front cover of The Adventures of Cancer Bitch
The Adventures of Cancer Bitch
S. L. Wisenberg
University of Iowa Press, 2009
Wisenberg may have lost a breast, but she retained her humor, outrage, and skepticism toward common wisdom and most institutions. While following the prescribed protocols at the place she called Fancy Hospital, Wisenberg is unsparing in her descriptions of the fumblings of new doctors, her own awkward announcement to her students, and the mounds of unrecyclable plastic left at a survivors’ walk. Combining the personal with the political, she shares her research on the money spent on pink ribbons instead of preventing pollution, and the disparity in medical care between the insured and the uninsured. When chemotherapy made her bald, she decorated her head with henna swirls in front and an antiwar protest in back. During treatment, she also recorded the dailiness of life in Chicago as she rode the L, taught while one-breasted, and attended High Holiday services and a Passover seder.

Wisenberg’s writing has been compared to a mix of Leon Wieseltier and Fran Lebowitz, and in this book, she has Wieseltier’s erudition and Lebowitz’s self-deprecating cleverness: “If anybody ever offers you the choice between suffering and depression, take the suffering. And I don't mean physical suffering. I mean emotional suffering. I am hereby endorsing psychic suffering over depression.”

From The Adventures of Cancer Bitch:

I found that when you invite people to a pre-mastectomy party, they show up. Even those with small children. The kids were so young that they didn't notice that most of the food had nipples. . . . I talked to everyone—about what I'm not sure. Probably about my surgery. Everyone told me how well I looked. I felt giddy. I was going to go under, but not yet; I was going to be cut, but not yet; I was going to be bald, but not yet. As my friend who had bladder cancer says: The thing about cancer is you feel great until they start treating you for it.
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The African AIDS Epidemic
A History
John Iliffe
Ohio University Press, 2006

A Choice Significant University Press Titles for Undergraduates, 2005–2006 

This history of the African AIDS epidemic is a much-needed, accessibly written historical account of the most serious epidemiological catastrophe of modern times. The African AIDS Epidemic: A History answers President Thabo Mbeki’s provocative question as to why Africa has suffered this terrible epidemic.

While Mbeki attributed the causes to poverty and exploitation, others have looked to distinctive sexual systems practiced in African cultures and communities. John Iliffe stresses historical sequence. He argues that Africa has had the worst epidemic because the disease was established in the general population before anyone knew the disease existed. HIV evolved with extraordinary speed and complexity, and because that evolution took place under the eyes of modern medical research scientists, Iliffe has been able to write a history of the virus itself that is probably unique among accounts of human epidemic diseases. In giving the African experience a historical shape, Iliffe has written one of the most important books of our time.

The African experience of AIDS has taught the world much of what it knows about HIV/AIDS, and this fascinating book brings into focus many aspects of the epidemic in the longer context of massive demographic growth, urbanization, and social change in Africa during the latter half of the twentieth century. The African AIDS Epidemic: A History is a brilliant introduction to the many aspects of the epidemic and the distinctive character of the virus.

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The Age of Scientific Wellness
Why the Future of Medicine Is Personalized, Predictive, Data-Rich, and in Your Hands
Leroy Hood and Nathan Price
Harvard University Press, 2023

“If you want to understand how the latest advances in genomics and AI can completely transform your health, and to translate this promise into practical tools that you can apply today, read this book!”—Mark Hyman, author of Young Forever

Taking us to the cutting edge of the new frontier of medicine, a visionary biotechnologist and a pathbreaking researcher show how we can optimize our health in ways that were previously unimaginable.


We are on the cusp of a major transformation in healthcare—yet few people know it. At top hospitals and a few innovative health-tech startups, scientists are working closely with patients to dramatically extend their “healthspan”—the number of healthy years before disease sets in. In The Age of Scientific Wellness, two visionary leaders of this revolution in health take us on a thrilling journey to this new frontier of medicine.

Today, most doctors wait for clinical symptoms to appear before they act, and the ten most commonly prescribed medications confer little or no benefit to most people taking them. Leroy Hood and Nathan Price argue that we must move beyond this reactive, hit-or-miss approach to usher in real precision health—a form of highly personalized care they call “scientific wellness.” Using information gleaned from our blood and genes and tapping into the data revolution made possible by AI, doctors can catch the onset of disease years before symptoms arise, revolutionizing prevention. Current applications have shown startling results: diabetes reversed, cancers eliminated, Alzheimer’s avoided, autoimmune conditions kept at bay.

This is not a future fantasy: it is already happening, but only for a few patients and at high cost. It’s time to make this gold standard of care more widely available. Inspiring in its possibilities, radical in its conclusions, The Age of Scientific Wellness shares actionable insights to help you chart a course to a longer, healthier, and more fulfilling life.

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Alive with Alzheimer's
Cathy Stein Greenblat
University of Chicago Press, 2004
The confusion, losses, and devastation of Alzheimer's disease are familiar to the millions of Americans suffering from the disease and to their family members. Understandably, declining abilities and changing personal characteristics shape our picture of the disease, leading some to refer to the "double death" of Alzheimer's in which the sufferer drifts away long before his or her eventual physical end.

This small, tender volume of 85 photographs and accompanying discussion powerfully shows the limitations of this view. Cathy Stein Greenblat, an internationally respected sociologist and photographer, demonstrates in Alive with Alzheimer's that, while the ravages of the disease are real, Alzheimer's sufferers can do more than survive, they can thrive. Her images, interviews, and observations attest to the possibility of their being "alive" with Alzheimer's far beyond the expectations of the general public and even of many physicians with long experience with the disease.

Greenblat offers a new vision, taking us into a world of life-enhancing institutional care. Nursing homes and similar facilities don't have to be a last resort; as Greenblat shows, with a dedicated and experienced staff and an enriched environment (that includes respect, choices, pets, and music), extraordinary changes can be effected in Alzheimer's patients. Alive with Alzheimer's, the first photographic book on the disease, offers hope and inspiration. Moreover, its vivid, impressive evidence that ongoing stimulation in a good institutional setting can sustain Alzheimer's patients at a far higher level than is generally believed has significant implications for personal and policy decisions.

The new standard of care chronicled in Alive with Alzheimer's will provide hope and inspiration to those touched by the disease. As Dr. Enid Rockwell writes in her Afterword to Greenblat's moving book, "These photographs are extraordinary for practitioners, for family members, for everyone to see what's going on with these people. The stimulation pictured in this book is more powerful than any medication that we will have in our lifetime. . . . They so vividly show us that there are people inside these bodies, people with personalities, who experience emotion, and they show that there is life after Alzheimer's."
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All God's Mistakes
Genetic Counseling in a Pediatric Hospital
Charles L. Bosk
University of Chicago Press, 1992
In one case after another, Charles L. Bosk reveals the process by which parents, physicians and other health professionals come to guide decisions about pregnancies. A story of both extraordinary drama and ordinary routine, this is a pioneering case study of authority and control in a pediatric hospital, showing how genetic counselors work with colleagues and with parents to be, and how they deal with their powerlessness to control life-and-death decisions that they must address.
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Alzheimer’s and Dementia
A Practical and Legal Guide for Nevada Caregivers
Kim Boyer
University of Nevada Press, 2011
            Individuals or families receiving a diagnosis of Alzheimer’s disease, dementia, or brain damage from a stroke face daunting questions: how to provide for care when the patient can no longer manage his or her own affairs, how to protect their rights and property, where to go for help, and how to cope with the day-to-day challenges of fading memory and diminished cognition. Here is a comprehensive guide specifically for aging Nevadans and for family members, professional caregivers, and health care workers who help them.
The authors—an elder law attorney and a specialist in geriatric care management—offer readers useful advice from the perspective of Nevada resources and Nevada law, addressing such topics as the legal and financial steps that patients and their families can take to protect themselves and their assets, paying for long-term care, arranging for guardianship, and tending to the details that follow the death of a loved one.
 This edition, updated in 2011, includes information about recent changes in laws that affect seniors, new research and treatments, and a new guide to resources throughout the state that can provide assistance to people afflicted with these medical conditions.
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Beasts of the Earth
Animals, Humans, and Disease
Torrey, E. Fuller
Rutgers University Press, 2014

Humans have lived in close proximity to other animals for thousands of years. Recent scientific studies have even shown that the presence of animals has a positive effect on our physical and mental health. People with pets typically have lower blood pressure, show fewer symptoms of depression, and tend to get more exercise.

But there is a darker side to the relationship between animals and humans. Animals are carriers of harmful infectious agents and the source of a myriad of human diseases. In recent years, the emergence of high-profile illnesses such as AIDS, SARS, West Nile virus, and bird flu has drawn much public attention, but as E. Fuller Torrey and Robert H. Yolken reveal, the transfer of deadly microbes from animals to humans is neither a new nor an easily avoided problem.

Beginning with the domestication of farm animals nearly 10,000 years ago, Beasts of the Earth traces the ways that human-animal contact has evolved over time. Today, shared living quarters, overlapping ecosystems, and experimental surgical practices where organs or tissues are transplanted from non-humans into humans continue to open new avenues for the transmission of infectious agents. Other changes in human behavior like increased air travel, automated food processing, and threats of bioterrorism are increasing the contagion factor by transporting microbes further distances and to larger populations in virtually no time at all.

While the authors urge that a better understanding of past diseases may help us lessen the severity of some illnesses, they also warn that, given our increasingly crowded planet, it is not a question of if but when and how often animal-transmitted diseases will pose serious challenges to human health in the future.

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The Beautiful Cure
The Revolution in Immunology and What It Means for Your Health
Daniel M. Davis
University of Chicago Press, 2018
“Visceral.”—Wall Street Journal     “Illuminating.”—Publishers Weekly     “Heroic.”—Science

The immune system holds the key to human health. In The Beautiful Cure, leading immunologist Daniel M. Davis describes how the scientific quest to understand how the immune system works—and how it is affected by stress, sleep, age, and our state of mind—is now unlocking a revolutionary new approach to medicine and well-being.

The body’s ability to fight disease and heal itself is one of the great mysteries and marvels of nature. But in recent years, painstaking research has resulted in major advances in our grasp of this breathtakingly beautiful inner world: a vast and intricate network of specialist cells, regulatory proteins, and dedicated genes that are continually protecting our bodies. Far more powerful than any medicine ever invented, the immune system plays a crucial role in our daily lives. We have found ways to harness these natural defenses to create breakthrough drugs and so-called immunotherapies that help us fight cancer, diabetes, arthritis, and many age-related diseases, and we are starting to understand whether activities such as mindfulness might play a role in enhancing our physical resilience.

Written by a researcher at the forefront of this adventure, The Beautiful Cure tells a dramatic story of scientific detective work and discovery, of puzzles solved and mysteries that linger, of lives sacrificed and saved. With expertise and eloquence, Davis introduces us to this revelatory new understanding of the human body and what it takes to be healthy.
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Because I'd Hate to Just Disappear
My Cancer, My Self, Our Story
Don Hardy
University of Nevada Press, 2018
“Illness, in the larger sense of mortality,” Don Hardy writes, “is an inescapable shared trait among all living creatures, and we humans know about it, whether or not we want to talk about it.”

Because I’d Hate to Just Disappear is a portrait of a husband and wife, Don and Heather Hardy, thrown into the physical and emotional machinery of Don being diagnosed with leukemia and going through chemotherapy and treatment over a period of close to two years.

