* From the Spring 2010 issue of Pharos of Alpha Omega Alpha Honor Medical Society

Dancing at the River’s Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness

Alida Brill and Michael D. Lockshin, MD Schaffner Press, Tucson, Arizona, 2009

Reviewed by Ralph C. Williams, Jr., MD (A!A, Cornell University, 1953)

This is a very good book written jointly by Alida Brill, a patient who has suffered almost all her life from chronic autoimmune disease—finally diagnosed when she was middle-aged as Wegener’s Granulomatosis—and her doctor, Michael Lockshin, a distinguished rheumatologist at the Hospital for Special Surgery in New York City. The book’s alternating sections or chapters are written either by the patient or by her physician and provide fascinating insight into the thoughts, fears, and interpretations of symptoms and flare-ups of the disease, first from the patient’s viewpoint, and then similar, sometimes not mirror, views of what seems to be happening from the attending doctor’s vantage point.

During the course of constructing the framework of this ongoing narrative concerning the pattern and manifestations of the disease, which begins when Ms. Brill is a teenager and finally is correctly diagnosed when she is in her fifties, Ms. Brill (an accomplished author and social scientist herself) and Dr. Lockshin become good friends as well as patient and doctor. Their negotiations about treatment represent the core thread of this book.

The book deals with material that is very important but often overlooked or unconsciously given short shrift by many attending physicians, including desertion of patients who are hopelessly ill by marital partners or other family members, as well as patients’ reactions to being dropped or discarded because they are and will continue to be chronically ill.

For her appointments with Dr. Lockshin, Ms. Brill rides up in elevators often packed with other patients and their relatives on their way to see their particular physicians. When she sees children with deforming arthritis or other physical malfunctions, she has many memory flashbacks of her own times with similar problems as a child or teenager. Her tempered observations of these children’s plights are quite moving and memorable.

One feature of this book that provides a good deal of entertainment is the often quite different interpretations of various actual happening or flare-ups of the patient’s disease from the patient and doctor perspectives. After her diagnosis has been established, Ms. Brill reads in the Merck Manual that her disease is invariably fatal. Naturally, this information sets the stage for her and clearly influences her choices and plans for continuing work and her relationship to her aging parents.

One of the most remarkable elements of this book is that we are presented with situations that many practicing physicians or former active doctors have to deal with every day: that patients do not tell us the things that are foremost in their minds or what their expectations are of us as their doctors.

This book is a moving account of a patient and her doctor’s relationship during the course of a chronic, often fatal, disease. Moreover, it provides an entertaining point of view for many of us who have to deal with medical and psychological care for such patients.

All physicians who treat patients with serious types of autoimmune disorders, such as systemic lupus erythematosus, scleroderma, or rheumatoid arthritis, have observed the only-too common phenomenon of husbands or wives of such seriously ill individuals at some point throwing up their hands and saying that they have had enough, then leaving the marriage or relationship for good. This sort of fearful desertion may be more likely to occur in patients with autoimmune diseases that often wax or wane repeatedly over a lifetime, as compared with patients who have far advanced or inoperable cancer, when the spouse knows that death soon to come will end the relationship. In this book, Ms. Brill faces this very difficult crisis herself as her husband leaves her. Instead of being embittered, she chooses remarkably to analyze what has happened and to attempt to define what actually motivated her husband to leave. This section of the book was for me an eye-opener and an education in the fact that some people are big enough and sufficiently honest with what has happened to them to accept it as a given and then move on. All physicians are accustomed to dealing with their patients’ personal tragedies; in this case Mr. Brill’s reaction to her partner’s leaving was an uplifting insight into what a brave person can muster in spite of her circumstances.

I recommend this book highly.

Dr. Williams is Emeritus Professor of
Medicine at the University of New Mexico
and the University of Florida—Gainesville.
His address is:
624 East Alameda, Unit 13
Santa Fe, New Mexico 87501
E-mail: coolypatch22@cybermesa.com

 

 

 

 

 
* From 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
jklippel@arthritis.org

 

 

 

 

 
* From the Easthampton Star (3/18/09)

The Conversation

By Jay I. Meltzer, M.D.

(03/18/2009) “Dancing at the River’s Edge” is all about one particular physician-patient interaction in the diagnosis and management of a complex chronic disease (mixed connective tissue autoimmune disease) so rare and fickle that most of the treatment decisions are problematic, depending heavily on seasoned clinical judgment.

Their medical relationship is closely followed over 25 years, and much happens outside it, but they stay together, work out many profound complexities, and both profit from the experience. The devil is in the details recorded in this close analysis of the medical facts and management, written in alternate chapters from two points of view by the doctor, Michael D. Lockshin, and the patient, the writer Alida Brill (referred to as AB in the book).

We watch these two prisoners of the knowledge that human beings are never entirely rational in their medical decision-making and therefore need open-minded conversation to weigh all elements appropriately. Both write well and, despite abundant detail, this, the longest case report I have ever read, is never boring.

This is Ms. Brill’s story, her pilgrimage toward the self-knowledge required to bear, gracefully, a lifelong incurable illness that comes and goes. There are ecstatic moments of “remission,” feeling normal, which tempt the illusion that health is possible. Then sudden devastating “flares,” wipeouts that cause total body collapse.

From her teens to near 30, she could not face the reality that her disease would never go away completely. After finally accepting that fate, she had to fight the extremely well-publicized “mind-body” movement of alternative medicine, which encouraged patients to blame themselves for their diseases in order to cure themselves. For years she believed her disease was somehow her fault and sought inappropriate self-flagellating rationalizations to prove it, a common error. Great relief came simply from realizing it wasn’t her fault, it was just unfair.

