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Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness
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 and conflicts that a conscientious doctor must face in deciding how best to treat a patient without compromising personal freedoms. In alternating chapters, the narrative explores the frustration, joy, despair, grief, and pain on both sides of the doctor-patient relationship.
224 pages, Hardcover
First published January 1, 2009
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Displaying 1 - 10 of 10 reviews
February 14, 2009
‘Visiting and inhabiting the world of chronic illness are two very different things.’
This book has a particular resonance for me: my autoimmune disease is causing eye related problems and I am currently legally blind in my left eye. From 6/6 to 6/60 in three months is a big jump. And so, I have a particular interest in chronic illness especially those with an autoimmune component.
I read this book during a day, have dipped into and out of it since and will continue to do so. I am simultaneously enlightened, inspired and saddened.
We are all touched by chronic illness, each in our different ways. Some of us feel it, some of us observe it, some of us care for people fighting with or suffering from it, many of us know or work alongside sufferers, while others try to provide answers.
And sometimes, one person can fill a number of these roles.
Chronic illness is an umbrella label for a number of different diseases and disorders that turn our individual bodies and minds into enemies rather than friends. Sometimes, the signs are obvious but often they are not. Chronic illness is often compartmentalized into neat medical chunks which may make treatment ‘easier’ for medical practitioners but often does little for patients who see themselves as progressively depersonalised through this segmentation.
I applaud Ms Brill and Dr Lockshin for sharing their experiences with readers. Medicine cannot provide all of the answers and may not, yet, have identified all of the questions. Doctors and patients dance an intricate pavane but often with differing steps because of different senses of time. I think the hardest thing about chronic illness is knowing, and then accepting, that containment rather than the cure is the most likely positive outcome at the individual level in real time.
In bringing their shared experiences and unique perspectives together in this book, Ms Brill and Dr Lockshin invite us to read, absorb and reflect. I thank them for taking the risk of inviting strangers into their thoughts and experiences.
This book does not contain easy answers but it does enable you to see some of the milestones on the journey and, perhaps, to read time better than I can. I would recommend this book unreservedly to those of us living with chronic illness, and for all of those involved in caring for or about people. I think that includes most of us.
This book has a particular resonance for me: my autoimmune disease is causing eye related problems and I am currently legally blind in my left eye. From 6/6 to 6/60 in three months is a big jump. And so, I have a particular interest in chronic illness especially those with an autoimmune component.
I read this book during a day, have dipped into and out of it since and will continue to do so. I am simultaneously enlightened, inspired and saddened.
We are all touched by chronic illness, each in our different ways. Some of us feel it, some of us observe it, some of us care for people fighting with or suffering from it, many of us know or work alongside sufferers, while others try to provide answers.
And sometimes, one person can fill a number of these roles.
Chronic illness is an umbrella label for a number of different diseases and disorders that turn our individual bodies and minds into enemies rather than friends. Sometimes, the signs are obvious but often they are not. Chronic illness is often compartmentalized into neat medical chunks which may make treatment ‘easier’ for medical practitioners but often does little for patients who see themselves as progressively depersonalised through this segmentation.
I applaud Ms Brill and Dr Lockshin for sharing their experiences with readers. Medicine cannot provide all of the answers and may not, yet, have identified all of the questions. Doctors and patients dance an intricate pavane but often with differing steps because of different senses of time. I think the hardest thing about chronic illness is knowing, and then accepting, that containment rather than the cure is the most likely positive outcome at the individual level in real time.
In bringing their shared experiences and unique perspectives together in this book, Ms Brill and Dr Lockshin invite us to read, absorb and reflect. I thank them for taking the risk of inviting strangers into their thoughts and experiences.
This book does not contain easy answers but it does enable you to see some of the milestones on the journey and, perhaps, to read time better than I can. I would recommend this book unreservedly to those of us living with chronic illness, and for all of those involved in caring for or about people. I think that includes most of us.
October 27, 2016
Patient Alida Brill and her physician Michael Lockshin, MD collaborated on the creation of this book. It's divided into sections written by each of them, with more from Alida than Dr. Lockshin.
Alida Brill has lived with chronic illness since her teens. And in her career she's fought for women's rights and for women's issues. She has lived a full and rewarding life, despite the incredible daily challenge of her illness. I highlighted countless passages from Alida as I read. She is eloquent and tremendously insightful about the world of chronic illness.
