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.)


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.



Crying Rape

False rape accusations exist, and they are a serious problem.

Scotland Is Just the Beginning. Expect More Political Earthquakes in Europe.

I Bought the Huge iPhone. I’m Already Thinking of Returning It.

The Music Industry Is Ignoring Some of the Best Black Women Singing R&B

How Will You Carry Around Your Huge New iPhone? Apple Pants!

Medical Examiner

The Most Terrifying Thing About Ebola 

The disease threatens humanity by preying on humanity.


The Other Huxtable Effect

Thirty years ago, The Cosby Show gave us one of TV’s great feminists.

Lifetime Didn’t Find the Steubenville Rape Case Dramatic Enough. So They Added a Little Self-Immolation.

No, New York Times, Shonda Rhimes Is Not an “Angry Black Woman” 

Brow Beat
Sept. 19 2014 1:39 PM Shonda Rhimes Is Not an “Angry Black Woman,” New York Times. Neither Are Her Characters.
Sept. 19 2014 1:11 PM An Up-Close Look at the U.S.–Mexico Border
  News & Politics
Sept. 19 2014 9:15 PM Chris Christie, Better Than Ever
Sept. 19 2014 6:35 PM Pabst Blue Ribbon is Being Sold to the Russians, Was So Over Anyway
Inside Higher Ed
Sept. 19 2014 1:34 PM Empty Seats, Fewer Donors? College football isn’t attracting the audience it used to.
  Double X
The XX Factor
Sept. 19 2014 4:58 PM Steubenville Gets the Lifetime Treatment (And a Cheerleader Erupts Into Flames)
  Slate Plus
Slate Picks
Sept. 19 2014 12:00 PM What Happened at Slate This Week? The Slatest editor tells us to read well-informed skepticism, media criticism, and more.
Brow Beat
Sept. 19 2014 4:48 PM You Should Be Listening to Sbtrkt
Future Tense
Sept. 19 2014 6:31 PM The One Big Problem With the Enormous New iPhone
  Health & Science
Medical Examiner
Sept. 19 2014 5:09 PM Did America Get Fat by Drinking Diet Soda?   A high-profile study points the finger at artificial sweeteners.
Sports Nut
Sept. 18 2014 11:42 AM Grandmaster Clash One of the most amazing feats in chess history just happened, and no one noticed.