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The Undying
A week after her forty-first birthday, the acclaimed poet Anne Boyer was diagnosed with highly aggressive triple-negative breast cancer. For a single mother living paycheck to paycheck who had always been the caregiver rather than the one needing care, the catastrophic illness was both a crisis and an initiation into new ideas about mortality and the gendered politics of illness.
A twenty-first-century Illness as Metaphor, as well as a harrowing memoir of survival, The Undying explores the experience of illness as mediated by digital screens, weaving in ancient Roman dream diarists, cancer hoaxers and fetishists, cancer vloggers, corporate lies, John Donne, pro-pain ”dolorists,” the ecological costs of chemotherapy, and the many little murders of capitalism. It excoriates the pharmaceutical industry and the bland hypocrisies of ”pink ribbon culture” while also diving into the long literary line of women writing about their own illnesses and ongoing deaths: Audre Lorde, Kathy Acker, Susan Sontag, and others.
A genre-bending memoir in the tradition of The Argonauts, The Undying will break your heart, make you angry enough to spit, and show you contemporary America as a thing both desperately ill and occasionally, perversely glorious.
A twenty-first-century Illness as Metaphor, as well as a harrowing memoir of survival, The Undying explores the experience of illness as mediated by digital screens, weaving in ancient Roman dream diarists, cancer hoaxers and fetishists, cancer vloggers, corporate lies, John Donne, pro-pain ”dolorists,” the ecological costs of chemotherapy, and the many little murders of capitalism. It excoriates the pharmaceutical industry and the bland hypocrisies of ”pink ribbon culture” while also diving into the long literary line of women writing about their own illnesses and ongoing deaths: Audre Lorde, Kathy Acker, Susan Sontag, and others.
A genre-bending memoir in the tradition of The Argonauts, The Undying will break your heart, make you angry enough to spit, and show you contemporary America as a thing both desperately ill and occasionally, perversely glorious.
320 pages, Paperback
First published September 17, 2019
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June 22, 2020
Winner of the Pulitzer Prize in 2020 - non-fiction
The author, Anne Boyer, is a cancer survivor. ( highly aggressive triple-negative breast cancer)....a poet, single mother, living paycheck to paycheck.
Anne Boyer’s book is amazing. She wrote about her experience... every inch of it.
I literally could have highlighted her words on almost every page.
Anne said....
“she had abandoned this book at least a thousand times, a number that does not include the innumerable other destructions inherent in writing it- the drafts deleted, pages erased, passages excised, structures disposed of, arguments unraveled, sentiments self-forbidden, anecdotes untold”.
“If this book had to exist, I wanted it to be a minor form of reparative magic, for it to be expropriate the force of literature away from literature, manifest the communism of the unlovable, grant anyone who reads it in freedom that can come from being thoroughly reduced”.
The Undying.....
.....Pain, vulnerability, mortality, medicine, art, time, dreams, data, exhaustion, cancer, and care.
“Like the birds that have been liberated from the content of their flying and like the liberated tea, a diagnosed person is liberated from what she once thought of as herself”.
“To be declared with certainty
‘ill’ while feeling with certainty
‘fine’ is too fall on the hardness of language without being given even an hour of soft uncertainty in which to steady oneself with preemptive worry, aka now you don’t have a solution to a problem, now you have a specific name for a life breaking in two”.
“Illness that never bothered to announce itself to the senses radiates in screen life, as light is sound and is information encrypted, unencrypted, circulated, analyzed, rated, studied, and sold. In the servers, our health degrades or improves. Once we were sick in our bodies. Now we are sick in a body of light”.
“Every person with a body should be given a guide to dying as soon as they are born”.
Poignant, courageous—brilliant narrative- insightful; written....
with emotional integrity.
Congrats to Anne Boyer on her accomplishments- her Pulitzer Prize win is well deserved.
The author, Anne Boyer, is a cancer survivor. ( highly aggressive triple-negative breast cancer)....a poet, single mother, living paycheck to paycheck.
Anne Boyer’s book is amazing. She wrote about her experience... every inch of it.
I literally could have highlighted her words on almost every page.
Anne said....
“she had abandoned this book at least a thousand times, a number that does not include the innumerable other destructions inherent in writing it- the drafts deleted, pages erased, passages excised, structures disposed of, arguments unraveled, sentiments self-forbidden, anecdotes untold”.
“If this book had to exist, I wanted it to be a minor form of reparative magic, for it to be expropriate the force of literature away from literature, manifest the communism of the unlovable, grant anyone who reads it in freedom that can come from being thoroughly reduced”.
The Undying.....
.....Pain, vulnerability, mortality, medicine, art, time, dreams, data, exhaustion, cancer, and care.
“Like the birds that have been liberated from the content of their flying and like the liberated tea, a diagnosed person is liberated from what she once thought of as herself”.
“To be declared with certainty
‘ill’ while feeling with certainty
‘fine’ is too fall on the hardness of language without being given even an hour of soft uncertainty in which to steady oneself with preemptive worry, aka now you don’t have a solution to a problem, now you have a specific name for a life breaking in two”.
“Illness that never bothered to announce itself to the senses radiates in screen life, as light is sound and is information encrypted, unencrypted, circulated, analyzed, rated, studied, and sold. In the servers, our health degrades or improves. Once we were sick in our bodies. Now we are sick in a body of light”.
“Every person with a body should be given a guide to dying as soon as they are born”.
Poignant, courageous—brilliant narrative- insightful; written....
with emotional integrity.
Congrats to Anne Boyer on her accomplishments- her Pulitzer Prize win is well deserved.
August 6, 2019
I received an advance reader copy of
The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care
as part of a Goodreads Giveaway that may not have been wise for me to enter. Like the author Anne Boyer, I have triple-negative breast cancer, but there are so many differences in our situations: my cancer is stage 4, so I'll never be "cured" or have a "last chemo day" to look forward to; mine is due to a genetic mutation; I haven't had a mastectomy, and I don't think at this point I will; I was 31 when diagnosed; I am in a supportive marriage; my son is on the autism spectrum... and on and on. She does point out that everybody's cancer is different, yet many times it felt as though she was using her experiences to say something about all breast cancer patients, which didn't sit well with me.
The book also has many stories of individuals who have or had cancer, and speaking to their reality as theirs is fine. More often, though, it's not a message of hope but one of despair. Honestly, I don't think this is a good book for someone (like me) who is currently going through treatment and got past denial a while ago. This is for newer patients who don't quite have a handle on the severity of what they're dealing with yet, and for friends and relatives who also may not realize all the pain and frustration that their loved one is experiencing—or even just doesn't understand what cancer is, what the various treatments do, or even that there are multiple forms of chemotherapy, and the patient must make many life-or-death decisions for themselves.
Boyer also points out ways in which cancer treatment is failing us, and how frequently doctors over-diagnose cancer to the benefit of investors. This can be a bit of a horror story for those who have cancer or love someone who does.
The book also has many stories of individuals who have or had cancer, and speaking to their reality as theirs is fine. More often, though, it's not a message of hope but one of despair. Honestly, I don't think this is a good book for someone (like me) who is currently going through treatment and got past denial a while ago. This is for newer patients who don't quite have a handle on the severity of what they're dealing with yet, and for friends and relatives who also may not realize all the pain and frustration that their loved one is experiencing—or even just doesn't understand what cancer is, what the various treatments do, or even that there are multiple forms of chemotherapy, and the patient must make many life-or-death decisions for themselves.
Boyer also points out ways in which cancer treatment is failing us, and how frequently doctors over-diagnose cancer to the benefit of investors. This can be a bit of a horror story for those who have cancer or love someone who does.
May 14, 2020
A beautifully written book. Well deserving of the Pulitzer.
May 25, 2024
I purchased this with a fully-open mind, interested in the topic and thinking a renowned poet would find something to add to the world's understanding of the disruption caused by a cancer diagnosis. I read in in mounting irritation, and although it got better as it went along, my relationship with the book was hopelessly poisoned by that point.
How can I write something negative about a book of this sort without sounding like a heartless prick who berates women who have lost their hair, their breasts, their ability to think straight? I wouldn't wish this illness on anybody, and if someone diagnosed with it chose to take a fatal dose of laudanum rather than heroically subject themselves to the pain and indignity of chemo, surgery and radiation treatment, I would think no less of them. I realize this book was written from a position of pain, worry and, to some extent, shame. But the book won a Pulitzer Prize, and I just didn't think it was very good.
"The greatest risk factor for breast cancer," explains a surgeon on p. 29, "is having breasts."
This is the sort of traffic-stopping sentence that one expects from competent poets. It is, of course, true -- only about 2650 men per year are diagnosed with breast cancer in the US, vs. over 100 times that number for women. Its inclusion in this book, I sense, is to help the reader get on board with the overwhelming unfairness of it all. And therein lies the problem: the first half of the book seems to be dedicated to the proposition that her caretakers are trying to add to her pain and suffering. Did you know that the inhibitor drug Adriamycin is bright red and known as the "red devil"? She took this in combination with a small dose of the same chemical used in mustard gas. The cost of the injections in her first course of treatment exceeded the amount of money she'd ever been paid in a single year. Etc.
Oncology is a really difficult job, not least because, in one's dedication to trying to extend people's lives, one necessarily inflicts a high degree of pain, suffering and shame on the very people one is trying to help. But this is not from a desire to hurt people. It just isn't.
I don't want to continue with this. Many people liked this book. I didn't. There were a large number of startling sentences and paragraphs, but to me they didn't add up to much. Sorry.
How can I write something negative about a book of this sort without sounding like a heartless prick who berates women who have lost their hair, their breasts, their ability to think straight? I wouldn't wish this illness on anybody, and if someone diagnosed with it chose to take a fatal dose of laudanum rather than heroically subject themselves to the pain and indignity of chemo, surgery and radiation treatment, I would think no less of them. I realize this book was written from a position of pain, worry and, to some extent, shame. But the book won a Pulitzer Prize, and I just didn't think it was very good.
