On Saying: Finding the Language to Describe Chronic Pain

1. I’ve always been wary of oversharing with my husband. I often tell my friends my news before I tell him. I base this on something I read a long time ago that stuck in me, something about keeping boundaries with the people you love so as not to overrun their love with too much knowing, to keep the relationship exciting—some Esther Perel shit that I can’t actually source in her book. (I have that book at my bedside, but let’s be real; I never actually read it. My husband did and I asked him to summarize.) Anyway, I tweaked it in some weird way in my mind to mean never tell your partner about your life. When my doctor tells me about the endometriosis, I don’t tell my husband for a few days. A weekend passes and at the end of it I tell him on the couch on Sunday night, and he leaps up—“WHY DIDN’T YOU TELL ME?”—alarmed and gripping my hands. I stand awkwardly with him and say, “I’m telling you now.” But it’s the wrong time, I see, and I’ve been somehow disloyal by not doing it in time. “Who else knows?” he asks; then, shaking his head before I can answer: “You never tell me anything.” 2. But I don’t know how to tell. Or how to tell him what I think he wants to know, at least—what I think my friends and my family want to know—that I am cured, am on the road to being better, or, at the very least, have good information about my condition. What to say when I do not? “When doctors are confronted with a seemingly random or scattered collection of symptoms that cannot be interpreted with certainty, the pronouncement that there is no origin attempts to seal off, to quarantine a disease as ideolect and aberration,” writes Eleni Stecopoulos in Visceral Poetics, her hybrid book of literary criticism and what she calls “autoethnography” of her own health crisis. Stecopoulos describes the way such “sealing off” uses language to delegitimize a disease that is not understood. In a similar way, my doctor says I have a thing but it is not certain. She is not sure and not planning to do the surgery yet to check. I am not to get worked up about it, but come in if there is another crisis of pain. “This is just a text / Meaning nothing is recoverable / Except your recovery,” writes poet Laynie Browne. The text of language I use for other people can hold nothing if it’s not my recovery. When my condition is uncertain or the next steps for treatment are unclear, I withhold the text, awaiting a narrative that is clear. “Is this genetic?” I ask my doctor, ever cautious of my family line, “or is it caused by environmental stuff?” My doctor tells me no, not at all, that cysts happen to some people and usually reabsorb, but don’t in my case. That endometriosis crops up in some people and there is no answer to why. She cautions me not to Google it because “there are tons of kooky, unfounded theories about where endometriosis originates, and I don’t want you to get confused.” But I have already made this mistake, reading about genetically modified foods and pesticides and their effects on hormones for hours, making lists of which food I absolutely must eat organic. “Please don’t believe the internet freaks,” my doctor says. My freak, my aberration, the disc pulling on the threads of my ovary on the ultrasound screen—no origin but itself, grown out mutant on its own. 3. The word “ideophatic” describes a condition whose cause is unknown or, according to Webster’s, “arising spontaneously from an obscure or unknown cause,” and “peculiar to the individual.” Peculiar, with its implication of privacy from pecularias of private property: my condition as my private property, and any sharing of it peculiar, too—odd. Hold onto it, keep it. Keep it to yourself. “The diagnosis of ‘ideopathic’ attempts to contain a challenge posed to medical knowledge, effectively rendering the condition meaningless and isolating the patient,” Stecopoulos goes on. “I think Alex’s mom just loves getting diagnoses,” Lisa says. “I’m not sure what she actually, really has, though.” Lisa is warm and kind and says “I’m sorry” several times when I tell her about my pain, but I squirm back from her questions. I change the subject and sip my beer because what if I, too, “have” nothing? 