Customer Reviews

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

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"This book is an intimate memoir about chronic illness, but a different one from those you usually see. It is a memoir that comes not from just one point of view but from the different sides of both [the chronically ill] patient and doctor [treating the chronically ill patient]...Although the subject matter is serious, and at times we [the authors] reach into the darkest sides of [chronic] illness, we view this as an optimistic book about hopes and dreams."

The above is found at the beginning of this captivating book authored by Alida Brill (the chronically ill patient whose illness began in adolescence) and Dr. Michael Lockshin (who treats her). Brill is a writer and author while Lockshin is one of the world's leading experts in the long-term care of chronically ill patients.

What is chronic illness? I can give you the sterile, clinical definition but I prefer Brill's description:

"Chronically ill people do not just live in a place that is different; our own bodies imprison us because our internal systems so wrongly understand us...Our bodies are unable to correct the faulty code of enemy and friend in the conversation between cell, tissue, and organ. We are threatened by our own interior workings--we are literally caught in the crossfire raging inside of us."

When a book is co-authored, you probably expect that each author works together on each chapter. This is not the case with this unique book. Instead each author, in most instances, writes her or his own alternate chapter. (In three instances, Lockshin writes two chapters in a row and in one instance, he writes three chapters in a row.) The result is actually a "dual memoir" between a long term, chronically ill patient and her dedicated doctor.

Brill wrote this in her journal on her first encounter with Lockshin:

"I never met a physician who thought that treating me or being in my presence of my [chronic illness] would be a pleasure, but today I met MDL [Michael D. Lockshin] and he said, it would be a pleasure to be my doctor. He did not say that finding the exact name for [my chronic illness] matters as much as getting me to a better place than I have been. He saw me as Alida, not as Disease. I can't believe this has happened to me after all these years."

In this book, you'll learn about the everyday struggles endured by Brill and other issues (such as intimacy, suicidal thoughts, faith, and employment) faced by her in dealing with her chronic illness and the major concerns, conflicts, dilemmas, and other issues Lockshin must face in making life decisions to help, not only Brill, but his other chronically ill patients as well.

Be aware that this book is not easy to read. Intellectually it is an easy read. This book is not easy to read because it pulls on the heartstrings as Brill has to continually face an unstable life with chronic illness. For me, this book had special significance since I have a chronic physical disability. (After reading what Brill had to and has to endure, my problems, in contrast, seem like a walk in the park.)

Finally, who is this book written for? Answer:

(1) Anyone who wants to witness how human resilience and strength can cope with adversity.
(2) Anyone who wants to know what goes on inside the mind of that rare breed of doctor--a dedicated physician.
(3) Anyone who is living with a crisis that will not subside.
(4) Families, friends, and colleagues dealing with chronic illness.
(5) All those in the healing community.

In conclusion, Alida Brill tells us "this is the book I was never going to write." Dr. Michael Lockshin tells us that he "did not choose a career in chronic illness; this career chose me." Thank goodness these events turned out the way they did or else we would not have this book--a book unlike any other I have read!!

(first published 2009; prologue; 5 parts or 28 chapters; main narrative 250 pages; acknowledgements {Brill}; acknowledgements {Lockshin})

<<Stephen Pletko, London, Ontario, Canada>>

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I myself am `dancing at the river's edge' with my oncologist in a long-term relationship that I never would have dreamt of before cancer began to disrupt my inner, most private self. At least my body had the grace--or the genetic strength to hold off the mutating cells until I was in my fifties. Author Alida Brill had to learn how to deal with a devastating auto-immune illness, an atypical form of Wegener's Granulamatosis, in her teens.

Unfortunately, the author's spectrum of symptoms didn't lead to an automatic diagnosis, and for years she was mistreated, and even told that her illness was `in her head.' This was a common experience for women of our baby boomer generation. For years I was told that my headaches were a part of my menstrual cycle and would just have to be endured, even though I exhibited classical migraine symptoms, and migraines ran strongly in my family (my father and great-grandfather).

"Dancing at the River's Edge" brought back long-suppressed anger in this reader, and the author is obviously angry about her sometimes contemptuous treatment by the medical community. In one episode, she talks about "the tears in my own eyes, the tears of rage--my own powerless rage."

After years of searching, Alida Brill finally found a physician--the co-author of this book--who treated her as a human being with a chronic illness, not as an `interesting case' or a `crank' or a `gomer' (Get Out of My Emergency Room!).

