses and chose subject matter based on its viral potential. Even when such scheming paid off, the resulting success was hollow and unsatisfying. It brought me a cohort of followers who wanted more of the same. Terrified of losing them, I played it safe and drew the same things over and over again. I forgot why I’d started drawing in the first place. Did I draw because I enjoyed it or simply to avoid becoming irrelevant?
I needed a break from the noise. I made the decision to reduce my output to three posts a week. My sales tanked. One by one, followers unfollowed and students quit my online drawing course. There was no marketing team to promote me in my absence, and there was certainly no one to draw or teach for me. My fears were confirmed: my success was indeed contingent on hourly updates, engaging captions, and lightning-fast, gracious responses to unsolicited one-word messages.
Like a desert metropolis, my career had sprung up overnight out of nowhere. I’d been dazzled by its unlikely existence. I’d kept on building up and out, working at a pace that only a healthy person could sustain. My career collapsed the moment my body did.
It began as an ache in my neck that kept me up at night and faded each morning, leaving me tired but able to work. I started using a folded towel in lieu of my suddenly too-soft pillow. I put another towel between my knees to straighten my spine. Still, I inevitably awoke an hour later with a throbbing shoulder, only to roll onto my other side and begin the cycle anew.
Lying down, once the simplest element of my daily routine, was suddenly a complex equation. I became uncomfortably aware of the mechanics behind rest: if I lie on my side, my shoulder folds forward, pulling my neck into an awkward bend; if I lie on my back, my lumbar spine arches, pushing my chin toward my chest. How had I ever slept before? Why was it only now beginning to hurt?
I was living in Wisconsin with a friend who’d moved there for work and convinced me to join her. She spent her days in a glass-walled office at a big Midwestern tech company. I stayed home and made a mess of our new living room, covering the secondhand tables and chairs with scraps of paper. I was developing a technique for shading in pen and ink: a modern reinterpretation of the crosshatching I’d discovered in a set of Old Master prints at my old job as an art handler.
My formal training as an artist was limited to a Drawing 101 course I’d taken in sophomore year of college. To compensate for my inexperience, I enforced a rigorous schedule of self-teaching exercises, on top of the commissions I was getting—custom portraits priced modestly at $30 each. When all was said and done, I was making less than minimum wage. I worked nonstop to compensate.
This was the humble start to an improbable career. Back then, I could barely cover my rent. I started at eight in the morning and drew until midnight, so it did not surprise me when my nocturnal pain crossed over into waking life. I’d been neglecting my body, hunching over tiny drawings for hours on end, and the effects were already apparent. My fingers creaked like old wood and I even started wearing glasses—a small price to pay for living the dream.
December came and commissions started rolling in like never before. It was my first holiday season as a professional artist. People were offering twice my listed rate to churn out last-minute gifts: wedding portraits, dogs, cats, and babies. I couldn’t say no to the money and so I worked day and night, anticipating a sales drought and a much-needed break in the New Year.
I spent Christmas at my boyfriend’s childhood home in Indiana. We hiked lakeside trails, exchanged handmade cards, and played racquetball at the local YMCA. I felt great, though back then I probably would have called this sensation normal. Then we packed up the car and drove fifteen hours east to move into our first home together, a white colonial near the school where he worked.
For the first time in my life, I was earning a comfortable living as an artist. I was technically unemployed and yet my commissions were adding up to a full-time salary. Still, it was hard to lift the mental barriers I’d put in place to save money. I’d been leading a nearly monastic existence governed by a strict code of conduct: no new clothes, no meals out, no trips to the cinema, no beverages but water. I’d been sleeping on couches, and here I was shopping for mattresses. I signed up for a gym membership and bought groceries at the health food store without checking the prices. I ordered a big desk and set up a studio in my new living room. There were three big windows overlooking the street, and a dark wooden door with carved floral medallions. I sat at my desk and drew. I couldn’t believe my luck: I’d sidestepped all the pitfalls of adulthood—bosses, alarm clocks, business casual—and still had a roof over my head.