In this thoughtful and exquisite account, Don and Heather narrate Don’s struggle in real-time. Disarmingly honest, they recount each intimate stage of a couple living through cancer together, the mental and physical struggles, the humor and visceral emotion to reveal how two very different personalities shape—and are shaped by—the experience of cancer and its treatment. Through these moments emerge a constant flow of human kindness and discovery that lifts them each day.
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Behind the Mask
Vernacular Culture in the Time of COVID
Ben Bridges
Utah State University Press, 2023
Vernacular responses have been crucial for communities seeking creative ways to cope with the coronavirus pandemic. With most people locked down and separated from the normal ebb and flow of life for an extended period of time, COVID-19 inspired community and creativity, adaptation and flexibility, traditional knowledge, resistance, and dynamism. Removing people from assumed norms and daily lives, the pandemic provided a moment of insight into the nature of vernacular culture as it was used, abused, celebrated, critiqued, and discarded. In Behind the Mask, contributors from the USA, the UK, and Scandinavia emphasize the choices that individual people and communities made during the COVID pandemic, prioritizing the everyday lives of people enduring this health crisis.
 
Despite vernacular’s potential nod to dominant or external culture, it is the strong connection to the local that grounds the vernacular within the experiential context that it occupies. Exploring the nature and shape of vernacular responses to the ongoing public health crisis, Behind the Mask documents processes that are otherwise likely to be forgotten. Including different ethnographic presents, contributors capture moments during the pandemic rather than upon reflection, making the work important to students and scholars of folklore and ethnology, as well as general readers interested in the COVID pandemic.
 
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The Biopolitics of Breast Cancer
Changing Cultures of Disease and Activism
Maren Klawiter
University of Minnesota Press, 2008

For nearly forty years, feminists and patient activists have argued that medicine is a deeply individualizing and depoliticizing institution. According to this view, medical practices are incidental to people’s transformation from patients to patient activists. The Biopolitics of Breast Cancer turns this understanding upside down.

Maren Klawiter analyzes the evolution of the breast cancer movement to show the broad social impact of how diseases come to be medically managed and publicly administered. Examining surgical procedures, adjuvant therapies, early detection campaigns, and the rise in discourses of risk, Klawiter demonstrates that these practices created a change in the social relations-if not the mortality rate-of breast cancer that initially inhibited, but later enabled, collective action. Her research focuses on the emergence and development of new forms of activism that range from grassroots patient empowerment to environmental activism and corporate-funded breast cancer awareness.

The Biopolitics of Breast Cancer opens a window onto a larger set of changes currently transforming medically advanced societies and ultimately challenges our understanding of the origins, politics, and future of the breast cancer movement.

Maren Klawiter holds a PhD in sociology from the University of California, Berkeley. She is currently pursuing a law degree at Yale University.

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Black Women and da ’Rona
Community, Consciousness, and Ethics of Care
Edited by Julia S. Jordan-Zachery and Shamara Wyllie Alhassan
University of Arizona Press, 2023
Rooted in the ways Black women understand their lives, this collection archives practices of healing, mothering, and advocacy during the COVID-19 pandemic.

Recognizing that Black women have been living in pandemics as far back as colonialism and enslavement, this volume acknowledges that records of the past—from the 1918 flu pandemic to the onset of the HIV/AIDS epidemic—often erase the existence and experiences of Black women as a whole. Writing against this archival erasure, this collection consciously recenters the real-time experiences and perspectives of care, policy concerns, grief, and joy of Black women throughout the COVID-19 pandemic.

Nineteen contributors from interdisciplinary fields and diverse backgrounds explore Black feminine community, consciousness, ethics of care, spirituality, and social critique. They situate Black women’s multidimensional experiences with COVID-19 and other violences that affect their lives. The stories they tell are connected and interwoven, bound together by anti-Black gendered COVID necropolitics and commitments to creating new spaces for breathing, healing, and wellness.

Ultimately, this time-warping analysis shows how Black women imagine a more just society, rapidly adapt to changing experiences, and innovate ethics of care even in the midst of physical distancing, which can be instructive for thinking of new ways of living both during and beyond the era of COVID-19.

Contributors
Shamara Wyllie Alhassan
Sharnnia Artis
Keisha L. Bentley-Edwards
Candace S. Brown
Jenny Douglas
Kaja Dunn
Onisha Etkins
Rhonda M. Gonzales
Endia Hayes
Ashley E. Hollingshead
Kendra Jason
Julia S. Jordan-Zachery
Stacie LeSure
Janaka B. Lewis
Michelle Meggs
Nitya Mehrotra
Sherine Andreine Powerful
Marjorie Shavers
Breauna Marie Spencer
Tehia Starker Glass
Amber Walker
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Bleeder
A Memoir
Shelby Smoak
Michigan State University Press, 2013
I am Caucasian, five foot eleven, have sandy brown hair, blue eyes, and am a tender slip of bone. And I am at the hospital.
A coming-of-age memoir for modern times, Bleeder is the incredibly compelling tale of author Shelby Smoak. A hemophiliac, Smoak discovered he had been infected with HIV during a blood transfusion at the start of his college career. This devastating and destabilizing news led Smoak to see his world from an entirely new perspective, one in which life-threatening illness was perpetually just around the corner. Set in the 1990s along the North Carolina coast, Bleeder traces Smoak’s quest for love in a world that feels increasingly dangerous, and despite a future that feels increasingly uncertain. From the bedroom to the operating room, and from one hospital to the next, Smoak seeks out hope and better health. Winner of a PEN American Center award for writers living with HIV, Smoak, whose work has appeared in numerous journals and magazines, constructs this unforgettable story of life and love against insurmountable difficulties in breathtaking, tightly drawn prose.
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The Boundaries of Blackness
AIDS and the Breakdown of Black Politics
Cathy Cohen
University of Chicago Press, 1999
Last year, more African Americans were reported with AIDS than any other racial or ethnic group. And while African Americans make up only 13 percent of the U.S. population, they account for more than 55 percent of all newly diagnosed HIV infections. These alarming developments have caused reactions ranging from profound grief to extreme anger in African-American communities, yet the organized political reaction has remained remarkably restrained.

The Boundaries of Blackness is the first full-scale exploration of the social, political, and cultural impact of AIDS on the African-American community. Informed by interviews with activists, ministers, public officials, and people with AIDS, Cathy Cohen unflinchingly brings to light how the epidemic fractured, rather than united, the black community. She traces how the disease separated blacks along different fault lines and analyzes the ensuing struggles and debates.

More broadly, Cohen analyzes how other cross-cutting issues—of class, gender, and sexuality—challenge accepted ideas of who belongs in the community. Such issues, she predicts, will increasingly occupy the political agendas of black organizations and institutions and can lead to either greater inclusiveness or further divisiveness.

The Boundaries of Blackness, by examining the response of a changing community to an issue laced with stigma, has much to teach us about oppression, resistance, and marginalization. It also offers valuable insight into how the politics of the African-American community—and other marginal groups—will evolve in the twenty-first century.
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Breast Cancer Recurrence and Advanced Disease
Comprehensive Expert Guidance
Barbara L. Gordon, Heather S. Shaw, David J. Kroll, and Brooke R. Daniel
Duke University Press, 2010
At age 42, Barbara L. Gordon was diagnosed with Stage II breast cancer. Two years later, it appeared that the cancer had metastasized. Along with her oncologist and other experts, Gordon has written the book that she wished she had as she faced late-stage breast cancer and the prospect of dying from the disease. Filled with information and advice, and designed to enable informed decisions and improved quality of life, this comprehensive guide gathers in one place authoritative medical information about recurrence and late-stage breast cancer, and it addresses the practical, emotional, spiritual, and interpersonal aspects of dying and death.

This indispensable book aids those diagnosed with recurrent or late-stage breast cancer, those wanting to reduce the chance of a recurrence, and those with other types of late-stage cancer. It is also a valuable resource for healthcare professionals, friends, and family members.

Topics covered include

• Types of recurrence, their symptoms, and ways of minimizing the chance of a recurrence
• Diagnostic tests, potential surgeries, and treatments to manage late-stage cancer
• Getting the best care, evaluating complementary therapies, and alleviating pain and depression
• Cessation of treatment and what one may experience as the disease progresses
• End-of-life issues including dealing with financial and legal matters, communicating with loved ones and hospice workers, and planning memorial services

Breast Cancer Recurrence and Advanced Disease includes a glossary of medical terms, appendices on nutrition and integrative health centers, and links to current Web sites addressing matters such as clinical trials, patients’ rights, and medical expenses.

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Cancer Activism
Gender, Media, and Public Policy
Karen M. Kedrowski and Marilyn Stine Sarow
University of Illinois Press, 2010
The first comparison of the breast cancer and the prostate cancer movements

Cancer Activism explores the interplay between advocacy, the media, and public perception through an analysis of breast cancer and prostate cancer activist groups over a nearly twenty-year period. Despite both diseases having nearly identical mortality and morbidity rates, Karen M. Kedrowski and Marilyn Stine Sarow present evidence from more than 4,200 news articles to show that the different groups have had markedly different impacts. They trace the rise of each movement from its beginning and explore how discussions about the diseases appeared on media, public, and government agendas. In an important exception to the feminist tenet that women as a group hold less power than men, Kedrowski and Sarow demonstrate that the breast cancer movement is not only larger and better organized than the prostate cancer movement, it is also far more successful at shaping media coverage, public opinion, and government policy.

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The Children Of Africa Confront AIDS
From Vulnerability To Possibility
Arvind Singhal
Ohio University Press, 2003
AIDS is now the leading cause of death in Africa, where twenty-eight million people are HIV-positive, and where some twelve million children have lost one or both parents to AIDS. In Zimbabwe, 45 percent of children under the age of five are HIV-positive, and the epidemic has shortened life expectancy by twenty-two years. A fifteen-year-old in Botswana or South Africa has a one-in-two chance of dying of AIDS. AIDS deaths are so widespread in sub-Saharan Africa that small children now play a new game called “Funerals.” The Children of Africa Confront AIDS depicts the reality of how African children deal with the AIDS epidemic, and how the discourse of their vulnerability affects acts of coping and courage. A project of the Institute for the African Child at Ohio University, The Children of Africa Confront AIDS cuts across disciplines and issues to focus on the world’s most marginalized population group, the children of Africa. Editors Arvind Singhal and Stephen Howard join conversations between humanitarian and political activists and academics, asking, “What shall we do?” Such discourse occurs in African contexts ranging from a social science classroom in Botswana to youth groups in Kenya and Ghana. The authors describe HIV/AIDS in its macro contexts of vulnerable children and the continent’s democratization movements and also in its national contexts of civil conflict, rural poverty, youth organizations, and agencies working on the ground. Singhal, Howard, and other contributors draw on compelling personal experience in descriptions of HIV/AIDS interventions for children in difficult circumstances and present thoughtful insights into data gathered from surveys and observations concerning this terrible epidemic.
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Chronicling Childhood Cancer
A Collection of Personal Stories by Children and Teens with Cancer
Trisha Karena Paul
Michigan Publishing Services, 2014
In this narrative collection, ten children and teens use their own words and colorful drawings to share their personal experiences with cancer. This diverse collection of patient stories provides insight into the unique lives of these individuals; some are recently diagnosed and undergoing treatment for cancer while others are in remission or have relapsed. These children and teens are honest and perceptive, their stories told with heartfelt emotion. 
 
This book is a resource for all those interested in learning more about childhood cancer, including health practitioners, family, and friends. These stories also have the potential to help other youth diagnosed with cancer.  
 
