In the novels An Ideal Presence (2020) by Eduardo Berti and La maternité [Maternity] (2012) by Mathieu Simonet, relatives of the dying and palliative care professionals are given a voice. Their experiences highlight "holes" in the cloak of care, which can never protect the terminally ill completely. However, they also raise the question of a pallium for the carers themselves. This need of protection, expressed in both novels by a concern to find the right dosage between caring presence for the terminally ill and self-caring distance from their suffering, risks clashing with the low-tech, high-touch approach associated with the hospice movement. By exposing the limits of palliative care, these (auto-)fictional accounts may prevent inflated expectations in this important medical field.
{"title":"Holes in the Protective Cloak of Palliative Care: Mathieu Simonet's <i>La maternité</i> and Eduardo Berti's <i>An Ideal Presence</i>.","authors":"Julia Pröll","doi":"10.1353/lm.2024.a935837","DOIUrl":"https://doi.org/10.1353/lm.2024.a935837","url":null,"abstract":"<p><p>In the novels An Ideal Presence (2020) by Eduardo Berti and La maternité [Maternity] (2012) by Mathieu Simonet, relatives of the dying and palliative care professionals are given a voice. Their experiences highlight \"holes\" in the cloak of care, which can never protect the terminally ill completely. However, they also raise the question of a pallium for the carers themselves. This need of protection, expressed in both novels by a concern to find the right dosage between caring presence for the terminally ill and self-caring distance from their suffering, risks clashing with the low-tech, high-touch approach associated with the hospice movement. By exposing the limits of palliative care, these (auto-)fictional accounts may prevent inflated expectations in this important medical field.</p>","PeriodicalId":44538,"journal":{"name":"LITERATURE AND MEDICINE","volume":"42 1","pages":"137-156"},"PeriodicalIF":0.2,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142113187","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"文学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Contemporary literature about assisted dying in Germany, Switzerland, and France repeatedly explores the impact of illness on romantic relationships. Faced with the imminent or experienced death of their loved one, the healthy partner is affected by existential suffering and refuses to outlive the other. This dynamic leads to (joint) suicide, echoing the literary tradition of the Liebestod, where lovers prefer death over separation. This paper examines three contemporary texts on this theme. It illustrates that while the Liebestod is depicted as a romantic death, it inherently rejects a medicalized end of life. Despite overlaps between palliative care and the notion of a "good death," palliative care is absent, as the focus is on avoiding the existential suffering from losing a beloved partner, making suicide the only viable option.
{"title":"Love, Death, and-No Hospital!: Assisted Dying, \"Liebestod,\" and Existential Suffering.","authors":"Marc Keller","doi":"10.1353/lm.2024.a935836","DOIUrl":"https://doi.org/10.1353/lm.2024.a935836","url":null,"abstract":"<p><p>Contemporary literature about assisted dying in Germany, Switzerland, and France repeatedly explores the impact of illness on romantic relationships. Faced with the imminent or experienced death of their loved one, the healthy partner is affected by existential suffering and refuses to outlive the other. This dynamic leads to (joint) suicide, echoing the literary tradition of the Liebestod, where lovers prefer death over separation. This paper examines three contemporary texts on this theme. It illustrates that while the Liebestod is depicted as a romantic death, it inherently rejects a medicalized end of life. Despite overlaps between palliative care and the notion of a \"good death,\" palliative care is absent, as the focus is on avoiding the existential suffering from losing a beloved partner, making suicide the only viable option.