by Abby Norman
In the photograph, I have my hair up in a messy bun. I’m wearing a big sweater and looking away from the camera, and I seem exhausted and miserable. The image triggers the next cascade of memories for me: I was in my biology lecture, which I hadn’t wanted to miss, but I couldn’t concentrate. I don’t think I managed to take any notes, and as soon as it ended, I limped back across campus and went back to bed, having accomplished nothing aside from wearing myself out. The pain had reduced itself to a dull, almost undulating ache, a perfect storm ascending inside of me.
I felt feverish, nauseated, and like I couldn’t keep my eyes open. I slept for the rest of the day and the better part of the next. I found it impossible to get comfortable: sitting up, lying down, fetal position, everything felt miserable. It felt like there was something inside of my body that was going to “pop” if I lay on my side or twisted my torso. I didn’t eat for days; it became hard to sleep. By the time my weekend shift at my work-study job rolled around, almost a week later, I had started to accept that something was seriously wrong. I remember showing up and putting the coffee on—and collapsing. For the first time in years, I cried. Inexhaustibly, snottily, hard. I told Rebecca I was sick and needed to go to the hospital, and her dark eyes regarded me with bewilderment. I don’t think I’d let on, until that moment, how bad I truly felt. Not even to myself.
If you’re wondering why I had waited about a week before going to the hospital, despite being quite obviously ill, the answer is a complicated one. There was the practical concern about cost, because I didn’t have decent health insurance. Many of my peers had benefited from the freshly minted Affordable Care Act, which allowed them to stay on their parents’ health insurance plans until they were twenty-six. I had forfeited all that upon my emancipation at age sixteen, and I was extremely concerned about how I would pay for the cost of any care I received, not to mention any medications I might be prescribed. God forbid that I’d have to figure out how to pay for a hospital admission.
Another element of my reluctance to seek help was deeply rooted in my personal psychology, part of a complex belief system I hadn’t yet been able to shed. As a little girl, whenever I would get sick with some routine childhood illness, my mother implored me to “talk myself out of it.” She was exhausted from her own illness and its antecedent psychological torture, and she didn’t have the energy to take care of a sick kid.
She was particularly harsh and unfeeling toward me if I had a stomach upset of some kind. I can only assume that my throwing up was a highly triggering event for her, given her illness. If I approached her for comfort in those long, seemingly endless dark nights of my childhood ailments, she rejected me. I took her revulsion personally, as I think any child would, and vowed never to get sick again. I began to use all my mental fortitude to “talk myself out of it” whenever I took ill, so that life could resume as per usual—for Mum and me both. There were occasions, of course, when I couldn’t use mind over matter. When I inevitably did throw up, or have a fever, or get strep throat for the umpteenth time in a given year, I internalized those instances as personal failings.
Yet another contributing factor was that the first time I had trusted a doctor, she had let me down. I know now that there are complexities to reporting suspected child abuse. I know that the suspicion must be high, that there must be proof. Given that I was hardly out of elementary school at the time, all I knew was that I was scared and hungry—and that white coats meant someone knew a hell of a lot and had power to make you better.
At some point as a child I’d developed an elevator pitch of my situation, trying to be ready for the oft-wished-for but never manifested opportunity when I would be alone with an adult who might be able to help me. I’ve never been a particularly succinct individual, though, so while my pitch was well articulated in my head, it never seemed to form as a cohesive statement. Instead it just sounded like a series of sighs and mumbles, along with the occasional throaty hack of nervous laughter.
The pediatrician asked my mother to leave the room when I was, if my memory serves, there for a routine immunization. I couldn’t have been more than ten or eleven. My mouth went dry and my heartbeat ached in my ears. I don’t know if I was old enough yet to have the words “Don’t fuck it up” in my lexicon, but I very much had the feeling. As predicted, I didn’t stay cool, and it all came tumbling, dripping, cascading out of me. A truth purge.
