Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death.  The disease is relentless, and treatments palliative at best. 

First in handwriting and later by means of a tape on which she can type, letter by letter, by moving her head to press a button as a cursor cruises through the alphabet, she keeps a diary up until just days before her death.  The diary, a remarkable record of her physical and emotional fluctuations, includes stories she laboriously writes for her daughters that gently mirror the confusions they encounter coming to see a profoundly disabled mother who can no longer hold them or speak to them.  The story culminates in Emily's plea for someone to turn off the ventilator that is keeping her alive, and the efforts her husband makes with the help of a meticulous and sympathetic lawyer and a courageous doctor to arrange for a voluntary death.  


Written by a journalist who interviewed all the adults involved in Emily's illness and death, this remarkable book records several years of living with a brutal progressive illness and a decision to resist prolongation of life.  Since it was published in 1987, discussion of the right to die has become more public, but the issues it raises remain pressing for ethics committees, families, and patients.  Once in the hospital, it is very difficult to retrieve control over end-of-life decisions that have become increasingly complicated as the means to prolong life functions have become more sophisticated and routine.   Malcolm's narrative, which weaves together the material he gathered in extensive interviews and Emily's own words, is compelling, reflecting the considerable work he has done as a journalist on the medical, legal, and ethical dimensions of end-of-life decisions.  This is an important book to make available to those facing such decisions.  Though it was written 25 years ago, it continues to speak to an urgent issue for those who suffer from terminal conditions and their families. 


Times Books

Place Published

New York



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