In a collaboration which builds upon itself -- word and photograph -- Dr. Elisabeth Kubler-Ross, a psychiatrist and explorer in the field of death and dying, and Mal Warshaw, a photographer concerned with capturing the "humanity of the moment," have created a compassionate document that is an important contribution to the growing literature on death and dying.
Kubler-Ross, who laid down the basic outlines of what has become her life work in a "death and dying seminar" she taught at the University of Chicago in the late '60s, continues to explore wider possibilities in the care of the dying, in working with the families of the dying and those caught in the troubled aftermath of sudden death, suicide, murder.
"To Live Until We Say Good-Bye" is fitting testimony to the dying people and their families and friends who allowed Kubler-Ross and War-shaw to be present -- the psychiatrist counseling, consoling; the photographer, working in still light, capturing the days of dying -- as the people of this book lived out the balance of their lives and dealt with the great questions that we all ultimately must face.
We witness -- through letters, fragments of a journal, a note (written by a 5-year-old girl dying of a brain tumor to her mother) -- the unfolding of events which touch on our own loss to come, the imaginations we hold of how it might be.
Louise, 57, a social worker at a hospital, writes of how, while painting, she decided to cease further medical treatment for cancer when a strong message came to her: "Hell, no, you cannot undergo chemotherapy." Her fellow hospital workers chided her as "self-destructive" and "plain-selfish." Ultimately her colleagues forced her into a premature retirement because they felt it was too depressing for patients to see her in a wheelchair. Louise went home and with careful attention from her housekeepers, continuing meetings with Kubler-Ross, and the company of her two dogs, she ordered her life from a bed in the living room, welcomed friends, and created paintings that revealed the inward peace she found. "She has," as Kubler-Ross said in a memorial service for Louise, "become a symbol and example of what it is like to make use of the human right of free choice."
Louise's "free choice" is not offered as the path for everyone and, in fact, is not most people's choice. Beth, a 42-year-old model, after surgery in Europe, kept her apartment, took long walks on Riverside Drive, eventually weakened and signed into a hospital two weeks before her death. Jamie, the small girl, came home from the hospital to spend her last days with her mother and brother. Jack, 71, a retired construction worker, built a detailed doll house in the workshop room of a New Ork hospice organization for incurable cancer patients.
The book concludes with a chapter that describes the work at Shanti Nilaya where Kubler-Ross now practices. In collaboration with two San Diego psychodramatists, Jay and Marti Barham, Kubler-Ross has established, above Escondido, Calif., in a private place surrounded by mountains, the Shanti Nilaya, which means "Final Home of Peace." It is a growth and healing center, a place "where adults of all ages and backgrounds will be able to come and participate in workshops to learn how to live until they die."
Recently Kubler-Ross' speculations about a life after death, declarations that life is a passage, death a transition, have generated rejecting shakes of the head from some religious and medical people. Yet, in her defense, there is research recording the data of "near-death" experiences -- patients recovering from periods of unconsciousness who report having viewed their recumbent bodies from several feet above the ground (autoscopy) or of "traveling" into another region or dimension (transcendence). In any event, Kubler-Ross' call for a compassionate response to the dying will survive the realities of whatever settles after the professional storm clouds clear.
"To Live Until We Say Good-Bye" comes at a time when serious inquiry into death and dying is finding more public acceptance. Still there is more work to be done -- more education of ourselves, more provision for affirmation of life and dignity in death. We all need to learn, as Elisabeth Kubler-Ross writes, that "we have the choice to complete our work, to function in whatever way we are capable and thereby touch many lives by our valiant struggle and our own sense of purpose in our own existence."