Since 1980, I have lost more than 250 friends to the devastation of AIDS. At first, I grieved each one intensely, and my life came to a halt as I acknowledged the passage of a loved one. Eventually, as the death toll mounted, I found myself responding to the notification of yet another death with a shocking calmness. The news would arrive and I would absorb it and resume my daily chores.
Aware of my denial around the emerging holocaust, I created procedures to ensure that I would not lose anyone without paying adequate homage to their lives. I would list them in my journal and write of their lives in a small attempt to hold my own private memorial service. Still, the increasing numbers forced me to institute guidelines so that I could continue living without becoming permanently bitter. I didn't want to become another person utterly changed by the ravages of this disease. I would go to funerals of only the closest of friends or of comrades with whom I had joined in the battle against AIDS. I frantically attempted to cling to a semblance of a daily routine while each day I was forced to face the horror of AIDS.
Steven S. Schwartzberg's "A Crisis of Meaning" is not a casual read for a Sunday afternoon, nor is it a spiritual guide. However, it is an important addition to the ever expanding list of writings about this modern-day holocaust. It illuminates the physiological and emotional ramifications faced by those who live with AIDS and HIV. As a person who has been a primary caretaker, I began to understand my own changing behavior over the 15 years since the beginning of this nightmare.
For those who are HIV-positive or the primary caretakers or families or friends of people with AIDS, the book offers a powerful insight into the numerous options for coping in this crisis. The author provides a structure to understand why one person with AIDS seizes his or her status as an opportunity for a new beginning, while another gives up on life.
Schwartzberg is refreshingly honest when he states in his introduction: "This is not a primer on turning trauma into triumph." It is instead a book that carefully studies the meaning of AIDS to different people, the role of homophobia in the AIDS crisis and the psychological dangers that await individuals.
The real strength of this book is its structure. Schwartzberg carefully takes a mass of emotion, fear and mourning and groups them into understandable terms and categories. For example, he presents 10 ways people come to terms with AIDS, ranging from "a catalyst for personal growth" to "irreparable loss." He then explains in lay terms how each of these "representations," as he calls them, manifests itself. He uses the same technique throughout the book in an in-depth examination that helps us provide "meaning" to our different reactions to AIDS.
Schwartzberg also uses case histories to give life to the book. Their stories in longer segments would enrich an already good book. When the author talks about the "representation" of "HIV as Irreparable Loss" we hear the voice of "Victor," who says:
"I don't know if I really want to get old: There's not a lot of people left in my life and I'm worn out trying to make new friends, have them get sick and die. I don't want to be old and alone, I don't know what value there is in surviving for the sake of surviving. I think, most of the time lately, death might be a welcome relief from what this is, what life has become. . . . My life being visible and invisible have always been big issues, and every time somebody dies I become less visible. There's a lot of ghosts floating around."
The book is at its most powerful when we hear these strong and courageous voices. In addition, Schwartzberg's writing is not always of the highest caliber. He overuses the word "meaning," and you quickly grow tired of it. He has a tendency to repeat already-made points.
Nevertheless, he provides an insightful, structured overview of the many psychological layers confronting those of us struggling to better understand the presence of AIDS in our lives. In addition, this book provides hope that the human spirit can prolong life, that courage is alive in those fighting this epidemic and that individuals can triumph in the most adverse circumstances.
In an epilogue added to include the changing nature of the epidemic with the advent of promising new medications, Schwartzberg speaks of cautious new hope after the most recent International Conference on AIDS, held in Vancouver. But even with the news of possible breakthroughs, the grim reality of AIDS still is with us. He writes:
"Last week, a patient told me of an acquaintance's death. This did not shock him; he had already experienced many other deaths, and regarded them as unhappy but commonplace. Such are our lives. But he noted, with irony, a somewhat different reaction to hearing of this one. It seemed harder to tolerate, sadder and more outrageous, when viewed against the backdrop of the changing news. In some ways now, how much more challenging and difficult the ambiguities of life with HIV may be . . . how much more bewildering and maddening that people are still sick, still succumbing, still dying."
As long as people are dying of AIDS, this book will remain an important guide to people who are struggling with this disease.