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Volume 7, Number 1

BOOK REVIEWS

How it Feels to Fight for Your Life
Boston: Little Brown & Co., 1989; 131 pp; $15.95 (US)
Jill Krementz

This remarkable book is a testimony to the strength, spirit and wisdom of 14 children with chronic health impairment who shared with the author their fears, their hopes, their discouragements and their triumphs, but most of all, their seemingly inexhaustible capacity for recuperation and hope.

This collection of testimonies conveys admiration without idealization, chronicles remarkable strengths and ordinary weaknesses, expresses moments of intense anger without lasting bitterness and, avoiding the mirage of perpetual utopic heroism, paints a humane and realistic picture of courage in the day-to-day "little things," the step-by-step victories, the hugs shared with family and other patients, the humour shared with special nurses and the "you-are-one-of-us" acceptance from true friends.

With a simple and natural style, Krementz conveys the individuality and personality of each of these 14 survivors in vivid personal brushstrokes, which make them as accessible and tangible as the girl next door or the boy who is your son.

We are all familiar with the emotions expressed by these youngsters in the face of chronic disabilities such as spina bifida, cardiac malformation, juvenile rheumatoid arthritis, asthma, diabetes or epilepsy, of unpredictable illnesses such as cystic fibrosis or lupus erythematosus, or of potentially lethal illnesses such as leukemia, aplastic anemia, osteogenic sarcoma or kidney failure, as well as sudden catastrophic loss of function as in traumatic paraplegia or disfiguring burns. There is initial bewilderment and disbelief, the "pretending" you are not really sick, the anger at the unfairness of being stricken when others lead carefree, fun-filled lives, the anxiety about painful procedures, the embarrassment about loss of hair, pills, needles, awkward gaits, seizures and the fear of not waking up; all these are juxtaposed against a fierce determination to overcome or, as one child expressed it, "Give the fight 110% and things will turn our for the best." However, the most poignant feeling is that of loneliness, which comes from being different from one's peers. Listen to a 10-year-old asthmatic: "I wish I had no asthma, because kids wouldn't run away … and the urgent pleas to be allowed to live a "normal life" to be treated as an ordinary child or teenager. To be given a chance to laugh and play with the others . . . to be given a chance to LIVE rather than be pitied or expected to die.

In documenting these testimonies to life and faith and the power of the "right attitude," this book highlights the many joyful facets that make up "quality of life" - facets that healthy people often overlook. "When you've been as sick as I have, it makes you grow up faster," says 14-year-old Joseph, who has been through two open-heart operations. "And, it makes you appreciate what you have … I don't even mind doing homework any more because all I can think about is that it's a lot better than being dead."

Finally, health professionals can learn important lessons from these moving stories. "I've gotten much closer to the nurses than to the doctors probably because they are younger and remember what it's like to be a kid." "The pain was terrible. It was beyond dying. It's funny: all I wanted to do was sleep. But they wouldn't let me. They kept asking me how to spell my name and I was shouting S T E W A R T - Got it?" "The worst pain I ever felt was when they had to take the left (chest) tube out. . . People had to hold me down and I was saying every swear word in the world." "I wish everyone knew more about arthritis so I wouldn't have to teach them."

This book is hard to put down, impossible to forget and both inspirational and disturbing in its naked truth about what it is like to be a child with a chronic illness and have to fight for your life. Michael, who has aplastic anemia, sums it up most eloquently: "I compare having cancer to playing a football game. Cancer treatment is pain for gain, as the saying goes. It's very painful. It hurts a lot, but it does a lot for you." So does this wonderful book.

Arlette Lefebvre, MD FRCPC
Staff psychiatrist
The Hospital for Sick Children
555 University Ave.
Toronto, ON, M5G 1X8

I Raise My Eyes To Say Yes: A Memoir
Toronto: Thomas Allen & Sons, 1989; 225 pp; $26.95
Ruth Sienkiewicz-Mercer and Steven B. Kaplan

Ruth Sienkiewicz-Mercer has been a quadriplegic, a victim of cerebral palsy, since she was 5 weeks old. She has spent her life in bed or in a wheelchair. She cannot feed or care for herself in any way. She has never spoken a word, never written a sentence and can read only simple words at a Grade One level. However, with the help of Steven Kaplan, she began, in 1976, to record her life story. Twelve years later, at the age of 28 years, I Raise My Eyes To Say Yes is complete.

We follow the incredible life of this young woman from her first loving home with her family, through "some of the happiest moments of my life" at Crotched Mountain Rehabilitation Center, to the "shocking and outrageous" conditions Belchertown State School and then, happily, as a married woman, to her present home.

Does Ruth think as we do? Kaplan, after spending about 2000 hours with her, says "She is a genius, blessed with a rare, sparkling, feisty. . .resilience which inhabits those remarkable eyes and that limp, waifish body." She has the thoughts and emotions, dreams and disappointments that we all do.

