The doctor and the zebra
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* Jacalyn Duffin

**The doctor and the zebra; One hundred days: my unexpected journey from doctor to patient**; David Biro; Pantheon, New York; 2000; 289 pp. ISBN 0-375-40715-4 $35.00

An autopathography is a memoir of illness, an account of how it feels to be on the receiving end of medical care. Perhaps the most famous specimen of the genre is Norman Cousin's *Anatomy of an Illness,* oft cited as the story of how a patient bucked authority to laugh himself back to health. Doctor-written autopathographies have enjoyed a special status for centuries. In the 1600s, for example, Thomas Sydenham wrote about his gout with such eloquence that his description is now a classic. Some physicians have incorporated their own case histories into research publications anonymously. Others have proudly proclaimed their experiences, advancing the cause of neglected diseases through professional identification. Several editors have published collections of medical autopathographies: Albert Grotjahn in 1929, Max Pinner and Benjamin F. Miller in 1952, Raymond Greene in 1971, and Harvey M. Mandell and Howard M. Spiro in 1987. Clinicians are fascinated by the genre - perhaps because they are intrigued, if not intimidated, by role reversal, a frustrating if enlightening movement from active to passive. *One Hundred Days* is an entertaining addition to this tradition.

In 1996, at the age of 31, David Biro, a Jewish New Yorker, was only weeks away from his final examinations in dermatology. Married, athletic, Italophile and writerly (he had a novel in progress), he was happily set to share office and career with his dermatologist father. A vague clouding of his vision was quickly diagnosed as retinal vein thrombosis. But what caused it? After repeated testing with conflicting results, he is found to have a true medical "zebra," the rare blood condition of paroxysmal nocturnal hemoglobinuria (PNH). The young skin specialist and his family fret over the uncertainty of diagnosis in the unfamiliar territory of hematology. Once they have a diagnosis, knowing what - if anything - to do in terms of treatment is even more challenging.

Biro's physicians at the Sloan Kettering Memorial Hospital are real hematologists, and he uses their real names. But their "personalities" spring entirely from the reactions they inspire in their patient, and those reactions vary from day to day. Biro contrasts shy but determined Hugo Castro-Malaspina, a marrow transplant expert, with the warm but cautious Lucio Luzzatto, an expert on PNH recently arrived from Biro's beloved Italy. Biro adores Luzzatto and wants to stick with him; but Castro recommends a transplant, and Biro hears "cure." Impatient, and finding a suitable donor in his youngest sister, he opts for the transplant. It is clear, however, that his decision is conditioned by personality and transference as much as by the diagnosis. The rest of the book is devoted to the arduous consequences of Biro's choice. FIGURE

![Figure1](http://www.cmaj.ca/https://www.cmaj.ca/content/cmaj/162/13/1857/F1.medium.gif)

[Figure1](http://www.cmaj.ca/content/162/13/1857/F1)

Figure. 

The preparations are frantic and comic, especially the process of banking sperm. The pain involved in radiation and chemotherapy and the six-week imprisonment in a small hospital room are described in graphic detail. Biro suffers all the complications: exquisitely tender radiation dermatitis that causes his scrotum to slough completely, severe mucositis of mouth and esophagus, hepatitis, unexplained fever, drug-induced delirium, weakness, weight loss and fears of impotence. Biro's parents, sisters and friends leap into action to provide round-the-clock support. His independent wife, Daniella, is put off by the intrusion as much as she is reliant on it to compensate for her necessary absences. While Biro's body falls apart under the onslaught of cytotoxic drugs and narcotic analgesics, his family and marriage are subjected to equally destructive forces. Yet all - body, family, and marriage - emerge intact, though altered by the experience.

Biro knows he is not the first doctor to learn that being a patient is full of unpleasant surprises. He portrays himself with candour: sheltered, naïve, privileged and perhaps even spoiled. By the end of the treatment, he appears less changed than his wife and parents by the intimations of mortality; however, he has more self-knowledge and greater understanding of how the ravages of illness can extend beyond the patient's body. Biro is conscious of and grateful for the ease with which he obtains specialist consultations, but he glosses over the quick arrangements made for insurance coverage through inside contacts - an advantage that might be envied by less privileged readers in the US. His tale is interspersed with lucid explanations of bone marrow function and T-cell depleted transplantation, useful to anyone facing this procedure. But these explanations interrupt the personal tale of unusual family dynamics, which is, for me, much more compelling.

The strength of this book lies in Biro's superb portrayal of unique people and of the effect that one man's illness had on them all. How many clinicians move into practice with their fathers? How many have mothers who would make daily house calls to rout out germs? Which of them would welcome the displacement of their spouse and colleagues by family, or expect this displacement to be tolerated for weeks on end? Excerpts from the diaries of both anxious parents reveal their fears and feelings of guilt. The diaries also reveal that this book, planned even before the donor cells were harvested, rewards family confidence in a gifted son.

*One Hundred Days,* like Napoleon's famous comeback, does not end in closure but in ignominious transfer to St. Helena, an indeterminate but not intolerable island state floating between health and disease - a state we always occupy, although usually unaware. The irony is that Biro's continued fragility two years post-transplant is no longer a product of PNH alone, but also of his treatment decision. What might have happened if his personality had allowed him to follow Luzzatto's recommendations and do nothing? We are led to believe he would be dead. But we will never know.