"The greatest risk factor for breast cancer," explains a surgeon on p. 29, "is having breasts."
This is the sort of traffic-stopping sentence that one expects from competent poets. It is, of course, true -- only about 2650 men per year are diagnosed with breast cancer in the US, vs. over 100 times that number for women. Its inclusion in this book, I sense, is to help the reader get on board with the overwhelming unfairness of it all. And therein lies the problem: the first half of the book seems to be dedicated to the proposition that her caretakers are trying to add to her pain and suffering. Did you know that the inhibitor drug Adriamycin is bright red and known as the "red devil"? She took this in combination with a small dose of the same chemical used in mustard gas. The cost of the injections in her first course of treatment exceeded the amount of money she'd ever been paid in a single year. Etc.
Oncology is a really difficult job, not least because, in one's dedication to trying to extend people's lives, one necessarily inflicts a high degree of pain, suffering and shame on the very people one is trying to help. But this is not from a desire to hurt people. It just isn't.
I don't want to continue with this. Many people liked this book. I didn't. There were a large number of startling sentences and paragraphs, but to me they didn't add up to much. Sorry.
May 3, 2020
This is an extremely cerebral work—very literary, very allusive—in which the author, a poet, philosophically and elliptically considers her breast cancer. I’m afraid I found it very hard going. I believe I could have pushed through, but I made the decision that I simply wasn’t committed enough to make the effort. I did not finish the book.
December 14, 2020
Winner of the Pulitzer for Non-Fiction 2020
In 2014, at the age of 41, poet and essayist Anne Boyer is diagnosed with cancer. Not just that, but a particularly aggressive form of necrotic breast cancer with uncertain odds of survival. Added to that: She is a single mother, living in the States, no savings. She has no partner or family nearby to help care for her. Moreover: Each chemotherapy infusion session costs more than her annual salary. This is her story.
To call this book a memoir would be to do it a disservice. It is more of an “f you” to the ritualistic performativity of the subjective experience. Boyer’s approach is neither confessional, nor heart-warming. It is, instead, defiant and subversive. A manifesto. A call-to-arms. The author writes:
“I would rather write about anything else, not only for fear of the pain of examining the pain, but also for fear of turning the pain into a product. I would rather write about anything else, not just for fear of telling the same story, but for fear that the “same story” is a lie in service of the way things are.”
If this book has to exist, Boyer wishes it to be “a minor form of reparative magic”, an expropriation of the force of literature, a manifesto of the unlovable - granting everyone who reads it the freedom that comes from being damaged into an intensified version of themselves. To achieve this, Boyer gathers around herself the great minds of the past (many who have suffered from similar afflictions) – Susan Sonntag, Kathy Acker, Audre Lorde, Virginia Woolf, Natalia Ginzburg and others. Their works and the meaning of their words form the scaffolding around which Boyer layers her personal story.
A non-normative portrait of cancer emerges: Cancer as a never-ending performance of valiance (tied to the false heroics of disease legibility), the ecological costs of chemotherapy, the cancer fetish as experienced by strangers, the brutal mystifications of the medical profession, the all-out somatic decimation that follows chemotherapy, the dark sides of pink ribbon culture.
On a more personal level: What it means to feel “like a city that is most interesting for its ruins”, the vertical life versus the horizontality of illness, the ways in which illness incubates deep thinking, the sharpened optics that come with life lived with an uncertain attachment to time. A fascinating section titled The Sickbed critically examines the way cancer patients are portrayed in literature – beings voiceless, fractured and enigmatic. Angels of epiphany. Instruments of patho-pornography:
“Cancer is in our time and place one of the most effective disease at eradicating the precise and individual nature of anyone who has it, and feminized cancers – in that to be seen as a woman is also to be, in a way, semi-eradicated, this eradication deepened by class, race, and disability – even more so.”
When trying to isolate why I loved this book so much, I think it comes down to the lucidity of the writing and the deeply self-investigative nature of the text. Here is writing not as self-preservation, nor as performance, nor as edification, but rather as an act of devotion in search of truth – the ideology of the self, primarily, from the perspective of the personal, the public and the historical.
Judge this book, therefore, not for its utility, nor its depth of feeling, but rather as a “record of the motions of a struggle to know, if not the truth, then the weft of all competing lies.”
Also on Instagram.
Literature discussed
• Susan Sontag, Illness as Metaphor
• Kathy Acker, The Gift of Disease
• Rachel Carson, Silent Spring
• Aelius Aristides, Sacred Tales
• Siddhartha Mukherjee, The Emperor of All Maladies
• Clarice Lispector, Aqua viva
• John Donne, Devotions upon Emergent Occasions
• Michael Foucault, The Birth of the Clinic
• Harriet Martineau, Life in the Sick-Room
• Woolf et al, On Being Ill
• Goethe, Faust
• Bertolt Brecht, Brecht on Art & Politics
• Fanny Burney, Diaries and Letters
• Audre Lorde, The Cancer Journals
Quotations
“To be declared with certainty ill while feeling with certainty fine is to fall on the hardness of language without being given even an hour of soft uncertainty in which to steady oneself with preemptive worry."
“A newly diagnosed person with access to the Internet is information’s incubant. Data visits like a minor god. Awake, we pass the day staring into the screen’s abyss, feeling the constriction of the quantitative, trying to learn to breathe through the bar graphs, head full of sample sizes and survival curves, eyes dimming, body reverent to math.”
“Your hair will fall out onto every surface you come near: it will fall into new alphabets and new words. Read these words to discover the etiology of your illness: If you are lucky you will read another word that means “illness has turned you into an armament”.
“If you begin to accept your illness, or even to love it, you worry that you might want to keep it around. You think, when you feel bad, that you will never long for it, but in truth you do, since it provides such clear instruction for existing, brings with it the sharpened optics of life without futurity, the purity of the double vision of any life lived on the line.”
“A sick person in bed is the ward of love, if she is lucky, and the orphan of action, even if she is not. All the accumulated gorgeousness of life in bed can be eclipsed by gravity there, and dreams, too, become occluded by pain. Every pleasure of a bed can, during illness, disappear behind fresh architectures of worry.”
“A well person’s astral projection remains mostly atmospheric, but the deeply ill person in pain, in order to escape it, can sprint away from the pain-husk of the failing body and think themselves into a range beyond range. When pain is so vast, it makes it hard to remember history or miles per hour, which should make the sickbed the incubator for almost all genius and nearly most revolution.”
In 2014, at the age of 41, poet and essayist Anne Boyer is diagnosed with cancer. Not just that, but a particularly aggressive form of necrotic breast cancer with uncertain odds of survival. Added to that: She is a single mother, living in the States, no savings. She has no partner or family nearby to help care for her. Moreover: Each chemotherapy infusion session costs more than her annual salary. This is her story.
To call this book a memoir would be to do it a disservice. It is more of an “f you” to the ritualistic performativity of the subjective experience. Boyer’s approach is neither confessional, nor heart-warming. It is, instead, defiant and subversive. A manifesto. A call-to-arms. The author writes:
“I would rather write about anything else, not only for fear of the pain of examining the pain, but also for fear of turning the pain into a product. I would rather write about anything else, not just for fear of telling the same story, but for fear that the “same story” is a lie in service of the way things are.”
If this book has to exist, Boyer wishes it to be “a minor form of reparative magic”, an expropriation of the force of literature, a manifesto of the unlovable - granting everyone who reads it the freedom that comes from being damaged into an intensified version of themselves. To achieve this, Boyer gathers around herself the great minds of the past (many who have suffered from similar afflictions) – Susan Sonntag, Kathy Acker, Audre Lorde, Virginia Woolf, Natalia Ginzburg and others. Their works and the meaning of their words form the scaffolding around which Boyer layers her personal story.
A non-normative portrait of cancer emerges: Cancer as a never-ending performance of valiance (tied to the false heroics of disease legibility), the ecological costs of chemotherapy, the cancer fetish as experienced by strangers, the brutal mystifications of the medical profession, the all-out somatic decimation that follows chemotherapy, the dark sides of pink ribbon culture.
On a more personal level: What it means to feel “like a city that is most interesting for its ruins”, the vertical life versus the horizontality of illness, the ways in which illness incubates deep thinking, the sharpened optics that come with life lived with an uncertain attachment to time. A fascinating section titled The Sickbed critically examines the way cancer patients are portrayed in literature – beings voiceless, fractured and enigmatic. Angels of epiphany. Instruments of patho-pornography:
“Cancer is in our time and place one of the most effective disease at eradicating the precise and individual nature of anyone who has it, and feminized cancers – in that to be seen as a woman is also to be, in a way, semi-eradicated, this eradication deepened by class, race, and disability – even more so.”
When trying to isolate why I loved this book so much, I think it comes down to the lucidity of the writing and the deeply self-investigative nature of the text. Here is writing not as self-preservation, nor as performance, nor as edification, but rather as an act of devotion in search of truth – the ideology of the self, primarily, from the perspective of the personal, the public and the historical.
Judge this book, therefore, not for its utility, nor its depth of feeling, but rather as a “record of the motions of a struggle to know, if not the truth, then the weft of all competing lies.”
Also on Instagram.
Literature discussed
• Susan Sontag, Illness as Metaphor
• Kathy Acker, The Gift of Disease
• Rachel Carson, Silent Spring
• Aelius Aristides, Sacred Tales
• Siddhartha Mukherjee, The Emperor of All Maladies
• Clarice Lispector, Aqua viva
• John Donne, Devotions upon Emergent Occasions
• Michael Foucault, The Birth of the Clinic
• Harriet Martineau, Life in the Sick-Room
• Woolf et al, On Being Ill
• Goethe, Faust
• Bertolt Brecht, Brecht on Art & Politics
• Fanny Burney, Diaries and Letters
• Audre Lorde, The Cancer Journals
Quotations
“To be declared with certainty ill while feeling with certainty fine is to fall on the hardness of language without being given even an hour of soft uncertainty in which to steady oneself with preemptive worry."