From her family home where, despite her disability, she was treated as a normal child and after a brief stay at her beloved Crotched Mountain Rehabilitation Center, Ruth was committed to Belchertown State Hospital where she was assumed to be an imbecile and for the next 10 years, was treated as one. She was force fed, kept in diapers, treated roughly and basically ignored. A truly shocking scene.

But Ruth, with her gutsy approach to life, kept her sanity through day-dreaming, through fantasizing better days and through "projection" to the places she loved as a child.

A breakthrough came with the creation of the first electronic board for use in teaching communication to disabled people. Ruth grasped the concept immediately and was soon "talking" as she never had before.

She was on her way. At the age of 23 years, with the help of friends, she left Belchertown for good, and 5 years later made her first appearance as an advocate for the rights of the physically handicapped. She ended her "talk" by explaining that her aim in life was to become "a useful and productive member of society".

This she has done. Married at age 30, she went on to contribute to the permanent closing of Belchertown State School, where she was "treated like garbage". A remarkable feat by a remarkable woman.

I Raise My Eyes To Say Yes, although at times horrifying, is a tribute to the spirit of this young woman. Steven Kaplan, writer and interpreter of Ruth's signals, has done a first-rate job of putting her inner life into words. Through him we explore the dynamics of the family of a disabled person, we see the impact of helpers on a disabled's daily life and we live within the crippled body and brilliant mind of Ruth Sienkiewicz-Mercer. This book should give hope to the severely handicapped and to their families. It is a "must read" for caregivers.

Nancy Thomson
37 Glenallan Rd.
Toronto, ON M4N 1G9

A Year-Long Night: Tales of a Medical Internship
New York: Viking Penguin, 1989; 242 pp; $17.95 (US)
Robert Klitzman

A Year-Long Night describes Robert Klitzman's intern year and his initiation into the world of the hospital, with its codes and rituals, its strange rhythms and observances. The book is a series of short vignettes, which, taken together, describe the experience of internship and capture the tension, the chronic fatigue, the loneliness and the occasional drama and excitement.

Klitzman, who is acutely sensitive to the patient-intern interaction, accepts that patients can induce intense emotions in health care providers, especially the juniors. Because such feelings are a source of stress for the intern, they may interfere with patient care. Klitzman describes his own struggle in dealing with tragic, horrifying and difficult patients during his intern year. Interns, of course, are preferred targets for patient-generated malaise not only because their work is stressful but also because of their novice status.

Although the physical and social hardships of internship in North America has received much attention, little has been done to explore the specific stresses interns encounter in their interactions with patients. The individual's failure to identify these feelings may have grave consequences, including depression, anxiety and chemical dependence. The patient also pays a price. The patient's intensely negative feelings may be difficult for physicians and especially interns to confront; they may experience these feelings as foreign or overwhelming and thus disown them, leading to errors in diagnosis and treatment.

Klitzman shows how his own awareness of patient-generated feelings paid off both diagnostically and therapeutically; for example, in one chapter his expression of sadness to a dying patient helped him avoid depression and the unwitting abandonment of the patient.

Another of this book's strengths is that it describes the intern-patient relationship from the patient's perspective. Throughout his internship, Klitzman discovered that often the patient does not ask for high-technology interventions or fancy cures but rather a simple explanation of his condition. During these grueling years, he reflects more and more on the limitations of medicine in satisfying the patients' needs.

In the final chapter, the author describes his work as a volunteer with victims of Kuru in New Guinea, bringing home the message that there is both an art and a science to modern medicine and that, even today, medical science often has little more to offer than the witch doctor in stone-age societies. What remains, then, is the human dimension, which can be mastered only through time and experience and appreciation of the individual.

I recommend this book to anyone interested in medical training and especially to those interested in imagining how it all could be different.

Ari Zaretsky, MD
Resident in psychiatry
Clark Institute of Psychiatry
University of Toronto
Toronto, Ont.

Am I My Parents' Keeper?: An Essay on Justice Between the Young and the Old
New York: Oxford University Press, 1990; 194 pp; $9.95 (US)
Norman Daniels

The aging of society is a "moral and a practical problem." Daniels warns that, if the United States health care systems cannot meet present demands, the attempt to meet future needs without greater public investment for long-term care will provoke a crisis and undermine social security and medicare programs. This book is a well-constructed, philosophical essay about the fair distribution of resources between the young and the old in the United States.

Daniels examines the traditional view of the children's obligation to care for their aging parents but is unable to find any moral or historic basis for this view. He looks at the libertarian's demand to "privatize" health care through a system of personal savings and annuity plans but believes that it would be dangerous not to treat long-term health care as a social obligation.

The author believes that we must solve the problem of justice in a manner that allows people to "pursue their own moral beliefs" about family responsibilities. We must define "our social obligations" and then design institutions to meet them.

In his examination of the principle of distributive justice, Daniels asserts that the fundamental issue is that people must be treated equally. To illustrate, he describes the life-span approach to justice, which aims for equality over the life-span instead of at any one point in a lifetime.

