First Place: A Screaming Thing

Going to the bathroom was the worst part.

It had been unpleasant since the beginning. Even when the nerve running from my lower spine to my toes was only vibrating in a quick, angry hum through my left buttock — first like a door buzzer, later like a blue mosquito light — even then, the edge of the hard toilet seat carved sharpness into the pain, causing it to crescendo, a white noise briefly approaching grim color.

But once the nerve had moved past this buzzing agitation — once it had become a live wire shooting sharp fire from my back to my toes any time I tried to sit —  the toilet became a real challenge. In this stage, I had about thirty seconds before the dimmer switch would slide up, the volts would jolt down my leg, and I’d crumple to the floor, where I’d lie on my back, knees bent upward and legs rocking side to side until the electricity had worked its way through my body. I looked forward to the coolness of the floor tile against the aching small of my back for the incremental relief it brought — for the chance to focus, briefly, on a sensation that wasn’t the blue fire coursing through my left lower half.

I got good at a lot of things during this stage: first at staggering to my bathroom, and then — when standing upright caused the same jolts to shoot down my left side as sitting did — at crawling slowly there from my bedroom; at angling my dive from the toilet to the floor just right, so that my head didn’t hit the bathtub; at limiting my liquids so I’d undergo this process fewer times a day; at eating just enough fiber to make my bowel movements fast (but not so much that they were messy!) and at releasing them quickly enough that I could dive down to the floor before the electricity knocked me there, without smearing feces all over myself, the floor, the shower mat. Shitting was always a nail-biter.

But all things must end, and so, too, did this spell where I became so expert at balancing my body’s dire brokenness with its insistent creature needs. It was a November morning — three months after I had first injured myself, a subtle pop that I’d barely registered at the time — when I got a bit too close to upright while raising myself from all fours to the toilet. I was met with a voltage that is hard to metaphorize: If it was a live wire before, perhaps now it was lightning?

What happened next was quick. I know that I screamed, collapsed, and couldn’t move my lower body, and that I worried I might not be able to again. I was in such pure agony that a thought dawned with a white, awful light: I would rather die than feel this way, even a few times a day, even once a day, maybe even once a week.

I laid there like that for quite a while, paralyzed on my bathroom floor with my pants just barely on, staring at the invisible line I had just, briefly, crossed. My life’s worth had become a calculation: the minutes a day my body burns itself alive, multiplied by the hours when I lie terrified of those minutes, divided by whatever else was left. For those first moments after I had collapsed, as I waited for the worst of the firestorm to pass, the equation had tipped. My fear of pain had eclipsed my drive to live.

For that moment, the pain and I were no longer separable things. It had started to become me, and it would have continued to become me until I was only it, without a doctor to believe it was as bad as I said it was.

*

Years before, when I was an academic researcher, I learned about what Elaine Scarry calls mankind’s compulsion not to believe the pain of others. I use the phrase “not believe” rather than “disbelieve” with intention. “Disbelieve” suggests engagement earnest enough to produce a judgment. But people do not so much refute others’ testimonies of pain — a process that requires turning it over in one’s palm, considering it from different angles, before determining it isn’t viable — as they don’t consider its possibility: if you aren’t the one in pain, Scarry says, “it is easy to … retain the astonishing freedom of denying its existence.” It may be more accurate, then, to say that we choose to not believe in the pain of others, the preposition shifting that pain into the realm of fantasy, with Santa Claus and the Easter Bunny, other entities whose existences we effortlessly deny.

I studied all of this before I experienced real pain. Clarification: All pain is real. I mean pain of a magnitude that others might refuse the possibility of its realness. This may sound like dramatic irony — the most “real” pain for the sufferer is least real to everyone else. But it also bears the stinging truth of paradox: it sounds impossible, absurdly so, but once you start teasing the threads apart, it makes cruel sense. Consider what happens when Meghan O’Rourke — who for years was debilitated by an undiagnosed illness — asks a philosopher friend why people in general, and doctors in particular, so often fail to recognize the suffering of others:

‘Well,’ he said, ‘recognizing your suffering puts a burden on me … I have to respond. I have to empathize. And that takes a toll on me. And the more people I have to empathize with, the harder it is’ …

 That there is energy in the act of recognition was, I realized, true, and its truth was a problem for those who were ill.