All of the proceeds received by the University of Michigan Division of Pediatric Hematology/Oncology for this book will be donated: 50% to the Block Out Cancer campaign for pediatric cancer research at the University of Michigan and 50% to the Child and Family Life Program at the University of Michigan C.S. Mott Children’s Hospital.
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Close to Me, but Far Away
Living with Alzheimer's
Burton M. Wheeler
University of Missouri Press, 2001

Each day Burt Wheeler is plagued by the same question. When did it happen? If he could pinpoint the beginning, then he might begin to make peace with himself. He vividly remembers when the doctor diagnosed Kee, his loving wife of over fifty years, with "Alzheimer-type dementia." But, as hard as he tries, it's impossible for him to determine when his wife's dementia started. He remembers her bout with depression, but that, he thinks, was surely due to her breast cancer. There was their dream vacation to Greece when Kee seemed so tired and indifferent. There were the unopened books, when reading had always been such a source of pleasure to her. And, he recalls, the gradual personality changes with friends, and even with family.

Wheeler started writing this book as a form of self-therapy when he found himself thrust into the role of caretaker to his wife--a role for which he felt unprepared. He wrote in memory of the very special woman his wife had been—a wonderful mother, charming and gracious, as well as a deeply respected psychotherapist. She was also his best friend, and he loved her. So, to some degree, this is a love story—a story about two people who have shared life's ups and downs for over fifty years. It's also about commitment.

In Close to Me, but Far Away, Wheeler provides insight into what a caregiver's day is like, as he shares his most intimate thoughts with us. The book provides a window into the author's personal life as he seeks to confront his own ineptitude and the occasional despair he feels as he deals daily with Alzheimer's. He also touches on the question of what keeps him going through times of exhaustion and frustration. Part of his answer lies in holding tenaciously to memories, and part lies in what he believes is a human's extraordinary capacity to continue plodding along simply because he must. Wheeler also believes in rejoicing in the beauty that can be experienced, and he believes in humor, humor achieved only by distancing ourselves from the events that so deeply engage us. And, of course, there is also the indefinable nature of love.

Alzheimer's is a terrifying and horrible disease, as much for loved ones as for the patient. Those who are caregivers or friends of Alzheimer's patients or caregivers will empathize with Burton Wheeler's story. And some might receive comfort from his words or learn from him. Because Alzheimer's is a disease that could affect anyone, Close to Me, but Far Away is a story that should be read by all.

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Damaged Goods?
Women Living With Incurable Sexually Transmitted Diseases
Adina Nack
Temple University Press, 2008

How do women living with genital herpes and/or HPV (human papilloma virus) infections see themselves as sexual beings, and what choices do they make about sexual health issues? Adina Nack, a medical sociologist who specializes in sexual health and social psychology, conducted in-depth interviews with 43 women about their identities and sexuality in regards to chronic illness. The result is a fascinating book about an issue that affects over 15 million Americans, but is all too little discussed.

Damaged Goods adds to our knowledge of how women are affected by living with chronic STDs and reveals the stages of their sexual- self transformation. From the anxiety of being diagnosed with an STD to issues of blame and shame, Nack-herself diagnosed with a cervical HPV infection-shows why these women feeling that they are "damaged goods," question future relationships, marriage, and their ability to have healthy children.

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Dancing with Parkinson's
Sara Houston
Intellect Books, 2019
This book explores the experience and value of dancing for people living with the neurodegenerative disorder Parkinson’s disease. Linking aesthetic values to wellbeing, Sara Houston articulates the importance of the dancing experience for those with Parkinson’s, and argues that the benefits of participatory dance are best understood through the experiences, lives, needs, and challenges of people living with Parkinson’s who have chosen to dance.

Presenting personal narratives from a study that investigates the experience of people with Parkinson’s who dance, intertwined with the social and political contexts in which the dancers live, this volume examines the personal and systemic issues as well as the attitudes and identities that shape people’s relationship to dance. Taking this new primary research as a starting point, Dancing with Parkinson’s builds an argument for how dance becomes a way of helping people live well with Parkinson’s.
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DES Daughters, Embodied Knowledge, and the Transformation of Women's Health Politics in the Late Twentieth Century
Susan E. Bell
Temple University Press, 2009
From the 1940s to the 1970s, millions of women were exposed prenatally to the synthetic estrogen DES, a “wonder drug” intended to prevent miscarriages. However, DES actually had damaging consequences for the women born from DES mothers. The “DES daughters” as they are known, were found to have a rare form of vaginal cancer or were infertile. They were also at risk for miscarriages, stillbirths, and ectopic pregnancies.

In DES Daughters, Susan Bell recounts the experiences of this generation of “victims.” In moving, heartfelt narratives, she presents the voices of those women who developed cancer, those who were cancer-free but have concerns about becoming pregnant, and those who suffered other medical and/or reproductive difficulties.

Bell examines the hierarchy of knowledge and power of scientists, doctors, and daughters, tracing the emergence of a feminist health movement. The “embodied knowledge” of these DES daughters prompted them to become advocates and form a social movement that challenged reproductive medical knowledge specifically, but also the politics of women’s health in general. Bell’s important book chronicles the history and future of these grassroots activists born out of illness, suffering, and uncertainty.
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Diary of a Detour
Lesley Stern
Duke University Press, 2020
Diary of a Detour is film scholar and author Lesley Stern's memoir of living with chronic lymphocytic leukemia. She chronicles the fears and daily experience of coming to grips with an incurable form of cancer by describing the dramas and delving into the science. Stern also nudges cancer off center stage by turning to alternative obsessions and pleasures. In seductive writing she describes her life in the garden and kitchen, the hospital and the library, and her travels—down the street to her meditation center, across the border to Mexico, and across the world to Australia. Her immediate world is inhabited with books, movies, politics, and medical reports that provoke essayistic reflections. As her environment is shared with friends, chickens, a cat called Elvis, mountain goats, whales, lions, and microbes the book opens onto a larger than human world. Intimate and meditative, engrossing and singular, Diary of a Detour offers new ideas about what it might mean to live and think with cancer, and with chronic illness more broadly.
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Discourses of Disruption in Asia
Creating and Contesting Meaning in the Time of COVID-19
Nakane Ikuko
Leiden University Press
Discourses of Disruption in Asia: Creating and Contesting Meaning in the Time of COVID-19 makes a unique contribution to research on meaning making in times of crisis. Using diverse analytical approaches to the study of languages in societies from the Asia-Pacific region, this volume explores the struggles over national identity and manifestations of socio-political issues in the context of disruptions caused by the COVID-19 pandemic. Each chapter interrogates how social actors in diverse communities across the Asia-Pacific region draw on discursive resources to address communication issues, particularly in relation to minoritized groups, claims for accountability, solidarity formation, national identities, government policy announcements, translation, and the efficacy of health-related discourses. This volume will be of interest to students and researchers in fields such as Language and Gender, Linguistic Anthropology, Sociolinguistics, Translation Studies, Social Semiotics, Media Studies, Political Science, Public Health, and Asian Studies.
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The Discovery of Insulin
Michael Bliss
University of Chicago Press, 1984
In a brilliant, definitive history of one of the most significant and controversial medical events of modern times, award-winning historian Michael Bliss brings to light a bizarre clash of scientific personalities. When F. G. Banting and J. J. R. Macleod won the 1923 Nobel Prize for discovering and isolating insulin, Banting immediately announced that he was dividing his share of the prize with his young associate, C. H. Best. Macleod divided his share with a fourth member of the team, J. B. Collip. For the next sixty years medical opinion was intensely divided over the allotment of credit for the discovery of insulin. In resolving this controversy, Bliss also offers a wealth of new detail on such subjects as the treatment of diabetes before insulin and the life-and-death struggle to manufacture insulin.
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The Discovery of Insulin
Michael Bliss
University of Chicago Press, 1982
In a brilliant, definitive history of one of the most significant and controversial medical events of modern times, award-winning historian Michael Bliss brings to light a bizarre clash of scientific personalities. When F. G. Banting and J. J. R. Macleod won the 1923 Nobel Prize for discovering and isolating insulin, Banting immediately announced that he was dividing his share of the prize with his young associate, C. H. Best. Macleod divided his share with a fourth member of the team, J. B. Collip. For the next sixty years medical opinion was intensely divided over the allotment of credit for the discovery of insulin. In resolving this controversy, Bliss also offers a wealth of new detail on such subjects as the treatment of diabetes before insulin and the life-and-death struggle to manufacture insulin.
[more]

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Duel Without End
Mankind’s Battle with Microbes
Stig S. Frøland
Reaktion Books, 2022
From the bubonic plague to theoretical pathogens on other worlds, a sweeping look at the past, present, and future of mass infections—and how we battle them.
 
In this panoramic and up-to-date account, we learn how the Black Death, smallpox, the 1918 influenza pandemic, and other great epidemics have not only led to enormous suffering and mass death but have also contributed to the fall of empires and changed the course of history. We also discover how new infectious diseases such as HIV/AIDS and COVID-19 emerge—and how we wage war against them.
 
Humanity has struck back at the microbes: antibiotics and new vaccines have saved millions of lives. But the battle with these relentless, silent enemies is far from won. We face increasing threats from new and unavoidable pandemics, antibiotic resistance, and even potential extraterrestrial microbes. Duel Without End is a fascinating journey through the long history of infection, from the dawn of life to humanity’s future exploration of deep space.
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The Emotional Journey of the Alzheimer's Family
Robert B. Santulli and Kesstan Blandin
Dartmouth College Press, 2015
Alzheimer’s disease is a growing public health crisis. According to the Alzheimer’s Association, there are 5.4 million victims of this disease; by 2050, there will be close to 15 million people who suffer from this debilitating disorder of memory, thinking, personality, and functioning. The disease profoundly affects immediate family members, close friends, and neighbors. These people—the Alzheimer’s family—undergo tremendous psychological and emotional change as they witness the cruel and relentless progression of the disease in their loved one. Incorporating over thirty years of experience with Alzheimer’s patients and their families with current medical knowledge, the authors chart the complex emotional journey of the Alzheimer’s family from the onset of the disease through the death of the loved one. They discuss the anger that rises in the face of discordant views of the disease, the defenses that emerge when family members are unwilling to accept a dementia diagnosis, and the common emotions of anxiety, guilt, anger, and shame. They focus especially on grief as the core response to losing a loved one to dementia, and describe the difficult processes of adaptation and acceptance, which lead to personal growth. Final chapters emphasize the importance of establishing a care community and how to understand and cope with personal stress. This volume will be useful to medical professionals and ordinary people close to or caring for a person with dementia.
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An Epidemic of Uncertainty
Navigating HIV and Young Adulthood in Malawi
Jenny Trinitapoli
University of Chicago Press, 2023
A decade-long study of young adulthood in Malawi that demonstrates the impact of widespread HIV status uncertainty, laying bare the sociological implications of what is not known.

An Epidemic of Uncertainty advances a new framework for studying social life by emphasizing something social scientists routinely omit from their theories, models, and measures–what people know they don’t know. Taking Malawi’s ongoing AIDS epidemic as an entry point, Jenny Trinitapoli shows that despite admirable declines in new HIV infections and AIDS-related mortality, an epidemic of uncertainty persists; at any given point in time, fully half of Malawian young adults don’t know their HIV status. Reckoning with the impact of this uncertainty within the bustling trading town of Balaka, Trinitapoli argues that HIV-related uncertainty is measurable, pervasive, and impervious to biomedical solutions, with consequences that expand into multiple domains of life, including relationship stability, fertility, and health. Over the duration of a groundbreaking decade-long longitudinal study, rich survey data and poignant ethnographic vignettes vividly depict how individual lives and population patterns unfold against the backdrop of an ever-evolving epidemic. Even as HIV is transformed from a progressive, fatal disease to a chronic and manageable condition, the accompanying epidemic of uncertainty remains fundamental to understanding social life in this part of the world.