</p>","PeriodicalId":44538,"journal":{"name":"LITERATURE AND MEDICINE","volume":"42 1","pages":"112-136"},"PeriodicalIF":0.2,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142113191","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"文学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Irrecoverable Margarita Saona (bio) "We'll get you back to that," the cardiologist said with a wide smile, pointing to a photo posted on the wall of my room in the Adult Surgical Heart Unit. It was a picture of me breaking a board with a sidekick from the floor of my karate school. I had suffered what a member of the cardiac team called a "fatal arrhythmia." At that point, my heart was being supported by extracorporeal membrane oxygenation and the doctors were pondering the viability of my lungs and kidneys. Doctors, as much as patients, dream of recovery. They want to heal. They want to succeed. According to the Oxford English Dictionary, recovery is "the process of becoming well again after an illness or injury." That definition is close to the etymological sense of the word when it entered the English language in the mid-fourteenth century. Now we use the word in a broader sense to talk about getting back something that has been lost, and thus, we say things like "she recovered her stolen car" or "she already recovered all the money she invested." This shift in meaning is deceitful, however. When we think of lost objects, recovery implies complete restitution: we lose something, but then it returns to our possession. It's gone and then it's back. Not here/now here. But we humans do not recover in this sense from the kinds of loss produced by illness and other forms of trauma. Illness experiences leave marks that reveal the illusory nature of restitution narratives. The use of the active participle, so prevalent among those who struggle with addiction ("I am a recovering X") could apply to many health conditions in which life must be lived one day at a time. We might never regain all that we have lost, a particularly poignant reality for people who suffer from chronic or degenerative diseases. People who have met me in recent years react with a mix of incredulity and elation when they learn that I received a heart transplant five years ago. I don't look any different from most women in their late fifties. I give the appearance of enjoying a full recovery: I work full time, I still practice karate, I travel, I take care of my family. [End Page 61] But I am immunocompromised and, like many others in recovery, at a much higher risk of contracting diseases. My medications have already caused predictable side effects, like carcinomas big enough to require surgical interventions and osteoporosis, which resulted in a fractured vertebra. There are plenty of things that I will never recover. I am thankful that I recovered some of my strength and my muscle tone, after being unable to support my own weight. I can stand up by myself, I can walk, I can exercise some. I am glad I recovered my voice, after having to use an acrylic board and markers to communicate after long periods of intubation, but singing has become harder. I regained several things I now see as great gifts, like the pleasure of taking a shower or sleeping in my own bed. There are, however
{"title":"Irrecoverable","authors":"Margarita Saona","doi":"10.1353/lm.2023.a911444","DOIUrl":"https://doi.org/10.1353/lm.2023.a911444","url":null,"abstract":"Irrecoverable Margarita Saona (bio) \"We'll get you back to that,\" the cardiologist said with a wide smile, pointing to a photo posted on the wall of my room in the Adult Surgical Heart Unit. It was a picture of me breaking a board with a sidekick from the floor of my karate school. I had suffered what a member of the cardiac team called a \"fatal arrhythmia.\" At that point, my heart was being supported by extracorporeal membrane oxygenation and the doctors were pondering the viability of my lungs and kidneys. Doctors, as much as patients, dream of recovery. They want to heal. They want to succeed. According to the Oxford English Dictionary, recovery is \"the process of becoming well again after an illness or injury.\" That definition is close to the etymological sense of the word when it entered the English language in the mid-fourteenth century. Now we use the word in a broader sense to talk about getting back something that has been lost, and thus, we say things like \"she recovered her stolen car\" or \"she already recovered all the money she invested.\" This shift in meaning is deceitful, however. When we think of lost objects, recovery implies complete restitution: we lose something, but then it returns to our possession. It's gone and then it's back. Not here/now here. But we humans do not recover in this sense from the kinds of loss produced by illness and other forms of trauma. Illness experiences leave marks that reveal the illusory nature of restitution narratives. The use of the active participle, so prevalent among those who struggle with addiction (\"I am a recovering X\") could apply to many health conditions in which life must be lived one day at a time. We might never regain all that we have lost, a particularly poignant reality for people who suffer