It is not simply “effortless” to deny the pain of others. It is a matter of preserving one’s own fragile peace — one’s own distance from painful empathy and burdensome action.

When I researched pain — the ways that people refuse it in others, and, when suffering themselves, try to bridge denial’s gulf — I became fixated on the ways that pained writers slip their suffering past their reader’s defenses. As I read through thousands of pages, pored over words and phrases written by sufferers, and about suffering, I noticed how writers often expressed pain not through tortured descriptions, but tortuous forms: inscrutable metaphors and circular narratives that disoriented and distressed readers, weakly approximating the disorientation and distress of pain itself. I wrote a 200-page research project about these subtle communications of a screaming thing. I called this project, “Forms of Suffering.”

But whatever understanding I gleaned was nothing like what came with feeling a quarter of my body paralyzed and ablaze, and then having Beckettian conversations with impervious doctors and nurses who exercised their “astonishing freedom” to deny my pain existed: who would invite me to sit when I could only lie down, send me to crawl across a medical complex for bloodwork, scold me suspiciously when I asked for pain relievers. For all of my efforts to understand pain — to understand how I might not perpetuate the refusals that magnify it — I didn’t understand it until it was also mine, and it wasn’t mine until I knew the pain of facing a stream of medical professionals who presumably know what afflicts you, presumably know the character and intensity of the pain this affliction causes, yet have no sense at all of what it means to suffer from that pain, or of how desperately you need it to stop.

And so, when I say, “I studied all of this before I had experienced real pain,” what I mean is this: I studied our denial of suffering when my own suffering had not yet been denied.

Now that I’ve been on the other side, I’m less interested in subtle communication. Leave subtlety for those romantic pains like nostalgia, like regret. For this? Give me electric flames, described without flinching. And I’m sorry — keenly, sincerely — but only just. Because it needs to hurt for you to hear it at all.

*

I’m speaking boldly now, but in the months when I was descending into self-immolating pain, I was hellbent on staying polite about it.

I was polite to the chiropractor who I saw at the first hint of back pain, who gave me an adjustment — that’s the word they ask you to use, eager to rehabilitate their reputation for “cracking” bones — so aggressive that he pulled me nearly off the table, after which I went from “Advil and ice” pain to “I can’t go into work” pain, after which I returned to his office, after which he ordered an X-ray. When the results arrived, he mused incuriously that I had a slight curve in my lower spine that he’d somehow never noticed before, diagnosed me with “lumbar weakness,” and punted me to physical therapy. I concealed my suspicion that this new spinal curve pointed to something other than my own weakness — I later learned that it was caused by my muscles recoiling from my blazing spinal nerves — and followed his physical therapy order, even though I didn’t believe his diagnosis. 

“It really hurts,” I said quietly as he typed the order.

“No one wants to hear they need weeks of PT,” he replied as he showed me out.

I attended half a dozen sessions with a physical therapist who knew the chiropractor well, knew his diagnosis was wrong, and was too polite herself to contradict it. Instead, she equipped me with a flimsy curved pillow and a battery of daily exercises that made me rapidly worse, before (literally) throwing up her hands and blurting: “I don’t know what else to do with you.” (I still have the pillow, and I still call it “Satan’s pillow.”)