I drew whatever I pleased, then took photos to share with an audience that had grown tenfold in a matter of months. I sold and mailed the drawings the same day. I was a highly visible success story, an inspiration to hundreds of thousands of people. I started a podcast, wrote books, taught workshops, and founded an arts organization. I was building an empire.
And all the while, slowly, secretly, my spine was falling apart.
After the Q&A session I received a message from my mom, who’d been watching the broadcast from two thousand miles away in Connecticut: “Can’t help noticing you’re rubbing your neck a lot,” she wrote. “How bad is it?” It was a question I hadn’t asked myself in a long time because the answer was always the same: the pain was bad, so bad that it eclipsed all other sensations. It was the booming soundtrack to my inner world.
I opened the video on my phone and scrolled through the footage, condensing an hourlong speech into a few frenzied seconds. Sure enough, my digital self kept reaching for my neck in what looked like an automatic motion, almost a tic. Over and over, her eyelids twitched in pain and her mouth tightened into the shape of a small buttonhole.
As I watched, the imagined distance between my two selves collapsed: we were both in pain. I put down the phone and got ready for bed. I brushed my teeth clumsily with my left hand—my right hand was reserved for drawing. It hung limply at my side, still vibrating in the aftermath of another day of work.
My body was incongruous. My non-dominant left side stumbled awkwardly through simple tasks, but what it lacked in dexterity it made up for in well-being. It was less swollen, less numb, less painful. Meanwhile, my right side was in turmoil. The slightest movement set off an internal alarm system, as though by simply scratching my head or reaching across a table I might cause serious and permanent damage.
In bed, I looked at my phone one last time. I scanned Instagram for updates, fresh squares of unattainable skill and success. I then visited my own page. The follower count, nearing two-hundred thousand, was six times the population of my hometown. Each of those people had formed an impression of me through my page. But where they saw a virtual art gallery, I could only see a record of past suffering. Behind each image lay the hours of harm I’d inflicted upon my body to create it, the invisible strata of compound injuries: the dense knots of muscle in my shoulders, the taught tendons across my chest, the tingle at the base of my skull where my spinal cord was compressed, the swollen joints I forced, like old horses, to perform the very same tasks that had ruined them.
I tapped the settings button and scrolled down to the very bottom. “Are you sure you want to disable your account?” Yes, I was sure.
Imagine crumpling an empty bag of chips in your hand. This is the sound I hear when I turn my head. There are also seismic shifts, violent clicks of bone on bone as my vertebrae fall in and out of alignment against my pillow. The noise shakes me out of sleep in the middle of the night.
For the first few months, I told no one. The problem existed only in theory. It was unconfirmed, unsubstantiated. There was still a chance that it might come and go like any number of hypochondriacal medical concerns I’d harbored over the years: the lump in my armpit, the itchy mole on my arm. I waited for the problem to retreat into unreality. I didn’t even tell the man I lived with, who slept beside me as I lay awake at night, terrified of the sounds my skeleton was making within me. They were so loud—could he not hear them?
Gradually, the pain poked a hole through my vow of silence. I’d lost my duel with the invisible hand on the back of my neck, which shoved my head violently, relentlessly forward. All I could do was strain my sore muscles ineffectually against it. I needed reinforcement.
I was lying on the bedroom floor one evening after a brutal car journey, crying through the lingering pain, still feeling the phantom headrest against my skull. My boyfriend stood above me, confused. There was dinner on the stove. It should have been a normal evening. In frantic fragments I explained to him what was happening inside my body. He listened, bewildered. A crying fit over some neck pain? Might there be something else on my mind? I was twenty-three years old and looked perfectly intact: no one was as worried about my health as I was.
A few days later, I broached the subject with my doctor. He felt my naked back and told me not to worry. If I could reduce my work hours and take some over-the-counter pain relievers, the problem would most likely resolve on its own. But it didn’t.
Over the ensuing month, I worked less and moved more. I bought joint supplements and followed yoga routines on the living room floor. I forced myself to reframe the problem, to think of it as merely a symptom of anxiety: something that could be overcome with patience and self-knowledge. The fact that I continued to be anxious about it only confirmed its psychological origins. I was haunted by visions of my spine disintegrating within me, my body collapsing like a tent with no poles.
