The Wounded Storyteller: Body, Illness, and Ethics

by Arthur W. Frank

In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait.

Ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.

Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner's battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic.

Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new.

Genres: Nonfiction, Medicine, Psychology, Health, Academic, Disability, Philosophy

231 pages, Paperback

First published January 1, 1995

Reviews

[Emma Sea · Rating 1 out of 5]

this is a pretty good time capsule of the medicalization of embodied experience in the early 1990s.

"Just as political and economic colonialism took over geographic areas, modernist medicine claimed the body of its patient as its territory, at least for the duration of the treatment. “When we’re admitted to a hospital or even visiting a doctor . . . the forms ask for ‘Patient Name.’ We stop being people and start being patients. . . . Our identity as people and the world we once knew both are relinquished; we become their patients and we live in their hospital.” (p.10)

nearly 30 years later this does not resonate with my own contemporary experiences. Which is a good thing. This was an important book and undoubtedly helped change the approach of health care providers and I thank Frank for his work.

[Kayla Duty · Rating 5 out of 5]

This book is a powerful insight into the way we understand how our body tells the story of our illness. Frank's insight into the way we use narrative power to give voice to illness that plagues our body is a beautifully written approach to narrative medicine. If you have any interest in the way we talk about our own medicine narratives, this book should be number one on your list.

[Julene · Rating 5 out of 5]

The Wounded Storyteller: Body Illness, and Ethic totally engaged me. So much good information for anyone living with a chronic illness. He looks at the four general problems of illness: control , body-relatedness, other relatedness, and desire and the direction each can go in. Then he examines the four ideal typical bodies: Disciplined, mirroring, dominating, and communicative body. He has a chart to show this and then he goes into the three main types of stories someone with an illness tells: restitution, Chaos, and quest. Using the problems to exemplify the plot, action problems of embodiment, how narrative works as self story and the powers and limitations of each of these kind of stories. Then in the last chapters of the book he does an examination of ethics. Fascinating. So many great references with a great index. It makes me want to read more of his work.

Some quotes:
"Telling stories of illness is the attempt, instigated by the body's disease, to give a voice to an experience that medicine cannot describe."
"Bodily symptoms are the infolding of cultural traumas into the body."
"Illness is about learning to live with lost control."
"The pedagogy of suffering begins its teaching from a ground of loneliness seeking communion. The communion is the reward of the nursing assistant who cleans the soiled resident and claims it does not stink because of the relationship between them."
"Illness is not presented to the ill as a moral problem; people are not asked, after the shock of diagnosis has dulled sufficiently, what do you wish to become in this experience? What story do you wish to tell of yourself? How will you shape your illness, and yourself, in the stories you tell of it?"
"Dying is not a loss of the old map and destination; in the context of the familiar stories, dying is accepting where the map always led."
He quotes Frederick Franck, ""Could the meaning of being born human be, to become Human?" This question is too practical to be called rhetorical, but it is too vast to provide for an answer. As a project, it is recursive. Like a story, it can only be lived. What Franck calls becoming Human, I call the communicative body."

The book gave me insight into the workers who do the hardest work directly with the body. It also shed light on the role of the doctor as a clerk, less involved with the patient's body than the chart and numbers of their labs.

[Susan · Rating 5 out of 5]

Useful categories for thinking through and creating narratives of illness.

[Janet · Rating 4 out of 5]

This is most directly relevant for medical ethics involving ill people talking story to tell modern medicine what it cannot know. His use of narratives strongly supported my understanding of his argument. His overuse of new typologies made the reading slightly tedious, but I will be able to use his terms, so I am grateful for them, in order to broaden the situations of suffering the body speaks and witnesses to torture and incarceration. He briefly mentions torture, and though it cannot be compared to illness, I will be able to use this book to offer a considerably more astute reading of the testimony of Guantánamo detainees. I am quite grateful for the suggestion to read this book and happy to have finally read it. This book goes much deeper for me. It makes me consider the people I have lost in my life and my grief over their stories being swallowed by their illnesses that took their lives. There remains this sense of our inability to talk and listen openly about death within the institutions of the medical community and the family and what we do when we are left behind. To add a question to his list based on relationships with the dying: How do I continue to be a daughter without parents? What do I do with this role and that place in my life for that relationship?

