The Patient Talks Back


Sarah Manguso, a poet, and the author of The Two Kinds of Decay, says that her memoir “is a usual book about illness. Someone gets sick, someone gets well.” People feel a need to talk or write about their illnesses, and most of us read these accounts with close attention. They are written to inform and encourage others, to bear witness to our common fate, and to give advice about how to avert it; and the more inspiring, cautionary, and tutelary the book, the more eagerly we pick it up—among these under review, Jill Bolte Taylor’s My Stroke of Insight has been on recent best-seller lists.

There’s a roster of distinguished preceding examples, from Helen Keller’s The Story of My Life to the moving book The Diving Bell and the Butterfly by Jean-Dominique Bauby, victim of the “locked-in syndrome” from a massive stroke at age forty-three, which left him imprisoned in his paralyzed body but with his mind intact1; from Montaigne’s description of what it’s like to pass a kidney stone, to Alphonse Daudet’s In the Land of Pain, as he lay dying of syphilis, to Betty MacDonald on her tuberculosis in The Plague and I. There are books on just about any medical condition written from the point of view of the sufferer, the doctor, or a family member, valued testimonials to an apparently inevitable part of the human lot, often treated in painting too, though seldom in fiction except as convenient denouement.

Asking Google about “chronic idiopathic demyelinating polyradiculoneuropathy,” especially the eMedicine pages on the disease, or about stroke, especially the material furnished by the American Stroke Association and the American Heart Association, will provide a lot more information about these conditions than the books under review, but not about the subjective experience of them. Manguso’s illness, which goes by the acronym CIDP, was anything but usual. Between its onset in 1995 and presumed end in 2004, she suffered one relapse after another; her father, she writes, aged ten years during the first year she became ill, and her mother, wondering “why this had to happen,” reflected the spiritual or metaphysical or religious disquietude that affliction provokes.

Manguso vividly describes the morning she awoke at home with numb feet and tingling in her hands; how during the next few days at college she began to walk stiff-legged and then to stagger; how finally, after she fell down in the courtyard, she was taken to the hospital by her parents, and promptly admitted to the intensive care unit. Initially, she was diagnosed as having Guillain-Barré syndrome, an acute inflammatory disease of the peripheral nervous system, and was immediately treated with plasmapheresis, the removal of her blood plasma and its replacement by plasma from healthy persons, to rinse out the “rogue antibodies” that her body was indiscriminately producing, which were destroying the myelin sheaths that surround and protect peripheral nerves.

Though her diagnosis was later changed, the prompt plasma exchange may well have helped prevent her from having…

This is exclusive content for subscribers only.
Get unlimited access to The New York Review for just $1 an issue!

View Offer

Continue reading this article, and thousands more from our archive, for the low introductory rate of just $1 an issue. Choose a Print, Digital, or All Access subscription.

If you are already a subscriber, please be sure you are logged in to your account.