The doctor’s wide-eyed look, which I construed as disbelief, was quickly replaced by a slap of fear. She wasn’t looking at me agog because of what I’d told her, but because my mother (who had been listening outside the door) had burst into the room. She seethed as she yanked me from the exam table and dragged me out into the hallway. The pediatrician followed us into the hall, but no farther, and I craned my neck to look back. I implored her with my eyes to do something. But she didn’t. She only stared at me with an expression of gaunt helplessness.
My mother flung me into the car, and I awaited sentencing for my transgression with the sincere hope that it would be something akin to her driving the car off the bridge into the frigid water below, killing us both. But she kept her anger in her jaw, clenched like a bear trap, until she could get home to release it.
I swallowed mine.
A DECADE OR SO LATER, before any doctor doubted my pain, I doubted it myself, because that’s what my mother had taught me to do. I was nineteen years old and didn’t want to be sick. It wasn’t even a question of want—I simply couldn’t be sick. I had to go to class. I was on a massive scholarship that was contingent on my academic success. I had friends to see, dances to do, a spectacular city within reach. I had so much life to live, and for the first time ever I was completely free of all that had hurt me and stolen my joy. That morning in the bathroom, as pain ripped through me like a bullet and I saw my mother’s face on my own, I tried harder than ever to talk myself out of being sick.
By the time I ended up in the hospital, I was inconsolable. Did I not want to be at Sarah Lawrence badly enough? Was I really so weak-willed and pathetic that I was getting worked up over a silly, stupid little ailment? I was becoming delirious from not eating, and I hadn’t been drinking much of anything, either. The pain in my belly had become all-consuming.
I sat slumped in a chair in the intake room. At first the nurse in triage seemed doubtful of my pain, because I was so subdued from all the crying that I just stared, glassy-eyed, at the wall. As she took my blood pressure, she seemed dubious. I had reported that the reason for my visit was a frightening amount of abdominal pain, and I guess she expected me to be screaming and rolling around on the floor. But the pain had exhausted me to the point of surrender. When I was taken back to a curtained cubicle, I dragged my book bag with me. Despite the fact that I could hardly keep my eyes open and would occasionally burst into tears, I was consumed by the reality that the following week I had a test to pass in my Russian class. Russian, as it turned out, was a difficult language to learn. Every second of studying counted, and since I’d been sick all week, I’d missed class as well as my tutoring session. I frantically tried to conjugate verbs, partially out of fear, but also as a method of distraction.
Aside from that morning, when I’d woken up and taken the notably apocalyptic shower, the only other time I’d experienced something that required me to go to the hospital in Bronxville had occurred about six months earlier, when a dance injury had ended in an ankle splint. That visit had been uneventful, relatively speaking. It wasn’t until I landed there in a weepy haze of terror that I actually took stock of the place. The emergency room was considerably more attractive than it needed to be. I was used to small-town hospitals that were a little on the dingy side and devoid of aesthetic frills.
Though it was a rather handsome hospital, once I got into the nurse’s station to have my vitals taken, I was no longer paying attention to the decor. That was when they first asked me to rate my pain on a scale of 1–10. It was hardly my first encounter with the traditional pain scale, but someth
ing about that moment—and the many that would follow in the next five years—struck me as being somehow illogical.
Considering how sick I was, it wasn’t the time to get hung up on semantics, yet I was—to the point of being almost indignant. It wasn’t the nurse’s fault; nor would it be the fault of the doctor who would ask me again a few hours later. And yet I was right to question the efficacy of a numerical pain scale that attempted to quantify an entirely subjective experience.
Doctors in emergency rooms don’t have much investment in a patient’s well-being. First of all, they don’t have the time. Second, they have to maintain some professional detachment, or else they wouldn’t make it through a single shift. The pain scale doesn’t call on them to empathize with a patient, by attempting to understand their experience of pain, and supposedly, that makes it a good clinical tool. But even if it’s a good tool for clinicians, it’s not a good tool for patients.