If this book makes you angry or sad, it should. Both authors are unflinchingly honest and there is no happy ending--no miracle cure. Alida Brill continues to live at river's edge, her physical body under attack by her own immune system. Dr. Lockshin continues to treat her `in sickness and in health' in a relationship that is sometimes closer and more honest than a marriage. After all, how many of us continue to hide our physical deterioration from our dearest friends and relatives? Chronic illness is a metaphor for growing old (if not the process itself). Both end in the same dark chasm, but for those of us who propose to dance until the final note is played, this is a powerful book.

***review copy supplied by authors

This is one of the most thoughtful book I have read in quite some time. Like most healthy people, I have no concept of what it is like to be chronically ill. This book is NOT a "woe is me" type of book where the patient is always whining about how bad she feels. Far from it. It is really a thorough discussion (as much as one can discuss among these pages) of what it is like to never "quite feeling well." The doctor also writes of his viewpoints as someone who is the medical care-taker of patients' well-beings, and yet, he writes movingly of his thoughts and feelings as he watch his patients fight to maintain a life of their own while struggling with their diseases. He writes of many examples he has seen in the medical field, but while reminding the reader that in order for the patient to survive, she must constantly fight for her care as well as him. They must work together as a team, otherwise, Brill would be bouncing around in a medical system with no proper care, as it has happened earlier in her past. She was put in the hospital and a doctor who just looked at her as a number, not as a person, offended her deeply, until her colleague/doctor stepped in and urged her to follow the directions until she got better.

That story struck a nerve with me as my husband is struggling with a chronic disease and in the battle for our son's health care, we have run into so many so-called professional doctors who do not see us as people, but as numbers in a day filled with more numbers and complaints. We have been told time after time that there is nothing more that they can do for us and dismissed out of the office without any further suggestions (we had to do our own sleuthing to get our own answers). However, my son and I do not have to live with a chronic disease like my husband, so our battles are short-lived. My husband is constantly trying to find a doctor that is willing to treat him as a person, even if there is no cure for his situation.

Isn't that what most patients want?

If you know anyone who is struggling with a chronic illness, I would suggest this book right away. It is an eye-opener for me, who is rarely ill and that is just from the common flu bugs that kids bring home from school. Yet, Alida Brill, who is the co-author of this book, has been fighting her disease since she was a teen-ager and still managed to carve out a wonderful life in academics (and is a friend of the feminist movement, Betty Friedan) in midst of hospital stays, taking care of her elderly parents who both got stricken with cancer at the same time. Not once did she whine about her lot in life. It was all stated with matter of factness and grace. She acknowledges that she is human but she is also blessed. Her co-author, Dr. Michael Lockshin, writes from the professional stand-point and yet convey a spirit of compassion. Now all doctors can take a lesson from him. In my opinion, this book should be required reading for medical school students before they graduate with their medical degrees and before doing their residencies somewhere. This book has a lot to teach young doctors and even nurses how important it is to have a strong relationship with your patients, with all of your patients, though you may never be as close to all of them as you'd like. It does offer insights on how to be more compassionate and more thoughtful as doctors interview each patient. Not all of them are going to require an in-depth treatment plan, but the point is, treat all patients fairly and with compassion.

This book is a must-read for everyone, regardless if they're sick or not. It is an important insight of a relationship between a doctor and his patient and together, they navigate the course of maintaining her disease, which, unfortunately, does not have a cure yet.

In the real estate of reading the three most important things are: social location, social location, social location. That is, the reader's social location. From that perspective, Brill and Lockshin's DANCING AT THE RIVER'S EDGE may be a hard sell. Readers who suffer from Wegener's Granulamatosis and are aware that one of the authors (Alida Brill) suffers from the same condition might be expecting to learn of a miracle cure or fail-proof medical protocol. Such readers will be disappointed; neither Brill nor her physician co-author, Michael D. Lockshin, offer any such medical breakthroughs. Reader's of a spiritual bent who hope to find an inspiring, mind-over-body story of struggle and victory will likewise be disappointed. And healthy people who never address the probability that one day they will become ill, suffer for a period of time, and then die (relatively few people die instantaneously from gunfire or in auto accidents, and even fewer die peacefully in their sleep), may wonder what all the fuss is about. Why, they might ask, does anyone need to hear about Ms Brill's lonely struggle and Dr. Lockshin's frustrating career challenges?