from chronic or degenerative diseases. People who have met me in recent years react with a mix of incredulity and elation when they learn that I received a heart transplant five years ago. I don't look any different from most women in their late fifties. I give the appearance of enjoying a full recovery: I work full time, I still practice karate, I travel, I take care of my family. [End Page 61] But I am immunocompromised and, like many others in recovery, at a much higher risk of contracting diseases. My medications have already caused predictable side effects, like carcinomas big enough to require surgical interventions and osteoporosis, which resulted in a fractured vertebra. There are plenty of things that I will never recover. I am thankful that I recovered some of my strength and my muscle tone, after being unable to support my own weight. I can stand up by myself, I can walk, I can exercise some. I am glad I recovered my voice, after having to use an acrylic board and markers to communicate after long periods of intubation, but singing has become harder. I regained several things I now see as great gifts, like the pleasure of taking a shower or sleeping in my own bed. There are, however","PeriodicalId":44538,"journal":{"name":"LITERATURE AND MEDICINE","volume":"4 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135532538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"文学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract: In "The Murders in the Rue Morgue" (1841), Poe invents the detective story in English, introducing his gentleman sleuth Auguste Dupin as he solves the locked-room mystery of two women found brutally murdered in a Paris apartment. In L'Amante Anglaise (1967), Duras revisits the detective form, fictionalizing the true 1949 crime of a woman murdering and dismembering her cousin in Viorne, France. These literary detective stories highlight the powerful but unspoken role of affective experience in driving what appears, on the surface, to be a forensic medical or psychological investigation. In both tales, peculiarity is an affective and cognitive force that, contrary to what the majority of affect literature argues, inherently moves toward resolution and closure. Using peculiarity as an analytical concept, we argue that the concealment / discovery binary must acknowledge its affective origins, breaking a barrier between narrative scholarship and medical practice.
{"title":"The Case of the Peculiar Story: Medical Investigation and the Detective in Edgar Allan Poe and Marguerite Duras","authors":"Iro Filippaki, Lakshmi Krishnan","doi":"10.1353/lm.2023.a911453","DOIUrl":"https://doi.org/10.1353/lm.2023.a911453","url":null,"abstract":"Abstract: In \"The Murders in the Rue Morgue\" (1841), Poe invents the detective story in English, introducing his gentleman sleuth Auguste Dupin as he solves the locked-room mystery of two women found brutally murdered in a Paris apartment. In L'Amante Anglaise (1967), Duras revisits the detective form, fictionalizing the true 1949 crime of a woman murdering and dismembering her cousin in Viorne, France. These literary detective stories highlight the powerful but unspoken role of affective experience in driving what appears, on the surface, to be a forensic medical or psychological investigation. In both tales, peculiarity is an affective and cognitive force that, contrary to what the majority of affect literature argues, inherently moves toward resolution and closure. Using peculiarity as an analytical concept, we argue that the concealment / discovery binary must acknowledge its affective origins, breaking a barrier between narrative scholarship and medical practice.","PeriodicalId":44538,"journal":{"name":"LITERATURE AND MEDICINE","volume":"202 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135532541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"文学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract: A posthumanist understanding of the body does not view "illness" and "health" as properties of the individual body, but as emergent features of the relationships between bodies. As such, a relational view of health opens up avenues for the betterment of both human bodies and their social and physical environments. Drawing on posthumanism and the ethics of vulnerability, this article demonstrates how Brian Teare's The Empty Form Goes All the Way to Heaven (2015) provides a different way of thinking (and doing) illness, death, and vulnerability. With his acceptance and promotion of the body's dynamic materiality and chronic vulnerability, Teare advances a posthuman ethics based on our shared embodied condition.