“A newly diagnosed person with access to the Internet is information’s incubant. Data visits like a minor god. Awake, we pass the day staring into the screen’s abyss, feeling the constriction of the quantitative, trying to learn to breathe through the bar graphs, head full of sample sizes and survival curves, eyes dimming, body reverent to math.”
“Your hair will fall out onto every surface you come near: it will fall into new alphabets and new words. Read these words to discover the etiology of your illness: If you are lucky you will read another word that means “illness has turned you into an armament”.
“If you begin to accept your illness, or even to love it, you worry that you might want to keep it around. You think, when you feel bad, that you will never long for it, but in truth you do, since it provides such clear instruction for existing, brings with it the sharpened optics of life without futurity, the purity of the double vision of any life lived on the line.”
“A sick person in bed is the ward of love, if she is lucky, and the orphan of action, even if she is not. All the accumulated gorgeousness of life in bed can be eclipsed by gravity there, and dreams, too, become occluded by pain. Every pleasure of a bed can, during illness, disappear behind fresh architectures of worry.”
“A well person’s astral projection remains mostly atmospheric, but the deeply ill person in pain, in order to escape it, can sprint away from the pain-husk of the failing body and think themselves into a range beyond range. When pain is so vast, it makes it hard to remember history or miles per hour, which should make the sickbed the incubator for almost all genius and nearly most revolution.”
December 7, 2019
In 2014, Boyer, then a 41-year-old poet and professor at the Kansas City Art Institute (and a single mother) was diagnosed with triple-negative breast cancer. The book’s subtitle gives you clues to the sort of practical and emotional territory that’s covered here. Although she survived this highly aggressive cancer, she was not unscathed: the particular chemotherapy she had is so toxic it leads to lasting nerve damage and a brain fog that hasn’t completely lifted.
All the more impressive, then, that Boyer has been able to put together this ferociously intellectual response to American cancer culture. Her frame of reference ranges from ancient Greece – Aelius Aristides, who lived in a temple, hoping the gods would reveal the cure to his wasting illness via dreams, becomes an offbeat hero for her – to recent breast cancer vloggers. She is scathing on vapid pink-ribbon cheerleading that doesn’t substantially improve breast cancer patients’ lives, and on profit-making healthcare schemes that inevitably discriminate against poor women of color and send people home within days of a double mastectomy. Through her own experience, she reflects on the pressure women are under to be brave, to be optimistic, to go to work as normal, and to look as beautiful as ever when they are in excruciating pain and beyond exhaustion.
Impossible to avoid comparisons to Susan Sontag’s Illness as Metaphor, but this book has a personal power I don’t remember finding in Sontag’s more detached, academic-level work. Boyer sees herself as one in a long lineage of women writing about their cancer – from Fanny Burney to Audre Lorde – and probes the limits of language when describing pain. I was reminded of another terrific adjacent book from this year, Constellations, by Sinéad Gleeson, especially where Boyer describes a 10-part pain scale (Gleeson has a set of 20 poems based on the McGill Pain Index).
I could quote excellent passages all day, but here are a few that stood out to me:
“People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heart-wrenchingly worse. We are supposed to keep our unhappiness to ourselves but donate our courage to everyone.”
“Every person with a body should be given a guide to dying as soon as they are born.”
“The moral failure of breast cancer is not in the people who die: it is in the world that makes them sick, bankrupts them for a cure that also makes them sick, then blames them for their own deaths.”
“If suffering is like a poem, I want mine to be lurid, righteous, and goth.”
“Exhaustion is boring, requires no genius, is democratic in practice, lacks fans. In this, it’s like experimental literature.”
Originally published on my blog, Bookish Beck.
All the more impressive, then, that Boyer has been able to put together this ferociously intellectual response to American cancer culture. Her frame of reference ranges from ancient Greece – Aelius Aristides, who lived in a temple, hoping the gods would reveal the cure to his wasting illness via dreams, becomes an offbeat hero for her – to recent breast cancer vloggers. She is scathing on vapid pink-ribbon cheerleading that doesn’t substantially improve breast cancer patients’ lives, and on profit-making healthcare schemes that inevitably discriminate against poor women of color and send people home within days of a double mastectomy. Through her own experience, she reflects on the pressure women are under to be brave, to be optimistic, to go to work as normal, and to look as beautiful as ever when they are in excruciating pain and beyond exhaustion.
Impossible to avoid comparisons to Susan Sontag’s Illness as Metaphor, but this book has a personal power I don’t remember finding in Sontag’s more detached, academic-level work. Boyer sees herself as one in a long lineage of women writing about their cancer – from Fanny Burney to Audre Lorde – and probes the limits of language when describing pain. I was reminded of another terrific adjacent book from this year, Constellations, by Sinéad Gleeson, especially where Boyer describes a 10-part pain scale (Gleeson has a set of 20 poems based on the McGill Pain Index).
I could quote excellent passages all day, but here are a few that stood out to me:
“People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heart-wrenchingly worse. We are supposed to keep our unhappiness to ourselves but donate our courage to everyone.”
“Every person with a body should be given a guide to dying as soon as they are born.”
“The moral failure of breast cancer is not in the people who die: it is in the world that makes them sick, bankrupts them for a cure that also makes them sick, then blames them for their own deaths.”
“If suffering is like a poem, I want mine to be lurid, righteous, and goth.”
“Exhaustion is boring, requires no genius, is democratic in practice, lacks fans. In this, it’s like experimental literature.”
Originally published on my blog, Bookish Beck.
May 5, 2021
I’m marking this book finished but I did not finish it. In fact I can’t abide another minute of it. I realized as soon as she quoted some ancient philosopher I was not going to like it but since it was only five hours and I’d used a credit on it I was determined to grit my teeth and get through it. But I can’t. I was a philosophy major (albeit many many years ago) and I can’t understand half of what she’s saying. Even if could I truly detest books written by academicians who apply literature and philosophy in tortured abstract ways to their life experiences. Others must enjoy this because these types of books generally get glowing reviews (and the New York Times put it on a best books list which is what led me to it) but I find it pretentious, uninteresting and utterly without merit.
March 27, 2021
“Razumećete, nadam se, da zbog svega ovoga, svaka ružičasta traka liči na zastavu osvajača pobodenu u grob jedne žene.”
Bolno jak memoar, veličanstvena oda borbi života sa smrću - “Ne umirem” je dokaz da i u trenucima kada je oko nas nepregledna crnina, sve dok u nama postoji onaj jedan jedini zrak svetlosti, životu nikada ništa ne može stati na put.
Bolno jak memoar, veličanstvena oda borbi života sa smrću - “Ne umirem” je dokaz da i u trenucima kada je oko nas nepregledna crnina, sve dok u nama postoji onaj jedan jedini zrak svetlosti, životu nikada ništa ne može stati na put.
October 8, 2019
The Undying is a grim look at one woman’s treatment of triple negative breast cancer. After finishing my own chemotherapy for the same type of cancer last month, I put my brave face on and decided to read the book to compare our treatments. I believe the author is overthinking the whole experience with her intellectual and philosophical knowledge. But that could be a difference in our personalities, too. Our chemotherapies were the same, but I never viewed myself as a sick and abandoned animal. I do agree that it’s difficult to remember the previously healthy person inside of me. Hopefully that will change with time.
June 10, 2023
never have I highlighted so many passages in a book, such a poignant text that I will return to over and over
July 8, 2020
“Disease is never neutral. Treatment never not ideological. Mortality never without its politics.”
This book (by one of my favorite writers) has been called a memoir, but could also be described as a poem, a series of essays, a history, or a Marxist feminist manifesto on breast cancer. I think I could write a hundred reviews of this book, each from a different perspective. I could write a review that approaches this book from the perspective of spirituality and dreams. I could write a review that approaches this book from the perspective of poetry and storytelling. But as I read this book, I kept wishing I had gotten the chance to read it for class, back when I got to spend every day discussing illness and capitalism with my classmates and professors. So I’ll write my review as a student.
As other reviews have noted, this is not a hopeful book; Boyer pushes hard against narratives of medical progress. Cancer treatment may be increasingly high-tech and expensive, but as she notes, many patients still go without “adequate pain control… physical therapy… time off work… a hospital bed to recover in or rehabilitation for the cognitive damage incurred during their treatment.” Why are our notions of progress so bound up in the romance of biotechnology, rather than these most basic and desperate needs of the sick? In Boyer’s writing, the shadow of capitalism is heavy on the clinic floor.
Boyer points out that modern science and medicine, for all their trappings of post-Enlightenment rationality, make their own assumptions and carry their own demands of faith. And she insists upon recognizing oncology’s internal debates and ambiguities, including the uncertainty of cancer’s very definition. “‘Cancer’ is a historically specific, socially constructed imprecision and not an empirically established monolith. This whole time I’ve been writing about cancer, I’ve been writing about something that scientists agree doesn’t quite exist, at least not as one unified thing.” Like schizophrenia, the diagnostic criteria for which have changed over the decades to reinforce social control, and like symptoms of nervos, which present with cultural specificity in Brazil, cancer is historically contingent and socially constructed. And while this very argument forms the basis of much work in medical anthropology and history of science, this is my first time encountering it in a patient narrative--which is just one of the many things which makes this book so special.
A significant part of the book is dedicated to the discussion of pain. Almost as soon as she introduces the subject, Boyer references Elaine Scarry’s famous claim that pain “destroys language,” and that this resistance to language makes pain a completely isolating and private experience. Boyer’s response is that “the claims about pain’s ineffability are historically specific and ideological, that pain is widely declared inarticulate for the reason that we are not supposed to share a language for how we really feel,” and that pain could have a language: it just requires the work of producing one. Although this initial argument feels perhaps a little unfair to Scarry, who does engage with a few attempts (in both medicine and art) to produce a new lexicon of pain, and who is concerned above all with the political consequences of suppressing pain’s expression, Boyer goes on to provide rebuttals I find more convincing, particularly by noting that pain is sometimes so vivid in its expression that it provokes sympathetic discomfort, and that sometimes that discomfort is so strong that it provokes continued violence.