Here is the recipe for letting go without death robbing you of your stories and connections: "A radical hope when death is a more or less proximate prospect is to become part of that web of stories, because this web is the possibility of other people’s hope. If what Benjamin calls the “real story” offers some counsel, the final counsel I offer from the web of illness stories is what Benjamin writes about fairy tales: 'The wisest thing . . . is to meet the forces of the mythical world with cunning and with high spirits'" (157).

Frank, Arthur W.. The Wounded Storyteller: Body, Illness, and Ethics, Second Edition (p. 220). University of Chicago Press. Kindle Edition.

Also, politics and governments change or fluctuate and this may be compared to illness and death. Frank explains radical hope and it speaks to me about continuing to move, love, dream, and act without getting lost in a nostalgia for something that never existed, which we become aware of when we acknowledge that injustice and cruelty are not an accidental or unintentional, but structure the driving force of many governments/regimes, including the one I am in. To stretch the typologies of his narratives to make political use of them, we cannot afford to buy into a "restoration" narrative when faced with "chaos," but must create our own messy "quest" narratives, which has always been about facing an unknown that is actually right in front of us and risking being misunderstood. By the way, I don't necessarily see this as a linear process.

Quotes to end with:

"Radical hope enables a person to continue to live after losing what organized his or her life and gave meaning to living."(Frank 210).

"Courage is believing that new practices can be found that will provide new ways to be virtuous and excellent." (Frank 210-211).

After you take these two statements for a ride, let me know if and how these resonate for you medically/personally and/or politically/ethically. Peace be with you.

[Shirin A. · Rating 5 out of 5]

Arthur!! My #1 boy!!!
This blew my mind to smithereens and I will need some time to sit with it before I can articulate coherently its endless brilliance and grace.

[Kristen · Rating 4 out of 5]

Arthur W. Frank’s The Wounded Storyteller: Body, Illness, and Ethics is not a craft book for writers. It is a meticulously constructed, yet elegant and impassioned, examination of the centrality of storytelling as a way of deriving and communicating meaning, by and among individuals. Frank, a sociologist as well as a cancer and heart attack survivor and memoirist, concerns himself with the stories people tell when serious illness disrupts a life story, severing the present from a past that was supposed to lead elsewhere and a future that no longer seems plausible or even possible. For this work, he is as interested in the stories an individual might tell her friend over the phone as with a published story, with the person listening to the story as with the storyteller. Yet, it is precisely this effort to understand and analyze what happens at the very core of communicating through stories that makes Frank’s theoretical lens a helpful writer's tool to reflect on how illness stories work.

[Charlotte · Rating 4 out of 5]

If you ignore the embarrassing cover and try not to pay too much attention to the gushy North-American style that Frank uses, this is an interesting and potentially empowering read. In quite a Nietzschean manner, he explores how sufferers can appropriate their illness and re-tell it in the form of a "story" (very 90s). Telling your story to someone else forces you to give it some sort of shape; you have to acknowledge your illness and present your thoughts about it to someone else. This allows you to re-imagine how your life could function when who you are and what you do has to be structured so much around a debilitating illness. Frank sees suffering as an opportunity to change: 'The body-self whose foreground is dominated by threat is unmade, but unmaking can be a generative process; what is unmade stands to be remade.' (p.172)

[Mary · Rating 4 out of 5]

I read this book because it's cited by everyone who studies health and narrative. It was a good read though it took me a while to get through. The chapter on the Quest Narrative was probably my favorite since it's most relevant to the work I'm doing. If you're interested in medical memoirs, it's a must-read.

[Josephine Ensign · Rating 5 out of 5]

This book gets better on re-reading. Parts are dense and academic, but most of it is accessible. Provocative is mostly how I would describe it. My 'working copy' of the book is now dog-eared and green sticky-tagged throughout. His later chapters on the quest narrative and on testimony stand out as particularly well-written.

[Glenn Martinez]

Proposes that wounded bodies are also wounded in voice. Illness narratives are therapeutic in that they allow the "body-self" to articulate and make sense of the interruptions caused by illness.

[Mindy · Rating 4 out of 5]

I use this as a text in a class I teach for a BSN nursing program and it works quite well.

