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 "delicate and awkward" topic, she says, is "key to our survival."
Both Lockshin and Brill comment briefly but powerfully on the government's role in medical care. Writing about his service with the National Institutes of Health, Lockshin observes that in the process of government policy-making, "truth does not matter unless it can be cogently sold. I saw people who were untruthful and wrong speak fervently and compellingly and win, and I saw that, as a result of these false arguments, misdirected policy would ensue....The resulting policy was at times incoherent and often ignored."
Brill tells the story of a former ward-mate, a chronically ill working-class woman who died "a miserable heap of suffering" because she and her family were poor and uneducated and "without adequate protection of the information needed to make informed choices..." Having promised a friend that she would one day write about this inequality as "one of the greatest immoralities of our society,'" she states that health care reform must include not only universal insurance coverage, but "a way to provide an equality of understanding for all, regardless of economic status or level of education."
Although this book is sometimes difficult to read—as it must have been sometimes difficult to write—Brill and Lockshin see their memoir as "an offer of support, comfort, and hope" to "the millions of people who are chronically ill, and for their families, friends, and caregivers.... anyone who is living through a crisis that will not subside...," "anyone who is in the role of helping or being helped." Still, the authors believe "optimism is both possible and logical." Their story .... reminds us of the unpredictability of our circumstances but also reminds us to go forward, to negotiate, to communicate, in pursuit of a dream of remission and cure," one in which the chronically ill can "choose to fill our world with the promise of happiness, independence, and achievements."
Dancing at the River's Edge is a beautiful book, both informative and moving, written from the heart by people who, through their interactions over the years, and through the conversation recorded in this book, know each other and themselves intimately. It is introspective, often poetic, always honest—the creation of "a meeting of minds and hearts...a peculiar kind of magic."
Alida Brill is a writer and a feminist social critic. She is the author of Nobody's Business: The Paradoxes of Privacy, and co-author of Dimensions of Tolerance: What Americans Believe About Civil Liberties. More information about Brill can be found on her blog.
Rheumatologist Michael D. Lockshin, M.D., is an expert in long-term care of chronically ill patients. He is at present Director of the Barbara Volcker Center for Women and Rheumatic Disease at the Hospital for Special Surgery, and Professor of Medicine and Obstetrics-Gynecology at the Weill Medical College of Cornell University in New York. More information about Dr. Lockshin is available on his website.
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