Review | Our Story Begins: New and Selected Stories by Tobias Wolff

The Two Kinds of Decay

by Sarah Manguso

Published by FSG

192 pages, 2008






The Life Best Lived

Reviewed by Diane Leach


Sarah Manguso is a poet, and if the beautiful, terse sentences in The Two Kinds of Decay are any indication, she is a fine one. In this short, sharp memoir, Manguso describes the head cold she caught in February 1995. She was 21 years old, in college, second soprano in a choir scheduled to perform Gregorio Allegri’s “Miserere” on March 5, 1995. She managed to keep her cold in check until after the concert, where the choirmaster praised her work. She went home for spring break and began a nightmare of illness that would last for next nine years.

Sarah Manguso has chronic idiopathic demyelinating poliradiculoneuropathy. In layman’s terms, this means her immune system secretes antibodies, which travel to the peripheral neurons, eat away the protective sheath covering the nerve cells -- myelin -- then eat the cells, which sometimes recover, sometimes not. Symptoms include numbness and tingling in the extremities, paralysis, and the inability to breathe. 

The treatments are as horrible as the disease. Apheresis: the cleansing of the diseased blood, which is removed, cleaned, infused with healthy donor plasma, and reinfused into the immobile patient. The blood is colder than the body. Imagine freezing cold blood inside you. Now imagine that your symptoms will only remit for a few days, until your body pumps out more diseased blood.

Of course all these infusions caused Manguso’s veins to collapse, so a central line was inserted.  She had one for several years, dangling from her chest, impossible to hide, even after she gave her college roommate all her scoop-necked tops. 

Manguso suffered crippling, suicidal depression. At one point she asks herself whether the depression or the illness came first. It doesn’t matter: after she tells her mother she cannot continue as she is, then describes her suicide plan, she is checked into a psych ward. Nobody seems to realize that part of her crushing depression might be a side effect of the high doses of Prednisone she was taking. Nobody noticed even after she experienced complications following the removal of an ovarian cyst, which necessitated more Prednisone to protect her body.  In the emergency room they gave her three more shots of the steroid to help things along. She hallucinated, running in place, seeing herself surrounded by British Revolutionary War soldiers, there to help her body fight itself. 

Manguso tells us she is just shy of six feet tall. At one point, she weighed 110 pounds. Later, after the Prednisone kicked in, she gained weight, ballooning from the steroid, developing fat deposits in her shoulders and acne on her back. During this time, a boy she’d known from before her illness took her to bed with him. He was utterly loving and compassionate. 

Manguso's parents are there throughout, even when it is clearly unbearable for them. Because none of them can endure the idea of a wheelchair, each day that her daughter is home, Manguso’s mother hefts the dead weight of her adult child into a wooden desk chair and pushes her into the bathroom.

Manguso’s world shrinks. For years there is little but her illness, the importance of clean wounds, of dressings done in a sterile field. This time focuses her attention as nothing else.  Her favorite nurse, Tabitha, calls nail polish “enamel.” Because the albumin in the cleansed blood causes a terrible taste, Tabitha always brings a bag of candies, fishing out enough wintergreen ones to last Manguso the afternoon. She  “manipulated the hell out of that apheresis machine.” There was the incompetent nurse, who had to be reminded, daily, to keep baby powder away from Manguso’s lines, where it could enter her chest and kill her. There were unsympathetic doctors, weepy doctors, and the neurologist who finally made the correct diagnosis. 

Though Manguso claims not to recall all of her illness, she does know that after “the fourth or fifth hospitalization, I remember just lying in bed for hours every afternoon. I had too much to think about to do anything else. It must have looked as if I weren’t doing anything, but I was very busy.” Later, describing receiving infusions of gamma globulin, she writes; “I didn’t know it at the time, but I was paying attention.”

The attentions of the neurologist, along with youth and luck, drive the disease into remission. Manguso is 32 now. She has been in remission seven years. And though she experiences lingering effects of the disease, she is functional. She is currently living in Rome on a fellowship. She wrote this book. 

She could relapse at any time. And this had taught her to pay attention, and to see the world in space-time: everything is happening simultaneously, has already happened, has not happened yet. | July 2008

Diane Leach lives in northern California with her husband and cat. She blogs at When not reading or writing, she regularly burns herself in the kitchen.