15th
The New England Journal of Medicine 8/13/09
Dancing at the River’s Edge:
A Patient and Her Doctor Negotiate Life with Chronic Illness
By Alida Brill and Michael D. Lockshin. 253 pp. Tucson, AZ, Schaffner Press, 2009. $23.95. ISBN 978-0-9801394-0-2.
The drama of chronic disease has many actors, but the single most important one — and far too often, the silent one — is the patient. Chronic illness changes the lives of patients and their families in profound and personal ways. Relationships are destroyed, identities are lost, careers are redirected or abandoned, and finances are ruined. In most instances, chronic diseases can be as “life threatening” as diseases that have an inevitable fatal outcome. Chronic diseases challenge even the most skilled health care providers and strain a health care system that is poorly equipped to provide the necessary care. Coexisting conditions compound the management of chronic illness, and good options for treatment are frequently limited. Finally, the costs associated with chronic disease are truly alarming. For example, arthritis and related diseases — the most common causes of disability — currently affect 46 million people in the United States at an annual cost of $128 billion. These numbers are staggering, and they are projected to increase exponentially over the next two decades. This fact alone should add a sense of urgency to the quest to address the problem of chronic disease, which must be front and center if we ever hope to achieve effective and meaningful health care.
This book captures the thoughts and emotions of coauthor Alida Brill — in whom an atypical form of Wegener’s granulomatosis developed at a young age — along with the thoughts and experiences of coauthor Michael Lockshin, a rheumatologist who has cared for Brill throughout her illness. We learn very little about Brill’s disease or how it is managed, but we learn everything about how profoundly it affects her. She goes through periods of denial, anger, fear, hope, and resignation, which give way to her acceptance of her illness as a “life sentence.” Her relationship with Lockshin is built on trust, respect, and openness, and it becomes fundamental as they navigate her illness, even while they keep their distance and independence from one another. Their solution for effective health care is simple and straightforward — the focus must be on the patient.
Together, Brill and Lockshin work to maintain Brill’s “dignity,mobility, [and] independence,” which would seem to be goals of every patient facing a serious chronic illness. Chapters alternate between Brill’s writings and Lockshin’s writings, and over the course of the book the two narrative threads seem to merge into one, with the recognition that the authors are very similar people — both are fiercely independent, caring, and working to protect people from the health care system. Their writings are poetic, revealing, insightful, and at times shocking in their honest and frank discussion of aspects of chronic disease that are rarely brought out into the open.
The reasoning behind the choice of the book’s title, Dancing at the River’s Edge, is not apparent until near the end of the book, but it is worth the wait. It adds special meaning and leaves a memorable image of what it is like to live with a serious chronic disease.
John H. Klippel, M.D.
Arthritis Foundation
Atlanta, GA 30309
