Pain Beyond Words

A poet’s quest to capture her excruciating illness.

In the predictable universe of the illness memoir, doctors save by diagnosis and fail by misdiagnosis, alleviate symptoms or unintentionally increase them, order too many tests or refuse to test enough. Patients are the authors of these accounts, but physicians are the heroes and villains whose prescriptions (or lack thereof) drive the stereotypical narratives of salvation or sabotage. Sarah Manguso, winner of the Rome Prize and author of two books of poetry, cuts through these conventions in Two Kinds of Decay, a prose chronicle of her harrowing battle with a rare and incurable autoimmune blood disorder. Manguso is the diagnostician here, sizing up the usual doctor-patient drama in the terms she knows best. She suggests that the inevitably conflicted relationship—fraught with tensions and distorted projections—arises from the slippery nature of language, in particular the language used to describe the necessarily subjective experience of bodily pain.

While a 21-year-old junior at Harvard, Manguso was beset by a perplexing constellation of symptoms: numbness in her hands and feet, feebleness, difficulty breathing. She was diagnosed with chronic idiopathic demyelinating polyradiculoneuropathy—a disease in which rogue antibodies present in one’s blood plasma attack the myelin sheath, the protective and connective covering of one’s nerves. For four years, Manguso suffered numerous episodes of escalating paralysis that could be reversed only through an arduous process called apherisis:Her veins were drained of the offending plasma and infused with new. (Left untreated, the disease progresses to the diaphragm, leading to suffocation and eventual death.)

Two Kinds of Decay recounts her terrifying ordeal in a series of brief, elliptical vignettes composed of sentences as spare as they are unsparing. Though the overall arc of the story is a conventional one, moving from illness to wellness (Manguso’s disease eventually went into remission), the book is less a sustained narrative than a collection of assorted memories—a reflection, perhaps, of the way the mind records trauma. “There are only a few things to remember now,” Manguso writes, “and the lost things are absolutely, comfortingly gone.”

Manguso pushes beyond the familiar confrontation between doctor and patient to explore the linguistic confusion at the heart of the power struggle. The root conflict is over whose version of events will be the dominant narrative. When Manguso reports “a spot of numbness on her abdomen” to her doctor, she is informed that her symptom is clinically impossible, since her disease is characterized by numbness not of the abdomen but of the extremities. She is told she must have indigestion (“gastric unrest”) and is treated with an antacid. How it is that she had mistaken indigestion for insensateness is also tied up with a tidy explanation: “[I]t was declared that since I was used to reporting all symptoms as numbness, I was feeling heartburn and reporting it as numbness.” Channeling the emphatic voice of the doctors who discount a sensation she knows to be real, Manguso vents a writer’s frustration at having her words for her somatic reality dismissed.

This incident exposes the conundrum at the core of nearly every memoir of illness: Pain is a subjective state that can be understood only from the inside. Its symptoms are unobservable—and thus essentially unknowable—to all but the person enduring them. The absolute interiority of pain explains, at least in part, why it is such a difficult state to convey, a fact lamented by many writers—especially those, like Alphonse Daudet or Virginia Woolf, who dealt with illness themselves. “Are words actually any use to describe what pain (or passion, for that matter) really feels like?” asks Daudet, who suffered from syphilis. “Words only come when everything is over, when things have calmed down. They refer only to memory, and are either powerless or untruthful.”

If the proliferation of illness memoirs is any indication, writers are not cowed by the challenge of trying to capture what is, by definition, endlessly elusive. Many approach the topic through the use of metaphor and, perhaps not surprisingly, reach for a clichéd stock of them—pain as electricity, pain as searing flames, pain as a vise. Some strain, with success, against the well-worn repertoire: Lucy Grealy’s Autobiography of a Face finds a resonant analogue to physical pain in the agony of shame and humiliation. And Jean Stafford’s 1947 short story “The Interior Castle” is perhaps the classic example. Based on Stafford’s experience of a skull fracture sustained when her then-husband-to-be Robert Lowell crashed his car into a wall, it is a metaphoric evocation of the agonizing, isolating quest to convey and contain precisely the pain the sufferer also wants to escape.

