THIS FAR AND NO MORE A True Story By Andrew H. Malcolm Times Books. 247 pp. $17.95

"This Far and No More" is Andrew H. Malcolm's gripping story of what happened to Emily Bauer, and to her family and friends, when the 40-year-old clinical psychologist and mother developed amyotrophic lateral sclerosis (Lou Gehrig's disease). In the taxonomy of dreadful diseases, ALS may be one of the most awful. Gradually, over months or years, it destroys the synapses connecting the brain and muscles. The patient loses all ability to move; digestion is disrupted. Breathing ceases without a respirator, which of course makes speech impossible (although, even earlier, weakening tongue and facial muscles make comprehensible speech extremely difficult). Only the patient's mind remains intact, free to experience fully the terror and frustration of its gradual imprisonment.

This is exactly what happened to Emily Bauer over the course of almost four years. Her condition worsened rapidly -- from an irritating limp, to loss of the use of her legs, to breathing difficulty, to a weakness in her arms that made it impossible for her to type or even to lift an oxygen mask to her face. By the time she entered the hospital, to be kept alive on a respirator, her children could not remember seeing their mother walk.

Emily's husband Bob was baffled, terrified, conscientious, overworked and resentful. During the months before his wife's hospitalization, he was responsible for making her as mobile as possible. Before her arms became totally paralyzed, he rigged up ropes over their bed so she could adjust her position at night. He massaged her legs when she suffered agonizing cramps. He helped her into and out of her wheelchair, onto and off the toilet and in and out of her clothes.

When Emily was moved first to a hospital, and later to a chronic-care facility, Bob dutifully and lovingly visited her at first twice a day, then daily, then as often as possible. On Sundays, he brought her confused, scared children to visit their dying mother. The strain was enormous.

For Emily, ALS was the enemy. And like any enemy, it needed to be fought. An adamant, determined, intelligent woman, Emily knew she couldn't fight without hope. Nutritionists, spiritual healers and an assortment of well-meaning but expensive quacks provided the hope of a cure, but inevitably her condition worsened. Worried that her two daughters would never really know her, Emily wrote them letters and stories. She and her friends made the little girls quilts and scrapbooks to remember her by. She kept a voluminous diary, first using a typewriter, then mouthing words which friends would transcribe and, finally, using a sensitive computer hookup, nestled between her cheek and pillow and activated by the minute nods that were all the movement she could manage. She lived for her friends' and family's visits. She prayed and meditated on the meaning of her illness and her life. She blinked to communicate (one blink for yes; two for no). She fought with courage and enthusiasm for more than three years, until she had had enough.

On June 25, 1983, she wrote in her diary: "Sunday's visit was very unsatisfactory. Alli and Jenie {her daughters} did not want to come inside to see me ... Neither wanted to listen to the story I wrote for them ... I was very upset at my immobility. I can't do anything to interact with them.

"Jenie wouldn't kiss me good-bye."

Two days later, when Bob arrived for his visit, his report on the day's activities was interrupted by Emily's computer printing out this message:


Dying, of course, isn't simple if you lack the physical means to your own destruction. Emily's illness was terminal, but before death, it promised release into a coma, where she could be sustained indefinitely, the respirator puffing air into her lungs, tubes and hoses cleansing her blood and dripping nourishment into her veins. This prospect horrified her. Powerless to help or harm herself, she was dependent on others to end her life. And getting someone else to kill her -- a husband who loved her, no matter how weighted down he was by her illness; physicians who were sworn to sustain life, not end it -- was almost impossible.

Bob stalled for a month before he consulted an attorney about Emily's wish to die. Finally, he got in touch with a group called Concern for Dying, which referred him to a lawyer who, months later, succeeded in helping end Emily's agony in the "least illegal manner possible."

"This Far and No More" is not just a "disease of the week" tearjerker. It is a harrowing report on how difficult it is to die in our society, even when life, by most standards, has become unendurable.

The story of how Emily and her friends and family finally reached an accommodation between her wish to die and the state's determination to protect its citizens' lives is a testament to Emily's determination and to the reluctance with which the healthy concede illness' victory over the ill.

This is a haunting book, suspenseful and terrifying. Emily Bauer's diary entries, which make up almost half of the text, prove that our spirits are strong: We can sustain our "selves" far beyond the limits of our bodies. But "This Far and No More" also demonstrates that a life of utter dependence is not only a grievous burden, but possibly an intolerable and wrong one.

The reviewer is the editor in chief of Parents Magazine.