Insisting that known unknowns can and should be integrated into social-scientific models of human behavior, An Epidemic of Uncertainty treats uncertainty as an enduring aspect, a central feature, and a powerful force in everyday life.
 
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Esophageal Cancer
Real life stories from patients and families
Edited by Ellen R. Abramson
Michigan Publishing Services, 2015
This book presents the stories of eleven patients and family members who received the diagnosis of esophageal cancer. The stories, provided by esophageal cancer survivors, illustrate some of the setbacks and some of the triumphs, that these individuals and their families encountered. All of these patients underwent a remarkable surgical procedure known as an esophagectomy. During this operation, the majority of the esophagus is removed. In order to restore swallowing, the stomach is reconfigured into a tube that is repositioned in the chest and neck and sutured to the remaining esophagus. The stories convey courage and strength in the face of a major life-changing event and its consequences. The authors describe in detail what the experience was like for themselves and their loved ones. Their stories are inspiring and offer hope to others facing this illness. Book sales support patient and family education in the Thoracic Surgery section of the University of Michigan Health System.
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Fatal Advice
How Safe-Sex Education Went Wrong
Cindy Patton
Duke University Press, 1996
The American public responded to the first cases of AIDS with fear and panic. Both policymakers and activists were concerned not only with stopping the spread of the disease, but also with guiding the public’s response toward those already infected. Fatal Advice is an examination of how the nation attempted, with mixed results, to negotiate the fears and concerns brought on by the epidemic. A leading writer on the cultural politics of AIDS, Cindy Patton guides us through the thicket of mass-media productions, policy and public health enterprises, and activist projects as they sprang up to meet the challenge of the epidemic, shaping the nation’s notion of what safe-sex is and who ought to know what about it.
There is the official story, and then there is another, involving local groups and AIDS activists. Going back to early government and activist attempts to spread information, Patton traces a slow separation between official advice and that provided by those on the front lines in the battle against AIDS. She shows how American anxieties about teen sex played into the nation’s inadequate education and protection of its young people, and chronicles the media’s attempts to encourage compassion without broaching the touchy subject of sex or disrupting the notion that AIDS was a disease of social and sexual outcasts. Her overview of the relationship between shifting medical perceptions and safe-sex advice reveals why radical safe-sex educators eventually turned to sexually explicit, including pornographic, representations to spread their message—and why even these extreme tactics could not overcome the misguided national teaching on AIDS.
Patton closes with a stirring manifesto, an urgent call to action for all those who do not want to see the hard lessons of AIDS education and activism wasted, or, with these lessons, the loss of so many more lives.
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Fault Lines of Care
Gender, HIV, and Global Health in Bolivia
Heckert, Carina
Rutgers University Press, 2018
The HIV epidemic in Bolivia has received little attention on a global scale in light of the country’s low HIV prevalence rate. However, by profiling the largest city in this land-locked Latin American country, Carina Heckert shows how global health-funded HIV care programs at times clash with local realities, which can have catastrophic effects for people living with HIV who must rely on global health resources to survive. These ethnographic insights, as a result, can be applied to AIDS programs across the globe.
 
In Fault Lines of Care, Heckert provides a detailed examination of the effects of global health and governmental policy decisions on the everyday lives of people living with HIV in Santa Cruz. She focuses on the gendered dynamics that play a role in the development and implementation of HIV care programs and shows how decisions made from above impact what happens on the ground.  
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Guarding the Golden Gate
A History of the U.S. Quarantine Station in San Francisco Bay
J. Gordon Frierson, MD
University of Nevada Press, 2022
As a major seaport, San Francisco had for decades struggled to control infectious diseases carried by passengers on ships entering the port. In 1882, a steamer from Hong Kong arrived carrying over 800 Chinese passengers, including one who had smallpox. The steamer was held in quarantine for weeks, during which time more passengers on board the ship contracted the disease. This episode convinced port authorities that better means of quarantining infected ship arrivals were necessary.

Guarding the Golden Gate covers not only the creation and operation of the station, which is integral to San Francisco’s history, but also discusses the challenges of life on Angel Island—a small, exposed, and nearly waterless landmass on the north side of the Bay. The book reveals the steps taken to prevent the spread of diseases not only into the United States but also into other ports visited by ships leaving San Francisco; the political struggles over the establishment of a national quarantine station; and the day-to-day life of the immigrants and staff inhabiting the island. With the advancement of the understanding of infectious diseases and the development of treatments, the quarantine station’s activities declined in the 1930s, and the facility ultimately shuttered its doors in 1949.

While Angel Island is now a California state park, it remains as a testament to an influential period in the nation’s history that offers rich insights into efforts to maintain the public’s safety during health crises.
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Heart 2 Heart
Stories from Patients with Left Ventricular Assist Devices
Edited by Ruth Halben, M.S.W.
Michigan Publishing Services, 2016
Heart 2 Heart brings together stories of patients who suffered from a serious heart condition and therefore received an LVAD (Left Ventricular Assist Device). The patients describe the various
hardships they and their families endured as well as how many found hope after receiving an LVAD.
 
Each chapter is written by a different patient or a patient’s family member, creating a unique
collection of stories that reveals the realities of living life with an implanted heart pump. Heart 2 Heart is composed of seventeen patient voices, where fourteen males and three females of different ethnicities and ages share with the reader their tale--from their initial diagnosis, to their eventual LVAD procedure performed at the University of Michigan Hospital.
 
The editor, Ruth Halben, M.S.W., is a clinical social worker in the University of Michigan Health System who works with LVAD patients and their families. Ruth is one of the first LVAD social workers in the nation, and she draws both from her expertise and her heartfelt relationships with her patients to bring together this wonderful resource for current and future LVAD patients.
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Heterosexual Africa?
The History of an Idea from the Age of Exploration to the Age of AIDS
Marc Epprecht
Ohio University Press, 2008

Heterosexual Africa? The History of an Idea from the Age of Exploration to the Age of AIDS builds from Marc Epprecht’s previous book, Hungochani (which focuses explicitly on same-sex desire in southern Africa), to explore the historical processes by which a singular, heterosexual identity for Africa was constructed—by anthropologists, ethnopsychologists, colonial officials, African elites, and most recently, health care workers seeking to address the HIV/AIDS pandemic. This is an eloquently written, accessible book, based on a rich and diverse range of sources, that will find enthusiastic audiences in classrooms and in the general public.

Epprecht argues that Africans, just like people all over the world, have always had a range of sexualities and sexual identities. Over the course of the last two centuries, however, African societies south of the Sahara have come to be viewed as singularly heterosexual. Epprecht carefully traces the many routes by which this singularity, this heteronormativity, became a dominant culture. In telling a fascinating story that will surely generate lively debate, Epprecht makes his project speak to a range of literatures—queer theory, the new imperial history, African social history, queer and women’s studies, and biomedical literature on the HIV/AIDS pandemic. He does this with a light enough hand that his story is not bogged down by endless references to particular debates.

Heterosexual Africa? aims to understand an enduring stereotype about Africa and Africans. It asks how Africa came to be defined as a “homosexual-free zone” during the colonial era, and how this idea not only survived the transition to independence but flourished under conditions of globalization and early panicky responses to HIV/AIDS.

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Hijacked Brains
The Experience and Science of Chronic Addiction
Henrietta Robin Barnes
Dartmouth College Press, 2015
This book, written from the perspective of a practicing primary care physician, interweaves patients’ stories with fascinating new brain research to show how addictive drugs overtake basic brain functions and transform them to create a chronic illness that is very difficult to treat. The idea that drug and alcohol addiction are chronic illnesses and not character flaws is not news—this notion has been around for many years. What Hijacked Brains offers is context and personal stories that demonstrate this point in a very accessible package. Dr. Barnes explores how the healthy brain works, how addictive drugs flood basic reward pathways, and what it feels like to grapple with addiction. She discusses how, for individuals, the combination of genetic and environmental factors determines both vulnerability for addiction and the resilience necessary for recovery. Finally, she shows how American culture, with its emphasis on freewill and individualism, tends to blame the addict for bad choices and personal weakness, thereby impeding political and/or health-related efforts to get the addict what she needs to recover.
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The Histories of HIVs
The Emergence of the Multiple Viruses That Caused the AIDS Epidemics
William H. Schneider
Ohio University Press, 2021

This new collection of essays on HIV viruses spans disciplines to topple popular narratives about the origins of the AIDS pandemic and the impact of the disease on public health policy.

With a death toll in the tens of millions, the AIDS pandemic was one of the worst medical disasters of the past century. The disease was identified in 1981, at the height of miraculous postwar medical achievements, including effective antibiotics, breakthrough advances in heart surgery and transplantations, and cheap, safe vaccines—smallpox had been eradicated just a few years earlier. Arriving as they did during this era of confidence in modern medicine, the HIV epidemics shook the public’s faith in health science. Despite subsequent success in identifying, testing, and treating AIDS, the emergence of epidemics and outbreaks of Ebola, Zika, and the novel coronaviruses (SARS and COVID-19) are stark reminders that such confidence in modern medicine is not likely to be restored until the emergence of these viruses is better understood.

This collection combines the work of major social science and humanities scholars with that of virologists and epidemiologists to provide a broader understanding of the historical, social, and cultural circumstances that produced the pandemic. The authors argue that the emergence of the HIV viruses and their epidemic spread were not the result of a random mutation but rather broader new influences whose impact depended upon a combination of specific circumstances at different places and times. The viruses emerged and were transmitted according to population movement and urbanization, changes in sexual relations, new medical procedures, and war. In this way, the AIDS pandemic was not a chance natural occurrence, but a human-made disaster.

Essays by: Ernest M. Drucker, Tamara Giles-Vernick, Ch. Didier Gondola, Guillaume Lachenal, Amandine Lauro, Preston A. Marx, Stephanie Rupp, François Simon, Jorge Varanda

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The History of Blood Transfusion in Sub-Saharan Africa
William H. Schneider
Ohio University Press, 2013

This first extensive study of the practice of blood transfusion in Africa traces the history of one of the most important therapies in modern medicine from the period of colonial rule to independence and the AIDS epidemic. The introduction of transfusion held great promise for improving health, but like most new medical practices, transfusion needed to be adapted to the needs of sub-Saharan Africa, for which there was no analogous treatment in traditional African medicine.

This otherwise beneficent medical procedure also created a “royal road” for microorganisms, and thus played a central part in the emergence of human immune viruses in epidemic form. As with more developed health care systems, blood transfusion practices in sub-Saharan Africa were incapable of detecting the emergence of HIV. As a result, given the wide use of transfusion, it became an important pathway for the initial spread of AIDS. Yet African health officials were not without means to understand and respond to the new danger, thanks to forty years of experience and a framework of appreciating long-standing health risks. The response to this risk, detailed in this book, yields important insight into the history of epidemics and HIV/AIDS.

Drawing on research from colonial-era governments, European Red Cross societies, independent African governments, and directly from health officers themselves, this book is the only historical study of the practice of blood transfusion in Africa.

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Hope is the Thing
Wisconsinites on Perseverance in a Pandemic
B. J. Hollars
Wisconsin Historical Society Press, 2021
In March 2020, as a pandemic began to ravage our world, writer and professor B. J. Hollars started a collaborative writing project to bridge the emotional challenges created by our physical distancing. Drawing upon Emily Dickinson’s famous poem “‘Hope’ is the thing with feathers,” Hollars called on Wisconsinites to reflect on their own glimpses of hope in the era of COVID-19. The call resulted in an avalanche of submissions, each reflecting on hope’s ability to persist and flourish, even in the darkest times.