Her connection of the desire for love and support with feminism and the male ego is nothing short of brilliant. She writes, "Chronic illness in a female partner gnaws at a man’s sense of control, his sense of power, his sense of being victorious against danger. Call it what you will, and if you wish, go ahead and accuse me of being politically incorrect. Whatever you want to label my remarks, it remains the case that a chronically ill woman threatens a man’s sense of himself, and calls into question his feelings of success as a man, a lover, a “white knight.”"
I also appreciated Alida's section on the tendency of patients with chronic illnesses to blame themselves for their illness. And why we shouldn't!
The sections from Dr. Lockshin didn't connect as strongly for me, perhaps because I'm a patient rather than physician. I found him to be caring and knowledgeable, but certainly not transcendent like Alida. Essentially, he's cultured and curmudgeonly older man with genuinely sincere intentions.
Here's an example: "Powerful thing this, the training and license that grant me the ability to destroy or sustain another’s dream. Sobering and frightening and nauseating thing this, the knowledge that I sometimes actually do exercise this power. Humbling thing this, to be able to use this power, once in a while, to salvage lethal mistakes, made seriatim, on a cheeky Puerto Rican kid with a tattoo."
I've read many books about living with chronic illness. I'm sure this will remain one of my favorites for a long time!
Thanks to NetGalley, Schaffner Press, and the authors for the opportunity to read a free digital copy in exchange for an honest review.
Alida Brill has lived with chronic illness since her teens. And in her career she's fought for women's rights and for women's issues. She has lived a full and rewarding life, despite the incredible daily challenge of her illness. I highlighted countless passages from Alida as I read. She is eloquent and tremendously insightful about the world of chronic illness.
Her connection of the desire for love and support with feminism and the male ego is nothing short of brilliant. She writes, "Chronic illness in a female partner gnaws at a man’s sense of control, his sense of power, his sense of being victorious against danger. Call it what you will, and if you wish, go ahead and accuse me of being politically incorrect. Whatever you want to label my remarks, it remains the case that a chronically ill woman threatens a man’s sense of himself, and calls into question his feelings of success as a man, a lover, a “white knight.”"
I also appreciated Alida's section on the tendency of patients with chronic illnesses to blame themselves for their illness. And why we shouldn't!
The sections from Dr. Lockshin didn't connect as strongly for me, perhaps because I'm a patient rather than physician. I found him to be caring and knowledgeable, but certainly not transcendent like Alida. Essentially, he's cultured and curmudgeonly older man with genuinely sincere intentions.
Here's an example: "Powerful thing this, the training and license that grant me the ability to destroy or sustain another’s dream. Sobering and frightening and nauseating thing this, the knowledge that I sometimes actually do exercise this power. Humbling thing this, to be able to use this power, once in a while, to salvage lethal mistakes, made seriatim, on a cheeky Puerto Rican kid with a tattoo."
I've read many books about living with chronic illness. I'm sure this will remain one of my favorites for a long time!
Thanks to NetGalley, Schaffner Press, and the authors for the opportunity to read a free digital copy in exchange for an honest review.
February 23, 2009
I prefer to not think of myself as someone with chronic disease. Since at least age 7 I've been on some sort of allergy pill for hayfever. Sneezine, runny nose, itchy eyes & occasional bloody noces were just life not a disease. But after having gestational diabetes and watching my mother die so young, I began reflecting on her own journey of chronic disease. I was barely in high school when she was diagnosed with rheumatoid arthritis - me about 13, her 31. I'm older than that already...and I can feel it. I've forced myself to think of people with chronic disease as someone other than me out of fear. Fear that I won't be able to live my life the way I want.
And that's just where Dancing at the River's Edge fits into my life, perhaps into yours. Alida has lived a full life, not the life one aspires to with her many trips to the hospital, but a life rich enough to be proud of. At the same time, Dancing also gives us a peek into our doctor's head. Alida's long-time doctor, Dr. Lockshin, takes his turn in telling his side of the story - both as Alida's provider, but also as a doctor who knows that most of his patients will never recover or get well. Kids don't grow up wishing to be doctors of people they can't cure.
In the end, Dancing is a book of hope. Hope that despite the pills, the IVs, the hours spent on that damn paper-lined table that we will still have full and rich lives. That we are still owed love and respect. That our doctors are struggling with us as well. This fact may scare some, but I am actually comforted by this tidbit. It flattens the playing field. It makes me think that perhaps some of us are partners in healing, not just receivers of wisdom in the form of a pill.
**excerpted from my full review on my blog.
And that's just where Dancing at the River's Edge fits into my life, perhaps into yours. Alida has lived a full life, not the life one aspires to with her many trips to the hospital, but a life rich enough to be proud of. At the same time, Dancing also gives us a peek into our doctor's head. Alida's long-time doctor, Dr. Lockshin, takes his turn in telling his side of the story - both as Alida's provider, but also as a doctor who knows that most of his patients will never recover or get well. Kids don't grow up wishing to be doctors of people they can't cure.