[R.J. Gilmour · Rating 5 out of 5]

Frank's book looks at the nature of storytelling as it relates to bodies that are defined by illness. It is a fascinating and nuanced, analytical study that draws on a wide variety of sources to understand how narrations about illness are at once defined by the bodies illness to speak about pain and identity.

"I had grasped well that there are situations in life where our body is our entire self and our fate. I was in my body and nothing else...My body...was my calamity. My body...was my physical and metaphysical dignity. Jean Amery." frontispiece

"My silence of what was deeply wring was affirmed when I read Audre Lorde, who wrote as a breast cancer survivor around 1980, "My silence had not protected me, your silence will not protect you." That quotation is one of the lines that resounds loudest when I think about illness. My questions are always: who is preserving what silences, what do they imagine is being protected by silence, and who suffers by being kept silent? Lorde shows a way out of silence: speech that has the power to create community." xiii

"Through their stories, the ill create empathetic bonds between themselves and their listeners. These bonds expand as the stores are retold. Those who listened then tell others, and the circle of shared experience widens. Because stories can heal, the wounded healer and wounded storyteller are not separate, but are different aspects of the same figure." xx

"The destination and map I had used to navigate before were no longer useful."...Judith Zaruches wrote of how, after an illness that is never really finished, she "needed...to think differently and construct new perceptions of my relationship to the world." 1

"The personal issue of telling stories about illness is to give voice to the body, so that the changed body can become more again familiar in these stories. But as the language of the story seeks to make the body familiar, the body eludes language. To paraphrase Martin Buber, the body "does not use speech, yet begets it." The ill body is certainly not mute-it speaks eloquently in pains and symptoms-but it is inarticulate." 2

"When we're admitted to a hospital or even visiting a doctor," writes Dan Gottlieb, who as a quadriplegic has extensive experience with such visits, "the forms ask for 'Patient Name.' We stop being people and start being patients...Our identity as people and the world we once knew both are relinquished; we become their patentees and we live in their hospital." Gottlieb's anger reflects a widespread resentment against medical colonization." 10

"This is exactly the colonization that Spivak speaks of: the master text of the medical journal article needs the suffering person, but the individuality of that suffering cannot be acknowledged." 12

"Post-colonialism in its most generalized form is the demand to speak rather than being spoken for and to represent oneself rather than being represented or, in the worst cases, rather than being effaced entirely. But in postmodern times pressures on clinical practice, including the cost of physicians' time and ever greater use of technologies, mean less time for patients to speak. People then speak elsewhere. The post-colonial impulse is acted out less in the clinic than in stories that members of the remission society tell each other about their illnesses." 13

"Strains in lay/professional relations reflect not only conflicts of expectations between these groups, but conflicts within each group's expectations as well. Ill people still surrender their bodies to medicine, but increasingly they try to hold onto their own stories. Refusing narrative surrender becomes one specific activity of reflexive monitoring, and thus an exercise of responsibility." 16

"The idea of telling one's story as a responsibility to the common sense world reflects what I understand as the core morality of the postmodern. Storytelling is for an other just as much as it is for oneself." 17

"The stories we tell about our lives are not necessarily those lives as they were lived, but these stories become our experience of those lives. A published narrative of an illness is not the illness itself, but it can become the experience of the illness."22

"Zygmunt Bauman points out a paradox of body association: the body, at least in the end that will come to us all, is the enemy of survival. As long as the body is healthy and mortality is beyond the horizon of consciousness, associating the self with the body comes easily. The recognition of mortality complicates this association." 33-34

"Schweitzer wrote what become one of his most famous passages: Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in physical need obtain the same help that once came to him. He no longer belongs to himself alone; he has become the brother of all who suffer. It is this "brotherhood of those who bear the mark of pain" that demands humane medical services..." 35

"Lacan places desire in a triad with need and demand. The need is fully corporeal and can be satisfied at that level...The expression of the need is the demand, but the demand differs from the need itself:...The demand's difference from the need enlarges the context: the demand asks for more than the need it seeks to express. Desire is this quality of more....Desire, Lacan teaches, cannot be filled: there is always more...Desire has to express itself as the demand for some object, but the object is not what is desired, any more than they child at bedtime desires what he demands. The point of desire is that the displacements never end: there is no final demand; desire is always wanting more." 38