Scarry’s work has received its fair share of arguments since it was published in 1985, and her response echoes many of these. Like Byron Good, Boyer emphasizes that pain can actually inspire a great degree of articulate expression, and like Julie Livingston, she argues that it is a lie to say “that we are always alone in pain,” which can be a social experience. Again, however, the fact that this is also a patient narrative adds another layer to the argument. Her eloquence in describing pain functions itself as evidence against the idea that pain destroys language. If Scarry herself were to read Boyer’s writing on the experience of pain, surely she would have to be convinced.
One of the most powerful things about this book is Boyer’s thorough refusal to embody the role of the idealized cancer patient, or the idealized sufferer more generally. She is incredibly intentional about this, writing of her fear that with this memoir she might “turn the pain into a product,” or tell “a lie in service of the way things are,” or “propagandize for the world as it is.” This review is getting super long, so suffice it to say that this book could never be accused of doing those things. It is deeply honest, anti-commercial, and at odds with both ease and power every step of the way (as she writes at one point, a beautiful book against beauty). It is defiant of and angry at the expectations that patients manage their disease with positivity and deference to the healthy, that they make normality their goal or standard, that they sacrifice their autonomy and self-respect, that they ally themselves with the living at the expense of the dead.
Gonna close with this quote that I want to tattoo on my forehead:
“What a relief to have not been protected, I decided, to not be a subtle or delicate person whose inner experience is made only of taste and polite feeling; what a relief not to collect tiny wounds as if they are the greatest injuries while all the rest of the world always, really, actually bleeds. It’s yet another error in perception that those with social protection can look at those who have at times lacked it, and imagine that weakness is in the bleeder, not those who have never bled. Those who diminish the beauty and luxury of survival must do so because they have been so rarely almost dead.”
This book (by one of my favorite writers) has been called a memoir, but could also be described as a poem, a series of essays, a history, or a Marxist feminist manifesto on breast cancer. I think I could write a hundred reviews of this book, each from a different perspective. I could write a review that approaches this book from the perspective of spirituality and dreams. I could write a review that approaches this book from the perspective of poetry and storytelling. But as I read this book, I kept wishing I had gotten the chance to read it for class, back when I got to spend every day discussing illness and capitalism with my classmates and professors. So I’ll write my review as a student.
As other reviews have noted, this is not a hopeful book; Boyer pushes hard against narratives of medical progress. Cancer treatment may be increasingly high-tech and expensive, but as she notes, many patients still go without “adequate pain control… physical therapy… time off work… a hospital bed to recover in or rehabilitation for the cognitive damage incurred during their treatment.” Why are our notions of progress so bound up in the romance of biotechnology, rather than these most basic and desperate needs of the sick? In Boyer’s writing, the shadow of capitalism is heavy on the clinic floor.
Boyer points out that modern science and medicine, for all their trappings of post-Enlightenment rationality, make their own assumptions and carry their own demands of faith. And she insists upon recognizing oncology’s internal debates and ambiguities, including the uncertainty of cancer’s very definition. “‘Cancer’ is a historically specific, socially constructed imprecision and not an empirically established monolith. This whole time I’ve been writing about cancer, I’ve been writing about something that scientists agree doesn’t quite exist, at least not as one unified thing.” Like schizophrenia, the diagnostic criteria for which have changed over the decades to reinforce social control, and like symptoms of nervos, which present with cultural specificity in Brazil, cancer is historically contingent and socially constructed. And while this very argument forms the basis of much work in medical anthropology and history of science, this is my first time encountering it in a patient narrative--which is just one of the many things which makes this book so special.
A significant part of the book is dedicated to the discussion of pain. Almost as soon as she introduces the subject, Boyer references Elaine Scarry’s famous claim that pain “destroys language,” and that this resistance to language makes pain a completely isolating and private experience. Boyer’s response is that “the claims about pain’s ineffability are historically specific and ideological, that pain is widely declared inarticulate for the reason that we are not supposed to share a language for how we really feel,” and that pain could have a language: it just requires the work of producing one. Although this initial argument feels perhaps a little unfair to Scarry, who does engage with a few attempts (in both medicine and art) to produce a new lexicon of pain, and who is concerned above all with the political consequences of suppressing pain’s expression, Boyer goes on to provide rebuttals I find more convincing, particularly by noting that pain is sometimes so vivid in its expression that it provokes sympathetic discomfort, and that sometimes that discomfort is so strong that it provokes continued violence.
Scarry’s work has received its fair share of arguments since it was published in 1985, and her response echoes many of these. Like Byron Good, Boyer emphasizes that pain can actually inspire a great degree of articulate expression, and like Julie Livingston, she argues that it is a lie to say “that we are always alone in pain,” which can be a social experience. Again, however, the fact that this is also a patient narrative adds another layer to the argument. Her eloquence in describing pain functions itself as evidence against the idea that pain destroys language. If Scarry herself were to read Boyer’s writing on the experience of pain, surely she would have to be convinced.
One of the most powerful things about this book is Boyer’s thorough refusal to embody the role of the idealized cancer patient, or the idealized sufferer more generally. She is incredibly intentional about this, writing of her fear that with this memoir she might “turn the pain into a product,” or tell “a lie in service of the way things are,” or “propagandize for the world as it is.” This review is getting super long, so suffice it to say that this book could never be accused of doing those things. It is deeply honest, anti-commercial, and at odds with both ease and power every step of the way (as she writes at one point, a beautiful book against beauty). It is defiant of and angry at the expectations that patients manage their disease with positivity and deference to the healthy, that they make normality their goal or standard, that they sacrifice their autonomy and self-respect, that they ally themselves with the living at the expense of the dead.
Gonna close with this quote that I want to tattoo on my forehead:
“What a relief to have not been protected, I decided, to not be a subtle or delicate person whose inner experience is made only of taste and polite feeling; what a relief not to collect tiny wounds as if they are the greatest injuries while all the rest of the world always, really, actually bleeds. It’s yet another error in perception that those with social protection can look at those who have at times lacked it, and imagine that weakness is in the bleeder, not those who have never bled. Those who diminish the beauty and luxury of survival must do so because they have been so rarely almost dead.”
October 29, 2019
This isn't the kind of book anyone is going to pick up for funsies and light reading - so most likely you're either a survivor, surviving, or the loved one of a survivor or someone who didn't survive. The subject matter itself makes this book hard to "rate," I mean how do you rate someone else's breast cancer experience, that sounds asinine in itself - but it is a published book and open to critique like any other book.
This is exactly the book I'd expect a university tenured poet to write about their cancer journey. Is that good? Is that bad? Mostly it's just sprawling, word-y, and if you like stream-of-consciousness writing, poetry, and want to really groove out on this theme, then this is the book for you.
It was not the book for me. I found myself lost in the prose poem effect of her vignettes, struggling to find a narrative rope I could cling to at times. I found it altogether too ethereal and often felt like I was walking in a fog unsure of where the narrative was going and what we were going to do if we ever got there.
My neutral-dislike of the book is due to my own personal taste and I have nothing negative to say about the author's intent, technique, or talent. I know there are a lot of readers who will rejoice in Boyer's prose and find something deep and meaningful in it. It's just not my cup of tea.
This is exactly the book I'd expect a university tenured poet to write about their cancer journey. Is that good? Is that bad? Mostly it's just sprawling, word-y, and if you like stream-of-consciousness writing, poetry, and want to really groove out on this theme, then this is the book for you.
It was not the book for me. I found myself lost in the prose poem effect of her vignettes, struggling to find a narrative rope I could cling to at times. I found it altogether too ethereal and often felt like I was walking in a fog unsure of where the narrative was going and what we were going to do if we ever got there.
My neutral-dislike of the book is due to my own personal taste and I have nothing negative to say about the author's intent, technique, or talent. I know there are a lot of readers who will rejoice in Boyer's prose and find something deep and meaningful in it. It's just not my cup of tea.
February 4, 2021
Simply put, one of the best nonfiction books I will ever read in my life. Boyer's mind is astonishing. Her spectacular intellect is matched by some seriously amazing use of language. RTC.
August 13, 2024
“There is the condition of feeling like a city that is most famous for its ruins” yeah I’ll never shut up about this
May 4, 2021
„U naše vreme, izazov nije ispuniti rečima tišinu, nego naučiti kako napraviti otklon od buke koja često briše sve pred sobom.“
•
•
Svaka bolest ima dijagnozu. Svaka dijagnoza ima šifru. Svaka šifra predstavlja vrata iza kojih se krije nepregledan statistički niz svakog aspekta bolesti. Ti silni brojevi, i poneko slovo, sazdali su bedeme fondacija ili udruženja koje će zastupati interese obolelih ljudi.
En Bojer je bolovala od karcinoma dojke. Postala je jedinka koja se lako gubi u grupi ljudi obolelih od iste bolesti; postala je, imenom i prezimenom, deo svih testova i analiza kojima je bila podvrgnuta. Postala je broj i deo statistike na kojoj kapitalizam, kao i uvek, nađe način da profitira.
Beležeći fragmente svoje borbe sa bolešću, En nam pruža nesvakidašnji uvid u svet pojedinca suočenog sa teškim izborima, mukotrpnim fazama izlečenja koje duh i telo u istoj meri iznuruju, te unikatan pogled na svet i ljude u njemu.
Oštro i precizno, sa perom umesto skalpela u ruci, odstraniće sve predrasude, zablude i uobrazilje o karcinomu, kako zdravih tako i morbidno radoznalih. Osvrćući se na sudbine brojnih pacijenata, ali i razne eksploatacije i mahinacije stručnjaka, En čitatelju na uvid postavlja sve aspekte bolesti - od dijagnoze do izlečenja ili smrti.