The pain scale has many limitations. It’s only concerned with the intensity of the pain, not the duration, for example, and it doesn’t leave room for descriptions that provide essential information, such as “sharp,” “dull,” or “stabbing.” These adjectives, though not reflected by the 1–10 labels, can actually be very helpful in creating a diagnostic portrait, because certain types of injury or infection can inflict certain types of pain.
In June 2005, Harper’s ran a beautiful piece about the pain scale exploring its similarities to wind: “Wind, like pain, is difficult to capture,” wrote the author, Eula Biss. “The poor windsock is always striving, and always falling short.” Biss then eloquently explained that sailors eventually came up with a system to describe wind that consisted not just of a standardized numerical scale, but also names and categories for wind according to how it felt. It’s called the Beaufort scale: “A force 2 wind on the Beaufort scale, for example, is a ‘Light Breeze’ moving between four and seven miles per hour,” Biss wrote. “On land, it is specified as ‘wind felt on face; leaves rustle; ordinary vanes moved by wind.’”
How would we describe a 2 on the pain scale? The twinge of a mosquito bite? An itch you mistakenly scratched with a too-sharp fingernail? Describing a subtle pain is generally more difficult than describing an all-consuming one. On the other end of that spectrum is the 10: the worst pain you can imagine.
The problem has always intrigued me, because I like to think I’m a fairly creative person. I’m sure I could imagine some pretty extreme situations in which I would feel immense pain. I have questions, though: Is a 10 meant to be a pain that would kill me? If that’s the case, then how do you really measure the difference between a 9 and a 10? Are we physiologically capable of surviving a sustained 6 for a longer time than we could endure a brief 8?
There is another commonly used scale. It has cartoon faces wearing expressions that range from Kurt Vonnegut’s “Everything is beautiful and nothing hurts!” to Leslie Knope’s “Everything hurts and I’m dying.” It was designed for children, and yet it’s in about every doctor’s office I’ve ever been in. None of which, over the past five years, have been pediatrician’s offices.
But though it might be simpler, it’s not necessarily any better than the numerical scale, at least in part because it confuses its intended audience: children are arguably even less able to separate physical from emotional pain than adults. In her Harper’s piece, Biss explains that if you show the cartoon-face scale to a child who is scared, but not in pain, the child may still identify with the crying-pain face—the child misses the subtlety of the questions being asked.
But it’s not only children who conflate physical and emotional pain. When I stared at that pain scale in the triage room, crying and scared myself, I certainly didn’t identify with the faces that were just like “meh” about their pain. I was in pain, I was scared, and I was crying. Those three simultaneous realities didn’t necessarily feel independent of each other.
Maybe kids have the right idea, though: If my pain is enough to make me afraid, shouldn’t that stand to bump it up from, say, an I’m-coping-okay 4 to an I’m-really-not-functioning 5?
Later, writhing on a scratchy gurney, I perseverated on my answers to the pain-scale question because the nurse had seemed suspicious of me. Had I failed the test? Given the wrong answer? Should I have rounded down? Was my mother right to instill in me a tendency to play down my pain so that I wouldn’t inconvenience other people? Was that what the nurses and doctors expected me to do? Was that what I had expected myself to do?
It felt strange to consider, as I lay there gray-faced looking up at a slightly less gray ceiling, that I should have lied. Yet I felt guilty, too, because the more I thought about it, the more I second-guessed my interpretation of a 6. My mind spun, trying to reason out how I’d arrived at an answer. The pain was bad enough that I couldn’t ignore it, which made it definitely higher than a 4 or 5. It had been more painful a week ago, back when it had started—but then again, maybe I’d just grown accustomed to it. I couldn’t tell.
What did the nurse think a 6 was? What would the doctor think that a 6 should be? Tears of frustration came. What was the point of this pain scale if they weren’t going to believe me anyway?