"Broyard concludes that "it may not be dying we fear so much, but the diminished self" (25). What diminishes the self is no longer desiring for itself. Falling out of love with yourself means ceasing to consider yourself desirable to yourself: the ill person fears he is no longer worth clean teeth and new shoes." 39

"Becoming seriously ill is a call for stories in at least two senses. The first is what Judith Zaruches implies when she writes of losing her map and destination. Stories have to repair the damage that illness has done to the ill person's sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations." 53

"Judith Zaruches's metaphor of losing her map and destination suggests illness as a shipwreck. Almost every illness story I have read carries some sense of being shipwrecked by the storm of disease, and many use this metaphor explicitly. Extending this metaphor describes storytelling as repair work on the wreck." 54

"Times are changing. A senior surgeon wrote to me that he is finally learning the difference between taking a history and hearing the patient's story: until recently, the medical history was considered to be the story." 58

"The interruptions that illness is, and the further interruptions that it brings, are disruptions of memory. The disruption is not of remembering;..." 59

"Schank explicitly links telling to memory: "We need to tell someone else a story that describes our experience because the process of creating a story also creates the memory structure that will contain the gist of the story for the rest of our lives. Talking is remembering. Memory is not only restored in the illness story; more significantly, memory is create. If the story being told is what Carr calls something to live up to, then a future is also being created, and that future carries a distinct responsibility." 61

"Illness narratives as one form of self-story overlap with and are bounded by at least three other forms. These are spiritual autobiographies, stories of becoming a man or a woman and what that gender identity involves, and finally survivor stories of inflicted traumas such as war, captivity, incest, and abuse." 69

"The restitution plot is ancient: Job, after all his suffering, has he wealth and family restored, and whether or not that restoration was a later interpolation into the text, its place in the canonical version of the story shows the power of the restitution storyline." 80

"The restitution story, whether told by television commercials, sociology, or medicine, is the culturally preferred narrative. Nothing less is at stake in the viability of this narrative than the modernist project that Zygmunt Bauman calls "deconstructing mortality." Modernity, Bauman argues, exorcises the fear of mortality by breaking down threats, among which illness is paradigmatic, into smaller and smaller units. To use May's distinction, the big mystery becomes a series of little puzzles. Medicine, with its division into specialities and sub-specialities, is designed to effect this deconstruction." 83-84

"Restitution stories reassure the listener that however bad things look, a happy ending is possible-Job with his new family and cattle, basking in God's graciousness. Chaos stories are Job taking his wife's advice, cursing God and dying....I first began to hear the chaos narrative in Holocaust stories and commentary on them. What cannot be evaded in stories told by Holocaust witnesses is the hole in the narrative that cannot be filled in, or to use Lacan's metaphor, cannot be sutured. The story traces the edges of a wound that can only be told around. Words suggest its rawness, but that wound is much of the body, its insults, agonies, and losses, that words necessarily fail. The teller of chaos stories is, preeminently, the wounded storyteller, but those who are truly living the chaos cannot tell in words. To turn the chaos into a verbal story is to have some reflective grasp of it. The chaos that can be told in story is already taking place at a distance and is being reflected on retrospectively. For a person to gain such a reflective grasp of her own life, distance is a prerequisite. In telling the events of one's life, events are mediated by the telling. But in the lived chaos there is no meditation, only immediacy. The body is imprisoned in the frustrated needs of the moment." 98

"When somehow some part of the chaos is too, no one wants to hear. Lawrence Longer, studying the recordings of oral histories of the Holocaust, observed how interviewers undercut the stories that the surviving witnesses were telling. Very subtly the interviewers direct witnesses toward another narrative that exhibits "the resiliency of the human spirit." The human spirit certainly is resilient, but Langer forces his readers to recognize that that is not what the witnesses are saying....The challenge of encountering the chaos narrative is how not to steer the storyteller away from her feelings...The challenge is to hear. Hearing is difficult not only because listeners have trouble facing what is being said as a possibility or a reality in their own lives. Hearing is also difficult because the chaos narrative is probably the most embodied form or story. If chaos stories are told on the edges of a wound, they are also told on the edges of speech. Ultimately, chaos is told in the silences that speech cannot penetrate or illuminate. The chaos narrative is always beyond speech, and thus it is what is always lacking in speech." 101

"The chaos narrative is lived when "it" has hammered "me" out of self-recognition. Chaos stories are told at the end of the process that Elaine Scarry calls "unmaking the world." 103

"When liberation from the hospital comes, as welcome as it is, one's real trouble begins: the trouble of remaking a sense of purpose as the world demands." 107

"Being a mute witness, caught within the chaos itself, is a condition of horror." 109
I think this is the primary form of horror, the recognition that one is truly alone and unable to scream for help.