As the one hundred essays and poems gathered here demonstrate, hope comes in many forms: a dad dance, a birth plan, an unblemished banana, a visit from a neighborhood dog, the revival of an old tradition, empathy. The contributors are racially, geographically, and culturally diverse, representing a rough cross section of Wisconsin voices, from truck driver to poet laureate, from middle school student to octogenarian, from small business owner to seasoned writer. The result is a book-length exploration of the depth and range of hope experienced in times of crisis, as well as an important record of what Wisconsinites were facing and feeling through these historic times.
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Hospital Time
Amy Hoffman
Duke University Press, 1997
Hospital Time is a memoir about friendship, family, and caregiving in the age of AIDS. Amy Hoffman, a writer, lesbian activist, and former editor of Gay Community News, chronicles with fury and unflinching honesty her experience serving as primary caretaker for her friend and colleague, Mike Riegle, who died from AIDS-related complications in 1992. Hoffman neither idealizes nor deifies Riegle, whom she portrays as a brilliant man, devoted prison rights activist, and very difficult friend.
Hoffman became central to Riegle’s caregiving when he asked her to be his health-care proxy, and although she willingly chose to do this, she explores her conflicting feelings about herself in this role and about her involvement with Riegle and his grueling struggle with hospitalization, illness, and, finally, death. She tells of the waves of grief that echoed throughout her life, awakening memories of other losses, entering her dreams and fantasies, and altering her relationships with friends, family, and even total strangers.
Hoffman’s memoir gives voice to the psychological and emotional havoc AIDS creates for those in the difficult role of caring for the terminally ill and it gives recognition to the role that lesbians continue to play in the AIDS emergency. A foreword by Urvashi Vaid, former executive director of the National Gay and Lesbian Task Force, offers a meditation on the politics of AIDS and the role of family in the lives of lesbians and gay men.
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How to Have Theory in an Epidemic
Cultural Chronicles of AIDS
Paula A. Treichler
Duke University Press, 1999
Paula A. Treichler has become a singularly important voice among the significant theorists on the AIDS crisis. Dissecting the cultural politics surrounding representations of HIV and AIDS, her work has altered the field of cultural studies by establishing medicine as a legitimate focus for cultural analysis. How to Have Theory in an Epidemic is a comprehensive collection of Treichler’s related writings, including revised and updated essays from the 1980s and 1990s that present a sustained argument about the AIDS epidemic from a uniquely knowledgeable and interdisciplinary standpoint.
“AIDS is more than an epidemic disease,” Treichler writes, “it is an epidemic of meanings.” Exploring how such meanings originate, proliferate, and take hold, her essays investigate how certain interpretations of the epidemic dominate while others are obscured. They also suggest ways to understand and choose between overlapping or competing discourses. In her coverage of roughly fifteen years of the AIDS epidemic, Treichler addresses a range of key issues, from biomedical discourse and theories of pathogenesis to the mainstream media’s depictions of the crisis in both developed and developing countries. She also examines representations of women and AIDS, treatment issues, and the role of activism in shaping the politics of the epidemic. Linking the AIDS tragedy to a uniquely broad spectrum of contemporary theory and culture, this collection concludes with an essay on the continued importance of theoretical thought for untangling the sociocultural phenomena of AIDS—and for tackling the disease itself.
With an exhaustive bibliography of critical and theoretical writings on HIV and AIDS, this long-awaited volume will be essential to all those invested in studying the course of AIDS, its devastating medical effects, and its massive impact on contemporary culture. It should become a standard text in university courses dealing with AIDS in biomedicine, sociology, anthropology, gay and lesbian studies, women’s studies, and cultural and media studies.


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I Can't Remember
Family Stories of Alzheimer's Disease
Esther Strauss Smoller
Temple University Press, 1997
I Can't Remember is an intimate photo essay of four families and their process of coping with Alzheimer's disease -- a process of coming to terms with the practical and emotional consequences of a disease that changes the entire family dynamic. Family members tell their stories of first denying that their loved one cold be suffering from Alzheimer's, then dealing with the changing relationships among family members and the intensifying emotions, as old family troubles are stirred up and new feelings of despair and love appear.

Photographs and  personal narratives are woven together to show both the unpleasant and the beautiful sides of the struggle for connection between spouses and across generations. Smoller has a gift for capturing people as they interact, whether it's arguing around the kitchen table or dancing cheek to cheek.

Each family's story is different, but all four families share common pain and frustration. A highway patrolman who has early onset Alzheimer's describes what it is like to have Alzheimer's. His wife tells a parallel story of life together after hearing the diagnosis. A daughter gives the following account of her mother: "I though that it would be helpful if mother spent time in my home in Colorado. Before this visit, I was in denial, convinced that she suffered from depression and not Alzheimer's disease. ... On the plane trip to Colorado, I was brought into the stark, cold reality that Mom had Alzheimer's. She did not know where she was or where she was going. Upon arrival, she did not recognize my home, although she had visited me numerous times in the past. She tried sleeping in the bathtub the first night."

Another daughter relates that she was unaware of the onset of Alzheimer's in her mother, because her mother was such a "wonderful actress." Eventually the memory problems were no longer confined to where things belonged in the kitchen, but extended into driving off at random, driving in circles in a parking lot in the middle of the night or as much as 75 miles away from home.

I Can't Remember gives an intimate glimpse into the hearts and minds of caregivers and patients. Supportive social networks are essential for healthy life. This book provides the impetus caregivers need to develop contacts that can provide support. Smoller offers a glimpse of the frustration and losses faced by those who deal with Alzheimer's, as well as the potential to transcend those losses -- even is only for a time -- through love and hope.
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‘I Know Who Caused COVID-19’
Pandemics and Xenophobia
Zhou Xun and Sander L. Gilman
Reaktion Books, 2021
A timely exploration of the global explosion in xenophobia during the COVID-19 pandemic.
 
Through a close analysis of four cases from around the world, this book explores prejudice toward groups who are thought to have caused and spread COVID-19: the residents of Wuhan and Black African communities in China; ultra-Orthodox Jewish communities in the United States, United Kingdom, and Israel; African-Americans in the United States and Black/Asian/mixed ethnic communities in the United Kingdom; and White right-wing groups in the United States and Europe. The authors examine stereotyping and the false attribution of blame towards these groups, as well as what happens when a collective is actually at fault, and how the community deals with these conflicting issues.
 
This is a timely, cogent examination of the blame and xenophobia that have been brought to the surface by the COVID-19 pandemic.
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ICD Connection
Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories
Edited by Helen McFarland, RN
Michigan Publishing Services, 2012
Ten ICD recipients and family members share, in their own words, their unique journey of living with an implantable cardioverter defibrillator (ICD), cardiac arrhythmia, and for some, sudden cardiac arrest. These personal stories represent a diverse collection of experiences from many perspectives such as age, gender, culture, and diagnoses. These ten authors offer advice, encouragement, and hope to others living with similar experiences. The book also includes educational information and resources regarding ICD’s and advice from a clinical psychologist who specializes in helping ICD recipients and family members with emotional and psychological issues related to ICD implantation and cardiac arrhythmia. The book is an educational and support resource for anyone who has been touched by cardiac illness or ICD implantation. It also serves well for healthcare providers as it offers insight and understanding into the patients and families perspective after ICD implantation.
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ICD Connection
Living with an Implantable Cardioverter Defibrillator: A Collection of Stories from Women & Men
Edited by Helen McFarland, RN
Michigan Publishing Services, 2014
The book includes 13 first-hand accounts from women and men who are living life with an implantable cardioverter defibrillator (ICD). The book examines similarities and unique differences women and men face during diverse life stages with an ICD and cardiac disease diagnosis. General information about ICD’s is included along with expert advice from well-published doctors in the field of anxiety, fear, and depression after ICD implantation and ICD shock.
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The Ice Bucket Challenge
Pete Frates and the Fight against ALS
Casey Sherman and Dave Wedge
University Press of New England, 2017
While everyone knows of the Ice Bucket Challenge, the viral craze that swept the nation in summer 2014, too few know the truly inspirational story behind it. Pete Frates was a man at war with his own body. A man whose love for others was unshakable. A man who refused to fight alone, and in so doing mobilized a global army to combat one of the most devastating diseases on earth: ALS, or Lou Gehrig’s disease. When disease crippled Frates, the former Boston College baseball star turned tragedy into inspiration. Pete’s story is a testament to the power of love, the steadfastness of family, the generosity of strangers, and the compassion of crowds. Half of the authors’ proceeds will go to the Frates family.
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Improving Dementia Long-Term Care
A Policy Blueprint
Regina A. Shih
RAND Corporation, 2014
In 2010, 15 percent of Americans older than age 70 had dementia. By 2050, the number of new dementia cases among those 65 and older is expected to double. This blueprint outlines policy options to help decisionmakers improve dementia long-term services and supports (LTSS) by promoting earlier detection, improving access to LTSS, promoting person- and caregiver-centered care, supporting caregivers, and reducing dementia LTSS costs.
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In Changing Times
Gay Men and Lesbians Encounter HIV/AIDS
Edited by Martin P. Levine, Peter M. Nardi, and John H. Gagnon
University of Chicago Press, 1997
The HIV/AIDS epidemic has been a major catastrophe for gay communities. In less than two decades, the disease has profoundly changed the lives of gay men and lesbians. Not just a biological and viral agent, HIV has become an opportunistic social invader, reshaping communities and the distribution of wealth, altering the social careers of gay professionals and the patterns of entry into gay and lesbian life, and giving birth to groups like ACT UP and Queer Nation.

The distinguished contributors to this volume discuss the ways HIV/AIDS has changed collective and individual identities, as well as lives, of gay men and lesbians, and how these alterations have changed our perceptions of the epidemic. They cover such topics as the impact of the epidemic on small towns, cultural barriers to AIDS prevention, gay youth and intergenerational relations, and the roles of lesbians in AIDS organizations. This collection provides compelling insights into the new communities among gay men and lesbians and the new kinds of identities and relationships that are emerging from the social and cultural ferment engendered by HIV/AIDS.

Contributors include Barry D. Adam, Lourdes Arguelles, Rafael Miguel Diaz, John H. Gagnon, Gilbert Herdt, Gregory M. Herek, Nan D. Hunter, Peter M. Nardi, John L. Peterson, Anne Rivero, Gayle S. Rubin, Beth E. Schneider, and Nancy E. Stoller.
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Inside/Outside
A Physician's Journey with Breast Cancer
Janet R. Gilsdorf, M.D.
University of Michigan Press, 2006
To doctors, cancer means cells growing out of control; to patients, cancer means a life spinning out of control. Janet R. Gilsdorf, who writes with quiet but devastating honesty about her experience with breast cancer, offers an eye-opening glimpse, through her unique dual perspective as physician and patient, of both sides of the medical divide.

The medical system delivers cures, answers, and relief from pain to those who seek its help, but it can also offer misinformation, shattered expectations, horrible options, and inhumane consideration of the people it is supposed to serve. As Gilsdorf takes us on a journey across the terrifying landscape of cancer, she discovers that there are oases of unfathomable beauty to be found.