But for people who care about quality of life and about the struggle to maintain hope, self-respect, and some degree of autonomy in the face of challenging odds, this is a powerful story. (That should be of interest to everybody, but sadly, it isn't.) In the end, hearing that there are no easy answers is easier to take from people who've earnestly and patiently sought useful answers. The authors have no axe to grind or agenda to push. It's their humility, compassion, and resilient humanity that is inspiring in their joint story. Lockshin sets the tone for the book by introducing the Mayan concept of time. After defining smaller measurements of time he speaks of the katun (a period of about 20 years). "On the scale of a katun people marry, achieve, see children grow, watch parents die, do or do not become disabled. The katun is the measure of time that describes the intersections of the otherwise separate worlds in which Alida and I live" (p. 7). It is against this backdrop of slowly passing time that one can appreciate the heroism of patient and doctor. Brill, whose previous writing has focused on women's rights and public policy issues, is able to paint a believable picture of how the medical profession has changed during her many years as a patient--from a male-dominated field to one that now includes many women. She is frank about her frustrations and disappointments, which include life partners who leave because the disease is too much (while never acknowledging this as their reason), elderly parents who are unable to offer support because they themselves need parenting, and a sense of isolation that comes to aging women who are childless. In the third or fourth katun of her life, Brill has learned to list her attorney as her "next of kin" when checking herself into the hospital.

I think the "uplifting" part of the story, if I can characterize it that way, is in the hard-earned, deeply felt mutual respect between doctor and patient. They are close but not enmeshed. Lockshin, while tuned in to his patient's state of mind and moods, does not pry into her private life. In fact, I suspect it is only when reading her chapters during the process of preparing the book for press that he became fully aware of Brill's darker thoughts. (Meanwhile, some of the book's lighter moments can be found in Lockshin's descriptions of patients who have none of Brill's talent for "working with" their medical caregivers.) Perhaps Brill describes the doctor-patient intimacy best when she writes, "We speak in metaphors and euphemisms. We speak in literary terms, and we speak in references to poetry as well as in medical terminology. Fleetingly, sometimes, we speak as strangers, because I know he knows things I do not want him to tell me. I suspect he knows I think he knows I think things he would rather not know I think about. At least, not yet" (p. 202). DANCING ON THE RIVER'S EDGE is not a sugar-coated pill, but an honest look at a difficult situation by two people who are equally committed to accepting life on life's terms.

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.

Dancing at the River's Edge
As a person who is both a PhD in health care social work and a chronically individual, this is the first patient and physician written text, which "talked" to me. I have given my organ transplant clients many books to read, but this is the first one that gave me self insight and validation of my coping mechanisms.
Bonnie Siegal, PhD, LICSW

I would guess that most people don't know the rigors of living for decades with a chronic disease. We get the flu; we recover. A bone breaks, and it heals. We don't walk around, shopping, going to movies, meeting friends at a coffeehouse, knowing that "the condition" is there, pecking away at the shell of selfhood, and that a minor twinge can be nothing more than a reminder to shift on the seat to a more comfortable position, or the harbinger of kidney failure.

And what of those who treat people with chronic illnesses, medical specialists who don't just blow into and out of a patient's life, but get to know the patient - the victim, the customer - as a person with aspirations, fears, goals, loves, and dignity?

Dancing At The River's Edge is the authors' attempt to tell this story. Alida Brill has Wegener's granulamatosis. She's a respected author and social activist, and has lived with this disease since her teen years. Michael Lockshin is her physician, a specialist in chronic diseases.

Another way to put this is that Michael Lockshin is a physician who makes his living treating people with autoimmune diseases. Alida Brill, a woman with an autoimmune disease, consents to allowing Lockshin treat her.

This book is a dance of prose, woven around the complicated relationships between Brill and Lockshin over the years, with alternating chapters through their respective eyes. Brill discusses what it is like living with a chronic disease. Lockshin shares his approach to treating chronic diseases. As their paths crossed, their relationship evolved.

Brill writes with grace, poetry, and anger: "I begin by saying I would not have chosen this life" (p. 16).

"Children who are chronically unwell tend to be, if not omniscient, at the very least keenly observant" (p. 37).

"...I have been judged to be controlling the lives of others or acting in a manipulative manner. Such is the misunderstood presumption of the false power of illness. It is a phenomenon only those with a serious chronic condition can fully comprehend" (p. 55).

"Of the many sacrifices I have sustained in this life the biggest by far is the realization that I am not entitled to experience happiness with another person in a loving relationship" (p. 117).

"My doctor and I live in simultaneously overlapping, yet paradoxically, parallel worlds... He can never know the feeling, from inside the body and soul, of one of us who suffers from a disease he understands clinically as both physician and researcher, but has never experienced firsthand" (p. 191).

""Chronically ill people do not just live in a place that is different; our own bodies imprison us because our internal systems so wrongly understand us" (p. 234).

Lockshin's prose cannot compete with Brill's, and his writing suffers in comparison. But then he breaks out, and tells a story, "The Merchant of the Bronx." He writes, "It is rare that I get an acute sense of nausea when I have seen a new patient" (p. 151), and tells the story of an energetic 27 year old women who had suffered a stroke at 21... and was sent home. The persistent high blood pressure damaged her kidneys. A kidney biopsy was never analyzed by specialists... why? A lack of attention from her original medical providers will result in her losing her kidneys. It is sobering. Real. There are consequences to actions and inactions. In telling this story, you get a sense of Lockshin's passions, his frustrations, and his commitment.