"Restitution stories attempt to outdistance mortality by rendering illness transitory. Chaos stories are sucked into the undertow of illness and the disasters that attend it. Quest stories meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person's belief that something is to be gained through the experience." 115.

"The quest narrative certainly goes back to John Donne, who recast his critical illness, probably typhus, into a spiritual journey. My nominee for parenthood for the contemporary quest story, however, is Friedrich Nietzsche." 116

"For me as a member of the remission society, Campbell deserves his influcen because of his moral insight that mythic heroism is evidenced not by force of arms but by perseverance. The paradigmatic hero is not some Hercules wrestling and slugging his way through opponents, but the Bodhisattva, the compassionate being who vows to return to earth to share her enlightenment with others. What the myths are about is agony."119

"The witness in a traffic court speaks on the authority of having been there, on the scene; what counts is seeing. The illness witness also speaks from having being there, but his testimony is less of seeing and more of being. Gabriel Marcel expresses this quality of witness: "We are concerned with a certainty which I am rather than with a certainty which I have." This certainty is realized in testimony: "But how can I be a certainty," Marcel asks, "if not in as much as I am a living testimony?" 140

"The witness of suffering must be seen as a whole body, because embodiment is the essence of witness..Her testimony is her body, and ultimately the body can only be apprehended through all the senses of another body...One message of Art's survival is that none of us can detached spectators to others' witness. He comes to terms with his father by eliciting his testimony, recording it, interpreting it, and ultimately presenting it to a broader audience of witnesses. The imperative to receive testimony is postmodern but not distinctly so; the distinctive postmodern lies in the witness's uncertainty of what is being received." 142-143

"As I hear Native Canadians speak of their stories and what it means to live in an oral culture, I am struck by their retelling of stories. When stories are retold, the point is not what is learned from their content, any more than the point of Gail's experience can be stated in so many analytical points. The pint is rather what a listener becomes in the course of listening to the story. Repetition is the medium of becoming. Professional culture has little space for personal becoming." 159.

[Jonas Stage · Rating 5 out of 5]

Earlier this day I went to a workshop with Arthur Frank in Copenhagen, Denmark. The workshop was about the use of narratives in health practice and research for people with life-threatening illness.

As a way of preparing myself for the workshop I decided to read the ‘Wounded Storyteller’. I was familiar with Franks concepts of the quest-, chaos- and the restitution narrative beforehand, throughout my study of sociology. But I wasn't quite sure why we need to tell other people's stories. More accurate; I was wondering what is it that stories are capable of doing for other people or health practice, when they are told?

There’s no doubt that Frank convinced me of the importance of 'letting stories breath' and telling the stories, and seeing which stories is in need of being told.

For me, Frank really manages to show - in a intense, and very elegant way - throughout the book the importance of listening to patients stories as a way illuminating the different illness trajectories. As he points out several times throughout the book: it is far from every patient who gets to experience a "restitutions" narrative, despite noticing that this type of narrative is the dominating cultural narrative which both the media, healthcare workers (and so on) taps. Patients do not always experience a return-to-a-normal-life-narrative. Some end up in situation and telling stories which are dominating by complete chaos, removed of any meaning to the individual who is suffering.

Frank also shows, which is a very important point, that for some people there’s actually a deeper meaning and also something to gain out of their experiences with suffering. Knowing very well that they’re never going to experience a return-to-a-normal-life-narrative. Instead they realizes what matters more to them and gain a different perspective. Thoughts much like that of Giddens when he talks about ‘fateful moments’ and ‘turning point’s. But Frank elaborates and says that their story are also able to stand as a ‘testimony’, as a moral stance to people in the same situation showing a life worth living despite changes. And because of that healthcare workers need to recognize different illness trajectories, instead of tapping into restitution-narrative and imposing this on the patient as the only “normal” way of being sick which ends with them being “fixed”.