Inside/Outside is compelling, sometimes scary, reading as it puts us inside Gilsdorf’s skin. It ponders a vast array of profound choices most of us will be confronted with in our lives: thinking versus feeling, knowing versus not knowing, hanging on versus letting go, loving versus hating, and the immeasurable territories of life between the poles. Even as it touches on these universal human themes, ultimately Inside/Outside is a story of one person’s courage, hope, and survival in the face of terrifying odds.
Janet R. Gilsdorf, M.D., is Professor of Pediatrics and Communicable Diseases, Division of Infectious Diseases, Medical School, and Professor of Epidemiology, School of Public Health, at the University of Michigan. She is also Director of Pediatric Infectious Diseases, Mott Children's Hospital; Director of the Cell and Molecular Biology in Pediatrics Training Program; and Director of the Haemophilus influenzae Research Laboratory.
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Kampala Women Getting By
Wellbeing in the Time of AIDS
Sandra Wallman
Ohio University Press, 1996

What do ordinary women in an African city do in the face of “serious enough” infections in themselves and signs of acute illness in their young children? How do they manage? What does it take to get by? How do they maintain the wellbeing of the household in a setting without what would be considered as basic health provision in an American or European city?

Professor Wallman focuses on women in a densely-populated part of Kampala called Kamwokya. With the help of a team of Ugandans and non-Ugandans, a vivid picture emerges, enhanced by color photographs, sketches and maps.

Women are largely responsible for the management of illness in all members of the family. Young children are at particular risk and the women have to take the first crucial decisions about treatment. Formal health resources are scarce and so they most often resort to an extraordinary range of treatments provided in the informal economy. A holistic picture of all the options that local people recognize is drawn, and an enriched understanding of problems and opportunities for health care in tropical cities emerges.

Multidisciplinary work on sexually transmitted disease is rare, even in this time of AIDS, and the book effectively maps the social contexts of its perception and management. Moreover, it focuses on women as ordinary citizens, selected by residence and not by reference to known medical conditions or high risk behavior. It is important too that the field strategies have encouraged local informants to become active participants in the definition of local problems and their solutions.

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The Krebiozen Hoax
How a Mysterious Cancer Drug Shook Organized Medicine
Matthew C. Ehrlich
University of Illinois Press, 2024

The brainchild of an obscure Yugoslav physician, Krebiozen emerged in 1951 as an alleged cancer treatment. Andrew Ivy, a University of Illinois vice president and a famed physiologist dubbed “the conscience of U.S. science,” wholeheartedly embraced Krebiozen. Ivy’s impeccable credentials and reputation made the treatment seem like another midcentury medical miracle. But after years of controversy, the improbable saga ended with Krebiozen proved a sham, its inventor fleeing the country, and Ivy’s reputation and legacy in ruins.

Matthew C. Ehrlich’s history of Krebiozen tells a quintessential story of quackery. Though most experts dismissed the treatment, it found passionate public support not only among cancer patients but also people in good health. The treatment’s rise and fall took place against the backdrop of America’s never-ending suspicion of educational, scientific, and medical expertise. In addition, Ehrlich examines why people readily believe misinformation and struggle to maintain hope in the face of grave threats to well-being.

A dramatic account of fraud and misplaced trust, The Krebiozen Hoax shines a light on a forgotten medical scandal and its all-too-familiar relevance in the twenty-first century.

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Lake Effect
Two Sisters and a Town's Toxic Legacy
Nancy A. Nichols
Island Press, 2010
On her deathbed, Sue asked her sister for one thing: to write about the connection between the industrial pollution in their hometown and the rare cancer that was killing her. Fulfilling that promise has been Nancy Nichols’ mission for more than a decade.

Lake Effect is the story of her investigation. It reaches back to their childhood in Waukegan, Illinois, an industrial town on Lake Michigan once known for good factory jobs and great fishing. Now Waukegan is famous for its Superfund sites: as one resident put it, asbestos to the north, PCBs to the south.
 
Drawing on her experience as a journalist, Nichols interviewed dozens of scientists, doctors, and environmentalists to determine if these pollutants could have played a role in her sister’s death. While researching Sue’s cancer, she discovered her own: a vicious though treatable form of pancreatic cancer. Doctors and even family urged her to forget causes and concentrate on cures, but Nichols knew that it was relentless questioning that had led to her diagnosis. And that it is questioning—by government as well as individuals—that could save other lives.
 
Lake Effect challenges us to ask why. It is the fulfillment of a sister’s promise. And it is a call to stop the pollution that is endangering the health of all our families.
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The Last of His Mind, Second Edition
A Year in the Shadow of Alzheimer’s
John Thorndike
Ohio University Press, 2021
The second, expanded edition of this acclaimed memoir by an Alzheimer’s caregiver living with his father during his final year includes a new introduction that illustrates the immense toll of the disease, important lessons from the author’s experience, and a readers' guide. Joe Thorndike was managing editor of Life at the height of its popularity immediately following World War II. He was the founder of American Heritage and Horizon magazines, the author of three books, and the editor of a dozen more. But at age ninety-two, in the space of six months he stopped reading or writing or carrying on detailed conversations. He could no longer tell time or make a phone call. He was convinced that the governor of Massachusetts had come to visit and was in the refrigerator. Over six million Americans suffer from Alzheimer’s, and like many of them, Joe Thorndike’s one great desire was to remain in his own house. To honor his wish, his son John left his own home and moved into his father’s upstairs bedroom on Cape Cod. For a year, in a house filled with file cabinets, photos, and letters, John explored his father’s mind, his parents’ divorce, and his mother’s secrets. The Last of His Mind is the bittersweet account of a son’s final year with his father and a candid portrait of an implacable disease. It’s the ordeal of Alzheimer’s that draws father and son close, closer than they have been since John was a boy. At the end, when Joe’s heart stops beating, John’s hand is on his chest, and a story of painful decline has become a portrait of deep family ties, caregiving, and love.
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Living Chronic
Agency and Expertise in the Rhetoric of Diabetes
Lora Arduser
The Ohio State University Press, 2017

Diabetes, referred to as an epidemic for more than a decade, remains one of our most significant health issues in the twenty-first century. Because self-management is an important component of living with the disease, the biomedical concept of patient agency has long stressed notions of individual responsibility and autonomy. However, dramatic shifts in both health care and cultural practices call for a reassessment of traditional definitions of patient agency.

Lora Arduser’s Living Chronic: Agency and Expertise in the Rhetoric of Diabetes answers this call with a unique rhetorical examination of one of the most critical issues in contemporary health: how we live and work with being chronic. Through her perceptive analysis of the discourse of both people with diabetes and health care providers, Arduser presents a new model for patient agency—one that advocates for a relational, fluid concept of agency that blurs the boundaries between medical experts and patients. Her thought-provoking use of bodily and rhetorical plasticity crafts a multidimensional picture of patient agency that profoundly affects how rhetorical scholars, people living with chronic illness, and health care providers can forge patient-centered discourse and practices.

[more]

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Lung Cancer Chronicles
Meyer, M.D., John
Rutgers University Press, 1990
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Lyme
The First Epidemic of Climate Change
Mary Beth Pfeiffer
Island Press, 2021
"Superbly written and researched." Booklist

"Builds a strong case." Kirkus

Lyme disease is spreading rapidly around the globe as ticks move into places they could not survive before. The first epidemic to emerge in the era of climate change, the disease infects half a million people in the US and Europe each year, and untold multitudes in Canada, China, Russia, and Australia.

Mary Beth Pfeiffer shows how we have contributed to this growing menace, and how modern medicine has underestimated its danger. She tells the heart-rending stories of families destroyed by a single tick bite, of children disabled, and of one woman’s tragic choice after an exhaustive search for a cure.

Pfeiffer also warns of the emergence of other tick-borne illnesses that make Lyme more difficult to treat and pose their own grave risks. Lyme is an impeccably researched account of an enigmatic disease, making a powerful case for action to fight ticks, heal patients, and recognize humanity’s role in a modern scourge.
[more]

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Mammography Wars
Analyzing Attention in Cultural and Medical Disputes
Asia Friedman
Rutgers University Press, 2023
Mammography is a routine health screening performed forty million times each year in the United States, yet it remains one of the most deeply contested topics in medicine, with national health care organizations supporting conflicting guidelines. In Mammography Wars, sociologist Asia Friedman examines cultural and medical disagreements over mammography. At issue is whether to screen women under age fifty, which is rooted in deeper questions about early detection and the assumed linear and progressive development of breast cancer. Based on interviews with doctors and scientists, interviews with women ages 40 to 50, and newspaper coverage of mammography, Friedman uses the sociology of attention to map the cognitive structure of the “mammography wars,” offering insights into the entrenched nature of debates over mammography that often get missed when applying a medical lens. Friedman’s analysis also suggests the sociology of attention’s unique potential for analyzing cultural conflicts beyond mammography, and even beyond medicine.
 
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Mary Lincoln's Insanity Case
A Documentary History
Jason Emerson
University of Illinois Press, 2012

In 1875 Mary Lincoln, the widow of a revered president, was committed to an insane asylum by her son, Robert. The trial that preceded her internment was a subject of keen national interest. The focus of public attention since Abraham Lincoln's election in 1860, Mary Lincoln had attracted plentiful criticism and visible scorn from much of the public, who perceived her as spoiled, a spendthrift, and even too much of a Southern sympathizer. Widespread scrutiny only increased following her husband's assassination in 1865 and her son Tad's death six years later, after which her overwhelming grief led to the increasingly erratic behavior that led to her being committed to a sanitarium. A second trial a year later resulted in her release, but the stigma of insanity stuck. In the years since, questions emerged with new force, as the populace and historians debated whether she had been truly insane and subsequently cured, or if she was the victim of family maneuvering.

In this volume, noted Lincoln scholar Jason Emerson provides a documentary history of Mary Lincoln's mental illness and insanity case, evenhandedly presenting every possible primary source on the subject to enable a clearer view of the facts. Beginning with documents from the immediate aftermath of her husband's assassination and ending with reminiscences by friends and family in the mid-twentieth century, Mary Lincoln's Insanity Case: A Documentary History compiles more than one hundred letters, dozens of newspaper articles, editorials, and legal documents, and the daily patient progress reports from Bellevue Place Sanitarium during Mary Lincoln's incarceration. Including many materials that have never been previously published, Emerson also collects multiple reminiscences, interviews, and diaries of people who knew Mary Lincoln or were involved in the case, including the first-hand recollection of one of the jurors in the 1875 insanity trial.

Suggesting neither accusation nor exoneration of the embattled First Lady, Mary Lincoln's Insanity Case: A Documentary History gives scholars and history enthusiasts incomparable access to the documents and information crucial to understanding this vexing chapter in American history.

[more]

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The Memory Sessions
Suzanne Farrell Smith
Bucknell University Press, 2019
Suzanne Farrell Smith’s father was killed by a drunk driver when she was six, and a devastating fire nearly destroyed her house when she was eight. She remembers those two—and only those two—events from her first nearly twelve years of life. While her three older sisters hold on to rich and rewarding memories of their father, Smith recalls nothing of him. Her entire childhood was, seemingly, erased. In The Memory Sessions, Smith attempts to excavate lost childhood memories. She puts herself through multiple therapies and exercises, including psychotherapy, hypnotherapy, somatic experiencing, and acupuncture. She digs for clues in her mother’s long-stored boxes. She creates—with objects, photographs, and captions—a physical timeline to compensate for the one that’s missing in her memory. She travels to San Diego, where her family vacationed with her father right before he died. She researches, interviews, and meditates, all while facing down the two traumatic memories that defined her early life. The result is an experimental memoir that upends our understanding of the genre. Rather than recount a childhood, The Memory Sessions attempts to create one from research, archives, imagination, and the memories of others. 

Published by Bucknell University Press. Distributed worldwide by Rutgers University Press.
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Modern Poisons
A Brief Introduction to Contemporary Toxicology
Alan S. Kolok
Island Press, 2014
Traditional toxicology textbooks tend to be doorstops: tomes filled with important but seemingly abstract chemistry and biology. Meanwhile, magazine and journal articles introduce students to timely topics such as BPA and endocrine disruption or the carcinogenic effects of pesticides, but don’t provide the fundamentals needed to understand the science of toxicity. Written by a longtime professor of toxicology, Modern Poisons bridges this gap.