{"title":"Better Medicine: Shared Suffering and Chronic Vulnerability in Brian Teare's The Empty Form Goes All the Way to Heaven","authors":"Tana Jean Welch","doi":"10.1353/lm.2023.a911448","DOIUrl":"https://doi.org/10.1353/lm.2023.a911448","url":null,"abstract":"Abstract: A posthumanist understanding of the body does not view \"illness\" and \"health\" as properties of the individual body, but as emergent features of the relationships between bodies. As such, a relational view of health opens up avenues for the betterment of both human bodies and their social and physical environments. Drawing on posthumanism and the ethics of vulnerability, this article demonstrates how Brian Teare's The Empty Form Goes All the Way to Heaven (2015) provides a different way of thinking (and doing) illness, death, and vulnerability. With his acceptance and promotion of the body's dynamic materiality and chronic vulnerability, Teare advances a posthuman ethics based on our shared embodied condition.","PeriodicalId":44538,"journal":{"name":"LITERATURE AND MEDICINE","volume":"39 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135532789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"文学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Foreword to Front Matter:Recovery Michael Blackie We all know something about recovery. The return of a lost object, like health or dignity, maybe a cherished memento, or a talisman from another time. It is a narrative driven experience, propelled by expectation, a story we tell to make sense of what can be recovered or to put into perspective that which remains beyond reach. In either case, getting there or not is the story. In this time of Covid, many of us can now describe recovering from an infection, an idea that seemed frighteningly uncertain before vaccines became available. And for too many, recovery doesn't come, like for my dear mentor Carol Donley, who died this past April from complications of Covid, or for those enduring symptoms of long Covid, like the author whose relapse prevented her from completing her contribution to this issue's Front Matter. There are even grimmer realities, like when a search-and-rescue mission becomes a recovery operation. Yes, we all know something about recovery and we're drawn to stories about someone, even a stranger, who has triumphed over illness, adversity, or injustice. The six contributions that follow tell stories about recovery or challenge the narrative conventions upon which they are told. Here is mine. Each spring I teach a session on close reading to nursing students in a seminar on hospice care. The literary text I assign is Sherman Alexie's "Blankets," told by a narrator who is the son of an elderly Indian man who has just undergone a surgical amputation of his right foot and several toes from his left, the consequences of alcoholism and diabetes.1 Most of the story takes place in what the son calls a "recovery hallway" in a busy urban hospital in Washington state (44). The story's rich descriptions and metaphors reward close reading, but it's an odd story for a class on hospice care because no one in it dies or enters hospice. The focus is, rather, on becoming a caregiver. The son's growing awareness of what his father's recovery will demand [End Page 5] from him as his caretaker illuminates the dynamics of informal care- giving for these future nurses. The recovery ahead promises to be daunting. The son knows his father will continue to drink once he is discharged, that he will likely put his disfigurement to work in the local bar, winning bets doing wheelies in his new wheelchair. As the son begins to see traditional roles reversing, with the adult child now caring for the ill parent (the "circle of life" he calls "poetic bullshit"), students inevitably begin sharing their own experiences with caregiving (47). They will differ in the details, but where we get to is mostly the same: how the idea of recovery can become oppressive when it seems always out of reach, when one realizes recovery's narrative expectations will go unmet. It is at this point in the discussion when I draw students back to the text, back to the "recovery hallway" specifically, to highlight its liminality and ask them
{"title":"Foreword to Front Matter: Recovery","authors":"Michael Blackie","doi":"10.1353/lm.2023.a911438","DOIUrl":"https://doi.org/10.1353/lm.2023.a911438","url":null,"abstract":"Foreword to Front Matter:Recovery Michael Blackie We all know something about recovery. The return of a lost object, like health or dignity, maybe a cherished memento, or a talisman from another time. It is a narrative driven experience, propelled by expectation, a story we tell to make sense of what can be recovered or to put into perspective that which remains beyond reach. In either case, getting there or not is the story. In this time of Covid, many of us can now describe recovering from an infection, an idea that seemed frighteningly uncertain before vaccines became available. And for too many, recovery doesn't come, like for my dear mentor Carol Donley, who died this past April from complications of Covid, or for those enduring symptoms of long Covid, like the