Edited by Barry Kitterman | Andrea Spofford | Amy Wright
First thing in the morning, I dry brush my body, run a bristle brush over each under-functioning limb. It’s supposed to stimulate my lymphatic system; lymph, without the dry-brushing assist, is a slow-moving fluid. I’m supposed to feel energized.
Then I shower, wash my hair with oil and lemon juice, linger too long in the hot water.
For breakfast, I pour kefir (probiotics regulate the gut, which regulates more than most scientists know, my nutritionist promises) into an all-metal to-go mug, grate some fresh ginger (anti-inflammatory) onto the kefir, drizzle on some honey, swallow a fish oil pill (omega-3s and anti-inflammation, and, yes, there is increasing evidence that there’s a connection between fish oil and cancer, but cancer’s not my problem right now, and there’s only so much I can worry about.)
It could all just be a matter of time. Or a matter of finding the right doctor, the right diagnosis.
Something was wrong with me. I was in pain, that’s all I knew.
I ran cross-country and track during high school and college and was used to running injuries, so at the first onset of my pain, I was on Google, skimming and then scouring all of my online reliables. I typed “glute pain running” and “hip pain running” and “butt glute pain running.” I wanted a name and a solution, but I also wanted people who had had this same experience, who had stories, thoughts and feelings about it, people whose experiences would validate this pain that my doctors could not define. My object proved elusive, but my near-misses kept me typing, searching, clicking. My next set of search terms could be the right phrasing, the right combination of terms to catalyze the perfect search engine logarithm, and in one click I would be hyperlinked to my compatriot, the one who would understand me and heal me, the one who had been there all along, silently bidding me to get the wording right.
After my visits to my college’s athletic trainer, after my team of physical therapists, after my expensive sports orthopedist all turned up a slew of negative diagnoses, after their traditional tests and treatments failed, and after the specialists and their invasive procedures failed, I tried every homeopathic method I could find. I sat on a pink lacrosse ball. I ate no gluten or dairy because these were inflammatory foods. I cut out caffeine, and I drank cherry juice and homemade ginger water every day. I performed a 40 minute P.T. routine called flossing the needle in the small open space between my bed and desk in my cramped Upper West Side dorm room.
I day-dreamt about diagnoses when I was sardined on the Subway, late for another cross-town appointment. Sacral stress fracture, I would fantasize a doctor announcing, 6 weeks on crutches, 2 in a boot, gradually ease back into weight-bearing activity, and then, better. My MRI scripts would read r/o sacroiliitis, r/o sacral sfx, r/o herniated L3-4 disc. The r/o stood for rule out, and every time I received a radiologist’s negative report, I told myself the field of possibilities was narrowing: there had to be an end-point, that one diagnosis left standing.
For a few months, my rheumatologist—the newest addition to my medical team—felt confident that I had Ankylosing Spondylitis, an autoimmune disease that would result in my spine fusing. When I wikipedia-ed the potential diagnosis, there appeared a medieval-looking pencil sketch of a hook-shaped man with his chin permanently folded into his chest. I ordered three books about the disease, began taking fish oil vitamins, learned what nightshade vegetables were and then stopped eating them, called my mum only to cry into the phone.
Spread your arms, the rheumatologist told me, take in a big breath. She measured my wingspan, listened to my breath, told me that in a month the span would probably be reduced, my breath shallower. These changes would be strong diagnostics. What I wouldn’t do for a strong diagnostic. Ankylosing spondylitis, my eventually-negative diagnosis, was a terrifying one, but it was no less terrifying than the kind of pain that refused to make record of itself on any MRI scan, blood work or bone density scan.
Every time I told myself that the ink inserted into my wrist before I was funneled into the MRI would clot around a recognizable inflammation or tear, decipherable to the far-away radiologists who received the films of my body and translated them into words for my doctors to render to me. My college coach believed I was faking the pain—making up an injury to conceal that I was crippling under the pressure of school and athletics.
In the early 19th century, I read, with longing, medicine was based entirely on patient reports. Doctors often treated patients through the mail, with the patients describing their symptoms, and doctors mailing back instructions. Patient narratives formed the cornerstone of medicine; there was nothing else to go off of. Now, we have images and numbers, none of which marked my pain, and so my pain was left without an etiology, nudged to the psychosomatic, with only a script for pain management to show for itself.