Dr. Lockshin is extraordinarily well informed, a respected scientist and recognized expert in his field. Yet he is a profoundly Hippocratic doctor with a principled facility for human interaction shaped by an educated restraint. He has the ability to hypothesize and sketch his patient’s future course even as he knows it is unknowable. He allows enough time to be an imaginative listener, although we are not told specifically how much.

His goal is to forge an alliance based on trust: “AB will tell me what I need to know and she will trust my advice, but we will always decide together after thorough airing of risks and benefits. Although she realizes I have the upper hand, we pretend equality, while I try mightily to keep arrogance at bay.” This leads to the goal: true conversation. Technically astute, Dr. Lockshin’s primary focus is always practical, what can be done to relieve suffering today.

Along the way, Ms. Brill experienced abuses of medical power, and survived them. She also learned how to live in the regulated monastery of her disease, with its appointments, tests, waiting for test results, needles, hospitalizations, rules, and restrictions. These created in her mind an “isolation” that is ameliorated by the collaboration and conversation with her doctor but never entirely eradicated. This critical amelioration of suffering demonstrates the ability of a doctor’s words to heal, Hippocratically as well as scientifically.

In a painful, elegiac chapter on love, romance, and marriage while suffering from a long-term chronic incurable disease, Ms. Brill learns her “toughest lesson”: that the loss of husbandly love, even the hope of ever being loved, is a tragic fact, often delayed but inevitable. She fights this knowledge by equating love with dependency on a man, and then rejects that weakness in favor of relying solely on herself.

For evidence of spousal perfidy she brings in her “friend and mentor,” the late Sam Bloom, and his book “The Word as Scalpel.” Ms. Brill refers to the text as an example of a doctor’s ability to “cut” a patient just as deeply as a scalpel simply by using the wrong words. She then extends the metaphor, “so too can a spouse’s words cut into the soul of the chronically ill,” and tells the story of her betrayal.

But Bloom’s title was a quotation from the physiologist L.J. Henderson, “A doctor can damage a patient as much with a misplaced word as with a slip of the scalpel,” which referred only to unintended, not deliberate, actions. Moreover, Bloom’s main point was to hope that today’s physicians achieve that rich communication wherein their words are so value-laden with science and humanity that they can heal as directly as the guided scalpel cuts.

Dr. Lockshin is a shining example of Bloom’s ideal. Instead of making that connection, Ms. Brill misinterprets Bloom in an attempt to get even with her husband. The reader understands the scorn, which later in the book she seems to mitigate.

I believe Sam Bloom would have loved this book and Dr. Lockshin’s words, but he also would have been the first to point out that the physician’s position in society is determined by the society he serves. That today’s health care has shifted from a social service to an industrialized product. Managed care has overwhelmed human relations. Innovative programs to counteract this tendency are, unfortunately, “puny” compared with the massive structural pressures (like 15-minute office visits) surrounding the medical profession.

The sociologist Bloom goes on to accept blame: “Medical sociology has abandoned its mission to alert the public to that failure.” This book, by showing what is radiantly possible, demonstrates tragically what we are losing.

Dr. Lockshin devotes much effort to the concept of Mayan time, ostensibly to help a patient’s understanding of disease, though it is not part of any medical tradition. It does express Dr. Lockshin’s exceptionalism, however, highlighted by “I do not think of myself as part of a larger class”: There is just the patient — “you” — and “me” in a private struggle. He presents himself as “sui generis,” as though he had no training in a medical tradition that shaped his methodology. What about Hippocrates? The First Aphorism tells the doctor’s story.

Life is short
And the Art long,
And the right Time but an instant,
And the Trial precarious
And the Crisis most grievous.

Hippocrates adds, “It is necessary for the physician to provide not only for the needed treatment, but to provide for the sick man himself, and for those beside him, and for his outside affairs.”

Two thousand five hundred years ago on the tiny island of Cos in the Greek archipelago, the first real doctor understood the gravity of the medical encounter succinctly stated in the first line. The Greek word for art was “techne,” also meaning skill, craft, science, what we can learn and know. Here time is short, we can learn all our lives but our knowledge may still not be enough (though with the new molecular biology this may be changing). The medical decision is often made under the pressure of time; one day, one hour, sometimes one instant too soon or too late and all is lost.

And after deciding, the “Trial,” which means the treatment, is filled with waiting and uncertainty. And after that comes the “Crisis”: Will the outcome be determined by the doctor’s techne or by fate? Here the doctor holds the patient’s hand. Perhaps without realizing it, Dr. Lockshin is solidly in the Hippocratic tradition, as is all great medicine.

How does Ms. Brill end her story? Today there are more women than men in medical school so it was not surprising that in a recent hospitalization she was surrounded by women physicians, many of whom knew her work in the field of women’s rights. Some were already admirers, some Googled her. She suddenly realized that her tragic life had taken on new meaning. She had created something valuable to others out of her suffering. She was not just a passive victim.

There is enough satisfaction in that realization to keep her going forward, and the reader is anxious to see what comes next.

“Dancing at the River’s Edge”
Alida Brill and Michael D. Lockshin, M.D.
Schaffner Press, $23.95

—

Alida Brill had a house in East Hampton for many years. She is the author of “Nobody’s Business: The Paradoxes of Privacy” and “A Rising Public Voice: Women in Politics Worldwide.”

Jay I. Meltzer, M.D., is clinical professor of medicine emeritus at the Columbia College of Physicians and Surgeons. A part-time resident of Water Mill, he has taught medical ethics for 25 years.