Manguso’s own solution to the problem of communication is resolutely not metaphorical. She tethers her descriptions to the brutal details of her ravaged body, avoiding extended ruminations on pain and illness. The bald facts—of IVs, 14-gauge needles, chest catheters, blown veins—adequately convey the horror of what she went through. “My three temporary central lines had been precarious and depended on my staying in bed, supine, because if I moved too much, they would fall out and I would bleed. They went in pretty close to my heart, so I wouldn’t bleed long,” she writes, deadpan in the face of the dramatic. Manguso involves her readers in her efforts to communicate: “I was very slowly infused with several liters of fluid”—plasma—”that was colder than the rest of my body,” she writes, “I need to describe that feeling. I want to write a metaphor that will make a reader stop reading for a moment and think, Now I understand how cold it felt. But I’m just going to say it felt like liquid, thirty degrees colder than my body, being infused slowly but directly into my heart, for four hours.” On the rare occasions she avails herself of a metaphor, she avoids the usual suspects, preferring a simple, unexpected analogy: The waste bag of blood plasma “felt warm, like a bag of soup.”

For a poet, Manguso’s approach is a curiously prosaic one. But she seems to realize that less is more in this context. The specifics of her very rare illness—only six people on the East Coast qualified for a drug study of it—are so extreme and alarmingly bizarre that it is arguably more meaningful to evoke them with an accurate depiction than to try to conjure feeling through a metaphor. All metaphors intrude on the immediacy of the anguish—no one feels pain by way of comparison—and they can’t help but distance a reader. A precise rendering has the potential to trigger a more visceral reaction, whether empathy or revulsion, than any analogy could.

Manguso risks aliening readers in the process—which is, after all, a reminder that pain is ultimately incommunicable. She frequently employs clinical language, writing of “necrotic tissue,” “parasthetic skin,” “proprioception.” This is her description of the blood-cleansing: “In the hematological context, apheresis is the process of separating blood into its components (red cells, white cells, platelets, plasma), removing the component that’s sick, and reinfusing the rest of it, along with a suitable replacement for the sick part.” In The Year of Magical Thinking, Joan Didion, too, uses the exclusionary idiom of the medical profession, sometimes without accompanying explanation, to put readers in the position of the civilian in the medical world who, as Didion writes of herself, is “unable to locate the grammar.” But Manguso, a patient rather than a caretaker, seems less intent on re-creating the disorientating effects of medical vernacular than on calling attention to the strenuous task of finding the most exact terminology available. In a way, the accretion of clinical terms becomes a poetics all its own.

This particular linguistic choice is driven above all by Manguso’s desperate need to communicate her symptoms. Though any writer feels the urgency of expression, there is nothing like the pressure of conveying a complaint that, if let untreated, will have dire consequences. “[I]f I went eleven days without having my blood cleaned, my peripheral neurons would start sustaining major damage,” Manguso notes. It is as though she has learned to talk to her doctors on—indeed with—their own anti-metaphorical, plainspoken, clinical terms. When numbness is too broad a word, opening up a host of interpretive possibilities, then only the most specific, rigorous designations for her symptoms will make the doctors (and, 11 years later, her readers) understand.

Even then, it is a fight, not least because the symptoms of myelin repairing itself can mimic the symptoms of myelin being stripped away. How to counter her neurologist’s optimistic reading of her symptoms with her own conviction that weakness and stumbling and shortness of breath felt like no “bump in the road” to recovery? If ever a patient’s authority might carry weight and compel doctors to listen very closely, you would think it would be when dealing with a disease of such rarity. Yet the neurologist shrugs off her worry, and Manguso ends up in intensive care not once but several times.

Still, given the subjective nature of pain, it is hard to vilify doctors for calling the symptoms as they see them, for giving the ailment a name—a diagnosis—and thus creating a reality that can be treated. Patients depend on them to do that. At the same time, they cede total power to their physicians at their peril. One writer’s effort to wrest back some word-wielding authority is a reminder of how tangled the life-saving lines between suffering bodies and white-coated experts can become. For a doctor, the correct expression of pain determines treatment; for a writer, it determines nothing less than the truth.