New Lives for People Living With
By Jay Neugeboren
Morrow. 390 pp. $25
Reviewed by Joshua Wolf Shenk
Jay Neugeboren's 1997 book Imagining Robert told the excruciating story of his younger brother's chronic mental illness. Robert's precise diagnosis has varied "depending largely upon which drugs have been successful in keeping him calm, stable, and/or compliant." His treatment has varied from horrific to merely incompetent in public hospitals with poorly paid and trained staff -- and not enough of them; little or no psychotherapy or individualized treatment; and careless use of medications and such "treatments" as "insulin shock" and straitjackets. It is an affecting story, all the more so because such a complete picture of Robert (and Jay) emerges. The author spares no grim detail but also continually asks himself "What, given [Robert's] life, had enabled him to survive, and to do more than survive -- to retain his generosity, his warmth, his intelligence, his pride, humor, and his sense of self."
Transforming Madness is a sequel of sorts, following Robert's adventures through more breakdowns and hospitals and limited recoveries. But this book is mainly an inquiry into other, more hopeful stories of madness. Hope, Neugeboren notes, "can prove to be a genuine and quite solid element -- a palpable force in a person's life and being." The hope is not for a "cure," necessarily, but for programs and modes of thought that help people live work, love and play -- even if symptoms of mania or hallucinations or depression persist. "The more I look," Neugeboren writes, "the more I find. I meet individuals who have endured gruesome forms of neglect and abuse, both in and out of hospitals, who have led lives so horrific they make Robert's life seem almost blessed in comparison, and who have somehow managed to return to our world, into very full and very imperfect lives, to tell their tales."
As he tells these stories, and lets receivers and givers of care tell their own, Neugeboren returns to one central theme -- underscored by his writing voice, which blows up balloons of thought just short of their breaking point: There is no way to manage or treat severe mental illness without embracing complexity. Neugeboren is suspicious, even disdainful, of the now-dominant notion that mental illness is a "no fault bio-chemical brain disorder." He is equally dubious of the previous vogue, that mental illness is purely a product of early childhood experiences. In his view, far too much energy is spent arguing these positions, when the truth obviously lies in some combination. Medication, insight, and hard work are essential ingredients for recovery. Neugeboren vividly describes hopeful programs and people -- and, by regularly returning to Robert in the locked psychiatric wards, shows their antithesis. The problem is that while the lousy scenarios are obviously flawed, the terrific ones require not just good ideas and adequate funding but also the rare energy and talent of people like Moe Armstrong and Sherry Mead, two remarkable caregivers whose experiences are included in the book.
The programs Neugeboren profiles are exceptional and can serve only a small minority of the people who need them. Though we like to imagine that we are far beyond the time when mad people were "caged, imprisoned, tortured, murdered and abandoned, held up to public ridicule, and exiled from the families and communities into which they were born," the treatment of serious mental illness is still quite seriously lacking. Perhaps 500,000 mentally ill people live on the streets or in jails or prisons; 15 percent commit suicide and 80 percent to 90 percent are unemployed. Neugeboren finds varied explanations for these conditions: In Northampton, Mass., apartments to house mentally ill people are blocked by protesters, who say the new plans will "rape the neighborhood." In hospitals, where aides earn $18,000 a year and doctors and social workers are typically the least qualified of their profession, patients tell of being secluded, beaten and raped. Even with the best treatment and help with housing and jobs, the seriously ill (as opposed to the much broader population, perhaps 48 percent of Americans, who will experience a diagnosable mental disorder at some point in their lives) typically relapse.
As he did with the story of his brother, Neugeboren weaves together the despair and hope. "The rabbis tell us," he writes, "that a person who does not believe in miracles is not a realist." Transforming Madness is occasionally repetitive and, like Imagining Robert, might not appeal to a general audience. If you like to read books aloud -- or even move your lips with the words -- Neugeboren's prose will tire you quickly. Full of parentheses and dashes and commas and more parentheses, his sentences often snake through hundreds of words, and his thoughts tumble into each other. The tension and complexity, exacerbation and wonder build until Neugeboren surrenders, only for a moment, with an ellipsis. But his empathy, authentic voice, and vivid narratives -- of Robert, Moe, Sherry and dozens of other people living with madness -- form the essence of good literature, which shows the general reader worlds he or she will (hopefully) never encounter. It follows the spirit of Henry James, who wrote that sorrow is strong, but "we are stronger, inasmuch as it passes and we remain. It wears us, but we wear it and use it in return; and it is blind, whereas after a manner we see."
Joshua Wolf Shenk writes frequently on drug policy, pharmacology and mental health.