After the physical therapist had given up treating me for the wrong condition, I tracked down an orthopedic specialist. (My first, short ride to his office became a rueful milestone: I could no longer safely endure the electrical throb that gripped my thigh while driving. It was the last time I drove myself for months.) I was polite when he asked me during my first visit to have a seat when I could only stand, and again during my second, when I could only lie down. I was polite when, after receiving my MRI results — which showed my spinal disk’s matter had spurted so far outside its membrane that it was suffocating the sciatic nerve woven through my lower left side, putting it in a state of constant, pressing alarm — he wouldn’t discuss them with me virtually, even though the MRI left no room for interpretation, even though my husband needed to take time off of work to drive me, and even though I had to lie in the dropped-down trunk of my hatchback while he did. Once there, I could barely walk from the car to the lobby, barely stand in the waiting room, and barely ease myself onto the exam table, where I lay, barely able to reply when he described the test results. I was polite when he left without discussing my pain management, or mentioning my pain at all, and again when, after I asked his physician’s assistant for nerve blockers, her face hardened into a creased pit of doubt. “The doctor doesn’t believe in those medicines,” she said (as though pharmaceuticals, like other people’s pains, were the Easter Bunny) before adding, suspiciously, that such drugs were “highly addictive.”

It was the last time I would go to his office, but I was too polite to tell them why.

*

As my husband and I shuffled out of the exam room during that final, maddening visit to my orthopedic specialist, I fumed. They had treated me like I was in no pain at all, and they had suggested I had a drug dependency when I reminded them that I was. “Can you believe this?” I asked my husband.

He was quiet for a moment before replying, “Do you think it would help if you let them really see how much pain you’re in?”

 I was stunned by the question. The orthopedic specialist and his team dealt with people who had my condition all the time; they must know how harrowing the pain I was experiencing was. And if they didn’t, couldn’t they tell by the fact that I could barely walk into the exam room, that I had collapsed in a wincing heap on the table, where I stayed for the entire consultation? That I needed my husband to drive me there, hadn’t been to work in weeks? How could they be so indifferent to my suffering, when grave pain could be the only reason I would give up so many of the most essential facets of my life?

“True,” he said, carefully. “But you’re also being friendly and making jokes.” Silence. “I just wonder if you didn’t try to hide how bad you felt, if they might treat you differently.”

In a way, he was right. I had made pained jokes as I labored to get on the doctor’s exam table, had agreed to his casual treatment timeline, and had thanked him for his time as I cowered out the door. Did I do this because friendly deference is a part of women’s social conditioning, and a condition of our survival, and therefore very hard to shut off? Was I subconsciously trying to avoid the conundrum that Leslie Jamison probes in “A Grand Unifying Theory of Female Pain”: the only thing more boring than women’s pain — its ubiquity, its persistence — is the woman who articulates it loudly enough for others to hear? Did I think that being polite, composed, and funny would spare me from the names that doctors and nurses have for this noisome woman: “hysterical,” “emotional,” “complaining,” a “malingerer” who is “fabricating the pain, as if it is all in her head,” according to one recent study? Given the names that healthcare professionals admit that they give female sufferers, is it any surprise that women who seek treatment for physical pain — for cancer and bone breaks and ulcers, in ERs and post-operative wards — are less likely than men to receive it, and more likely to instead receive referrals to psychiatrists and prescriptions for antidepressants? It’s enough to make you want to scream. It’s also enough to make you suppress that very impulse, since doing so may give your doctors an excuse to dismiss you. Perhaps this was why I resisted my husband’s suggestion: as reasonable as it sounded, it felt less like a solution than another bad option.

But something else also fueled my resistance — something I couldn’t admit until I had arrived at the other side of my pain, and that I am ashamed to admit even now. For all of my academic interest in amplifying and honoring the illness stories of others, I was terrified to claim my own — to acknowledge that I had lost my autonomy, my physical control, and, in certain moments, what felt like my dignity. So I hid my vulnerability behind humor and chatter, complied with care that was anything but, all to distance myself from those hysterical others who complained and malingered. I made their voices weaker by refusing to join them; I made all of us easier to ignore.