In the end, Dancing is a book of hope. Hope that despite the pills, the IVs, the hours spent on that damn paper-lined table that we will still have full and rich lives. That we are still owed love and respect. That our doctors are struggling with us as well. This fact may scare some, but I am actually comforted by this tidbit. It flattens the playing field. It makes me think that perhaps some of us are partners in healing, not just receivers of wisdom in the form of a pill.
**excerpted from my full review on my blog.
June 23, 2013
If only all doctors were like this. Both authors bring great insight into the patient/doctor relationship that exists in chronic illness. Alida shows what it's like not just to live with chronic disease (luckily for her, able to have a successful professional life), but all of the loss that comes with it--relationships, friends, family--how many people walk away because they don't understand and it becomes too much to deal with; she does an incredible job of explaining the struggles almost all of those living with chronic illness face--bad doctors, missed diagnoses, self blame, living with a body that's revolting. Dr. Lockshin does an excellent job explaining what it's like to be on the medical side of the fence--taking care of patients who will never be cured, helping them navigate their treatment, learning every step of the way, but never actually knowing what it's like to be one of them.
April 19, 2023
RICK “SHAQ” GOLDSTEIN SAYS: “WILL YOU PLEASE BE MY DOCTOR?”
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This book is a very unique version of a “HE SAID-SHE SAID” story… but instead of jilted or argumentative lovers… it’s an emotional… touching… and integration… of two disparate souls. One soul is embedded in a frail body encapsulated by a complex form of an autoimmune disease since childhood… and the other soul resides within a medical doctor’s educated body guided by fate… to specialize in such diseases… and so they meet… under sadly dire circumstances. The patient and co-author Alida Brill has suffered since adolescence… too many illnesses and diseases… to totally describe… from horrid rashes… arthritic and swollen joints… high fevers… loss of energy… expelling ghastly fluids… bulging eyeballs… and many other horrific physical oddities… that medical science not only can’t cure… but can’t aptly describe. A childhood like this… surely doesn’t exist in fairy tales of princesses and princes.
The Doctor and co-author Michael Lockshin… early on realizes how much he doesn’t know… and along with the laundry list of ailments that accompany his new patients… he is more often than not… burdened with the cumulative effects… of the wretched lack of true human compassion by former Doctor’s… that has added to the burden of these desolate human beings… that find their way to his clinic. These brave diseased human beings… who along with their daily fight for life… are fighting their own personal battle… to prove to their families… prove to their Doctor’s… prove to their employers… but more importantly to themselves.. That “I AM ME! I HAVE MY OWN LIFE TO LIVE! THE DISEASE IS NOT ME!”
This story is almost written like two personal separate diaries. One from the patient… and one from the Doctor. The patient already (unfortunately) knows who she is… the Doctor… mainly because of the patient Alida… starts to painfully learn… who he should become. And the “diaries” are interspersed. I feel compelled to point out that I am a brain tumor survivor… and I almost died during brain surgery on February 13, 2003… so there are a number of scenes in the book… that I don’t know whether to applaud… cry… or do both… as Alida describes feelings that I lived through. One such scene is when Alida is now a grown woman… and is waiting in the lobby for her Doctor’s appointment… and there are poor, innocent, little girls… with the same type of autoimmune disease she has. As Alida shares her thoughts with the reader… of her desire to go across the room and cradle the children with love… and tell them there’s hope… that they can live to be her age… yet she knows society in the world we live in… would not allow it. It’s impossible not to feel her anguish. Two –three weeks after my brain tumor surgery… I was taken back to my surgeon by my son with what I called my “special-haircut”. Half my head was shaved… and there were between 50-60 staples in my head. On that particular day… the waiting area for my Doctor was overflowing. Everyone else had a full head of hair. I whispered to my son: “as bad as I have it… I’ve at least been through it… these poor people have no idea what to expect. I wish I could talk to them and explain what they’re going to go through.” I said it then and I say it now… exactly one week away from the six year anniversary of my miracle survival…”NO DOCTOR CAN HELP A PATIENT GET READY FOR WHAT THEY’RE GOING TO GO THROUGH… BETTER THAN I CAN!” Alida said basically the exact same thing about her affliction. (Note: I took my yearly brain MRI yesterday… and now I have my anguish filled two week wait… to find out if I’m still okay.)