The anxiety wasn’t helping, but it also clearly wasn’t the whole story. There was no talking myself out of the noises. The noises were objectively real. I could hear them. And then there were the clicks and crunches, which I could feel when I put a palm to my spine. I went back to the doctor and begged for a test, a referral, anything. I refused to leave his office empty-handed. He ordered an X-ray.
For one strange week, I stubbornly persisted in leading the life of a healthy twenty-something, as though impersonating a past self. I was not willing to reshape my identity around a temporary condition. I worked, saw friends, stayed active. I was browsing a rack of used bikes when the doctor called. “This is very interesting,” he said. “You’ve got two vertebrae fused together in your neck.”
I don’t remember how the phone call ended, only that after hanging up I went up to the owner of the bike shop and told him I had just been diagnosed with a spinal condition. He said nothing. What could he have said? I purchased a bike and wheeled it out onto the street. I folded my cold fingers around the handlebars. I felt oddly misaligned as I pedaled home, as clumsy as a novice even though I’d been biking for two decades. My shoulders trembled and I struggled to hold my head high enough to see the road ahead.
I must have looked youthful then, full of energy, pedaling through the July sunshine, my hair swept back by the wind. I got home and spent the afternoon on the edge of the bathtub, inspecting my back in a series of angled mirrors.
As my spine deteriorates, so too does my quality of life. I’ve aged decades in a matter of months. I can’t stand for too long, nor can I sit in most chairs. I’ve learned to spot bad seating through cafe windows, or in the background of brunch photos in online reviews. Anything that limits movement is a form of torture: plane rides and public transport are a passage through hell; work can only be done in short bursts, which isn’t exactly conducive to a flow state; the last time I went to a movie, the headrest pressed into my neck so violently that I worried it would damage my spinal cord. I cried the whole film through and afterward blamed it on the plot. My circulation is getting worse, too. Sometimes my hands are so stiff that I can’t even finish a text message until I’ve run them under warm water. Raising them above my shoulders—to wash my hair or grab something off a shelf—sparks a sobering jolt of pain.
I’ve done everything I can to reverse or at least slow the progression. I devote an hour daily to the exercises I learned at physical therapy. I have accumulated a small gym’s worth of equipment: foam rollers, resistance bands, and massagers. The exercises don’t seem to help anymore. I do them anyway to stave off the feeling of powerlessness. I’ve also tried meditation, visualization, prayer, crystals, supplements, and drastic dietary changes. Still, I spend every second of my life in discomfort. This is not a temporary state of being. Denying that only denies myself the relief of acceptance.
Disability narratives are disquieting when they don’t have happy endings. When I notice this disquiet in the faces of strangers, I am tempted to curtail the truth and replace it with platitudes: pain is a gift, and a life without struggle is only half-lived. By this logic, we should all look forward to the day our bodies break down and we can finally unleash our true selves.
To be sure, a small dose of disability might indeed make anyone kinder, tougher, more interesting. But unless you are on intimate terms with a disabled person, you might only ever hear the stories they tell on good days. These are the stories told when things seem manageable, when symptoms are under control and spirits are high.
The stories we share publicly are the stories we tell ourselves. They are stories of hope. We write them in the hope that we might one day believe them full-time. We insist that we are grateful for the bad, because it opens our eyes to the good. In a sense, we’re telling the truth: illness has the effect of casting in relief the once-unappreciated joys of a functional body. I certainly took my health for granted pre-disability. I moved with ease back then, my joints silent, my neck simply a body part rather than the source of my misery. In any given moment I felt nothing. I did not know that this nothing was the absence of pain.
Nowadays I experience my body in excruciating detail. The subtlest movement sends me out of alignment. I tense when I ought to relax, and falter when I ought to persevere. Even in sleep, I am aware of my physical form: I can feel my head on the pillow, my back on the mattress, my shoulders creaking with each breath, my neck aching after a long day of holding my skull aloft. When I sneeze, my spine cracks in two different places—a sharp click at the base of my skull and a powerful clomp between my shoulder blades, horse hooves on pavement. I think of the awareness as enforced mindfulness, Buddhist hell—nothing like the tranquil healing state hawked by YouTube gurus whose only obstacles to well-being are spiritual, not medical.