*

Two weeks after I left the orthopedics office for the last time, and a day after I lay prone on my bathroom floor, unsure when my life would again be worth the pain, I got lucky: I met with a skilled, kind neurosurgeon who took one look at my MRIs and operated on me within the week. By then, I was a spectacle: His office wasn’t equipped for gurneys, so, unable to walk or stand or sit, I crawled into its lobby on my hands and knees, and lied on the examination room floor, craning my neck to see the images of my back’s wreckage that flashed across his monitor. (“You crawled like a dog?” my father later asked. He was pained by the indignity I suffered; was he also ashamed of the scene I had made, or did I only think this because I had been ashamed myself?) My surgeon and I discussed treatment timelines and pain scales; I offered dates and translated agonies into numbers. I didn’t joke — I took that much of my husband’s suggestion — but I still stuck to the facts, keen to remain objective. It felt incredibly important to seem like a rational person while lying there on the exam room floor after I had crawled there from the lobby, where a nurse, upon seeing my indecorous arrival, had informed the receptionist in a voice steeped with derision, “I’m not carrying her to the exam room.”

Her remark was just one sign I received that day of how “astonishingly free” others were to deny my pain’s existence: from my surgeon’s inaccessible office, to his staff ordering blood work at their affiliated hospital without informing them I needed a gurney, to the hospital attendant who watched me arrive on my hands and knees, pointed at a kiosk across the hall, and said, “You can find a clean face mask there.” By now you know how I responded in these moments: without question, without protest, and with a self-effacing demeanor that was grotesque under the circumstances. I needed this care so desperately, and this was the first provider that seemed willing to give it. How could I risk losing their sympathy by telling them how these acts of astonishing callousness really made me feel?

I don’t believe in the phrase “all better” — which suggests you can restore the version of yourself that preexisted your pain — but I am better now than I dared to imagine I could be. My surgeon responded to my suffering with empathy and carved my exploded disk back to size, lifting this unbearable pain from my body for as long as time allows. I am grateful for his care and recognize many of the privileges that gave me access to it: my caring spouse, my comprehensive insurance, my lenient employer, my financial security. I am aware that my body might not be better at all if I were Black or brown, or trans, or uninsured — all identities known to compound the gross lapses in care experienced by women.

But I am still haunted by how it felt to have pain so quickly steal my ability to drive, to sit, to walk, to stand, to use a toilet, and to see my life extending anywhere outside my body’s tortured bounds. And I am still haunted by how ashamed I was of how bare my life had become, and how incredibly vulnerable that felt, and how polite that made me. I felt my humanity and my pain were incongruous — that I had to choose between them, keeping pain silent to retain who I was. But my silence only made my pain worse, letting it grow until it threatened to become me. And it reinforced the expectation that people who suffer — especially those whose identities and experiences mark them as always already less credible by healthcare workers inconvenienced by their truths — do it politely enough that they can be easily ignored. In the wake of my pain, the only way to reclaim myself was to stop being quiet about it.

*

As a researcher, my interest in stories about pain was sincere but abstract. This was important at the time: in academia, you can’t be trusted with a subject you know intimately.

I left that world years before my intimate knowledge of pain made me a questionable expert in its literary articulation. These days, I am not interested in pain stories as much as I am driven to them — to reading them, teaching them, and writing them, as if some part of my life depends on it. My husband teases me about my reading material, with its preponderance of dolorous titles: The Crying Book; Two Kinds of Decay; A Body, Undone. “What if you read a happy book?” he asks, kidding in a way that veils concern. I hear someone who misses the version of me who would stay up late reading about dragons and mages, speculative worlds just different enough from our own. I also hear uncertainty, tinged with disbelief: I do not understand how this helps you heal.

But it does. Even though each illness story I read is different from my own, they show me I am not alone in feeling profoundly changed by what my body has suffered, and by the ways that suffering was not received. They also show me that bringing your pain so nakedly to the world does not obscure your humanity. Rather, it illuminates it: what animal but a human one would risk such vulnerability for hope of helping others heal and be heard?

Belatedly, I am joining their voices. If alone we are malingers, together, could we be sirens? I hope enough of us howl our song in unison that we are too loud to ignore.

-Jessica Tabak

Jessica Tabak (she / her) is a writer and educator based in Rhode Island. Her teaching and writing explores the connections between pain, memory, and art. This is her first published creative nonfiction essay.