His solution is a social policy for the old and the young that would achieve justice between the various age groups. He introduces the "prudential life-span account" in which prudent deliberators explore four main issues: (a) the principles on which to base institutions that would provide a just distribution of resources over the lifespan; (b) the notion of "normal opportunity range," that is, basic goods are distributed to provide a just share for each citizen; (c) the idea that life will pass through each stage of the institution; and (d) the "veil of ignorance," which decrees that the deliberators are not aware of the plan of life but will measure well-being against an index of primary social goods. By necessity, prudent deliberators will acknowledge such issues as the disease and age profiles, projected demographic changes and medical technology.

The author believes that pure age rationing may be morally acceptable under certain specific but restricted conditions. For example, the British National Health System offers renal dialysis only to the young. In addition, instruments such as living wills allow people to give prior instructions about the type of medical intervention they wish under specific circumstances. Prudent deliberators may consider a public or a mixed public and private insurance scheme; Daniels refers to several proposals that have been made in this area. He recommends a reform in our policies about employment of elderly citizens to ensure equality of opportunity; unless we do so, we will promote an unfair distribution of resources between the old and the young.

The number of long-term care units required in 2040 will increase from the current 6.9 million daily to 19.8 million. Daniels believes that institutionalization is a last resort, and recommends the introduction of day-care centres for the elderly population and social support services and tax incentives to assist their families.

Daniels admits he has proposed an ideal model theory that assumes general compliance with the principles of distributive justice and with the principle of the theory. His book presents a stimulating argument for a new approach to the provision of health care, including long-term care to an aging population. Anyone concerned with the social principles underlying such a system, or who is in a position to influence public policy in this area, should read this book.

Elizabeth A. Gillis
The Gables, RR #3
Mount Albert, ON LOG 1MO

Darkness Visible: a Memoir of Madness
New York: Random House, 1990; 84 pp; $20.95
William Styron

Many books have helped readers to understand the pain of severe emotional and mental illness. Clifford Beers wrote A Mind That Found Itself, describing his mental illness and the limits of medical treatment at the beginning of this century. He went on to found the mental health movement. In I Never Promised You a Rose Garden, Hannah Green related her experience of severe psychosis, successfully treated by the gifted psychoanalytic therapist and educator, Frieda Fromm-Reichmann. In this same genre William Styron's small book is likely to be of equal importance.

A noted American writer, author of Sophie's Choice and The Confessions of Nat Turner, Styron suffered a major depressive illness in 1985. In 1989, after his recovery, he gave an address at a symposium on affective disorders sponsored by the Department of Psychiatry of the Johns Hopkins University School of Medicine. That address, expanded to become an article in Vanity Fair magazine, eventually became this book.

In this book a successful, recognized, creative person has the courage to uncover a deeply personal document for the public. He does not hesitate to reveal the depth of his anguish and to show how overwhelmed he was by self-doubt and emotional pain. This candour will give heart to readers, and enable them to share with others the awful sense of what they feel or have felt.

Many people feel what Styron has felt; however, few have the capacity to express and convey those feelings as he does. He is at his best in the poignancy of his simple, yet powerful prose:

Of the many dreadful manifestations of the disease, both physical and psychological, a sense of self-hatred - or, put less categorically, a failure of self-esteem - is one of the most universally experienced symptoms, and I had suffered more and more from a general feeling of worthlessness as the malady has progressed. My dank joylessness was therefore all the more ironic because I had flown on a rushed four-day trip to Paris in order to accept an award which should have sparklingly restored my ego.

Styron emphasizes the difficulty he had in finding the help he required. He describes consultations with a psychiatrist and says that, in his case, neither the antidepressants prescribed nor the psychotherapeutic contacts were helpful; in the end he came close to committing suicide. He points out that many artists have committed suicide, mainly because of severe depression, reminding us that the greatest danger of this illness is self-destruction, when the patient can no longer tolerate the pain. In Styron's case he began to improve soon after he was admitted to the hospital and found the "asylum" he required.

In his book, Styron presents his understanding of his illness. He had some probable genetic vulnerability from his father, although he had been free of major depression until he was 60 years of age. He recognized the importance of the loss of his mother at age 13. For years he used alcohol to sedate underlying anxiety, and the illness seemed to be precipitated when he discontinued its use for medical reasons. Once it began, the depression spiralled out of control.

Styron is appropriately positive about the ways in which treatment can help. Depression is a self-limiting but highly treatable illness with the help of chemical agents, psychotherapy and sometimes hospital admission. The danger of suicide must always be borne in mind. Humane understanding is essential.

The book concludes as follows: "For those who have dwelt in depression's dark wood, and known its inexplicable agony, their return from the abyss is not unlike the ascent of the poet, trudging upward and upward out of hell's black depths and at last emerging into what he saw as 'the shining world.' There, whoever has been restored to health has almost always been restored to the capacity for serenity and joy, and this may be indemnity enough for having endured the despair beyond despair."

Stanley E. Greben, MD
Professor of psychiatry and
Latner Professor of Psychotherapy University of Toronto
Toronto, ON M5S 1A8