I remember the early rounds of injections, a numbing injection to rule out piriformis syndrome, an x-ray-directed Cortisone injection to relax my sacroiliac joint; I remember the MRIs and sports massages and the doctor’s waiting rooms and the fish tanks and the bout on crutches, winter in Manhattan and the mile-long uphill crutch to get to campus.
Of the doctors, I remember some. Dr. Schuler was a string my father pulled, someone I was lucky to see; he was tall and white-haired, the head of a respected spinal treatment center, and I had leapfrogged the waiting list to become a new patient. At the end of every appointment, we would sit next to each other, and Dr. Schuler would retrieve a tape recorder from his white jacket’s pocket and recite, “This is Dr. Schuler with Kari Putterman on June 9th 2010,” and then he would summarize the appointment, the pain, the progress, the goals, with me nodding next to him. What should I do if I thought something he said was not right? I didn’t want to interrupt the recording, especially when he was so short on time and, as the receptionist never missed the opportunity to say, squeezing me in.
I don’t remember the pain management doctor; most of my experiences there are swallowed up in the defeat of opening a door labeled Chronic Pain Management. I remember looking at the other chronic pain havers who were not as old and hunched or crippled as I had imagined they would be. Most of the chronic pain patients were well-dressed, normal looking. That should not have come to a surprise (but it did) because pain itself is normal. Chronic pain, especially: it affects 100 million Americans, WebMD says. But not Americans like me!, I thought. Fat Americans, maybe, old Americans, smoking Americans. But the unremarkableness of Chronic Pain waiting room occupants mocked my presumed immunity. The fact that all of these people in the waiting room were going through something similar to what I was going through made nothing easier or better.
I don’t remember his name, but I do remember that there was the doctor who was going to perform a hip laparoscopy on me (r/o labral tear) but then met me in the waiting room to tell me that I didn’t have a clear enough diagnosis to warrant surgery, and I remember interrupting, “But isn’t the only risk infection at the incision site? And isn’t that really rare?” I had done my reading! The doctor explained the need for clearer diagnostics, especially for someone so young. Especially for someone so young—they all liked to hedge with that, to use my age as a reason to hold back on a procedure, to wait and see, as if youth meant I had enough strength, time and odds in my favor and not that I was wasting unrecoverable time.
I remember Dr. Mahon, the doctor I saw the most. I mostly dreaded him: the way he never smiled with his eyes, his bored drawl, his impatience with my running aspirations (“There are other ways to be fit”). I berated myself for how often I cried in his presence. But I was also drawn to him, the way he would roll up his dress-shirt sleeves and crouch into an athletic stance before performing an “adjustment” on my hip socket. The time he, personally, brought me a peel-top cup of cranberry juice and crackers after my first injection. The terms he used for body parts and functions, ones even I had not dug out of Google. And most of all: his general impenetrability, as if underneath his brisk reserved there pulsed a network of complexity and meaning.
What I don’t remember is the pain. I know it was there. I know I couldn’t fall asleep because of it and that crossing my legs was unendurable. I know walking was difficult and my limp seemed to worsen each day. But I know the pain was there as if I had read about it. I know the pain in words only. And the word pain makes manifest language’s unbridgability. Pain: road-block, a refusal. “Pain,” nineteenth century French writer Alphonse Daudet wrote in his In the Land of Pain, his narrative account of syphilis, “is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me.” Elaine Scarry writes that pain has “no reality because it has not yet manifested itself on the visible surface of the earth,” and, thus, another’s pain can only register as “vaguely alarming yet unreal, laden with consequence yet evaporating before the mind because not available to sensory confirmation.” Pain is so impenetrably personal and so completely temporal that there is no way to convey it so that someone else, even if that someone else is my current self trying to connect to my former self, can feel it, too.
The doctors tried to break down that word, pain. Every appointment, I would fill out questionnaires. There would be a drawing of a sexless body split into lengthwise halves and shown as two side-by-side bodies, front body and back body. I was supposed to draw where my pain was and draw what kind of pain I was feeling. Squiggly lines for numb pain. Straight lines for burning pain. Dots for dull pain. Zig-zag for throbbing pain. Beneath the bodies was the 1 through 10 pain scale accompanied by globular faces. The face for 1 was a yellow smiling face and the face for 10 was a red face with its mouth wide open and tears streaming from its clamped shut eyes. The faces in between grew less yellow and more red, their eyes progressively shutting and their mouth going from smile to frown to deeper frown to wide open silent scream.