But, as Brill notes, "He can never know the feeling, from inside the body and soul, of one of us who suffers from a disease..." Who can understand the anguish of a husband's betrayal, going from "until death do you part" to "I am sorry, but I guess I am all healed out with you." [Note new phrase: Time Wounds All Heels]. The constant murmur of suicidal thoughts, sometimes quiet, sometimes not? But does Brill understand the physician, with a hundred patients, all with unique stories, trying to make the proper physician-patient connections while maintaining his or her own life?

Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness, is a intriguing look inside a complicated medical relationship. The fact that it includes both patient and physician gives it greater value than either writing alone.

Alida Brill and Dr. Michael Lockshin bravely reveal their own realities in this lyrical book about living with chronic illness. Alida Brill has suffered from aggressive auto-immune disease since childhood, the disease and her negotiation with it shaping her life. Michael Lockshin is her doctor, and from Alida and his other patients he distills the art of listening to what is important.

From both doctor and patient we hear of the power imbalance, the investment of trust in treatment decisions, the awareness that priorities are not straightforward and can't be measured in a logical, linear way. We learn that effective partnering in health care involves negotiation and that no fear or hope is irrelevant. We learn that people will risk anything to achieve a goal if it's important enough to them, and that in a nurturing, caring relationship, this must be respected.

Alida Brill's writing is often heart-wrenching in its honesty. Her desire to give affirmation to other sufferers permeates the book, and her observations about loving and trusting in intimate relationships are crystal-sharp. There is a continuum from full health to life-threatening illness, and it never pays to assume you know where on that continuum you will stand tomorrow.

Dr. Lockshin opens the book with a riveting essay on the unique time scale of chronic illness. It can't be cut out or cured or even rehabilitated in the time frame we associate with many medical encounters. Instead, the "now" in the life of a person with chronic disease incorporates the experience of the past and the unknowable future. The acceptance of this concept is a necessary negotiation.

Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness is about so much more than living with chronic illness--it's a book about living in a world full of people with individual realities and hopes. Whether or not your life involves a daily accommodation to health issues, you will find something in this book to stretch your awareness and enrich your life.

Linda Bulger, 2009

Alida Brill first landed on the "other planet" of chronic illness at age 12. In those years of the early 1960s, when her symptoms were not easily diagnosed and second-wave feminism was barely on the proverbial map, Alida became a feminist. Doctors ignored her and her mother because Brill's symptoms were inconsistent and sporadic - and because she was a young girl. She has spent her professional career working for the rights of women and girls undoubtedly informed by those experiences in her young life.

Dancing at the River's Edge is a dual memoir written by Brill, a woman with chronic illness, and Dr. Michael Lockshin, her physician. It is a rare, honest, and intimate account of their journeys. The chapters alternate between Alida and Dr. Lockshin as they tell us their stories of living with and working in chronic illness. Neither of them chose these respective lives - Alida never wanting to be chronically ill and Dr. Lockshin not intending to work in chronic illness - but their lives happened that way nonetheless. We as readers and fellow inhabitants of the "other planet" might admit something similar.

In reading about their journeys, we learn of their doctor/patient relationship which led to this book and we get a rare glimpse of the physician's world and his delicate balance of treating patients. So often doctor visits are rushed and the relationship is one that primarily consists of the illness and/or disability. Sometimes we just want to get our questions answered and go home. More than any of this, though, we want to be seen and treated as whole people trying to do our best on the "other planet." We want our doctors to know who we are in addition to our illnesses and/or disabilities. Dr. Lockshin does this with Ms. Brill, and we as readers reap the rewards of their partnership.

Brill voices the fears all too common for those with chronic illnesses and disabilities. Through the lens of the "other planet,"she gives us an honest portrayal of her illness, work, relationships, friendships, childhood and adulthood, the unique transition that occurs as we age, and the denial and subsequent recognition of illness. She brilliantly conveys the literal and figurative pain of a life filled with illness, yet in the end, she and the reader seem to recognize her life as one that, in her words, "really hasn't been all bad." Alida finds a way to thrive among the battle. Read this book not just because you can relate, you are chronically ill or disabled, or you are a supporter of those of us who are chronically ill and disabled. Read it for those reasons first - but pour yourself into it because it is beautifully written and a genuinely human story.

I too have a chronic illness. This book was recommended to me.When I ordered the book it came quickly and in perfect condition.The price was right too.