•
•
Ovo je delo koje bi trebalo da se čita polako, ali to nije moguće. Kada zakoračite iza kapije koju vam autorka širom otvara, informacije koje su vam do tada bile nepoznanica u vama bude osećaj žeđi za spoznajom. Atmosfera je, s punim pravom, klaustrofobična i napeta kao struna. Pasusi su delići oštre i otrežnjujuće slagalice koju vi, u isto vreme empatični i istom merom besni, sklapate. Kivni na zdravstveni sistem, na lečenje, ruski rulet koji igra svaki pacijent, koje vraća život po cenu života kakvim ga je on do tada znao.
Svaka bolest ima šifru. Iza nje su ljudi čije srce borbeno pulsira. Sazdani su od želja, snova i uspomena. Buka koja ih zapljusne kad se susretnu sa dijagnozom često je zaglušujuća.
U ovom brzom i ludom vremenu u kom živimo, svako je doktor. Budite neko ko će saslušati i pomoći lepom rečju ili prosto tišinom koja će bar na tren nadjačati buku.
•
•
Svaka bolest ima dijagnozu. Svaka dijagnoza ima šifru. Svaka šifra predstavlja vrata iza kojih se krije nepregledan statistički niz svakog aspekta bolesti. Ti silni brojevi, i poneko slovo, sazdali su bedeme fondacija ili udruženja koje će zastupati interese obolelih ljudi.
En Bojer je bolovala od karcinoma dojke. Postala je jedinka koja se lako gubi u grupi ljudi obolelih od iste bolesti; postala je, imenom i prezimenom, deo svih testova i analiza kojima je bila podvrgnuta. Postala je broj i deo statistike na kojoj kapitalizam, kao i uvek, nađe način da profitira.
Beležeći fragmente svoje borbe sa bolešću, En nam pruža nesvakidašnji uvid u svet pojedinca suočenog sa teškim izborima, mukotrpnim fazama izlečenja koje duh i telo u istoj meri iznuruju, te unikatan pogled na svet i ljude u njemu.
Oštro i precizno, sa perom umesto skalpela u ruci, odstraniće sve predrasude, zablude i uobrazilje o karcinomu, kako zdravih tako i morbidno radoznalih. Osvrćući se na sudbine brojnih pacijenata, ali i razne eksploatacije i mahinacije stručnjaka, En čitatelju na uvid postavlja sve aspekte bolesti - od dijagnoze do izlečenja ili smrti.
•
•
Ovo je delo koje bi trebalo da se čita polako, ali to nije moguće. Kada zakoračite iza kapije koju vam autorka širom otvara, informacije koje su vam do tada bile nepoznanica u vama bude osećaj žeđi za spoznajom. Atmosfera je, s punim pravom, klaustrofobična i napeta kao struna. Pasusi su delići oštre i otrežnjujuće slagalice koju vi, u isto vreme empatični i istom merom besni, sklapate. Kivni na zdravstveni sistem, na lečenje, ruski rulet koji igra svaki pacijent, koje vraća život po cenu života kakvim ga je on do tada znao.
Svaka bolest ima šifru. Iza nje su ljudi čije srce borbeno pulsira. Sazdani su od želja, snova i uspomena. Buka koja ih zapljusne kad se susretnu sa dijagnozom često je zaglušujuća.
U ovom brzom i ludom vremenu u kom živimo, svako je doktor. Budite neko ko će saslušati i pomoći lepom rečju ili prosto tišinom koja će bar na tren nadjačati buku.
November 6, 2019
best book i have read this year
May 10, 2024
Menuda maravilla❤️🩹❤️🩹❤️🩹
May 13, 2021
To było bardzo dobre, niezwykle ciekawe, ważne i wartościowe! A do tego świetnie napisane! Pochłonęłam ją praktycznie na raz i zaznaczyłam mnóstwo cytatów. I choć druga połowa była dla mnie mniej angażująca (bo było mniej medycyny 🙈), to warto warto warto! Pulitzer jak najbardziej zasłużony!
„Obumarła” jest błyskotliwą i odważną lekturą, przejmującą, ale nie przytłaczającą, napisaną z dużym wyczuciem i wrażliwością.
.
„Mówi się nam, że rak to intruz, z którym trzeba walczyć, zbłąkany aspekt nas samych, rodzaj nadambitnych komórek, obraz kapitalizmu, naturalne zjawisko, z którym można żyć, zwiastun pewnej śmierci. Mówi się nam, że to przez nasze DNA, mówi się, że to przez świat bądź przez zagmatwaną wypadkową wpływu genów i środowiska, której nikt nie potrafi lub nie chce określić. Dostajemy tę głośną połowę prawdopodobieństwa, tę, że przyczyna znajduje się w nas, ale nigdy nie daje się nam tej cichej – że przyczyna przenika nasz wspólny świat. Bada się nasze geny – ale nie wodę, którą pijemy. Skanuje się nasze ciała, ale nie powietrze. Mówi się nam, że to przez błędy naszych uczuć albo nieuniknioności ciała.”
„Obumarła” jest błyskotliwą i odważną lekturą, przejmującą, ale nie przytłaczającą, napisaną z dużym wyczuciem i wrażliwością.
.
„Mówi się nam, że rak to intruz, z którym trzeba walczyć, zbłąkany aspekt nas samych, rodzaj nadambitnych komórek, obraz kapitalizmu, naturalne zjawisko, z którym można żyć, zwiastun pewnej śmierci. Mówi się nam, że to przez nasze DNA, mówi się, że to przez świat bądź przez zagmatwaną wypadkową wpływu genów i środowiska, której nikt nie potrafi lub nie chce określić. Dostajemy tę głośną połowę prawdopodobieństwa, tę, że przyczyna znajduje się w nas, ale nigdy nie daje się nam tej cichej – że przyczyna przenika nasz wspólny świat. Bada się nasze geny – ale nie wodę, którą pijemy. Skanuje się nasze ciała, ale nie powietrze. Mówi się nam, że to przez błędy naszych uczuć albo nieuniknioności ciała.”
December 29, 2021
Hace unos días di una breve conferencia sobre nuevas mutaciones en el cáncer de mama, y sobre los nuevos descubrimientos y aplicaciones terapéuticas. Insistí, cómo lo hago siempre con residentes, que antes de ser patólogos o investigadores, somos médicos y debemos involucrarnos en todo el proceso de las pacientes. Entre el público, alcancé a percibir algunas cabezas asintiendo. Ojalá quede bien grabado el mensaje. Porque las palabras que nosotros emitimos son precisamente las que van a devastar a las mujeres que reciben el diagnóstico. Tenemos un tremendo y terrible poder.
Es innegable el horroroso camino por el que una mujer debe pasar desde que se le detecta el cáncer hasta el desenlace, sea cual sea. Es horrible el estigma que yace sobre ellas (Sontag habla mucho de eso, y aquí Boyer incluso la reta). Y claro que es horrible el ambiente hospitalario y de la medicina.
Escribir sobre la enfermedad mientras está enferma requiere de un esfuerzo sobrehumano. No solo es una crónica, sino que aborda temas (cierto, de manera superficial) variados que impactan en la calidad de vida de las pacientes. Llámese, desde el trato recibido por el personal de salud, la sociedad, los amigos y familiares; la poca facilidad que se le da al duelo y a sobrellevar la carga física; el cansancio, el pesado cansancio; y, sobre todo, el negocio redondo de la farmacéutica y sus consecuencias.
Hay algunas cuestiones sobre la naturaleza del cáncer y su tratamiento que me llamaron mucho la atención y que conviene mencionar, aunque solo escribiré un par.
Boyer dice que el cáncer de mama triple negativo (es decir, aquel que no expresa receptores hormonales o de HER2, necesarios para instaurar un tratamiento específico) “afecta a las mujeres negras de forma desproporcionada y, debido al racismo institucionalizado en la medicina, creo, ha sido el último cáncer de mama sin tratamiento dirigido”. Es una aseveración infundada y un tanto peligrosa, pues puede generar en el público lector una idea falsa y paranoica de que no se ha enfocado lo suficiente en el estudio de este tipo de cáncer, específicamente por un tema de prejuicio racial. Basta decir que el complejo entramado molecular del cáncer de mama ha ido evolucionando con los años, y se ha comprendido un poco mejor cada vez cómo se desarrolla el carcinoma triple negativo, así como sus propios subtipos, y sus potenciales terapéuticas: es obvio que, a mayor detalle molecular donde encontramos una alteración, es más complejo desarrollar un medicamento por completo específico a esa alteración. Y no solo hablo del cáncer de mama, es en toda la anatomía humana.
En otro lado menciona que la quimioterapia en el futuro será vista como algo bárbaro, así como nosotros vemos ahora las sangrías, y que su uso en ocasiones no tiene razón de ser, y se aplica por lucro. Esto también puede dar una idea errónea y peligrosa a los lectores, dando a entender que no se está haciendo un esfuerzo inconmensurable para encontrar mejores terapias. Funciona, sí, y también tiene efectos secundarios, claro. Las terapias blanco, dirigidas a moléculas específicas, también tienen efectos secundarios, en ocasiones tan severos que tienen que retirar el fármaco y detener los ensayos clínicos. No, no existe aún una terapia tan prometedora que cure a todas las pacientes y no tenga ningún efecto secundario. Y tampoco se trata de usar la quimio como lucro; en el trasfondo, la falta de recursos para la investigación puede ser un efecto del capitalismo rapaz que prefiere invertir en otras cosas, pero no es como si la medicina *quiera* lucrar con el dolor y el uso de quimioterapia. A menos que en Estados Unidos sean muy diferentes (cosa que no dudo).
Se lee rápido, es doloroso, y atrapa al instante. Merece reconocimiento, aunque hay que tomar algunas aseveraciones con cuidado.
Es innegable el horroroso camino por el que una mujer debe pasar desde que se le detecta el cáncer hasta el desenlace, sea cual sea. Es horrible el estigma que yace sobre ellas (Sontag habla mucho de eso, y aquí Boyer incluso la reta). Y claro que es horrible el ambiente hospitalario y de la medicina.