This accessible book explains basic principles in plain language while illuminating the most important issues in contemporary toxicology. Kolok begins by exploring age-old precepts of the field such as the dose-response relationship and the concept, first introduced by Ambroise Paré in the sixteenth century, that a chemical’s particular action depends on its inherent chemical nature. The author goes on to show exactly how chemicals enter the body and elicit their toxic effect, as well as the body’s methods of defense.

With the fundamentals established, Kolok digs into advances in toxicology, tracing the field’s development from World War II to the present day. The book examines both technical discoveries and their impacts on public policy. Highlights include studies of endocrine-disrupting chemicals in toiletries and prescriptions, the emerging science on prions, and our growing understanding of epigenetics.

Readers learn not only how toxic exposure affects people and wildlife, but about the long-term social and environmental consequences of our chemicals. Whether studying toxicology itself, public health, or environmental science, readers will develop a core understanding of—and curiosity about—this fast-changing field.
[more]

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The Monsanto Papers
Deadly Secrets, Corporate Corruption, and One Man’s Search for Justice
Carey Gillam
Island Press, 2021
Lee Johnson was a man with simple dreams. All he wanted was a steady job and a nice home for his wife and children, something better than the hard life he knew growing up. He never imagined that he would become the face of a David-and-Goliath showdown against one of the world’s most powerful corporate giants. But a workplace accident left Lee doused in a toxic chemical and facing a deadly cancer that turned his life upside down. In 2018, the world watched as Lee was thrust to the forefront of one the most dramatic legal battles in recent history.
 
The Monsanto Papers is the inside story of Lee Johnson’s landmark lawsuit against Monsanto. For Lee, the case was a race against the clock, with doctors predicting he wouldn’t survive long enough to take the witness stand. For the eclectic band of young, ambitious lawyers representing him, it was a matter of professional pride and personal risk, with millions of dollars and hard-earned reputations on the line. For the public at large, the lawsuit presented a question of corporate accountability. With enough money and influence, could a company endanger its customers, hide evidence, manipulate regulators, and get away with it all—for decades?
 
Readers will be astounded by the depth of corruption uncovered, captivated by the shocking twists, and moved by Lee’s quiet determination to see justice served. With gripping narrative force that reads like fiction, The Monsanto Papers takes readers behind the scenes of a grueling legal battle, pulling back the curtain on the frailties of the American court system and the lengths to which lawyers will go to fight corporate wrongdoing.    
 
 
[more]

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Mortal Men
Living with Asymptomatic HIV
Mac Intyre, Richard
Rutgers University Press, 1999
Narrative non-fiction. A novel-like collection of compelling conversations between an HIV-positive nurse and other gay men with asymptomatic HIV. This book transports the reader into an urban world where gay men negotiated their sexuality, mortality, and health care between the decades of heady liberation and AIDS. See "inside flap" below.
[more]

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The Mythical Bill
A Neurological Memoir
Jody McAuliffe
University of Iowa Press, 2013
Part medical mystery, part war story, and part social and family history, The Mythical Bill is the story of how one man’s physical and mental pain radiates outward into the life and mind of each member of his family. Weaving together diary entries, correspondence, and scrupulous research, Jody McAuliffe examines her father’s life before, during, and after WWII, seeking answers to the questions of what really happened to Bill McAuliffe and what caused his disintegration. His initial postwar diagnosis was torticollis: a condition of persistent involuntary contraction of the neck muscles, causing the head to be twisted to an abnormal position. But torticollis was only the beginning of Bill’s suffering and his daughter’s efforts to understand it. The condition becomes a metaphor for things that refuse to fall into place: the body not in accord with the mind, the head that turns away from reality.
From this drama of dislocation and disjointed truths, two braided selves emerge: the I of Jody and the I of Bill. Through this doubleness, the writer probes a set of questions about how much we shape ourselves and how much we are shaped by forces beyond our control.
The Mythical Bill, a moving and unusual book, is for people who suffer the devastating effects of combat on the psyche, for those who encounter any debilitating disease, and for those who grow up with a father only partially present. McAuliffe’s ear-catching, evocative, and often breathtaking writing forces readers to confront the most terrifying question posed by a parent’s mental illness: will I get it too? Her narrative voice is searching, compassionate, and self-deprecating, but cut through with welcome bits of humor in this daughter’s story of confusion, sadness, and loss. 
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A New War on Cancer
The Unlikely Heroes Revolutionizing Prevention
Kristina Marusic
Island Press, 2023
For more than fifty years, we have been waging, but not winning, the war on cancer. We’re better than ever at treating the disease, yet cancer still claims the lives of one in five men and one in six women in the US. The astonishing news is that up to two-thirds of all cancer cases are linked to preventable environmental causes. If we can stop cancer before it begins, why don’t we?

That was the question that motivated Kristina Marusic’s revelatory inquiry into cancer prevention. In searching for answers, she met remarkable doctors, scientists, and advocates who are upending our understanding of cancer and how to fight it. They recognize that we will never reduce cancer rates without ridding our lives of the chemicals that increasingly trigger this deadly disease.

Most never imagined this role for themselves. One scientist grew up without seeing examples of Indian-American women in the field, yet went on to make shocking discoveries about racial disparities in cancer risk. Another leader knew her calling was children’s health, but realized only later in her career that kids can be harmed by invisible pollutants at their daycares. Others uncovered surprising links between cancer and the everyday items that fill our homes and offices.

For these individuals, the fight has become personal. And it certainly is personal for Berry, a young woman whose battle with breast cancer is woven throughout these pages. Might Berry have dodged cancer had she not grown up in Oil City, Pennsylvania, in the shadow of refineries? There is no way to know for sure. But she is certain that, even with the best treatment available, her life was changed irrevocably by her diagnosis. Marusic shows that, collectively, we have the power to prevent many cases like Berry’s. The war on cancer is winnable—if we revolutionize the way we fight.
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Not Quite a Cancer Vaccine
Selling HPV and Cervical Cancer
S.D. Gottlieb
Rutgers University Press, 2018
In Not Quite a Cancer Vaccine, medical anthropologist S.D. Gottlieb explores how the vaccine Gardasil—developed against the most common sexually-transmitted infection, human papillomavirus (HPV)—was marketed primarily as a cervical cancer vaccine. Gardasil quickly became implicated in two pre-existing debates—about adolescent sexuality and pediatric vaccinations more generally.

Prior to its market debut, Gardasil seemed to offer female empowerment, touting protection against HPV and its potential for cervical cancer. Gottlieb questions the marketing pitch’s vaunted promise and asks why vaccine marketing unnecessarily gendered the vaccine’s utility, undermining Gardasil’s benefit for men and women alike. This book demonstrates why in the ten years since Gardasil’s U.S. launch its low rates of public acceptance have their origins in the early days of the vaccine dissemination. Not Quite a Cancer Vaccine addresses the on-going expansion in U.S. healthcare of patients-as-consumers and the ubiquitous, and sometimes insidious, health marketing of large pharma.  
 
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On Learning to Heal
or, What Medicine Doesn't Know
Ed Cohen
Duke University Press, 2023
At thirteen, Ed Cohen was diagnosed with Crohn’s disease—a chronic, incurable condition that nearly killed him in his early twenties. At his diagnosis, his doctors told him that the best he could hope for would be periods of remission. Unfortunately, doctors never mentioned healing as a possibility. In On Learning to Heal, Cohen draws on fifty years of living with Crohn’s to consider how Western medicine’s turn from an “art of healing” toward a “science of medicine” deeply affects both medical practitioners and their patients. He demonstrates that although medicine can now offer many seemingly miraculous therapies, medicine is not and has never been the only way to enhance healing. Exploring his own path to healing, he argues that learning to heal requires us to desire and value healing as a vital possibility. With this book, Cohen advocates reviving healing’s role for all those whose lives are touched by illness.
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Periphery
How Your Nervous System Predicts and Protects against Disease
Moses V. Chao
Harvard University Press, 2023

A leading neuroscientist argues that the peripheral nervous system, long understood to play a key role in regulating basic bodily functions, also signals the onset of illness.

The central nervous system, consisting of the brain and the spinal cord, has long been considered the command center of the body. Yet outside the central nervous system, an elaborate network of nerve cells and fibers extends throughout our bodies, transmitting messages between the brain and other organs. The peripheral nervous system, as it’s known, regulates such vital functions as heart rate, digestion, and perspiration and enables us to experience the barrage of sounds, tastes, smells, and other sensory information that surrounds us. But beyond these crucial roles, the peripheral nervous system might do even more: it might warn us of diseases in our future.

As Moses Chao argues in Periphery, from Parkinson’s disease to autism to dementia, many neurological conditions emerge not in the brain but rather within the peripheral nervous system, in the dense network of nerves that wrap around the gastrointestinal tract. What’s more, dysfunctions of the peripheral nervous system can signal the onset of disease decades before symptoms like tremor or memory loss occur. Fortunately, unlike nerves in the brain and spinal cord, peripheral nerves can heal and regenerate in response to injury and aging. The therapeutic implications are remarkable. Chao shows how, with a better understanding of the peripheral nervous system, we could not only predict and treat neurological diseases long before their onset, but possibly prevent them altogether.

Full of new ideas and bold interpretations of the latest data, Periphery opens exciting avenues for medical research while deepening our understanding of a crucial yet underappreciated biological system.

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A Plague on All Our Houses
Medical Intrigue, Hollywood, and the Discovery of AIDS
Bruce J. Hillman
University Press of New England, 2016
A frightening new plague. A medical mystery. A pioneering immunologist. In A Plague on All Our Houses, Dr. Bruce J. Hillman dissects the war of egos, money, academic power, and Hollywood clout that advanced AIDS research even as it compromised the career of the scientist who discovered the disease. At the beginning of the worldwide epidemic soon to be known as AIDS, Dr. Michael Gottlieb was a young immunologist new to the faculty of UCLA Medical Center. In 1981 he was brought in to consult on a battery of unusual cases: four formerly healthy gay men presenting with persistent fever, weight loss, and highly unusual infections. Other physicians around the country had noted similar clusters of symptoms, but it was Gottlieb who first realized that these patients had a new and deadly disease. He also identified the defect in their immune system that allowed the disease to flourish. He published his findings in a now-iconic lead article in the New England Journal of Medicine—an impressive achievement for such a young scientist—and quickly became the focal point of a whirlwind of panic, envy, desperation, and distrust that played out against a glittering Hollywood backdrop. Courted by the media, the gay community, and the entertainment industry, Gottlieb emerged as the medical face of the terrifying new epidemic when he became personal physician to Rock Hudson, the first celebrity AIDS patient. With Elizabeth Taylor he cofounded the charitable foundation amfAR, which advanced public awareness of AIDS and raised vast sums for research, even as it struggled against political resistance that began with the Reagan administration and trickled down through sedimentary layers of bureaucracy. Far from supporting him, the UCLA medical establishment reacted with dismay to Gottlieb’s early work on AIDS, believing it would tarnish the reputation of the Medical Center. Denied promotion and tenure in 1987, Gottlieb left UCLA for private practice just as the National Institutes of Health awarded the institution a $10 million grant for work he had pioneered there. In the thirty-five years since the discovery of AIDS, research, prevention, and clinical care have advanced to the point that the disease is no longer the death sentence it once was. Gottlieb’s seminal article is now regarded by the New England Journal of Medicine as one of the most significant publications of its two-hundred-year history. A Plague on All Our Houses offers a ringside seat to one of the most important medical discoveries and controversies of our time.
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A Planet of Viruses
Second Edition
Carl Zimmer
University of Chicago Press, 2015
For years, scientists have been warning us that a pandemic was all but inevitable. Now it's here, and the rest of us have a lot to learn. 