The growth that is displayed in this book… is by far more pronounced on Dr. Lockshin’s side. He has to learn what patients are really going through… it seems it is not sufficiently taught in medical school… and thank goodness Alida assists in that area. Without giving away too much of the story… when Alida… despite relapse after relapse… is put in the position of taking care of her two elderly parents… any person with a drop of empathy in their body… will have a feeling in the pit of their stomach that is hard to describe.
One of the most educational segments for any patient… or friend… or relative of a patient… to make note of… is the Doctor’s segment on medical trials.
“CAN, AND SHOULD MY PATIENTS BE GUINEA PIGS? WHEN A NEW DRUG IS BEING TESTED TO TREAT HER DISEASE, SHOULD I PUSH HER FORWARD OR TELL HER TO STAY AWAY? LET’S NOT FANTASIZE ABOUT INFORMED CONSENT AND FREE CHOICE HERE. EVERY DOCTOR KNOWS THAT THE WAY HE PRESENTS AN OPTION, THE WAY IN WHICH HE OR SHE SAYS, “IF YOU WERE (MY WIFE, PARENT, SIBLING, CHILD), HERE IS WHAT I’D DO” DETERMINES THE PATIENTS’ RESPONSE NINE TIMES IN TEN.”
There are four phases in trials. I’ll just give you the description of phase I and I guarantee you will never forget it… even in time of crisis. “A PHASE I TRIAL TESTS TOXICITY AND DOSE, NOTHING MORE. IT IS SMALL-SCALE, INVOLVING ONLY A FEW PERSONS WHO MAY BE NORMAL OR WHO MAY BE ILL WITH A SPECIFIC DISEASE. THE DRUG WILL HAVE BEEN GIVEN TO MICE AND MONKEYS; IT APPEARS TO BE SAFE. A PHASE I TRIAL ASKS THIS QUESTION: WHAT HAPPENS WHEN WE GIVE THIS DRUG TO A HUMAN?” The results of one such test in 2006 in England, “four of six healthy volunteers, each having been paid L150 to test increasing doses of a new product, rapidly became critically ill and ended up in intensive care wards. All survived, but their recoveries took weeks.”
This is a unique look at chronic illness from an experienced patient… and a Doctor learning firsthand the human part… of treating the chronically ill. Any chronically ill patient… their family and friends… should definitely read this book. I feel it should also be made a reading requirement in medical school… so more Doctor’s will look patients in the eye… and not just stare at their chart.
------------------------------------------------------------------------------
This book is a very unique version of a “HE SAID-SHE SAID” story… but instead of jilted or argumentative lovers… it’s an emotional… touching… and integration… of two disparate souls. One soul is embedded in a frail body encapsulated by a complex form of an autoimmune disease since childhood… and the other soul resides within a medical doctor’s educated body guided by fate… to specialize in such diseases… and so they meet… under sadly dire circumstances. The patient and co-author Alida Brill has suffered since adolescence… too many illnesses and diseases… to totally describe… from horrid rashes… arthritic and swollen joints… high fevers… loss of energy… expelling ghastly fluids… bulging eyeballs… and many other horrific physical oddities… that medical science not only can’t cure… but can’t aptly describe. A childhood like this… surely doesn’t exist in fairy tales of princesses and princes.
The Doctor and co-author Michael Lockshin… early on realizes how much he doesn’t know… and along with the laundry list of ailments that accompany his new patients… he is more often than not… burdened with the cumulative effects… of the wretched lack of true human compassion by former Doctor’s… that has added to the burden of these desolate human beings… that find their way to his clinic. These brave diseased human beings… who along with their daily fight for life… are fighting their own personal battle… to prove to their families… prove to their Doctor’s… prove to their employers… but more importantly to themselves.. That “I AM ME! I HAVE MY OWN LIFE TO LIVE! THE DISEASE IS NOT ME!”
