Co-authors Ms. Brill and Dr. Lockshin discussed their new book, Dancing at the River's Edge: A Patient and her Doctor Negotiate Life with Chronic Illness, with the group at the SLE Workshop at HSS. They discussed their shared dialogue over the many years they've known each other, spoke about the barriers in communication, and described how they bridge their own patient-doctor relationships.
Dr. Lockshin is a world-renowned rheumatologist, and he has known Ms. Brill for over 30 years. They discussed how they didn't intend to write the book, but through the course of interactions and many conversations about different issues affecting doctor communication and managing chronic illness, they were able to develop a series of concepts that "reflect those who are living with a chronic illness."
An important concept of long-term illness, which Dr. Lockshin explains, is just that - time.
As Dr. Lockshin related, time in the medical world can be viewed in seconds or in years of a series of different events or incidents. An example can be someone having a heart attack. While in clock time, things evolve in hours or days; in calendar time it may take weeks or months for something to happen or for decisions to be made, e.g., whether you can resume a particular activity.
Patients end up having to make choices according to those time frames and their own desire, which may or may not fit with the physician's wishes. That leads to a conversation and sometimes conflict, leading to differences in their understanding of illness.
As these conversations between Ms. Brill and Dr. Lockshin developed over time, the two decided to collaborate on writing a book.
Ms. Brill reflected that she didn't want to write about being a patient and being unwell. She explained that there are many things that can happen throughout one's life, but for her life, having control over her body was something she lacked. For a long period of time, she had carried the diagnosis of lupus, which she had assumed for a long time.
She felt, however, that when she walked into Dr. Lockshin's office, writing about her illness was in fact a choice she could make. She explained, "I knew I could choose what I wanted to write and publish with Dr. Lockshin."
They explained how they came to the decision to write the book and what that all involves. They both decided to come together and sit down with an agreement that they would each write a few pages, a rough draft, without asking each other for any suggestions. When they met to compare their rough drafts, Dr. Lockshin had written a chapter entitled, "I Did Not Choose." This chapter focuses on how Dr. Lockshin did not go to medical school anticipating that he would practice in this very field, but that in fact, the field of rheumatology - with its emphasis on chronic illness and autoimmunity - had chosen him.
Ms. Brill started her chapter with a focus on herself at age 12. At 59, she realizes that she has always had "something wrong with her." She begins with, "this is not the life that I would have chosen, but it is the life that I have lived." As they both looked at their drafts, they were both "startled," because that is when they found out they had a common ground, which they had not planned.
They explained that the structure of the book is unusual because each writes chapters and does so independently. The book focused on death, suicide, and remission. Dr. Lockshin wrote a chapter and Mr. Brill did the same, and then they compared their versions. They were so startled by how some of the chapters were alike and some were different, when they interpreted different events.
Ms. Brill then talked about what her journey was like. She has known Dr. Lockshin for over 30 years, and now she is 59. She has been to many physicians and, as a result, had become very jaded and guarded until she met Dr. Lockshin at HSS, who made her more comfortable in sharing her concerns with him.
When writing the book, she realized how depressed she had become over time and that the medication she has used has changed her. She never confesses everything to Dr. Lockshin -- that she once thought of suicide, for example, or that she was in a broken relationship. "I was not lying, but I was not revealing."
Dr. Lockshin's response to her chapter on "Desperation" was that he did actually know about her thoughts of suicide. Like the title of the book, life was like a dance, and when someone in a radio interview asked Ms. Brill who took the lead. Ms. Brill responded, "You would think that the physician is the one who does that, but in fact that isn't always true. Sometimes I would write and he would respond, it's like the opposite."
Dr. Lockshin discussed their level of communication (and the lack thereof, at times) and their being in tune with one another at other times, depending on the circumstances. He explained that as a physician, there were many things he knew she was thinking, and he knew she had an idea of what she wanted from him and expected from him.
From that, they both came to discover that there were many things that they were not letting each other know. He called this the "meta language" that a patient uses. He describes it in a metaphor, for example: an old radio that had an analog tuner, a dial that one rotates to find the station, and if he turns a little bit one way or the other he hears a different station - that is, a different message from the patient.
Over the course of time, Ms. Brill taught him how to listen to the different messages that he realized virtually everyone who walks into his office is giving, but not in fact saying. He further explains how this "meta language is more subtle than overt."
"It's just body language, phrases and varieties of other things that people indicate to a physician of problems that are much more real to them than where it hurts right now or how high the fever is," he continued. "But they generally don't state it, and sometimes they don't state it because they are embarrassed by it, or they simply don't want to share that type of information." Once he came to understand that, he started to listen more carefully and understand this language that people have been using.
