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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 permanent nerve damage. Typically, Guillain-Barré syndrome evolves to reach a plateau within four weeks, and then is followed by a prolonged recovery, which can be hastened by painstaking physical therapy. People learned about Guillain-Barré from Joseph Heller’s No Laughing Matter, a book that was valuable for Manguso. Heller, the author of Catch-22, had the disease and wrote about it with his friend Speed Vogel.2

Manguso’s illness was different from Heller’s; it kept recurring, each time requiring hospitalization and plasmapheresis, leaving her progressively more neurologically impaired. Desperate, she switched from her old neurologist, whom she “already hated,” to a new one, whom she “loved immediately,” and who made the diagnosis of CIDP and outlined an aggressive program of treatment. (CIDP, commonly regarded as the chronic equivalent of Guillain-Barré syndrome, cannot be diagnosed until its course has declared itself over a period of at least eight weeks.) Manguso’s new neurologist stopped the plasmapheresis and switched her treatment to prednisone—a synthetic corticosteroid drug—the then-experimental drug interferon, and, later, intravenous gamma globulin (IVIg), which is used in several different immunologically mediated disorders. IVIg is believed to contain antibodies that neutralize the aberrant antibodies and other immunological factors that are attacking the peripheral nervous system in CIDP. There is no doubt now that it works.

But chronic relapsing diseases like CIDP that require repeated hospitalizations, and multiple therapeutic and procedural interventions, bring with them a high risk of side effects and clinical misadventures. Manguso had plenty of both. In brief, almost stanza-like paragraphs, she describes doctors’ inattention or disregard of troublesome symptoms, unwanted intrusions by medical students, supportive as well as disagreeable nurses, businesslike orderlies, the welcome arrival of a more efficient plasmapheresis machine, and the chronic fear of death—the sort of details sufferers wish to share and readers read such accounts to learn. She deals with mundane matters such as wiping your bottom when you are nearly completely paralyzed (you don’t, someone else does it for you and seldom to your satisfaction) and, especially, what goes on in the head of a young victim, including the social realities and status anxieties. At one period of remission, she agreed to take part in a college video, but was

less concerned that a handsome rich boy [the filmmaker] was going to see part of my right breast than I was ashamed he would see the hump of fat on my pimply shoulders and think I was a girl who not only had gone to public school but who had acne and was fat.

Her public school education was a source of special shame for her, but she also brooded about sex, and attributes her eventual cure to “the mystical power of intercourse”—conducted despite cannulas dangling from her corticosteroid-fattened and acne-riddled body. The prednisone and IVIg had brought her disease under control, and a powerful emotional uplift, which she craved and counted on, was bound to help further. In spite of this potentially transgressive behavior, the rebellious sufferer escapes with a strangely literary displacement of the punishment—it’s her partner, who “had selflessly had intercourse with an ugly version of a girl he’d once had a crush on,” who dies an early death sometime later from a ruptured aneurysm. Punishment is another lurking theme of her and others’ illness books, vestiges of religious legacies that are nowhere explicit.

The mystical power of sex didn’t put an end to her distress. After four years of prednisone therapy, the extra medication led to a steroid-induced psychosis, whose manifestations finally caused her to be rehospitalized, this time in a locked psychiatric ward, for severe depression, which waxed and waned for years. She recovered from her last serious depression in March 2004, but her understandable fear of a return to calvary remains: “My disease has been in complete remission for seven years, but I still act as if I expect it to come back tomorrow.” It hasn’t, and she has since written two books of poetry and a collection of short stories, and in 2007 won the Rome Prize of the American Academy of Arts and Letters. Yet illness has changed her life and future as it does that of every chronic sufferer.


CIDP is a distinctly uncommon disease, about which little is known, a fact that Manguso valued “for its irrefutable proof of [her] specialness.” It is interesting that, just as many distinguished people have had a long childhood illness that conferred this feeling, Jill Taylor Bolte too feels what she describes as “joy” at her illness. Taylor, a Harvard University–trained neuroanatomist, had a disabling stroke, which temporarily robbed her of all cognitive function and of the ability to talk, understand speech, or move her body purposefully. As the stroke was unfolding, she understood what was happening to her sufficiently well to claim—in retrospect—“Wow, how many scientists have the opportunity to study their own brain function and mental deterioration from the inside out?”

Taylor, unlike Manguso, is not a nuanced writer, but her account is absorbing. To set the stage for what happened, in a chapter called “Jill’s Pre-Stroke Life,” she sketches her undergraduate and Ph.D. training at Indiana State University, and her postdoctoral work at Harvard Medical School in the department of neuroscience. After finishing her postdoc, to further her growing interest in the neuroanatomic basis of psychiatric disturbances, she moved to the department of psychiatry. Readers are then prepared for the onset of her stroke and its aftermath with two chapters that provide some basic information about how our brains work: “Simple Science,” a primer on cerebral function, and “Hemispheric Asymmetries,” which provides the neurological background for the main message of the book.

Taylor’s “Simple Science” section is indeed fairly simple, but in the process of simplification, she also omits some important information, both about the plasticity of the human brain, of which she is a profound admirer, and about the main cause of strokes. Part of her aim is to educate readers about these disasters, so she uses the American Stroke Association’s standard subdivision of strokes into “ischemic,” arising from the blockage of a blood vessel that supplies vital oxygen and nutrients to the brain, and “hemorrhagic,” from rupture of a blood vessel with bleeding directly into the brain substance. But for some reason she describes only a single kind of ischemic stroke, “embolic”: “a blood clot travels into the artery until the tapered diameter of the artery becomes too small for the clot to pass any farther,” thus depriving part of the brain of its neuron-preserving blood flow. She leaves out the most common form of ischemic and of all strokes, “thrombotic.” Thrombotic strokes are important not only because of their frequency, but because they are to a major extent preventable and thus have become the focus of public health educational campaigns.

Most ischemic strokes, like most heart attacks that damage the heart muscle (“myocardial infarctions”), are linked to high cholesterol and atherosclerosis. Such strokes and heart attacks are caused by the sudden formation of a thrombus, a blood clot that completely obstructs an artery already partly narrowed by an atherosclerotic plaque, a buildup of cholesterol, calcium, and other debris in the wall of a vessel supplying the brain or heart. The risk factors for the underlying atherosclerosis that provokes both forms are exactly the same—high blood pressure, smoking, elevated blood cholesterol and other plaque-generating lipids, lack of exercise, obesity, and diabetes.

Therefore, preventive measures are also exactly the same, though Taylor, more concerned with the emotional support of victims than with prevention, doesn’t mention any of the well-known recommendations to lose weight, stop smoking, etc., instead giving a list of forty do’s and don’ts for dealing with stroke victims: “I am not stupid, I am wounded. Please respect me,” “Come close, speak slowly, and enunciate clearly,” and so on. She also does not mention new therapeutic and preventative approaches to stroke, such as thrombus-dissolving enzymes, cholesterol-lowering drugs, and antiplatelet medications, the same agents that have already greatly lowered the incidence of myocardial infarction and improved its outcome when it occurs.

  1. 1

    Translated by Jeremy Leggatt (Knopf, 1997).

  2. 2

    Putnam, 1986.

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