One Hundred Days, by David Biro
Being sick is more complicated than it used to be. Medical technologies that offer new hope also lead to a bewildering thicket of options. The complexities of being sick may account for the rising number of books telling the story of illnesses. Autobiographical accounts of sickness, or "pathographies," have become an important source of information and comfort; we will all at some point be involved in decisions our grandparents never had to make about how to live with illness and how to die.
When the patient is a doctor, the story takes on added authority. David Biro's book chronicles a young doctor's battle with a rare and life-threatening blood disease, paroxysmal nocturnal hemoglobinuria (PNH). Biro focuses closely on the tradeoffs involved in bone-marrow transplant--a risky, controversial and painful treatment.
His doctors are sharply divided over the advisability of the procedure. His wife is ambivalent. Outcome studies are inconclusive.
Biro's decision to undergo treatment requires not only medical assessment, but a reckoning with his own motives and fears. He emerges from months of pain, isolation, fatigue and uncertainty profoundly changed and aware that the terms of his life are permanently altered. His compromised immune system and the lack of reliable statistics about full recovery multiply and deepen his uncertainties.
The book offers a direct look at the effects of serious illness on caregivers as well as on the patient. Each family member and friend has to adjust to a radically altered relationship. Tensions arise between Biro's parents and his wife; they want to encircle him with familial presence while she wants more time alone with him. "Your family is overbearing," she finally complains. "They're stifling. . . . Your mother cleaning all the time, your sister making up schedules, your father telling me what to do, how to act." But Biro wants "everyone involved."
In a culture where diversity is hailed, we don't learn protocols for handling life crises. Norms, attitudes and values vary, and serious illness brings those differences to a head. One Hundred Days gives no prescriptions for how to handle one's own sickness or to care for a loved one. Its treatment of the spiritual dimensions of illness is sketchy. But the clarity and courage of Biro's self-confrontations offer a thought-provoking model for others who face crucial and costly medical decisions. The writing is engaging as well as medically informative. Biro's love of literature and writing, a love that preceded his medical training, rewards his readers with sharply drawn character portrayals, realistic and poignant dialogue, and an account of pain, hospitalization, fear, radical loss and ongoing recovery that requires us to reflect on what we may be called upon to endure, and what grace may come to help us endure it.