Today, we’re seeing changes in healthcare systems and communities around the world, and therefore I think that Franks ideas are still very relevant. There could of cause be a need to update and present new idealtypes of narratives, which he also emphasizes by saying “there’s a need to propose new narratives”. But that’s not the point. The point is, that we need listen to patients stories and helping their stories being told as a way of stating what is working, and what could be better for their situation. Especially when patients stories are affected by different cultural narratives (e.g. dominating narratives of restitution, dominating power relations or successful cases/interventions with focus on patient-centered-care and user involvement with the risk of practicing pseudo listening), which forget to see the normalization of patients – a point from Foucault about relations of power– and thereby missing the opportunity to hear the patients out: is that given way of handling their situations actually meaningful for them? For Frank the point is that if you listen closely and acknowledge their story, you’ll know the answer to your question.

Stories is cable of invoking change, and that’s why Frank insights are so important today.

[Mish Middelmann · Rating 5 out of 5]

I am deeply inspired and informed by this seminal book, first written over 25 years ago. Arthur Frank calls it "my attempt to widen the circle, to amplify and connect the voices that were telling tales about illness, so that all of us could feel less alone.” He also introduces the idea of storytelling as a way of generating a new roadmap, having lost the old roadmap and identity in the devastation of one's illness.

These intentions and possibilities ring true for me as a wounded storyteller. At the beginning of this year I created a blog in which I have begun telling my own story of prostate cancer. I introduce my blog with the following context and intention: "The most minimal roadmap for recovery was provided. I want to expand the roadmap and the conversation about recovering life and manhood after prostate cancer."

My experience of sharing the storytelling has definitely been one of feeling less alone, both as people respond to my story and as they increasingly share their own stories, some of which are now also published in the blog. And I am convinced that together, we are slowly painting in the contours on the landscape of the impact of prostate cancer and its treatment - which allows each of us to plot our position and craft some kind of new roadmap.

And Franks goes a lot further than this. Firstly he does examine and share fascinating and inspiring stories from wounded storytellers across many generations and cultures. Mercifully, he does this from a place that respects all genders, races and cultures and is careful not to assume white male cultural hegemony.

Secondly he puts together a framework for understanding how stories of illness and hurt (including hurts inflicted by other people) can be told and heard within different ways of relating to both the storyteller and the loss or hurt or illness. He distinguishes carefully between stories of restitution (where illness is temporary and some external agency makes it all right again), chaos (where the illness or loss is simply overwhelming) and quest (where acceptance of the "new normal" enables new forms of radical transformation and being with even terminal illness).

And thirdly, he situates this all within an ethical discussion about how we should choose to respond to our own and other people's stories of illness, pain and loss. If I understand ethics correctly, it is about making choices for the good of all. Telling stories of illness and loss, for Franks and for me, invites others into relationship, and challenges us all to respond, to be response-able.

[Amanda · Rating 4 out of 5]

I'm reading this as a member of the "remission society," and for my own dissertation writing purposes. So this reading was personal and professional.

I really enjoyed this book, even though parts of it felt a bit dated at times. Medicine has moved more toward a "shared decision making model" of care, and doctors have, in my opinion, become better at listening to stories. Still, if you examine your medical record, very few of those stories likely made it into the written word. As Frank says in the afterword, "hospitals trade in bits of information" and this information is a "technical account" of disease. Although doctors may listen to stories more, the written account--what is left behind by medicine--is still very technical.

Frank grounds his argument for the morality of telling stories in the postmodern turn, which can be difficult reading. Still, his work has clearly impacted the field of medicine, as evidenced by how many qualitative medical researchers draws on his three narrative types.

This book helped me understand why I feel the need to talk about my own cancer diagnosis, and I felt seen in this book. It's also going to help me with my own dissertation. So useful all around.

[Claire · Rating 3 out of 5]

Very easy and straightforward way of writing with an interesting thesis. I do wish there had been more in his argument in the way of how the body speaks through writing, as I found that argument to only come out during the discussion on chaos narrative, wherein the body prohibits narrative and voice. His argument, as he stipulates a few times, is reductive at times, but I appreciate that he emphasizes that narratives consistently overlap in his categories, and the categorization does make his argument compelling and easy to follow. I think this is a good book for people new to understanding health and narrative; it was a little too simplistic for what I was looking for, but I do wish that I had read this earlier in my studies because Frank makes his points very easily understandable, clear, and compelling.