The first line of instruction on the pain scale was, “Get acquainted with it.” The chart, not the pain. Familiarize yourself before choosing. Think it through.
My acupuncturist told me to lay back and remind myself that all pain is is neural signals being sent from one nerve to another to another to my brain, which interprets these signals so that I can feel them. It’s not a thing, he said, it’s not a thing out there in the world. It’s just signals and codes and signs passed up and down, all inside your body. So living with the pain does not mean living with suffering.
I was already fatigued by always thinking of my existence as dependent on a very precise and complicated set of cellular communications and functions. Once you start thinking about everything going on inside your body, it’s hard to stop. It’s also hard to stop panicking that all of these processes are going to cease. I wanted to be back in my healthy self, the one who had no time or reason to think about what was going on inside her body.
The second line of instruction was “Mark your pain along this continuum.” This continuum was difficult for me. My whole life I’d been told that I had a high pain tolerance threshold. When I was little and doctors gave me shots, I never flinched, let alone cried. What if for me the pain was a 5, but if, for the doctor evaluating my chart the pain, the same pain would be a 7? What if, because of this disparity, I was giving him misleading information, information that would forever stymie him from understanding or healing me?
Often I felt that my mind’s interpretation of my body’s pain is just as good as any doctor’s removed interpretation of my body’s pain. Meaning just as insufficient, arbitrary and removed. The P.A. would take my forms and ferry them and me to the cold examination room; the P.A. would read and enter all of my carefully inscribed symbols—Elaine Scarry writes that to have pain is to have certainty, while to hear of another’s pain is to be fundamentally uncertain—leave the clipboard in a plastic holder nailed to the back of the door, and the doctor would arrive, read my forms, read the PA’s (to me) mysterious decoding and analysis of my responses, and say, “Describe the pain.”
I can’t tell this story with claiming: I figured it out. I began to map out a series of charts in hopes of detecting some new correlation. I graphed on my x-axes a number of factors, including weight, running mileage, stress, menstruation, diet, relationships, and I marked the fluctuations of pain on y-axis. My x-axes were the things doctors didn’t want to hear about, but the things that I would introduce anyway. I would bring up the eating disorder I had in high school or the birth control pills I used to take. I would ask if they had on their records my three stress fractures? My anemia? Anxiety? I was looking for an underlying code, for connections and narrative sense by stringing together of all the other times I had sat in a paper gown before a professional and tried to solve a problem.
I created a graph that showed the pain spiking around my period and fluctuating around changes in birth control. I was working with a female physical therapist who said it wouldn’t hurt for me to see a gynecologist.
From there it was too simple. That appointment led to what I had nearly given up on, a diagnosis. Sciatic endometriosis. Endometrial tissue thickening on my sciatic nerve. A condition that usually requires surgery but in less severe cases has been shown, at least temporarily, to respond to hormonal treatment. A prescription for a progesterone pill and six days later, I was pain-free. Zero on a scale from one to ten. Solid yellow face on the continuum. A front body and a back body unmarked by lines or dashes.
Nearly three years of chronic pain and in six days, it was gone; in eleven, I was going on my first run. So it was a narrative, after all, I told myself. It was the right marks in the right order. It wasn’t a continuum, or a squiggly-lined, halved body, but it was color-coded chart, read onto and in place of my body.
I had traced the cause of and excavated the name for the pain through an Excel-mapped narrative, but even though that narrative tracked and labeled the pain, my graph never caught and made knowable that pain. Pain was there one moment and gone the next. I expected a longer transition. I expected phantom pains, difficulty returning to the world of able, not hurting bodies. I expected a feeling of something surreal, a disembodied limbo where I acted in a healthy body but occupied a injured body’s mind.
