Sarah Manguso's Two Kinds of Decay.

Reading between the lines.
July 7 2008 6:39 AM

Pain Beyond Words

A poet's quest to capture her excruciating illness.

The Two Kinds of Decay

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.)

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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.