Escribir sobre la enfermedad mientras está enferma requiere de un esfuerzo sobrehumano. No solo es una crónica, sino que aborda temas (cierto, de manera superficial) variados que impactan en la calidad de vida de las pacientes. Llámese, desde el trato recibido por el personal de salud, la sociedad, los amigos y familiares; la poca facilidad que se le da al duelo y a sobrellevar la carga física; el cansancio, el pesado cansancio; y, sobre todo, el negocio redondo de la farmacéutica y sus consecuencias.
Hay algunas cuestiones sobre la naturaleza del cáncer y su tratamiento que me llamaron mucho la atención y que conviene mencionar, aunque solo escribiré un par.
Boyer dice que el cáncer de mama triple negativo (es decir, aquel que no expresa receptores hormonales o de HER2, necesarios para instaurar un tratamiento específico) “afecta a las mujeres negras de forma desproporcionada y, debido al racismo institucionalizado en la medicina, creo, ha sido el último cáncer de mama sin tratamiento dirigido”. Es una aseveración infundada y un tanto peligrosa, pues puede generar en el público lector una idea falsa y paranoica de que no se ha enfocado lo suficiente en el estudio de este tipo de cáncer, específicamente por un tema de prejuicio racial. Basta decir que el complejo entramado molecular del cáncer de mama ha ido evolucionando con los años, y se ha comprendido un poco mejor cada vez cómo se desarrolla el carcinoma triple negativo, así como sus propios subtipos, y sus potenciales terapéuticas: es obvio que, a mayor detalle molecular donde encontramos una alteración, es más complejo desarrollar un medicamento por completo específico a esa alteración. Y no solo hablo del cáncer de mama, es en toda la anatomía humana.
En otro lado menciona que la quimioterapia en el futuro será vista como algo bárbaro, así como nosotros vemos ahora las sangrías, y que su uso en ocasiones no tiene razón de ser, y se aplica por lucro. Esto también puede dar una idea errónea y peligrosa a los lectores, dando a entender que no se está haciendo un esfuerzo inconmensurable para encontrar mejores terapias. Funciona, sí, y también tiene efectos secundarios, claro. Las terapias blanco, dirigidas a moléculas específicas, también tienen efectos secundarios, en ocasiones tan severos que tienen que retirar el fármaco y detener los ensayos clínicos. No, no existe aún una terapia tan prometedora que cure a todas las pacientes y no tenga ningún efecto secundario. Y tampoco se trata de usar la quimio como lucro; en el trasfondo, la falta de recursos para la investigación puede ser un efecto del capitalismo rapaz que prefiere invertir en otras cosas, pero no es como si la medicina *quiera* lucrar con el dolor y el uso de quimioterapia. A menos que en Estados Unidos sean muy diferentes (cosa que no dudo).
Se lee rápido, es doloroso, y atrapa al instante. Merece reconocimiento, aunque hay que tomar algunas aseveraciones con cuidado.
November 20, 2019
This was difficult to approach at first, I think honestly because I haven't read anything like it, but as I got into it, it was SO mind-boggling and really forced me to think about not only narratives around cancer but health generally. Boyer doesn't go much into disability or crip studies, which might have put her in conversation with some really interesting lines of thought (I, certainly, would have LOVED to see some of that, and would love to talk with folks who have read both some disability studies and this book,) but she does put herself in conversation with other women writers who died from cancer, and so many other things it can kind of make your head spin, in the best way. There are just so many levels to her thoughts here, and the loss of cognitive ability, and pain, and so many things. It's a book I will almost definitely return to and get even more out of it, and I feel like I got a lot out of it already. Definitely recommended!
January 1, 2020
I won this book through a giveaway in exchange for an honest review.
Holy smokes! There was A LOT captured in this book! I was a tad hesitant at first, not sure if it was really a book for me. I was proven wrong, and proven wrong quickly, at that!
Not only does this book touch on many different topics, it also makes you feel. Like, really, FEEL. Whether you have been through the exact same experience, whether you know someone who has, whether you don’t have any experience whatsoever with the points in this book, there is STILL something everyone can relate to! I feel like that is hard to say about a book. Especially a book about Cancer.
I am glad to have read this, and I feel wiser for it. My plan is to pass my copy on to a friend who after 20 years of dealing with cancer is FINALLY in remission. I think she will really enjoy this! Thank you!
Holy smokes! There was A LOT captured in this book! I was a tad hesitant at first, not sure if it was really a book for me. I was proven wrong, and proven wrong quickly, at that!
Not only does this book touch on many different topics, it also makes you feel. Like, really, FEEL. Whether you have been through the exact same experience, whether you know someone who has, whether you don’t have any experience whatsoever with the points in this book, there is STILL something everyone can relate to! I feel like that is hard to say about a book. Especially a book about Cancer.
I am glad to have read this, and I feel wiser for it. My plan is to pass my copy on to a friend who after 20 years of dealing with cancer is FINALLY in remission. I think she will really enjoy this! Thank you!
December 4, 2019
whooaooaoawwow can't get over this piece of genius- tender comprehensive real brilliance. Anne Boyer is so smart, this is obvious. and she approaches a piece about health, cancer, care, capitalism, gender, sixkness...etc..with such a unique voice. this is necessary! It is poetry and prose and it invokes such incredible voices and stories of writers and women and people who have experienced such pain and aloneness. The whole time I was reading it I knew I was missing so much of it. But maybe that was/is ok. I missed a lot but gathered so much and feel more connected to the complexity and constructedness of something like cancer and what it means to live in a body in this sickened world.
December 30, 2019
This book, well, it kind of ruined my day, which is another way of saying it's a devastating book. It's also a necessary book. Anne Boyer does more than reveal the misogyny, classism, racism and other injustices laden in the breast cancer industrial complex and healthcare in general. She also untangles deceptions that have led many of us to put troubling, unflinching faith in a system that cashes in on our ignorance and other failures. This is a book I cannot forget.
February 13, 2020
This book was interesting. very sad and very hard to read at points. but powerful and beautiful. not an enjoyable reading experience.
November 8, 2020
Ho concluso "Non morire" e immediatamente l'ho inserito nella lista - immateriale e posposta a tempi lontani e indefiniti, ma reale - dei libri da rileggere.
Sono poche pagine, quelle di Anne Boyer, ma densissime, dotte e citazionistiche. Inevitabilmente, come con una certa rabbia ammette lei stessa, si tratta di una brutale testimonianza della propria malattia - carcinoma mammario triplo negativo -, ma l'approccio alla stessa è illuministico. Lo scopo è riflettere, e razionalizzare, e forse esorcizzare la malattia e i costrutti sociali che gravano sulla condizione del malato di cancro. Gli spunti sono innumerevoli, poiché enorme è la materia e di conseguenza molto il non detto. Nel corso dei capitoli, non manca lo spazio per riflettere sui guadagni delle casa farmaceutiche a danno di chi soffre, né una importante riflessione sulla condizione della donna (soprattutto se single, povera e/o non bianca) di fronte alla malattia.
Ammetto di aver fatto molta difficoltà nella lettura. Lo stile dei Boyer risente delle sue radici nella poesia, tanto che spesso mi sono ritrovato a dover rileggere interi periodi per afferrare il senso di ciò che stavo leggendo (e a volte ciò non è bastato). Il suo è un periodare criptico, lirico ed estruso - lanciato fuori con "violenza poetica/violenta poesia" in faccia a chi legge. Di frequente, poi, ha vinto la mia ignoranza: su alcuni concetti, figli di un'intellettuale - e appassionata filosofa - di livello accademico, ho alzato bandiera bianca. Eppure, molto mi è arrivato ugualmente, al di là dei miei limiti: il dolore, la rabbia, il bisogno di comunicare. Forse la rassegnazione, di certo il desiderio di spingervisi oltre grazie all'intelletto.
Ho imparato molto.
È per questo che mi propongo di rileggerlo in futuro, quando magari sarò venuto anche a capo di questo mio strano bisogno di immergermi nella lettura di pagine scritte sul confine con la morte.
A margine: credo che la lettura sia resa ancora più difficoltosa dalla traduzione. Ho dato un'occhiata al testo originale, per un certo stridore che avvertivo in sottofondo, e mi è parso di intravedere troppa irruenza nella mano della traduttrice. Quasi un bisogno di interpretare per "rendere meglio". Magari mi sbaglio, ma sicuramente la mia rilettura sarà in lingua inglese.
Sono poche pagine, quelle di Anne Boyer, ma densissime, dotte e citazionistiche. Inevitabilmente, come con una certa rabbia ammette lei stessa, si tratta di una brutale testimonianza della propria malattia - carcinoma mammario triplo negativo -, ma l'approccio alla stessa è illuministico. Lo scopo è riflettere, e razionalizzare, e forse esorcizzare la malattia e i costrutti sociali che gravano sulla condizione del malato di cancro. Gli spunti sono innumerevoli, poiché enorme è la materia e di conseguenza molto il non detto. Nel corso dei capitoli, non manca lo spazio per riflettere sui guadagni delle casa farmaceutiche a danno di chi soffre, né una importante riflessione sulla condizione della donna (soprattutto se single, povera e/o non bianca) di fronte alla malattia.
Ammetto di aver fatto molta difficoltà nella lettura. Lo stile dei Boyer risente delle sue radici nella poesia, tanto che spesso mi sono ritrovato a dover rileggere interi periodi per afferrare il senso di ciò che stavo leggendo (e a volte ciò non è bastato). Il suo è un periodare criptico, lirico ed estruso - lanciato fuori con "violenza poetica/violenta poesia" in faccia a chi legge. Di frequente, poi, ha vinto la mia ignoranza: su alcuni concetti, figli di un'intellettuale - e appassionata filosofa - di livello accademico, ho alzato bandiera bianca. Eppure, molto mi è arrivato ugualmente, al di là dei miei limiti: il dolore, la rabbia, il bisogno di comunicare. Forse la rassegnazione, di certo il desiderio di spingervisi oltre grazie all'intelletto.
Ho imparato molto.
È per questo che mi propongo di rileggerlo in futuro, quando magari sarò venuto anche a capo di questo mio strano bisogno di immergermi nella lettura di pagine scritte sul confine con la morte.
