Reviews & Articles about Dancing at the River’s Edge
* 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. Click here for the article as posted on the New England of Medicine website
Arthritis Foundation
Atlanta, GA 30309
jklippel@arthritis.org
* * * *
* From The Los Angeles Daily News Living with pain Story and Photo by Melissa Heckscher, Staff Writer Updated: 06/17/2009 04:07:07 PM PDT
Today is a good day for Alida Brill: She isn't in pain. Her body isn't covered in rashes. And she's not so tired she has to spend the day in bed. Tomorrow, on the other hand, may be another story. "Think of the worst toothache you've ever had in your life, then think of your entire body reverberating with that pain everywhere," said Brill, 60, a Lakewood native who has battled chronic autoimmune disease since she was 12. "It's all these things at once." Over the years, Brill has tried various medications and forms of treatment - gold shots, Indocin, Prednisone, immunosuppressants, anti-cancer drugs, antibiotics, infusion treatments, meditation. But the illness remains. And so she writes. "Yes, it is very hard to write when I am unwell because it often bothers my hands or the pain is just raging through me," said Brill, a longtime social activist who recently published her fourth book, "Dancing at the River's Edge: A Patient and Her Doctor Negotiate a Life With Chronic Illness" (Schaffner Press). In the book, Brill chronicles her 30-year relationship with her physician, Dr. Michael Lockshin.
"At the end of the day, the writing is what enables me to say, `Yeah, I'm ready to keep trying this. I'm ready to keep going forward,"' she said. The book doesn't just tell Brill's story; it tells her doctor's, too. Co-written by the New York rheumatologist, the chapters alternate between his and her points of view. It's an approach that reveals both sides of a disease: the day-to-day struggles of the patient and the concerns and conflicts of her doctor. "I thought other people who are chronically ill needed to see a different model than they may be experiencing in doctor-patient conversation," said Brill, who now lives in the Los Feliz district of Los Angeles. "I have the most extraordinary doctor." Brill was almost 30 when, after being shuffled from doctor to doctor, prescription to prescription in search of answers, she met Lockshin. From their first meeting, she said, she noticed something different about him. Namely, he listened to her. He wanted to understand. "There was trust," she said. "We can negotiate. We can talk." Since doctors don't fully understand what causes chronic autoimmune disease - and because symptoms mimic those of other illnesses - patients are often misdiagnosed. Doctors initially told Brill, for instance, that she had rheumatoid arthritis. Later, they suspected lupus. She was eventually diagnosed with Wegener's granulomatosis, a rare disorder that causes inflammation of the blood vessels and blood flow restriction to various organs.
It is a disease from which she'll likely never fully recover, and the symptoms range from fever and lethargy to rashes and extreme all-over pain. "I can't medicate, meditate, exercise, diet, or deny myself out of my medical status; I am a person with chronic illness," Brill writes in the book. "There are no mental powers or psychological tricks available that will eliminate this fundamental truth." As difficult as it is for the patient, it isn't easy for her doctor, either. Patients don't ever really get "better" from autoimmune disease. All a doctor can do is alleviate the symptoms. "`Better' is a very broad term. You can relieve pain, you can get them more mobile, you can assist them in activities in their daily life," said Lockshin, who treats hundreds of chronically ill patients a year and admits he is "emotionally attached" to all of them. "That's why my definition of rheumatology is those physicians best able to live with uncertainty." A tool for teaching Brill and Lockshin said they hope "Dancing at the River's Edge" will help young doctors learn to avoid what Lockshin calls "white coat syndrome." "I'm aware of colleagues of mine who work very hard never to know their patients because they think that's the right thing to do," Lockshin said. "I work with a lot of surgeons who only want to get to know a patient on an anatomical basis." Lockshin said doctors shouldn't be so focused on finding a diagnosis that they ignore their patient, valuing blood work and other scientific "evidence" over a patient's own words. "Not being involved with the patients and not hearing what they're saying is a big part of the problem," he said. "Doctors are taught to look at the labs and the objective evidence and make decisions based on that." Patients can learn from the book, too. Brill said her journey with illness has taught her how to embrace life. "When I was younger, I believed my disease was my enemy and I was