4. Without an elevator pitch of a story, there is never enough time to fully explain. There is never a right moment to tell someone about your illness: not over beers or breakfast by the BART, not at the march, not at work, not during sex. It’s too peculiar. This leaves me very little time. Then, when to tell? What to tell? What do I owe people, to tell? There is also my friend Kelin, who has been chronically ill much longer than I have, and she will tell anyone, anywhere. She moves through the world with the armor of an extroverted sick person, telling people right away what she needs and can and can’t do. Because she has to, because she will be debilitatingly sick if people assume she can do, eat, see the same way they do. “I was made to believe there’s something wrong with me—sorry this noise is all my honesty,” Kelin writes in one of my favorite lines from her first book. I know it’s exhausting for her (“I wish I could just eat and work like everyone else,” she texts me from an artist residency), but Kelin also seems used to it, used to being peculiar but as in “strange,” recognizably odd in public—not peculiar as in privately held. I watch her gently remind people not to pet her service dog. Another mother makes Kelin food that could stop her breathing, and Kelin has a polite, practiced speech. She makes an honest, forthright noise, even in a constellation of diagnoses that are overlapping and sometimes difficult to parse or understand as she lists them off for you. But she proceeds: Kelin is able to inhabit the weird part of peculiar, the noisy part, without the part that means put that away. 5. A friend posts on Facebook that she had a cyst removed from her ovary that was the size of a grapefruit, and mostly I am resentful. I mean, it’s out of her now. She posts that her doctor said the cyst was “wearing my ovary like a hat.” Hers is gone, and so her post is easy to understand—and funny—but my cysts cling to me, privately held beside my lymph nodes so I can never tell what is swelling when my hips twitch and throb. She knew the problem and could fix it: if only I could be so triumphantly cleared out. [millions_ad] 6. When I meet Tim at a conference, we start talking right away about Dodie Bellamy’s essay “When the Sick Rule the World,” and I hand him the copy of her book I’ve been keeping in my bag. He flips through it and talks to me at the same time, something I’ve never been able to manage myself, my attention always won by the text. “What drew you to this book?” he asks. I wonder whether to tell him about my own pain, whether that will make me too confessional to seem smart, whether it will be out of place at the artist conference where we find ourselves. Instead I say something vague about being interested in pain and embodiment, and that’s the first time he looks me right in the eyes. “I’ve got this book on hurt that I wrote,” he says, and then looks quickly back down at the splintery deck which will later stab both of our heels. “It’s a good thing to read alone.” I have to ask Tim three times where I can get a copy of the book, which I understand—I too have trouble believing anyone wants to know about physical pain, and also in this scene where you are careful not to push your own work too directly. Finally, a month later, he sends me How It Hurts in a plain brown envelope. In the book, Tim pulls from texts about naming and assessing pain to create a patchwork narrative that is both citational and tender, as in the section “NOTE”: It should be noted. (When) When it hurts, “it” can be a specific location.                                                                          My chest hurts.       It can be a specific activity.                                                                               Breathing hurts.       But even in cases that are                                                                                  acute / local, “it” remains                                                                                                     chronic / generalized: At my chest, it hurts. When I breathe, it hurts. And so the peculiar hurt remains the subject of the verb, and the body the object. The hurt so peculiar that it remains its own “it.” It is isolated at once from the body and pulled out from the body to explain itself, as if the body cannot explain the it and so rejects it, jettisons it in order to observe it from the outside. “NOTE” goes on: And then it disappears and tends – even if not intending – to separate us and lay blame: My chest is hurting me. The very same “it” that comes and goes without saying, that was before and still is worth mentioning. “I still want you to tell me what’s going on with your body,” my friend Cailey says, “even if you don’t know.” And so it still is “worth mentioning,” if only because the “it” continues forward in time. “But why,” I ask her, “when there’s nothing certain to say?” “Because it’s what’s going on with you.” She smiles. My continuation, then (“going on”) is what I am supposed to communicate, even if I have no words to explain the experience itself. “Well,” I say, “usually it hurts in the middle of my cycle and while I’m bleeding, but sometimes cysts burst other random times.” I pause, glance at her and wonder if this description is enough. Am I pathetic enough? “Sometimes that means I have to cancel things and lie down.” I shrug and fold myself over in a vague gesture towards how it feels. (Is this what she wants?) “When that happens I can’t read or even watch TV, so I just take pain meds and cry.” “If the body finds relief in lamentations, let it;” writes the classic essayist Michel de Montaigne of his own ailments, “if it wants to toss about, let it writhe and contort as much as it likes; if the body believes that some of the pain can be driven off as vapor by forcing out our cries—or if doing so distracts us from the anguish, as some doctors say it helps pregnant women in their deliveries—just let it shout out.” A shouting out that doesn’t have to reach an end, doesn’t have to explain itself. “Do not order the sound to come but allow it to do so,” Montaigne goes on. And so I hear again a sense of allowing, continuing, flow—a sense of sound or words that are more indications of ongoing experience and aliveness than they are determined language. 