I was reading Prozac Diary—during my time of undiagnosed pain, I was insatiable for accounts of illness and injury—the memoir that tracks Lauren Slater’s experience as one of the first, successful trial patients for Prozac; the drug, for all extensive purposes, works, but Slater describes her resulting ambivalence about entering, full-fledged, the world of the healthy: “the difficulty and compromise of cure, the grief and light of illness passing, the fear as the walls of the hospital wash away and you have before you this—this strange planet, pressing in.” Nine days after taking her first Prozac pill, Slater feels better, healthy, but at the same times she feels like the world she has known her whole life has vanished. She dwells in anxiety about its unreachability, in grief for its lost familiarity.
For me, there was no grief, anxiety or longing; there was scarcely memory or awareness of what had been. One day I was insulated in pain, and the next I was running for ten minutes, then twelve, then twenty. I was healthy, my body an afterthought and my language straightforward. I was thinking about other people, I was noticing the dogs in Central Park, I was calling my mum to ask about her life for a change. “Everyone who is born holds dual citizenship,” Susan Sontag writes, “in the kingdom of the well and the kingdom of the sick.” We use our prefered citizenship until each of us—and it happens to each of us—is “obliged, at least for a spell, to identify ourselves as citizens of that other place.” As soon as my former and preferred passport regained currency, “that other place” was, to me, just that: that other place. A vague, nameless, language-negating other place that I tried not to remember.
Author Jean Stafford tried to track pain, too; she tried to pin pain down and splay it open and get it right. She writes around and toward and at times inside of pain in “Interior Castle,” the story of Patsy’s surgery for a broken nose. Patsy’s doctor and his intern strap Patsy to the table and, as Patsy tells us, “It was as if a tangle of tiny nerves were being cut dexterously, one by one; the pain writhed spirally and came to her who was a pink bird and sat on the top of a cone. The pain was a pyramid made of a diamond; it was an intense light; it was the hottest fire, the coldest chill, the highest peak, the fastest force, the furthest reach, the newest time. It possessed nothing of her but its one infinitesimal scene: beyond the screen as thin as gossamer, the brain trembled for its life, hearing the knives hunting like wolves outside.”
I knew Jean Stafford, like Patsy, had been in a terrible car accident, that she, too, underwent facial reconstructive surgery. Her eyes would water for the rest of her life, her teeth irreparably damaged, and her face would never be the same. This shadow of lived experience flickering beneath the story drew me closer. It was like coming across a forum poster who wrote about pain that mirrored my own. Neither was a solution, but both were signs that someone was out there was writing and experiencing pain.
Stafford uses metaphor on top of metaphor, so that in her story meaning does not work in the way I aimed for when I typed terms into Google. Metaphor displaces language from reality and lets language loose into a limbo where words only correspond to words and no grounded meaning is expected. Metaphor was the opposite of my Excel graph, which was after a name and a solution. The same things the doctors and physical therapists read and searched for. If they couldn’t find that finality, they’d send you off to another, and another.
“Interior Castle” circles back to pain, tries to fix, once and for all, bodily pain with words. The story tries even though pain makes language meaningless because pain, when present, is your whole world, and who cares how well you can describe it? Stafford doesn’t describe pain head-on, but she pecks around at it, dodges in from a side-angle and ducks away again. Pain as the tip of a diamond or the newest time. What comes through was not the visceral sharpness of the pain, but the interiority that lasted long enough to describe pain, that pink bird on top of the cone, the brain trembling with life, an interiority that, just as relentless as the pain, hung tough and signaled. Sometimes I found meaning in this interiority; other times, not.
Do you remember the final scene of Titus Adronicus? The whole play we’ve watched empty revenge inspire empty revenge. Sons have been sacrificed and those sacrifices avenged by murder; Titus cuts off his hand to save his sons but, in return, receives the heads of his sons; the play ends at a banquet where Titus kills everyone and feeds the empress her own sons in a stew. Revenge, revenge, all of it pointless. At the end of the horror-strewn banquet, Lucius steps forward and, as an uninvolved party, tells the story, the true story. Aaron the Moor has been the orchestrator of all this violence and vengeance. The at-last enlightened survivors punish Aaron by sticking him in a pit. Unimplicated Lucius delivers the final decree: “Set him breast-deep in the earth, and famish him; / There let him stand, and rave, and cry for food; / If any one relieves or pities him, / For the offence he dies. This is our doom: / Some stay to see him fasten’d in the earth.”