determined that I was going to outfox it, outrun it, outwit it," she said. "At some point I understood that to live with it and not let it define me, I had to embrace it. Because in those moments that you can embrace the reality of your disease - no matter how much pain you're in - you get a different kind of strength to go on." Of course, Brill wouldn't have written the book if she didn't hope it would help others like herself. She based the book's title on the last stanza of a poem she wrote 10 years ago: Don't push the river, it flows by itself. it flows above us, and beneath us, but in the middle, we dance in the moonlight - at the river's edge. It's a metaphor that, for Brill, was decades in the making. "What I'm saying is that even when you feel like you're drowning - when you've got water above you and water below you and you're drowning - you can still find your riverbank and you can dance in the moonlight. "It's the dance of life." Click here for the article as posted on the LA Daily News website * * * * * From The Easthampton Star 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 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 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. Click here for the article as posted on the Easthampton Star website * * * * * Press Release: DANCING AT THE RIVER'S EDGE: A Patient and Her Doctor Negotiate Life with Chronic Illness SCHAFFNER PRESS KICKS OFF 2009 BY TAKING THE MEMOIR FORM TO NEW HEIGHTS WITH ALIDA BRILL’S AND MICHAEL D. LOCKSHIN’S PROVOCATIVE MEMOIR DANCING AT THE RIVER’S EDGE:A PATIENT AND HER DOCTOR NEGOTIATE LIFE WITH CHRONIC ILLNESS LOS ANGELES, CA- DECEMBER 10, 2008-Schaffner Press will publish Dancing at the River’s Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness January 8, 2009 in hardcover for an SRP of $23.99. The book will be supported by a series of signings, lectures and a radio tour starting in New York in early January, and rolling out across the country with emphasis on the east and west coast. The dual memoir is a personal look inside the world of the doctor/patient relationship, as the reader learns of the day-to-day struggles endured by a patient with chronic illness, as well as the deep concerns and conflicts of the doctor who is engaged in the ongoing decisions to help his patients maintain a reasonably “normal” and full life. The book is an intimate portrait of the delicate balance between doctor and patient, and will help people who struggle with chronic illness, and the friends and family who support them. All topics are discussed, ranging from sex and suicide, to careers, fears and loneliness. Publisher Tim Schaffner exclaims: “This book is a revealing and original look at chronic illness and the medical world. I am proud to publish this truly original dual memoir, and hope that it helps to bring comfort and understanding to all those living with, or caring for, a person struggling and living with a chronic illness.” The book is already gaining momentum and buzz in all spheres of influence, “DATRE is an extraordinary meditation on illness….” says Dave Isay, Executive Director, StoryCorps and editor of the bestseller Listening is an Act of Love.” Film Producer (You’ve Got Mail, The X Men trilogy) and Lupus patient, Lauren Shuler Donner says of the book,” it delves into the intricacies and intimacy of chronic illness…..It illuminates the spirit…..” and Paul Volcker states “Dancing at the River’s Edge…is about the trials and tribulations of chronic disease. I have been able to read it in advance and I tell you—I get no royalties from these books, but you ought to get a copy and read it. You won’t be able to put it down once you pick it up…” Alida Brill is a social critic, essayist and author of several non-fiction books, including, Dimensions of Tolerance, Nobody’s Business and A Rising Public Voice. She lives in New York City. Michael Lockshin, M.D., is one of the country’s leading experts in the long-term care of chronically ill patients. He is the Director of the Barbara Volcker 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. He lives in New York. Schaffner Press, Inc. is an independent small press publisher in Tucson, Az., specializing in provocative and socially-conscious works of fiction and non-fiction, both reprints and originals whose books are distributed for the trade by IPG: 312-337-0747. For further information on DANCING AT THE RIVER’S EDGE, visit the website at Schaffner Press or the following blogsites: news.schaffnerpress.com and Dancing at the Rivers Edge. Also for further information about the authors, visit their websites: Alida Brill and Michael Lockshin # # # PRESS CONTACT SCHAFFNER PRESS Tim Schaffner 520.743.1836 tim@schaffnerpress.com 
And the Art long,
And the right Time but an instant,
And the Trial precarious
And the Crisis most grievous.
Alida Brill and Michael D. Lockshin, M.D.
Schaffner Press, $23.95