Dancing at the River's Edge: A Patient and Her Doctor Negotiate a Life of Chronic Illness

by Alida Brill, Michael Lockshin, Michael D. Lockshin

Book Overview

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...

• Format: Paperback
• Language: English
• ISBN: 0982433271
• ISBN13: 9780982433270
• Release Date: March 2010
• Publisher: Schaffner Press
• Length: 224 Pages
• Weight: 0.84 lbs.
• Dimensions: 0.8" x 6.3" x 8.5"

Customer Reviews

Dancing at the River's Edge

Dancing at the River's Edge As a person who is both a PhD in health care social work and a chronically individual, this is the first patient and physician written text, which "talked" to me. I have given my organ transplant clients many books to read, but this is the first one that gave me self insight and validation of my coping mechanisms. Bonnie Siegal, PhD, LICSW

A Meeting of Minds and Hearts

On Alida Brill's first visit to Dr. Michael Lockshin's office, she saw on his desk a framed article about a young Philippine-American woman whose lupus was cured by a "witch doctor" in the remote Philippine village where she had been born. Having suffered since pre-adolescence from a rare, and misdiagnosed, autoimmune disease, Brill, "desperately afraid, relentlessly stubborn, and in profound denial," asked Lockshin why he displayed the article. "He said the article reminded him, more than anything else, that patients often know a great deal about their own form of autoimmune illness and that doctors should listen to their patients." Lockshin's answer--which communicated to Brill that he saw her as a person, not as a disease--began a "true dialogue" and a friendship that have lasted for nearly thirty years. It also led Brill and Lockshin to write the memoir Dancing at the River's Edge: A Patient and her Doctor Negotiate with Chronic Illness. In alternating chapters, the authors "portray chronic illness through [their] separate and very distinct prisms." They write about "issues of honesty and trust, control and power, denial and stubbornness, and a myriad of other things" they have confronted in their "singularly unusual relationship." Lockshin observes that unlike other books about illness, which focus on events, this book is about a lifetime. "What we have attempted to do," he writes, "is to look at how chronic illness transcends and transforms a person's life, from childhood, and early diagnosis, until...one's allotted time has elapsed. The lives of people like Alida are at times constrained and interrupted but are nonetheless fully lived." He also gives the reader a look at the man behind the title of "Doctor." He addresses how treating people who will never completely recover affects his sense of time, how he knows and does not know patients' unspoken thoughts and fears, how he hears the underlying meanings in patients' conversations, and how he deals with what Alida perceives as a "mountain" of messages on the "unending theme that announces how chronic illness affects their lives." Brill, who says she once would have considered writing about her own illness an invasion of privacy, explores topics she has never shared even with Lockshin. In a moving chapter entitled "Love and Loss," she provides a remarkably objective analysis of "heartgrief," "the loss of love and the loss of a hope for love," the "toughest lesson" she has had to learn, and one in which gender plays a role. Chronic disease, she says, robs women "of our sense of ourselves, of our identity as attractive women, of our privacy and dignity; and in an ironic twist,...also dig[s] away at a man's sense of his own maleness, in turn posing a threat to his core gender identity." Although the issue is almost never discussed, the experiences and emotions involved have an intense effect and might impact motivation, treatment, and the possibility of remission. Speaking of the "delic

An Insightful Look in a Patient/Doctor's Relationship

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 wit

The disturbing subject of power and chronic illness

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

"Chronic illness is a lifelong experience of dark storms and then unexpected blossoms"

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