Aaron, even buried to the neck in dirt, has just time enough for one last cry before the stage goes black, “O, why should wrath be mute, and fury dumb? / I am no baby, I, that with base prayers / I should repent the evils I have done: / Ten thousand worse than ever yet I did / Would I perform, if I might have my will; / If one good deed in all my life I did, / I do repent it from my very soul.”
The the last cries and the last image of the play belong to Aaron, and the curtains close on his silently screaming head, his buried body. A silently screaming head. The red face with the scrunched eyes and wrought mouth. The furthest reach, the newest time. The end of the continuum. Aaron. A pointlessly silently screaming head. Titus Andronicus is a tragedy, but it’s not a tragedy where the tragic figure figures it out, grasps knowledge even as he falls. We, the audience, have witnessed pain steeped in and engendering pain. The whole play hasn’t gotten us anywhere meaningful. Instead, the play has made us doubt the reason we came here in the first place. Was it to be entertained? To be awed? To learn something? Some reason we’ve forgotten?
Lucius and Titus believe that there exists a truth, out there somewhere, and it is words’ fault for getting in the way of that truth. I believed that there existed a true diagnosis, and I had to figure out the right set of words to unlock it. Titus’s mistake is believing art can serve as a salve for tragedy or as a counterweight against violence. But the play refuses truth and meaning. The final image of Aaron screaming and buried now seems the only response that makes sense in a world where nothing makes sense. After I read Dante’s Inferno in high school, I remember our English teacher asking us, “Do you think life is ultimately tragic or ultimately comic?” Maybe we discussed the question, but I only remember her final take: “How could it be anything but tragic? We all die.”
The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” Unpleasant, at its essence. But also, an experience, which is different from a sensation or a condition. A condition happens to you, but an experience is constructed, and, in order to be understood as an experience, separate and filtered through language. The clinical definition of pain is different. Clinically, pain is whatever the person says she is experiencing whenever she says she is experiencing it. But what if the patient is not sure of what she’s saying? Because pain is a language-defeating, materiality-affirming, world-shrinking harbinger of meanginglessness. Shakespeare’s soundlessly screaming head. Those years of crutching around and sitting on a pink lacrosse ball, the body in pain became not only the dominating determinant of my life and my referant frame. I knew there was still a pink bird on a cone, only I cared less and less.
And yet, patients do not die from pain, strictly speaking. In bad cases, doctors interpret pain as a reassurance, a good sign, a sign that pain has not given way to defeat, that the patient has not given up to nothingness, the other 0 on the continuum, death. Even when he’s in the pit, Aaron speaks. The pink bird atop the cone is unsnuffed. He believes in something, and even if his body is buried, his head isn’t and he still believes that his being, his existence is worth vocalizing, even if it’s not in words but in a silent scream, even if it doesn’t make sense. I had suffered, and that was supposed to entitle me to something. Wisdom? I didn’t know what. I’m still reading books, dead, fixed things, finding only traces, the dust long settled, that someone else tried and failed to make meaning of being a person, alive, right now.
When I was hopping on and off my carousel of doctors, when I was typing terms into Google and devouring links 30 search pages in, I wanted two things at once: I wanted a doctor who would feel exactly what I was feeling and a doctor who would acknowledge the existential loneliness of injury. I wanted a pain so visible that everyone could read, know and grieve it; I also wanted my limp to evaporate, wanted no one to glimpse the pink ball, wanted an entirely interior pain, legible only to me, wanted everyone to think I was healthy and young. I wanted a pain that was physically in my body and therefore, with the right tools, excisable from my body, and I wanted a pain that I constructed and reconstructed every day with my every feeling, thought, act, a pain that was one big, interior coalesced by-product of my existence. I wanted a pain that I could write about until it became meaningful, and I wanted a pain that I could tuck away and never think about again. That latter option is what I tried to do. As soon as the pain gave me reprieve, I was running away as fast as I could, determined to forget for as long as I could that night side of life, only I couldn’t. I’m trying to understand those three buried years. Trying to use language to express that other language, the body’s language, hopelessly private, a language in which communication has already failed from the start, but one that is always, always there, undeniable in substance. I’m back, healthy, and I want to put together words in the right order to ask, Is this the way it’s always going to be?
Kari Putterman lives and writes in Minneapolis, MN. She is a PhD candidate and instructor at the University of Minnesota. This piece is her first published essay.