W.H. Freeman & Co., New York, 1995
Goethe said, "There is strong shadow where there is much light." One can hardly bear the brilliance and intensity of the light, nor the darkness and despair of the shadows, which pour from the patients of Dr. Abigail Zuger of Bellevue Hospital in New York. Zuger has chosen to cope with the enormity of the task of providing primary care to people living with HIV and AIDS in an AIDS Clinic in New York by chronicling the lives of eight patients from her practice from 1988-1995 through the lens of the physician's exam room, and we are much the better for it.
Here are the stories of Nancy Corelli, for example, who has early HIV infection and is leading a near-normal life. She haunts Zuger, and the reader, with a single quiet question: "How long will I last, Dr. Zuger? How long?" As the last patient in the series, she articulates the most difficult question of all and speaks for the other seven, as well as for all people living with HIV/AIDS. Until the cure; but the answer is unspoken, even unthinkable, for Zuger and thousands of other physicians and health workers like her. While we move on to the next short-term problem and search for short-term solutions, we save our deepest hopes for some time in the future, and bite our tongues.
In the meantime, there is the crushing reality of HIV and AIDS in Zuger's examining room. There is HIV in several generations of one family, like the Wilsons. Pauline Wilson, the stoic grandmother, has so many medical problems that HIV scarcely receives any attention. More critical for Pauline is the reality of seven grandchildren to care for. Five are the orphans of her eldest daughter who died from AIDS in 1992, and another two are the children of Cynthia, her second daughter, who has just been diagnosed with AIDS.
Zuger succeeds on several occasions with clinical problems unknown to general internists with no experience with HIV infection. This is one of the remarkable subplots of the book: the constant physician-patient negotiation through the wilderness of HIV care, clinical trials, and seemingly insurmountable social problems. When Cynthia explains to her how her 13-year-old daughter has just started to have sex, and how her older daughter is moving out and is involved with a drug-using crowd, Zuger realizes that, in spite of fixing up Cynthia's esophageal infection, diabetes, and HIV, how little she has really fixed.
In the most remarkable of these remarkable stories, we watch as Joe Morales's health gradually declines, and he becomes unmanageable, aggressive, and violent. His wife protects herself and her daughter by gaining a residence in an anonymous shelter in Connecticut. When Morales deteriorates further, case managers and social workers within Zuger's AIDS care team patch together a system of in-home care that involves Mrs. Morales during the daytime (when her daughter is in school), a neighbor during the evenings, and an attendant paid by the State of New York at night. Against all odds, this arrangement succeeds for many months.
A plenary session on the problem of multiple losses attracted over 600 people from around the world at the International AIDS Conference in Amsterdam in 1993. Four speakers told beautiful and moving stories from their experience, after which cards were passed through the audience, and from this pool, another four speakers were selected at random to share their own experiences. The result was an astonishing blend of the pinnacles of human courage and compassion and the depths of despair and suffering around the world due to AIDS. One felt that each person in the audience represented scores or hundreds of co-workers and friends whose lives and communities have been devastated by AIDS. And one felt that any of the 600 could have risen and told stories of equally compelling power. Now we know that at least one, or rather eight, of these stories have been told.
It may be as difficult for the reader to read Strong Shadows as it was for Abigail Zuger to write it. It will surely be as rewarding. One can't easily decide whether to laugh or cry after reading these stories, but the real lessons are as immovable as Grandma Wilson: A person can be as starving for dignity as for food, and healing begins with respect and compassion. Many thanks are due to Zuger, for sharing her experiences so generously, and for patiently, painstakingly, and urgently offering dignity to her patients.
Renslow Sherer, MD, is director of the Cook County HIV Primary Care Center in Chicago, llinois.