Dr. Lockshin continued to explain how, although they think they are communicating, there are moments when they both felt they talked past each other and were not communicating at all.
Dr. Lockshin talked about a time when Ms. Brill felt really well, and he came across her on York Ave, and she said, "It's gone. The disease is gone and I'm well." He said at that time that he thought he was answering in a friendly and a truthful way, "Yes, that sometimes happens." And it turns out that when he read her chapter on that interaction it was a "real downer" for her because she thought the disease was actually gone.
He reflected on that and realized that he didn't say certain things on his mind like, "Yes, occasionally it can be gone, but it usually comes back." He knew he was preparing himself for "the crash" that will come. "I wasn't ready to join in the joy that she had, and because I knew there were other possibilities, I didn't know how much my comment hurt until she wrote it down."
Dr. Lockshin continues to explain the real message of the book; he states, "despite the illness, Ms. Brill continues to live a full life and could overcome the illness and not be defined by the illness." Ms. Brill talked about realizing that she is not the doctor's only patient.
Ms. Brill looked at a chapter Dr. Lockshin wrote about emails patients sent to him. She then replied by email asking him about how he gets through those mountains of problems; all the patients who, like her, have ongoing problems. Her email surprised him because he never saw it as a mountain of problems.
He explains, "I was seeing a patient one-on-one and was not seeing her as one of many with similar problems. It also made me realize that when I saw someone was doing very badly, I also saw someone who was doing really well. There were always good and bad, but it didn't weigh down on me. I look at a struggle of one doctor and one patient working together, and we keep on going together, and I'm an optimist that things will always get better."
Ms. Brill explained how she felt in the course of her illness and how when she was extremely ill, she never thought she would get past her thirties. But Dr. Lockshin said, "Oh don't worry, we'll grow grey together." And in fact, they did.
Ms. Brill further explained, "I think of all of us patients as heroic; we made a decision to define ourselves and not let anyone else define us. People must work to define themselves." She remembers when she was 38, when her body was "screaming in pain," she realized how she saw the field of rheumatology in a heroic way. Living without knowing when one will be sick or get better, there's this uncertainty, and the doctor has to live with that unpredictability as well. "Part of the revelation and beauty of this book is that you and your doctor are both heroes, and that for me is an amazing moment."
Dr. Lockshin explained what the book made him realize; when he read Ms. Brill's chapters, there were many moments that struck him as a rheumatologist about obvious things he had not seen. He didn't even realize what patients' experiences were at the time of their first visit. He assumed that his contact with his patients started when they walked through that door to see him.
But Ms. Brill made him realize that there was more to it that starts when the patient picks up the phone to call the office and makes the appointment, travels a long distance to the hospital, interacts with the secretary, and waits in the waiting room. One of the chapters focused on Ms Brill sitting in the waiting room going through the experience of the patient and what that all means.
He continued to emphasize that illness as doctors see it is a small part of the patient's experience; people don't come to their doctors just to get rid of their pain, but because they want to live a normal life. Ms. Brill expressed the possibility of living a life and functioning. Dr. Lockshin continued to explain why Ms. Brill decided on this project: "She wrote this book because she was a writer and she knows how to do it."
Ms. Brill reflected, "The book is not just about us, but it's about all of us – doctors and patients - and we hope for every patient to see some of themselves in this, while many doctors can say, yes I do that, and I don't do that. We are hoping that we're mirrors."
The title has an important meaning. Ms. Brill wanted to be a poet or actor, but she listened to her father who told her she couldn't make a living in that field and to instead choose to be a writer.
Ten years ago, she wrote the poem called "The River," and it begins with an old proverb that she knew, and the last stanza of the poem is in the book. From that last stanza, the publisher was able to derive the title.
"Don't push the river, it flows by itself. Its flows above and beneath us, but in the middle, we dance in the moonlight at the river's edge."
Ms. Brill further explains how the metaphor makes no sense. "You have water above you, you have water below you. That's what chronic disease is, you're drowning, you don't see the way up or out. Patients are in the water and seeing the moonlight as they are coming up."
"What I was trying to say in the poem and what our book is about," she continued, "is that, no matter how horrific some moment/situation is - like a flare or an episode, where you feel you're drowning - you can still find a riverbank and you can dance. Dancing is a metaphor that we use to live in. It's a book about home, provision, and it's for all of us. For anyone with a chronic illness or anyone who is close to them."
Summary by Lay Tep, SLE Workshop Coordinator and Social Work Intern