A margine: credo che la lettura sia resa ancora più difficoltosa dalla traduzione. Ho dato un'occhiata al testo originale, per un certo stridore che avvertivo in sottofondo, e mi è parso di intravedere troppa irruenza nella mano della traduttrice. Quasi un bisogno di interpretare per "rendere meglio". Magari mi sbaglio, ma sicuramente la mia rilettura sarà in lingua inglese.
March 30, 2023
"los agotados está agotados porque venden las horas de sus vidas para sobrevivir a sus vidas, luego emplean las horas que no han vendido en poner sus vidas a punto para venderlas, y las horas restantes para hacer lo mismo por otras vidas que aman".
Desmorir de Boyer .
Estar enfermo en un mundo que privatiza la supervivencia. En un universo médico y farmacéutico capitalista.
El laberinto social de la enfermedad, tratamientos como la ciclofosmamida (gas mostaza) y la adriomicina ( muerte roja) , la generalización de los enfermos y del cáncer . El fraude de algunas asociaciones contra el cáncer y sus lazos rosas , toda la gente a la que le pasas a dar pena y se alejan. Tener que dejar de ser tu misma para ser una versión mejorada , una superviviente. "Ponte guapa te sentirás mejor" viene de la mano de un kit gratuito cuyos productos tienen sustancias químicas que pueden incrementar el riesgo de cáncer.
"La enfermedad nunca es neutra. El tratamiento nunca está libre de ideología. La mortalidad nunca está exenta de política".
Brillante Anne Boyer.
Desmorir de Boyer .
Estar enfermo en un mundo que privatiza la supervivencia. En un universo médico y farmacéutico capitalista.
El laberinto social de la enfermedad, tratamientos como la ciclofosmamida (gas mostaza) y la adriomicina ( muerte roja) , la generalización de los enfermos y del cáncer . El fraude de algunas asociaciones contra el cáncer y sus lazos rosas , toda la gente a la que le pasas a dar pena y se alejan. Tener que dejar de ser tu misma para ser una versión mejorada , una superviviente. "Ponte guapa te sentirás mejor" viene de la mano de un kit gratuito cuyos productos tienen sustancias químicas que pueden incrementar el riesgo de cáncer.
"La enfermedad nunca es neutra. El tratamiento nunca está libre de ideología. La mortalidad nunca está exenta de política".
Brillante Anne Boyer.
April 27, 2022
Hace mucho tiempo que quería leer este libro pero soy tan sugestionable que lo postergué durante años. Es que, para las mujeres (aunque a los hombres también les da), hay pocas cosas más terroríficas que el cáncer de mama y a veces uno no quiere ni pensar en el tema por miedo a que se le contagie como por osmosis. No es de extrañar que sea así, en todo caso, entre que nos taponan con info terrible al respecto desde muy chicas y entre que en verdad es uno de los peores cánceres que se puedan tener.
La historia de la autora es como la que se oye de muchas, casualmente palparse un bulto, encontrar un diagnóstico horripilante. Sí es diferente en el sentido de que después logra zafarse, del cáncer, aunque no de las consecuencias de su tratamiento. Todo lo que es el tratamiento al parecer sigue un tanto estancado, sigue siendo terrible y no parece todavía haber avanzado mucho.
Este libro no es solo su testimonio, sino que también el de otras mujeres que le han impresionado y a las que cita y también mucha información adyacente y complementaria. Y varias observaciones muy sagaces, como eso de que sobreabundan los testimonios sobre el cáncer que vivió la hermana, la tía, la mujer, la hija de alguien, pero muy pocos los escritos directamente por los afectados.
A mí lo que más me gustó fueron las partes personales, por terroríficas que fueran (da mucho susto), pero las otras a veces fueron un tanto reiterativas o ambiguas o excesivamente filosóficas para mi gusto. Pero lo que ella hizo igual es un santo aporte a informar sobre esto que sucede y que sigue sucediendo por mucho que uno preferiría obviarlo, y no solo habla del dolor de la enfermedad, sino también del terrible sistema de salud gringo, donde si uno no sigue trabajando simplemente se muere y cómo tuvo que ir a dar clase (es profe) cuando ni siquiera habían terminado de drenarle post operación.
En fin, que cumple mucho con su calidad de testigo y también de crítica. Bastante interesante y también triste. Confieso eso sí que personalmente no pude conectar tanto con la autora. No sé por qué. Quizá irónicamente porque, tal como ella dice, esta vez está escrito por alguien que sí tuvo la enfermedad y no por el amigo o familiar o pareja, y cuando se tiene debe ser mucho más difícil explicarlo. Hay cosas que son tan personales que difícilmente pueden relatarse sin dar sendos vericuetos. En especial si todavía duelen.
Algunas citas que destaqué:
1.
Me duele el reservorio para la quimio recién implantado. Las enfermeras me dicen que los reservorios para la quimio duelen más cuanto más joven eres. Me dicen que todo lo relacionado con el cáncer duele más. Me resisto a bañarme y a asearme, dejo de moverme con libertad. No pienso en otras partes de mi cuerpo, en lo que aún pueden hacer, porque la única parte que duele hace que las demás se desvanezcan en mi conciencia.
2.
Temía, desde el primer día, por mi vocabulario. Todo lo que sucedió fue que escribí en mi diario de una manera tan detallada como minuciosamente evasiva, registré hasta el más ínfimo movimiento de lo que una persona hace cuando tiene ansiedad por una razón que se niega a especificar: cómo hice la colada, barrí el suelo, hice las camas, juré que superaría un amor problemático, me conté a mí misma una historia para no tener que contar otra.
3.
Mi miedo no era al cáncer en sí mismo, sobre el que no sabía casi nada por aquel entonces. Mi miedo provenía de un motor de búsqueda. Temía lo que Google pudiera devolverme al introducir "bulto en el pecho", temía la cultura de la enfermedad tal y como circulara en vlogs y foros, temía cómo las personas eran transformadas en paciente con apodos y firmas, agonías, neologismos y ánimos.
4.
Dentro de unas sesenta horas, y por segunda vez, introducirán adriamicina en mi cuerpo a través de un reservorio de plástico implantado quirúrgicamente en mi tórax y conectado a mi vena yugular. La adriamicina recibió este nombre por el mar Adriático, cerca del cual se descubrió. Su nombre genérico es doxorrubicina, un nombre derivado de "rubí", porque es de un rojo brillante y voluptuoso.
Me gusta pensar en este veneno como el rubí del Adriático, donde nunca he estado, pero adonde me gustaría ir, aunque también es llamado "el diablo rojo" y, a veces, "la muerte roja", así que tal vez debería llamarse también la joya satánica de la mortalidad en las costas de Venecia.
Para administrar la medicina, la enfermera oncológica, después de comprobar la prescripción con una compañera, debe vestirse con un elaborado equipo de protección y despacio, y personalmente, inyectar la adriamicina a través del reservorio en mi pecho. La medicina destruye el tejido circundante si se escapa de las venas: se le considera demasiado peligrosa para todo y para todos como para ser administrada por goteo. Se rumorea que, si se derrama, funde el linóleo del suelo de la clínica.
Durante varios días después de que se me administre la medicación, mis fluidos corporales serán tóxicos para otras personas y corrosivos para los tejidos de mi propio cuerpo. La adriamicina es en ocasiones dañina para el corazón y la cantidad que pueden administrarte tiene un límite de por vida, del cual, al final de este tratamiento, habré alcanzado la mitad.
5.
La semana previa a la quimioterapia es como prepararse para una tormenta invernal, o una tormenta invernal y un huésped, o una tormenta invernal, un huésped y el nacimiento de un hijo; además, tal vez sea como prepararse para todas estas cosas y unas vacaciones, un virus y un breve pero intenso episodio de depresión, todo ello mientras sufres los efectos de la tormenta, el huésped, el parto, las vacaciones, el virus y la depresión previos.
La víspera de mi sesión de quimioterapia llega un amigo de un lugar en el que preferiría estar: California o Vermon o dos ciudades distintas llamadas Atenas o Nueva York o Chicago. Luego es tal cual es: como si hubiera llegado un amigo de lejos.
Aquel día, hago cuanto está en mi mano para parecer sana, para que mi amigo elogie cuán hábil resulta mi camuflaje, los materiales adquiridos en wigs.com, CVS y Sephora. La víspera de mi sesión de quimioterapia no hablamos de la quimioterapia más de lo necesario para el intercambio práctico de información, como a qué hora poner el despertador y la mejor ruta para llegar al pabellón. Pasamos el rato como lo harían dos amigos, asando verduras y escuchando música y hablando con entusiasmo de otros amigos o ideas o acontecimientos políticos. El día de la quimioterapia nos levantamos temprano y llegamos al menos quince minutos tarde. Predecimos lo bien que irá el tratamiento por la canción que suena en la radio del coche: "Bohemian Rapsody" (no muy bien), "Waterfalls" de TLG (mejor).
La quimioterapia, como la mayoría de los tratamientos médicos, es aburrida. Como la muerte, es una larga espera a que te llamen por tu nombre. Además, es una espera mientras el pánico y el dolor en potencia flotan también esperando a que los llamen por su nombre. En esto se parece a la guerra.
6.
Tengo que volver al trabajo diez días después de una mastectomía doble y los preliminares de una reconstrucción con expansor de mama. He estado dando clase durante los meses de quimioterapia antes de mi operación. Pese a todo, se me ha acabado la baja médica.
Habría renunciado a mi derecho de cualquier implante de silicona en el mundo si se me hubiera garantizado que la carrera que había construido seguiría allí si pudiera tomarme unos días para que me trataran el cáncer. Sin embargo, si tu tratamiento contra el cáncer excede el estrecho margen de las semanas no remuneradas que establece la Ley de Permiso Médico y Familiar, no tienes ninguna garantía.
7.
No morí, o al menos no de eso. Cuando superé la amenaza inminente del cáncer, mi hija dijo que había logrado lo imposible: me las había apañado para escribir en vida desde el marco de lo póstumo.