[Jacqueline · Rating 4 out of 5]

Frank writes about how ill people -- or those who can serve as witnesses to the land of illness -- tell their stories. He writes about the competing narratives of doctors and patients, agency and/or healing that can come from writing about experiences with illness, and the importance of listening carefully to the testimonies of ill people in order to empathize and truly hear their experiences.

I was surprised by how much I loved this book, and how much I related to it because of my own experiences narrating illness. As a patient who often feels as though my narrative is taken from me or distorted by medical professionals, this book left me feeling empowered, and vocalized a lot that I have not yet been able to.

[Zachary · Rating 4 out of 5]

Frank has a really nice tone to his writing that is remarkably easy to engage with even when dealing with difficult subjects like illness or heady subjects like storytelling. The narrative themes and conceptual ideas that Frank works with in this book are straightforward and easy to understand, and he does a fantastic job showcasing their implications through extended discussion and apt illustrations. I don't know that I would ever say the book is fun to read, but it is engaging and thought-provoking, and something that I'm sure I would return to if I or someone near to me were ever in a time of significant health crisis. That the book can speak both as an academic text and as a text of comfort in such times is, I hope, a testimony to its unique power.

[Ann Michael · Rating 5 out of 5]

As a reader with an intellectual bent--psychology, sociology, anthropology, neurology, postmodernist theories, philosophy, literary criticism and theory, etc...I read and learn from such texts. They're not always quick, easy reads.

As a reader who has fairly recently had to find her way to live with physiological challenges (chronic and degenerative), I'm seeking insights and wisdom.

As a writer, I've long believed in the value of story/narrative as not necessarily a method of healing but certainly a force for expression and recognition of how to live with/among/through experiences of all kinds, particularly losses.

Frank's book thus appeals to me on many levels. I found it valuable and will be thinking about it for a long time.

[Brandon Lee · Rating 5 out of 5]

Reaction: The core of medical ethics, narrative described in three of the many types of narratives that exist in human history. Learning from illness takes parts of one’s understanding of the experience and moves forward with the illness.
Writing Style: Easy to read but also academic tone
Argumentation: A journey into how the body experiences different conflicts during illness, and three narratives that follow to apply these body problems into narrative medicine
Commendation: A clear, well thought out explication that can be a narrative on its own right
Critique: Too many examples that could be condensed down or brought together instead of broken up for simple details

[Bruce Campbell · Rating 5 out of 5]

Dense, fascinating, and important. Did I say dense? Frank draws on dozens of sources from Aristotle to Riceour to Lorde to Parsons to Nietzsche to Sacks, to describe how the ill create narratives to cope with their illness. He shows how the healthcare system is modernist while patients are often postmodern, setting up a therapeutic dissonance. You'll learn a new "language" along the way: We all aspire to maintain a Communicative body type pursuing a Quest narrative where we accept illness as a vocation.

The second edition includes all of the first but adds two sections of new material.

[Kate · Rating 4 out of 5]

A really, really important read for anyone who deals with illness regularly, or is interested in exploring perspectives about illness.

A bit difficult to read/follow at times, but overall, an incredible and important project.

[Becka · Rating 4 out of 5]

This is a really interesting cornerstone of the medical humanities with a LOT of problems. You gotta get the second edition with the new preface and afterword, where he acknowledges all the issues with the original.

[Kellie · Rating 4 out of 5]

Another Birth Story Book. I wish there were two versions of this book. One that was more about the depth of the different kinds of stories and less about trying to convince people like the first half was. But all in all good stuff.

[Chez · Rating 4 out of 5]

I really liked this book, I liked the idea of different ways of seeing your body when you are ill and being able to communicate that illness to others. I gave it one star less because I thought it would have been nice to have more examples.

[Marty Isacowitz · Rating 5 out of 5]

So inspiring; as someone living with chronic illness, I feel as if I have found many coping mechanisms because of this book. I have never felt so seen, nor given such great examples of what it is like to live dying.

[Olwen · Rating 1 out of 5]

Prescribed text for study.

[Corinne Natasha · Rating 3 out of 5]

This was a slog. It's graduate-level sociology and very difficult to relate to real-world situations.

[Chris Nagel · Rating 3 out of 5]

The butler did it.