How strange it is to hate the very vessel that contains me. How strange it is to sit here and use these bones to describe these bones, to reproach them even as they offer themselves to me, defying disease to lift me out of bed each morning and grant me a life with no end in sight. I want this to be enough. It is not always enough. I want and need to do more than simply exist.
A year ago, I was well on my way to becoming yet another chipper voice in the disability choir. I preached online to a crowd of scared, struggling young artists who sent stories of leukemia, car accidents, juvenile arthritis. I reassured them that their disabilities would never get in the way of their dreams.
I should have told them that even if that did happen, they would find something else to live for. I wish someone had told me that. I wish I’d known that the self is not confined to the body, that the strongest sensations are psychological.
I have come to see my body as a stage upon which life takes place. The wood might be rotting but the show goes on. I’ve also had it the other way around. I’ve been mentally ill in a healthy body—a contrast far more disturbing than being disabled and happy.
My inner monologue is cryptic and fleeting and nearly inaudible above the din of chronic pain. It is constantly interrupted by bodily signals, desperate pleas which I am powerless to satisfy. If I were healthy, these signals might be serious cause for concern. The sensation in my neck—now as mundane and unremarkable as my own heartbeat—might lead me to seek emergency care. But the signal has sounded for years, and has yet to follow through on its threat of imminent disaster. I’ve learned to let it scream itself hoarse.
It is sometimes possible to escape this noise through distraction, through focusing on the external world. But to write is to do the exact opposite: to look inward, turn the volume up, and amplify thoughts indiscriminately. To write is to hear suddenly the individual components of white noise. The indistinct chatter of a crowd dissolves into a series of overlapping conversations. Each time I enter this state, I am tempted to turn around, to continue living next door to my inner chaos, hearing it only through the walls.
I showed this essay to my boyfriend and he read it beside me in bed. I lay tense, scared, already regretting sharing the unedited draft that had felt too urgent to keep to myself. Through words I can share the pain with those who cannot feel it. I can pull it out of my mouth and inspect it like a rotted tooth. I wanted him to see it, to know that it was there.
My boyfriend turned to me. “This almost reads as fiction,” he said. “I mean, I wish it were fiction. I wish it weren’t real. It makes me sad to think of you in pain.”
I managed to stop myself from responding in anger, but his words sparked an internal catastrophe. I wanted to scream at this unbearably healthy person, whom I loved and envied in equal measure: “I too wish it weren’t real. I too am sad, and not just in the moments when I tell you about it. Please accept this apology on behalf of my life-altering, dream-crushing agony.”
The temptation is to make sense of things, to corral the mess of life into a tidy narrative. Health is supposed to follow a clear trajectory: problem, diagnosis, solution—or death. But what about those of us lingering in the purgatory between stages? Those of us with problems but no diagnoses, or diagnoses but no solutions? Those of us for whom nothing can be done? We are the toughest cases to accept, because while there is inspiration in healing, even in martyrdom, there is none in prolonged suffering.
It sounds like fiction because it can’t be real. Pain can only be felt individually. To the rest of the world, it is fictional. When I walk down a city street, passing thousands of strangers along the way, not a single one of them registers my pain, obvious though it may be to me.
A story can only ever contain a microscopic shred of its subject. It’s a single brushstroke in an unfinished mural. And yet even this small portion can be devastating to the uninitiated. If my boyfriend couldn’t handle my story, how was I supposed to handle my reality?
The pain is invisible, but I take solace in the fact that its origins can be seen on an X-ray, can even be heard in the stilted turn of my neck. I take solace in the diagnoses, each one named for a long-dead doctor. I take solace in the blood tests and the MRIs, which I can pull up on my phone in an instant. Still, it is all mine to feel. I can prove this case but I will never solve it.
***
Rumpus original artwork by August Lamm.