7. I guess it was a mistake thinking I could backpack California’s isolated Lost Coast in the middle of my cycle, near enough to that dread time when my cysts most often burst. I hadn’t had one rupture in a while and I was feeling positive, but two days in we heaved our packs back on for a long pebbly beach stretch, and the thread of pain started to creep in from my hip. I tried to tough it out for a few minutes, but soon my husband tuned in to what was happening. “Leora is having some uterine pain,” he announced to the hushed group. I hunched further under my backpack and slowed to a shuffle as the pain stabbed up toward my belly and down through my thighs. How nice, I thought, that he knows what’s happening. Reaching a flat spot, I rolled my pack off and curled to the ground. I whispered an apology to the group that no one could hear, and above me my husband explained to Emily and Jarah that this might take a few minutes or a few hours, that it was hard to know but it would end eventually. As I focused my attention on breathing deeply—the doctors have taught me that holding breath intensifies pain—I could faintly hear his voice and their empathic murmurs back, feel the pile of jackets he threw over me for a blanket, sense him growing taut and decisive the way he does in a crisis. As I breathed out, I began to whimper the soft sounds I make only when in that specific kind of cyst pain. They are something like oh-woah-oh-woah, and I watched the golden grasses near my face twitch slightly with my out-breath. Oh-woah-woah-woah, I went, followed by the hee on the sharp intake of breath, the language that means nothing but is the only kind for that time. 8. “Perhaps learning to speak is realizing, little by little, that we can say nothing about anything,” writes Valeria Luiselli in “Stuttering Cities,” her essay on her own relationship to language, and I sense this also in these moments of total submission to pain. “But even for those whose ability to cry out remains intact,” Simone Weil writes, “this cry almost never expresses itself inside or out in words that can be followed.” There is really nothing much to be followed, much as I might try here, or for the sake of people who care to come along. And I did then—tried to explain, once I felt better, the experience and how it converts me into only throbbing abdomen. We lit a fire and started dinner, and I held a mug of hot water to my middle as it slowly began to pull back from its distended state. And my friends listened as benevolently as a person can listen to something so physical that isn’t their own, something that sounds bad but doesn’t really come across. “Whatever pain achieves, it achieves it in part through its unsharability,” writes Elaine Scarry in her iconic text The Body in Pain, “and it ensures this unsharability through its resistance to language.” “You seem like a different person now,” Emily said, meaning of course that I seemed better, was smiling, sitting up, getting ready to eat my bowl of reconstituted refried beans and instant rice. But also: that I was different as I came back to the personhood of attempting to explain, away from the speech-surpassing experience of body. “Language isn’t transcendent,” writes Wayne Koestenbaum in Humiliation. “Every sentence, however stuffed and upholstered with confident maturity, attests to that earlier, infantile time when we couldn’t master words.” “You don’t have to explain, though,” Emily says, and winces. “We could hear you moaning.” 9. Tim’s “NOTE,” again:         The very same “it” that comes and goes without saying, that was before and still is worth mentioning. And this time it is not just the pain, but the language—that it that comes and goes, that mentions and masters poorly. Mastering is not actually, then, what we expect it to do. (“We’re just glad you’re back,” Jarah says as we eat and hands me a hot chocolate packet which I slap again my thigh to loosen the clumped powder. I smile.)         “it” that comes and goes without saying The pain does not “say” in language. But what we can expect of pain language is more about remaining, about indicating to another that we are still alive. It signals that we haven’t yet gone under enough to stop saying for good. Image: Flickr/Care_SMC