author whose relapse prevented her from completing her contribution to this issue's Front Matter. There are even grimmer realities, like when a search-and-rescue mission becomes a recovery operation. Yes, we all know something about recovery and we're drawn to stories about someone, even a stranger, who has triumphed over illness, adversity, or injustice. The six contributions that follow tell stories about recovery or challenge the narrative conventions upon which they are told. Here is mine. Each spring I teach a session on close reading to nursing students in a seminar on hospice care. The literary text I assign is Sherman Alexie's \"Blankets,\" told by a narrator who is the son of an elderly Indian man who has just undergone a surgical amputation of his right foot and several toes from his left, the consequences of alcoholism and diabetes.1 Most of the story takes place in what the son calls a \"recovery hallway\" in a busy urban hospital in Washington state (44). The story's rich descriptions and metaphors reward close reading, but it's an odd story for a class on hospice care because no one in it dies or enters hospice. The focus is, rather, on becoming a caregiver. The son's growing awareness of what his father's recovery will demand [End Page 5] from him as his caretaker illuminates the dynamics of informal care- giving for these future nurses. The recovery ahead promises to be daunting. The son knows his father will continue to drink once he is discharged, that he will likely put his disfigurement to work in the local bar, winning bets doing wheelies in his new wheelchair. As the son begins to see traditional roles reversing, with the adult child now caring for the ill parent (the \"circle of life\" he calls \"poetic bullshit\"), students inevitably begin sharing their own experiences with caregiving (47). They will differ in the details, but where we get to is mostly the same: how the idea of recovery can become oppressive when it seems always out of reach, when one realizes recovery's narrative expectations will go unmet. It is at this point in the discussion when I draw students back to the text, back to the \"recovery hallway\" specifically, to highlight its liminality and ask them","PeriodicalId":44538,"journal":{"name":"LITERATURE AND MEDICINE","volume":"29 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135532542","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"文学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract: In recent decades, digital and photographic life narratives by women living with breast cancer and mastectomy have gained public visibility. This article examines how a documentary and fashion photography project in contemporary Berlin rethinks normative concepts of femininity, embodiment, and sexuality through the performance of the breast cancer patient as Amazon warrior. Based on feminist theory, disability studies, media studies, and in particular Gilles Deleuze's concept of becoming , I coin the term "becoming-Amazon" for the process of relational subjectivity formation that the project opens up. Uta Melle's project shifts notions of post-mastectomy bodies as unfeminine, incomplete, or asexual and envisions and celebrates a multiplicity of relational femininities, embodiments, and erotic zones with difference. By combining digital cancer activism and an aesthetics and politics of visibility, difference, and intercorporeality, Melle's project intervenes in contemporary cancer discourse and unsettles what has been considered as redemptive cancer culture.
{"title":"Becoming-Amazon: Femininity, Embodiment, and Sexuality in a Photographic and Digital Breast Cancer Project","authors":"Katja Herges","doi":"10.1353/lm.2023.a911446","DOIUrl":"https://doi.org/10.1353/lm.2023.a911446","url":null,"abstract":"Abstract: In recent decades, digital and photographic life narratives by women living with breast cancer and mastectomy have gained public visibility. This article examines how a documentary and fashion photography project in contemporary Berlin rethinks normative concepts of femininity, embodiment, and sexuality through the performance of the breast cancer patient as Amazon warrior. Based on feminist theory, disability studies, media studies, and in particular Gilles Deleuze's concept of becoming , I coin the term \"becoming-Amazon\" for the process of relational subjectivity formation that the project opens up. Uta Melle's project shifts notions of post-mastectomy bodies as unfeminine, incomplete, or asexual and envisions and celebrates a multiplicity of relational femininities, embodiments, and erotic zones with difference. By combining digital cancer activism and an aesthetics and politics of visibility, difference, and intercorporeality, Melle's project intervenes in contemporary cancer discourse and unsettles what has been considered as redemptive cancer culture.","PeriodicalId":44538,"journal":{"name":"LITERATURE AND MEDICINE","volume":"5 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135532544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"文学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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