This story is almost written like two personal separate diaries. One from the patient… and one from the Doctor. The patient already (unfortunately) knows who she is… the Doctor… mainly because of the patient Alida… starts to painfully learn… who he should become. And the “diaries” are interspersed. I feel compelled to point out that I am a brain tumor survivor… and I almost died during brain surgery on February 13, 2003… so there are a number of scenes in the book… that I don’t know whether to applaud… cry… or do both… as Alida describes feelings that I lived through. One such scene is when Alida is now a grown woman… and is waiting in the lobby for her Doctor’s appointment… and there are poor, innocent, little girls… with the same type of autoimmune disease she has. As Alida shares her thoughts with the reader… of her desire to go across the room and cradle the children with love… and tell them there’s hope… that they can live to be her age… yet she knows society in the world we live in… would not allow it. It’s impossible not to feel her anguish. Two –three weeks after my brain tumor surgery… I was taken back to my surgeon by my son with what I called my “special-haircut”. Half my head was shaved… and there were between 50-60 staples in my head. On that particular day… the waiting area for my Doctor was overflowing. Everyone else had a full head of hair. I whispered to my son: “as bad as I have it… I’ve at least been through it… these poor people have no idea what to expect. I wish I could talk to them and explain what they’re going to go through.” I said it then and I say it now… exactly one week away from the six year anniversary of my miracle survival…”NO DOCTOR CAN HELP A PATIENT GET READY FOR WHAT THEY’RE GOING TO GO THROUGH… BETTER THAN I CAN!” Alida said basically the exact same thing about her affliction. (Note: I took my yearly brain MRI yesterday… and now I have my anguish filled two week wait… to find out if I’m still okay.)
The growth that is displayed in this book… is by far more pronounced on Dr. Lockshin’s side. He has to learn what patients are really going through… it seems it is not sufficiently taught in medical school… and thank goodness Alida assists in that area. Without giving away too much of the story… when Alida… despite relapse after relapse… is put in the position of taking care of her two elderly parents… any person with a drop of empathy in their body… will have a feeling in the pit of their stomach that is hard to describe.
One of the most educational segments for any patient… or friend… or relative of a patient… to make note of… is the Doctor’s segment on medical trials.
“CAN, AND SHOULD MY PATIENTS BE GUINEA PIGS? WHEN A NEW DRUG IS BEING TESTED TO TREAT HER DISEASE, SHOULD I PUSH HER FORWARD OR TELL HER TO STAY AWAY? LET’S NOT FANTASIZE ABOUT INFORMED CONSENT AND FREE CHOICE HERE. EVERY DOCTOR KNOWS THAT THE WAY HE PRESENTS AN OPTION, THE WAY IN WHICH HE OR SHE SAYS, “IF YOU WERE (MY WIFE, PARENT, SIBLING, CHILD), HERE IS WHAT I’D DO” DETERMINES THE PATIENTS’ RESPONSE NINE TIMES IN TEN.”
There are four phases in trials. I’ll just give you the description of phase I and I guarantee you will never forget it… even in time of crisis. “A PHASE I TRIAL TESTS TOXICITY AND DOSE, NOTHING MORE. IT IS SMALL-SCALE, INVOLVING ONLY A FEW PERSONS WHO MAY BE NORMAL OR WHO MAY BE ILL WITH A SPECIFIC DISEASE. THE DRUG WILL HAVE BEEN GIVEN TO MICE AND MONKEYS; IT APPEARS TO BE SAFE. A PHASE I TRIAL ASKS THIS QUESTION: WHAT HAPPENS WHEN WE GIVE THIS DRUG TO A HUMAN?” The results of one such test in 2006 in England, “four of six healthy volunteers, each having been paid L150 to test increasing doses of a new product, rapidly became critically ill and ended up in intensive care wards. All survived, but their recoveries took weeks.”
This is a unique look at chronic illness from an experienced patient… and a Doctor learning firsthand the human part… of treating the chronically ill. Any chronically ill patient… their family and friends… should definitely read this book. I feel it should also be made a reading requirement in medical school… so more Doctor’s will look patients in the eye… and not just stare at their chart.
April 9, 2009
This was a wonderfully written and thoughtful account of a doctor and a patient and their mutual struggles.
May 18, 2018
I found this a very interested read. The format is set up in partially alternating chapters between the patient (Ms. Brill) and her Doctor that formulate their perceptions of her chronic intermittently relapsing severe medical condition. I would highly recommend this for anyone but especially for teachers of physicians-in-training/medical students (and the trainees themselves) for gaining an important patient-centered perspective on chronic illness and how physicians can (sometimes) help but frequently impede the therapeutic process.
March 2, 2022
Salve for the soul. The realest book on chronic illness I’ve read to date. The dual perspective of the authors is illuminating. Thank you Alida and Dr. Lockshin for this.
November 22, 2009
I ordered this book to see if it was useful to include in a course on the theoretical foundations of family medical practice. It is a dialogue between a very articulate and accomplished individual with a chronic disease (Wegener's granulomatosis) and her physician. There are a lot of useful insights for medical practitioners. The book or, at least some of the chapters, should be useful for stimulating discussions.
Want to read
February 24, 2009I reallly, realllly, realllllly want to read this book
Displaying 1 - 10 of 10 reviews