By the time the doctor came in to examine me, I was even more exhausted than when I’d arrived. I was aware that I was still crying, and worried that while crying I couldn’t possibly present my situation rationally. The doctor seemed completely unsurprised by my distress. I was a Sarah Lawrence girl—historically what you might call “bright and wound tight.” He assumed that my issue was of a sexual nature, and it was only this assumption that managed to rouse me from my stupor.
Little did he know at that point that it couldn’t possibly have had anything whatsoever to do with sex, because I was a virgin—a fact that I was somewhat embarrassed to admit. Still, I didn’t want there to be any confusion, so I was firm in my assertion that he’d better come up with another diagnosis, because unless I was a modern-day biblical parable, there was no way I was pregnant. Nor was my body consumed by syphilis or any other sexually transmitted disease.
I’ll admit that at nineteen, I didn’t know much about sex, but there was one thing I did know: I wasn’t having any.
He also seemed uncomfortable, which made me feel worse. I was suddenly flooded by memories of being warned not to be “difficult” as a child. I stopped talking after several futile attempts to explain, deciding maybe it would be easier if I didn’t say anything at all. I was discharged without so much as a CT scan, prescribed a hefty dose of antibiotics, and encouraged to drink my weight in cranberry juice.
I spent the following week in bed, alternately crying and dry-heaving. I missed all of my classes (including the one where my fellow students took that Russian test). Instead, I made my way through Barbra Streisand’s entire filmography.
By the time the weekend came, having not had anything to eat but saltines and cranberry juice, I went to the hospital a second time. My pain remained unchanged, and the antibiotics had done little, aside from giving me diarrhea (which seemed entirely unfair, given how weak I had been to begin with). I saw a different doctor the second time around. He, unlike the doctor before him, didn’t balk at my tears, which were now a constant undercurrent rather than an occasional punctuation in the conversation. I’d started crying on Wednesday or so, and here it was Saturday and I hadn’t stopped.
“When did you realize it was this bad?” the doctor asked me, his eyes kind but also looking back and forth rapidly between me and Rebecca, who had come along. I think she was as horrified by the scene as he was, if not more so.
“All I’ve done for a week is watch Barbra Streisand movies,” I sobbed, not knowing what else to say. It was the truth, after all. I hadn’t slept or eaten or gone to class—I’d been curled up in my bed with a pillow between my knees, watching The Mirror Has Two Faces, and wishing for death.
“That is serious,” the doctor said, making a note in his chart. Having looked at my medical records since, I assure you
that he did not write down, “Prince of Tides–induced sobbing” under my problem list. He just noted that I was clearly very upset, Babs notwithstanding.
Finally, I had the gamut of imaging tests, plus another liter or two of IV fluids, and then I fell into an exhausted half-sleep. I was motionless beneath the covers, my eyes tightly closed, as though I were rehearsing for my own death, when I felt the doctor’s presence in the room. He sat down at the edge of the gurney, near my feet. It reminded me of how sometimes when I was a child, my father used to come into my bedroom after I’d gone to bed, not to tuck me in, per se, but to sit at the foot of the bed for a few minutes. Sometimes I would hear him making his way down the hallway, and I’d try to position my feet so that he’d end up sitting on them. He wouldn’t hug me, he wouldn’t kiss me good night. But for a few seconds I would feel the weight of him sitting on my feet, and I’d know he was real.
Even if I hadn’t been too exhausted to move, I wouldn’t have been so brazen as to stick my feet under the butt of an ER doctor I’d only just met. I felt myself begin to whimper again, the vestiges of my week-long cry-fest. He explained, first, that he had a daughter my age, and since he’d ascertained that I was only in New York for college, he wondered aloud if it would help to call my family back home. I told him no, there wasn’t anyone to call. I didn’t have the energy to explain the entire story to him, so I spat out the words “emancipated minor” and let him interpret it however he wanted. He did tense up a bit, as though he expected me to morph into some kind of shank-carrying delinquent who was there to steal drugs and wreak havoc, like a character in an Emmy-winning episode of ER.