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Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness Hardcover – January 1, 2009

4.6 out of 5 stars 37 customer reviews

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Editorial Reviews


"Brill's writings and Lockshin's 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."  —New England Journal of Medicine

"Dancing at the River's Edge . . . is about the trials and tribulations of chronic disease . . . you ought to get a copy and read it. You won't be able to put it down once you pick it up."  —Paul A. Volcker, former Federal Reserve chairman

"A must-read for anyone who has traveled to the 'other planet' that is chronic illness, or loves someone who is making this arduous journey . . . a life-affirming and deeply moving book."  —Nancy Matsumoto, staff contributor, People; former contributor, Health, Los Angeles Times,  The New York Times, Newsweek, and Time; coauthor, The Parents' Guide to Eating Disorders

"A book unlike any other; this slim volume probes the intricacies of a magical relationship, that of a patient with her doctor. A heart-wrenching dialogue that carries profound and life-altering insights for us all."  —Dr. David Sachar, head of gastroenterology, Mt. Sinai Hospital, and world's leading expert on Crohn's Disease

"Delves into the intricacies and intimacy of chronic illness . . . it illuminates the spirit. Important for those suffering from chronic illness and [their] families."  —Lauren Shuler Donner, film producer, You've Got Mail and the X-Men series, a lupus patient

"Whether you are doctor or patient, you see a bit of yourself in [this book]. . . . It demonstrates how profound the bond between doctor and patient can be—how much power it imparts."  —Susan Golick, founder, S.L.E. Lupus Foundation

"A deeply personal exploration on both sides of the medical scene—the patient who suffers and strives to retain her 'self,' and the physician who struggles to maintain a balance between knowing the truth while attempting to understand its implications."  —Virginia Ladd, president and executive director, American Autoimmune Diseases Related Association

"An extraordinary meditation on illness—a poetic, powerful and groundbreaking work that illuminates the resilience and strength of the human spirit."  —David Isay, executive director, Storycorps, and editor, Listening Is an Act of Love

About the Author

Alida Brill is a sociologist, an essayist, and the author of several nonfiction books, including Dimensions of Tolerance, Nobody’s Business, and A Rising Public Voice. She lives in New York City. Michael D. Lockshin, MD, is one of America's preeminent experts in the long-term care of chronically ill patients. He is the director of the Barbara Volcker Center for Women and Rheumatic Disease at the Hospital for Special Surgery and a professor of medicine and obstetrics-gynecology at the Weill Medical College of Cornell University in New York. He is the author of Guarded Prognosis and The Hospital for Special Surgery Rheumatoid Arthritis Handbook. He lives in New York City.


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Product Details

  • Hardcover: 224 pages
  • Publisher: Schaffner Press, Inc.; 3 edition (January 1, 2009)
  • Language: English
  • ISBN-10: 0980139406
  • ISBN-13: 978-0980139402
  • Product Dimensions: 5.8 x 1 x 8.5 inches
  • Shipping Weight: 1 pounds (View shipping rates and policies)
  • Average Customer Review: 4.6 out of 5 stars  See all reviews (37 customer reviews)
  • Amazon Best Sellers Rank: #2,054,751 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

Format: Hardcover

"This book is an intimate memoir about chronic illness, but a different one from those you usually see. It is a memoir that comes not from just one point of view but from the different sides of both [the chronically ill] patient and doctor [treating the chronically ill patient]...Although the subject matter is serious, and at times we [the authors] reach into the darkest sides of [chronic] illness, we view this as an optimistic book about hopes and dreams."

The above is found at the beginning of this captivating book authored by Alida Brill (the chronically ill patient whose illness began in adolescence) and Dr. Michael Lockshin (who treats her). Brill is a writer and author while Lockshin is one of the world's leading experts in the long-term care of chronically ill patients.

What is chronic illness? I can give you the sterile, clinical definition but I prefer Brill's description:

"Chronically ill people do not just live in a place that is different; our own bodies imprison us because our internal systems so wrongly understand us...Our bodies are unable to correct the faulty code of enemy and friend in the conversation between cell, tissue, and organ. We are threatened by our own interior workings--we are literally caught in the crossfire raging inside of us."

When a book is co-authored, you probably expect that each author works together on each chapter. This is not the case with this unique book. Instead each author, in most instances, writes her or his own alternate chapter. (In three instances, Lockshin writes two chapters in a row and in one instance, he writes three chapters in a row.) The result is actually a "dual memoir" between a long term, chronically ill patient and her dedicated doctor.
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Format: Hardcover
I myself am `dancing at the river's edge' with my oncologist in a long-term relationship that I never would have dreamt of before cancer began to disrupt my inner, most private self. At least my body had the grace--or the genetic strength to hold off the mutating cells until I was in my fifties. Author Alida Brill had to learn how to deal with a devastating auto-immune illness, an atypical form of Wegener's Granulamatosis, in her teens.

Unfortunately, the author's spectrum of symptoms didn't lead to an automatic diagnosis, and for years she was mistreated, and even told that her illness was `in her head.' This was a common experience for women of our baby boomer generation. For years I was told that my headaches were a part of my menstrual cycle and would just have to be endured, even though I exhibited classical migraine symptoms, and migraines ran strongly in my family (my father and great-grandfather).

"Dancing at the River's Edge" brought back long-suppressed anger in this reader, and the author is obviously angry about her sometimes contemptuous treatment by the medical community. In one episode, she talks about "the tears in my own eyes, the tears of rage--my own powerless rage."

After years of searching, Alida Brill finally found a physician--the co-author of this book--who treated her as a human being with a chronic illness, not as an `interesting case' or a `crank' or a `gomer' (Get Out of My Emergency Room!).

If this book makes you angry or sad, it should. Both authors are unflinchingly honest and there is no happy ending--no miracle cure. Alida Brill continues to live at river's edge, her physical body under attack by her own immune system. Dr.
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Format: Hardcover
This is one of the most thoughtful book I have read in quite some time. Like most healthy people, I have no concept of what it is like to be chronically ill. This book is NOT a "woe is me" type of book where the patient is always whining about how bad she feels. Far from it. It is really a thorough discussion (as much as one can discuss among these pages) of what it is like to never "quite feeling well." The doctor also writes of his viewpoints as someone who is the medical care-taker of patients' well-beings, and yet, he writes movingly of his thoughts and feelings as he watch his patients fight to maintain a life of their own while struggling with their diseases. He writes of many examples he has seen in the medical field, but while reminding the reader that in order for the patient to survive, she must constantly fight for her care as well as him. They must work together as a team, otherwise, Brill would be bouncing around in a medical system with no proper care, as it has happened earlier in her past. She was put in the hospital and a doctor who just looked at her as a number, not as a person, offended her deeply, until her colleague/doctor stepped in and urged her to follow the directions until she got better.

That story struck a nerve with me as my husband is struggling with a chronic disease and in the battle for our son's health care, we have run into so many so-called professional doctors who do not see us as people, but as numbers in a day filled with more numbers and complaints. We have been told time after time that there is nothing more that they can do for us and dismissed out of the office without any further suggestions (we had to do our own sleuthing to get our own answers).
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