Después del cáncer, mi escritura parecía tener consentimiento total. Cedí algunas mitocondrias neuronales y mi porte y muchos de mis recuerdos y buena parte de mi inteligencia y, según los cálculos más optimistas, entre cinco y diez años de vida a las fuerzas curativas de la aniquilación médica y, tras perder todo eso, descubrí que seguía siendo yo misma, menoscabada en una versión intensificada. Es como si la condición de perderse fuera, cuando se trata de ser una persona, lo que finalmente nos hace auténticos.
La historia de la autora es como la que se oye de muchas, casualmente palparse un bulto, encontrar un diagnóstico horripilante. Sí es diferente en el sentido de que después logra zafarse, del cáncer, aunque no de las consecuencias de su tratamiento. Todo lo que es el tratamiento al parecer sigue un tanto estancado, sigue siendo terrible y no parece todavía haber avanzado mucho.
Este libro no es solo su testimonio, sino que también el de otras mujeres que le han impresionado y a las que cita y también mucha información adyacente y complementaria. Y varias observaciones muy sagaces, como eso de que sobreabundan los testimonios sobre el cáncer que vivió la hermana, la tía, la mujer, la hija de alguien, pero muy pocos los escritos directamente por los afectados.
A mí lo que más me gustó fueron las partes personales, por terroríficas que fueran (da mucho susto), pero las otras a veces fueron un tanto reiterativas o ambiguas o excesivamente filosóficas para mi gusto. Pero lo que ella hizo igual es un santo aporte a informar sobre esto que sucede y que sigue sucediendo por mucho que uno preferiría obviarlo, y no solo habla del dolor de la enfermedad, sino también del terrible sistema de salud gringo, donde si uno no sigue trabajando simplemente se muere y cómo tuvo que ir a dar clase (es profe) cuando ni siquiera habían terminado de drenarle post operación.
En fin, que cumple mucho con su calidad de testigo y también de crítica. Bastante interesante y también triste. Confieso eso sí que personalmente no pude conectar tanto con la autora. No sé por qué. Quizá irónicamente porque, tal como ella dice, esta vez está escrito por alguien que sí tuvo la enfermedad y no por el amigo o familiar o pareja, y cuando se tiene debe ser mucho más difícil explicarlo. Hay cosas que son tan personales que difícilmente pueden relatarse sin dar sendos vericuetos. En especial si todavía duelen.
Algunas citas que destaqué:
1.
Me duele el reservorio para la quimio recién implantado. Las enfermeras me dicen que los reservorios para la quimio duelen más cuanto más joven eres. Me dicen que todo lo relacionado con el cáncer duele más. Me resisto a bañarme y a asearme, dejo de moverme con libertad. No pienso en otras partes de mi cuerpo, en lo que aún pueden hacer, porque la única parte que duele hace que las demás se desvanezcan en mi conciencia.
2.
Temía, desde el primer día, por mi vocabulario. Todo lo que sucedió fue que escribí en mi diario de una manera tan detallada como minuciosamente evasiva, registré hasta el más ínfimo movimiento de lo que una persona hace cuando tiene ansiedad por una razón que se niega a especificar: cómo hice la colada, barrí el suelo, hice las camas, juré que superaría un amor problemático, me conté a mí misma una historia para no tener que contar otra.
3.
Mi miedo no era al cáncer en sí mismo, sobre el que no sabía casi nada por aquel entonces. Mi miedo provenía de un motor de búsqueda. Temía lo que Google pudiera devolverme al introducir "bulto en el pecho", temía la cultura de la enfermedad tal y como circulara en vlogs y foros, temía cómo las personas eran transformadas en paciente con apodos y firmas, agonías, neologismos y ánimos.
4.
Dentro de unas sesenta horas, y por segunda vez, introducirán adriamicina en mi cuerpo a través de un reservorio de plástico implantado quirúrgicamente en mi tórax y conectado a mi vena yugular. La adriamicina recibió este nombre por el mar Adriático, cerca del cual se descubrió. Su nombre genérico es doxorrubicina, un nombre derivado de "rubí", porque es de un rojo brillante y voluptuoso.
Me gusta pensar en este veneno como el rubí del Adriático, donde nunca he estado, pero adonde me gustaría ir, aunque también es llamado "el diablo rojo" y, a veces, "la muerte roja", así que tal vez debería llamarse también la joya satánica de la mortalidad en las costas de Venecia.
Para administrar la medicina, la enfermera oncológica, después de comprobar la prescripción con una compañera, debe vestirse con un elaborado equipo de protección y despacio, y personalmente, inyectar la adriamicina a través del reservorio en mi pecho. La medicina destruye el tejido circundante si se escapa de las venas: se le considera demasiado peligrosa para todo y para todos como para ser administrada por goteo. Se rumorea que, si se derrama, funde el linóleo del suelo de la clínica.
Durante varios días después de que se me administre la medicación, mis fluidos corporales serán tóxicos para otras personas y corrosivos para los tejidos de mi propio cuerpo. La adriamicina es en ocasiones dañina para el corazón y la cantidad que pueden administrarte tiene un límite de por vida, del cual, al final de este tratamiento, habré alcanzado la mitad.
5.
La semana previa a la quimioterapia es como prepararse para una tormenta invernal, o una tormenta invernal y un huésped, o una tormenta invernal, un huésped y el nacimiento de un hijo; además, tal vez sea como prepararse para todas estas cosas y unas vacaciones, un virus y un breve pero intenso episodio de depresión, todo ello mientras sufres los efectos de la tormenta, el huésped, el parto, las vacaciones, el virus y la depresión previos.
La víspera de mi sesión de quimioterapia llega un amigo de un lugar en el que preferiría estar: California o Vermon o dos ciudades distintas llamadas Atenas o Nueva York o Chicago. Luego es tal cual es: como si hubiera llegado un amigo de lejos.
Aquel día, hago cuanto está en mi mano para parecer sana, para que mi amigo elogie cuán hábil resulta mi camuflaje, los materiales adquiridos en wigs.com, CVS y Sephora. La víspera de mi sesión de quimioterapia no hablamos de la quimioterapia más de lo necesario para el intercambio práctico de información, como a qué hora poner el despertador y la mejor ruta para llegar al pabellón. Pasamos el rato como lo harían dos amigos, asando verduras y escuchando música y hablando con entusiasmo de otros amigos o ideas o acontecimientos políticos. El día de la quimioterapia nos levantamos temprano y llegamos al menos quince minutos tarde. Predecimos lo bien que irá el tratamiento por la canción que suena en la radio del coche: "Bohemian Rapsody" (no muy bien), "Waterfalls" de TLG (mejor).
La quimioterapia, como la mayoría de los tratamientos médicos, es aburrida. Como la muerte, es una larga espera a que te llamen por tu nombre. Además, es una espera mientras el pánico y el dolor en potencia flotan también esperando a que los llamen por su nombre. En esto se parece a la guerra.
6.
Tengo que volver al trabajo diez días después de una mastectomía doble y los preliminares de una reconstrucción con expansor de mama. He estado dando clase durante los meses de quimioterapia antes de mi operación. Pese a todo, se me ha acabado la baja médica.
Habría renunciado a mi derecho de cualquier implante de silicona en el mundo si se me hubiera garantizado que la carrera que había construido seguiría allí si pudiera tomarme unos días para que me trataran el cáncer. Sin embargo, si tu tratamiento contra el cáncer excede el estrecho margen de las semanas no remuneradas que establece la Ley de Permiso Médico y Familiar, no tienes ninguna garantía.
7.
No morí, o al menos no de eso. Cuando superé la amenaza inminente del cáncer, mi hija dijo que había logrado lo imposible: me las había apañado para escribir en vida desde el marco de lo póstumo.
Después del cáncer, mi escritura parecía tener consentimiento total. Cedí algunas mitocondrias neuronales y mi porte y muchos de mis recuerdos y buena parte de mi inteligencia y, según los cálculos más optimistas, entre cinco y diez años de vida a las fuerzas curativas de la aniquilación médica y, tras perder todo eso, descubrí que seguía siendo yo misma, menoscabada en una versión intensificada. Es como si la condición de perderse fuera, cuando se trata de ser una persona, lo que finalmente nos hace auténticos.
February 3, 2023
Una reflexión conmovedora, brutal, honesta, sobre el cáncer y todo lo que implica para aquellos que viven con la enfermedad -el miedo, la incomprensión, el temor a sucitar lástima, la frialdad de los médicos. Anne Boyer recibe un diagnóstico de cáncer de mama muy complejo y de ahí reflexiona sobre la enfermedad a través de la experiencia propia pero intercalando las experiencias de otras escritoras que han sufrido la enfermedad así como de mujeres de varios orígenes. Asimismo, expone la brutalidad del sistema de salud en Estados Unidos -marcado por diferencias de clase y raza, pero también por una falta de humanidad. Es estremecedor cuando relata que los permisos por enfermedad son límitados y las mastectomías se consideran cirugías ambulatorias y la paciente debe dejar el hospital a las pocas horas -ahora sí que ni en México, y eso que tenemos unos de los peores sistemas de salud. Recién operada, con dolor, se vio obligada a regresar a sus clases. ¿En qué mundo, con qué fuerzas? La autora logra transmitir esa desesperación, el desasosiego, el cansancio tanto físico por el tratamiento, como por los que se van y los que se quedan, con palabras de ánimo que a veces pesan más que la enfermedad.
June 15, 2020
I liked this book but Boyer really needed to do a bit more research into pain and disability. She claims that pain is mostly visible. Um no. As someone with an invisible disability who everyone think is okay because I always look fine even when I’m in pain - this is very harmful. Many disabled people with chronic pain have to keep living their lives so become good at hiding pain. We also culturally struggle to see the pain of marginalized people like people of colour or black people. See all the many studies about medical racism. This is a highly dangerous and harmful claim to make and it shows that she has not thought about or researched this part of her book very deeply. She is just talking about her pain. But universalizing it. And perpetuating a narrative that very materially harms others.
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