Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness [Hardcover]

Alida Brill (Author), Michael D. Lockshin (Author)

Book Description

Publication Date: January 1, 2009

An invaluable resource for medical professionals, victims of chronic illnesses, and their loved ones, this dual memoir by a doctor and his longtime patient traces the growth of their unique friendship over a span of decades. By exploring the bond between caregiver and sufferer, this sensitive account evokes not only the constant day to day frustrations and emotional toll suffered by the chronically ill, but also an understanding of the mental struggles and conflicts that a conscientious doctor must face in deciding how best to treat a patient without compromising personal freedoms. In alternating chapters, the narrative explores the frustration, joy, despair, grief, and pain on both sides of the doctor-patient relationship.

Editorial Reviews

Review

"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.

Product Details

• Hardcover: 224 pages
• Publisher: Schaffner Press, Inc.; 1 edition (January 1, 2009)
• Language: English
• ISBN-10: 0980139406
• ISBN-13: 978-0980139402
• Product Dimensions: 8.5 x 5.9 x 1.2 inches
• Shipping Weight: 1 pounds (View shipping rates and policies)
• Average Customer Review: 4.6 out of 5 stars  See all reviews (30 customer reviews)
• Amazon Best Sellers Rank: #679,326 in Books (See Top 100 in Books)

Customer Reviews

Most Helpful Customer Reviews

12 of 13 people found the following review helpful:

5.0 out of 5 stars "Chronic illness is a lifelong experience of dark storms and then unexpected blossoms", March 14, 2009

By 

Stephen Pletko "Uncle Stevie" (London, Ontario, Canada) - See all my reviews
(TOP 1000 REVIEWER)   

This review is from: Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness (Hardcover)

XXXXX

"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.

Brill wrote this in her journal on her first encounter with Lockshin:

"I never met a physician who thought that treating me or being in my presence of my [chronic illness] would be a pleasure, but today I met MDL [Michael D. Lockshin] and he said, it would be a pleasure to be my doctor. He did not say that finding the exact name for [my chronic illness] matters as much as getting me to a better place than I have been. He saw me as Alida, not as Disease. I can't believe this has happened to me after all these years."

In this book, you'll learn about the everyday struggles endured by Brill and other issues (such as intimacy, suicidal thoughts, faith, and employment) faced by her in dealing with her chronic illness and the major concerns, conflicts, dilemmas, and other issues Lockshin must face in making life decisions to help, not only Brill, but his other chronically ill patients as well.

Be aware that this book is not easy to read. Intellectually it is an easy read. This book is not easy to read because it pulls on the heartstrings as Brill has to continually face an unstable life with chronic illness. For me, this book had special significance since I have a chronic physical disability. (After reading what Brill had to and has to endure, my problems, in contrast, seem like a walk in the park.)

Finally, who is this book written for? Answer:

(1) Anyone who wants to witness how human resilience and strength can cope with adversity.
(2) Anyone who wants to know what goes on inside the mind of that rare breed of doctor--a dedicated physician.
(3) Anyone who is living with a crisis that will not subside.
(4) Families, friends, and colleagues dealing with chronic illness.
(5) All those in the healing community.

In conclusion, Alida Brill tells us "this is the book I was never going to write." Dr. Michael Lockshin tells us that he "did not choose a career in chronic illness; this career chose me." Thank goodness these events turned out the way they did or else we would not have this book--a book unlike any other I have read!!

(first published 2009; prologue; 5 parts or 28 chapters; main narrative 250 pages; acknowledgements {Brill}; acknowledgements {Lockshin})

<<Stephen Pletko, London, Ontario, Canada>>

XXXXX

7 of 7 people found the following review helpful:

5.0 out of 5 stars The disturbing subject of power and chronic illness, April 12, 2009

By 

E. A. Lovitt "starmoth" (Gladwin, MI USA) - See all my reviews
(HALL OF FAME REVIEWER)    (TOP 100 REVIEWER)    (REAL NAME)   

This review is from: Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness (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. Lockshin continues to treat her `in sickness and in health' in a relationship that is sometimes closer and more honest than a marriage. After all, how many of us continue to hide our physical deterioration from our dearest friends and relatives? Chronic illness is a metaphor for growing old (if not the process itself). Both end in the same dark chasm, but for those of us who propose to dance until the final note is played, this is a powerful book.

***review copy supplied by authors

4 of 4 people found the following review helpful:

5.0 out of 5 stars An Insightful Look in a Patient/Doctor's Relationship, April 21, 2009

By 

Busy Mom (Ohio) - See all my reviews
(VINE VOICE)    (TOP 1000 REVIEWER)   

This review is from: Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness (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). However, my son and I do not have to live with a chronic disease like my husband, so our battles are short-lived. My husband is constantly trying to find a doctor that is willing to treat him as a person, even if there is no cure for his situation.

Isn't that what most patients want?

If you know anyone who is struggling with a chronic illness, I would suggest this book right away. It is an eye-opener for me, who is rarely ill and that is just from the common flu bugs that kids bring home from school. Yet, Alida Brill, who is the co-author of this book, has been fighting her disease since she was a teen-ager and still managed to carve out a wonderful life in academics (and is a friend of the feminist movement, Betty Friedan) in midst of hospital stays, taking care of her elderly parents who both got stricken with cancer at the same time. Not once did she whine about her lot in life. It was all stated with matter of factness and grace. She acknowledges that she is human but she is also blessed. Her co-author, Dr. Michael Lockshin, writes from the professional stand-point and yet convey a spirit of compassion. Now all doctors can take a lesson from him. In my opinion, this book should be required reading for medical school students before they graduate with their medical degrees and before doing their residencies somewhere. This book has a lot to teach young doctors and even nurses how important it is to have a strong relationship with your patients, with all of your patients, though you may never be as close to all of them as you'd like. It does offer insights on how to be more compassionate and more thoughtful as doctors interview each patient. Not all of them are going to require an in-depth treatment plan, but the point is, treat all patients fairly and with compassion.

This book is a must-read for everyone, regardless if they're sick or not. It is an important insight of a relationship between a doctor and his patient and together, they navigate the course of maintaining her disease, which, unfortunately, does not have a cure yet.