Fortunately, science writer Carl Zimmer is here to guide us. In this compact volume, he tells the story of how the smallest living things known to science can bring an entire planet of people to a halt--and what we can learn from how we've defeated them in the past.

Planet of Viruses covers such threats as Ebola, MERS, and chikungunya virus; tells about recent scientific discoveries, such as a hundred-million-year-old virus that infected the common ancestor of armadillos, elephants, and humans; and shares new findings that show why climate change may lead to even deadlier outbreaks. Zimmer’s lucid explanations and fascinating stories demonstrate how deeply humans and viruses are intertwined. Viruses helped give rise to the first life-forms, are responsible for many of our most devastating diseases, and will continue to control our fate for centuries. Thoroughly readable, and, for all its honesty about the threats, as reassuring as it is frightening, A Planet of Viruses is a fascinating tour of a world we all need to better understand.
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A Poison Like No Other
How Microplastics Corrupted Our Planet and Our Bodies
Matt Simon
Island Press, 2022
“Informed, utterly blindsiding account.” - Booklist, starred review

It’s falling from the sky and in the air we breathe. It’s in our food, our clothes, and our homes. It’s microplastic and it’s everywhere—including our own bodies. Scientists are just beginning to discover how these tiny particles threaten health, but the studies are alarming.
 
In A Poison Like No Other, Matt Simon reveals a whole new dimension to the plastic crisis, one even more disturbing than plastic bottles washing up on shores and grocery bags dumped in landfills. Dealing with discarded plastic is bad enough, but when it starts to break down, the real trouble begins. The very thing that makes plastic so useful and ubiquitous – its toughness – means it never really goes away. It just gets smaller and smaller: eventually small enough to enter your lungs or be absorbed by crops or penetrate a fish’s muscle tissue before it becomes dinner.
 
Unlike other pollutants that are single elements or simple chemical compounds, microplastics represent a cocktail of toxicity: plastics contain at least 10,000 different chemicals. Those chemicals are linked to diseases from diabetes to hormone disruption to cancers.
 
A Poison Like No Other is the first book to fully explore this new dimension of the plastic crisis, following the intrepid scientists who travel to the ends of the earth and the bottom of the ocean to understand the consequences of our dependence on plastic. As Simon learns from these researchers, there is no easy fix. But we will never curb our plastic addiction until we begin to recognize the invisible particles all around us. 
 
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Policing Desire
Pornography, AIDS and the Media
Simon Watney
University of Minnesota Press, 1997

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The Political Economy of Stigma
HIV, Memoir, Medicine, and Crip Positionalities
Ally Day
The Ohio State University Press, 2021
Winner, 2022 Alison Piepmeier Prize from the National Women’s Studies Association

In The Political Economy of Stigma, Ally Day offers a compelling critique of neoliberal medical practices in the US by coupling an analysis of HIV memoir with a critical examination of narrative medicine practice. Using insights from feminist disability studies and crip theory, Day argues that stories of illness and disability—such as HIV memoirs—operate within a political economy of stigma, which she defines as the formal and informal circulation of personal illness and disability narratives that benefits some while hindering others. On the one hand, this system decreases access to appropriate medical care for those with chronic conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives and circulate them for public consumption.

The political economy of stigma is theorized from three primary research sites: a reading group with women living with HIV, a reading group with AIDS service workers, and participant observation research and critical close reading of practices in narrative medicine. Ultimately, it is the women living with HIV who provide an alternative way to understand disability and illness narratives, a practice of differential reading that can challenge stigmatizing tropes and reconceptualize the creation, reception, and circulation of patient memoir.
 
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Practices of Freedom
Selected Writings on HIV/AIDS
Simon Watney
Duke University Press, 1994
Since the mid-1980s, Simon Watney has been one of the leading voices in the international field of HIV/AIDS education. His monthly column on AIDS in Britain’s Gay Times is the longest-running column of its kind in Europe, and he is actively involved in HIV/AIDS issues in the United States. His work constitutes a unique dialogue between European and American perspectives on the epidemic. Practices of Freedom brings together for the first time Watney’s pioneering writings on topics ranging from gay men’s Safer Sex education to racist coverage of AIDS in Africa in the international media, from the ethics of clinical drug trials to governmental policies concerning AIDS.
Watney’s voice—neither neutral nor detached—is that of an active and influential participant in the fight against AIDS. He offers a unique view of the ways in which gay men working in community-based organizations have attempted to provide reliable and up-to-date services and information regarding AIDS treatment and health. A leader in insisting on gay men’s entitlements to education, care, and services, Watney was among the first to challenge the "de-gaying" of AIDS service organizations in the late eighties. He also devotes his attention to HIV/AIDS prevention work, research and treatment issues, and the wider cultural politics of the disease, including the role of language, television, and cinema. His analysis of the epidemic as it has unfolded provides a history of many of the major medical and political debates that have defined the course and extent of the crisis.
Practices of Freedom demonstrates the failure of national institutions, from the government to the press, to understand and effectively fight this epidemic, and directs attention to the most urgent needs in American and international AIDS work. It will be an important primary resource, particularly in the United States, where effective community-based HIV/AIDS education tragically has often been neglected.
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Reframing Bodies
AIDS, Bearing Witness, and the Queer Moving Image
Roger Hallas
Duke University Press, 2009
In Reframing Bodies, Roger Hallas illuminates the capacities of film and video to bear witness to the cultural, political, and psychological imperatives of the AIDS crisis. He explains how queer films and videos made in response to the AIDS epidemics in North America, Europe, Australia, and South Africa challenge longstanding assumptions about both historical trauma and the politics of gay visibility. Drawing on a wide range of works, including activist tapes, found footage films, autobiographical videos, documentary portraits, museum installations, and even film musicals, Hallas reveals how such “queer AIDS media” simultaneously express both immediacy and historical consciousness. Queer AIDS media are neither mere ideological critiques of the dominant media representation of homosexuality and AIDS nor corrective attempts to produce “positive images” of people living with HIV/AIDS. Rather, they perform complex, mediated acts of bearing witness to the individual and collective trauma of AIDS.

Challenging the entrenched media politics of who gets to speak, how, and to whom, Hallas offers a bold reconsideration of the intersubjective relations that connect filmmakers, subjects, and viewers. He explains how queer testimony reframes AIDS witnesses and their speech through its striking combination of direct address and aesthetic experimentation. In addition, Hallas engages recent historical changes and media transformations that have not only displaced queer AIDS media from activism to the archive, but also created new witnessing dynamics through the logics of the database and the remix. Reframing Bodies provides new insight into the work of Gregg Bordowitz, John Greyson, Derek Jarman, Matthias Müller, and Marlon Riggs, and offers critical consideration of important but often overlooked filmmakers, including Jim Hubbard, Jack Lewis, and Stuart Marshall.

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Remembering the AIDS Quilt
Charles E. Morris III
Michigan State University Press, 2011
A collaborative creation unlike any other, the Names Project Foundation’s AIDS Memorial Quilt has played an invaluable role in shattering the silence and stigma that surrounded the epidemic in the first years of its existence. Designed by Cleve Jones, the AIDS Quilt is the largest ongoing community arts project in the world. Since its conception in 1987, the Quilt has transformed the cultural and political responses to AIDS in the U.S. Representative of both marginalized and mainstream peoples, the Quilt contains crucial material and symbolic implications for mourning the dead, and the treatment and prevention of AIDS. However, the project has raised numerous questions concerning memory, activism, identity, ownership, and nationalism, as well as issues of sexuality, race, class, and gender. As thought-provoking as the Quilt itself, this diverse collection of essays by ten prominent rhetorical scholars provides a rich experience of the AIDS Quilt, incorporating a variety of perspectives, critiques, and interpretations.
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SARS Stories
Affect and Archive of the 2003 Pandemic
Belinda Kong
Duke University Press, 2024
In SARS Stories, Belinda Kong delves into the cultural archive of the 2003 SARS pandemic, examining Chinese-language creative works and social practices at the epicenters of the outbreak in China and Hong Kong. As the COVID-19 pandemic has highlighted issues of anti-Asian racism and sinophobia, Kong traces how Chinese people navigated the SARS pandemic and created meaning amid crisis through cultures of epidemic expression. From sentimental romances and Cantopop songs to raunchy sex comedies and crowdsourced ghost tales, unexpected and minor genres and creators of Chinese popular culture highlight the resilience and humanity of those living through the pandemic. Rather than narrating pandemic life in terms of crisis and catastrophe, Kong argues that these works highlight Chinese practices of community, care, and love amid disease. She also highlights the persistence of orientalism in anglophone accounts of SARS index patients and global reporting on COVID-era China. Kong shows how the Chinese experiences of living with SARS can reshape global feelings toward pandemic social life and foster greater fellowship in the face of pandemics.
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Seven Wheelchairs
A Life beyond Polio
Gary Presley
University of Iowa Press, 2008
In 1959, seventeen-year-old Gary Presley was standing in line, wearing his favorite cowboy boots and waiting for his final inoculation of Salk vaccine. Seven days later, a bad headache caused him to skip basketball practice, tell his dad that he was too ill to feed the calves, and walk from barn to bed with shaky, dizzying steps. He never walked again. By the next day, burning with the fever of polio, he was fastened into the claustrophobic cocoon of the iron lung that would be his home for the next three months. Set among the hardscrabble world of the Missouri Ozarks, sizzling with sarcasm and acerbic wit, his memoir tells the story of his journey from the iron lung to life in a wheelchair.

Presley is no wheelchair hero, no inspiring figure preaching patience and gratitude. An army brat turned farm kid, newly arrived in a conservative rural community, he was immobilized before he could take the next step toward adulthood. Prevented, literally, from taking that next step, he became cranky and crabby, anxious and alienated, a rolling responsibility crippled not just by polio but by anger and depression, “a crip all over, starting with the brain.” Slowly, however, despite the limitations of navigating in a world before the Americans with Disabilities Act, he builds an independent life.

Now, almost fifty years later, having worn out wheelchair after wheelchair, survived post-polio syndrome, and married the woman of his dreams, Gary has redefined himself as Gimp, more ready to act out than to speak up, ironic, perceptive, still cranky and intolerant but more accepting, more able to find joy in his family and his newfound religion. Despite the fact that he detests pity, can spot condescension from miles away, and refuses to play the role of noble victim, he writes in a way that elicits sympathy and understanding and laughter. By giving his readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable.
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Shaken Brain
The Science, Care, and Treatment of Concussion
Elizabeth Sandel, MD
Harvard University Press, 2020

A physician with thirty-five years of experience treating people with brain injuries shares the latest research on concussions and best practices for care.

The explosion of attention to sports concussions has many of us thinking about the addled brains of our football and hockey heroes. But concussions happen to everyone, not just elite athletes. Children fall from high chairs, drivers and cyclists get into accidents, and workers encounter unexpected obstacles on the job. Concussions are prevalent, occurring even during everyday activities. In fact, in less time than it takes to read this sentence, three Americans will experience a concussion. The global statistics are no less staggering.

Shaken Brain offers expert advice and urgently needed answers. Elizabeth Sandel, MD, is a board-certified physician who has spent more than three decades treating patients with traumatic brain injuries, training clinicians, and conducting research. Here she explains the scientific evidence for what happens to the brain and body after a concussion. And she shares stories from a diverse group of patients, educating readers on prevention, diagnosis, and treatment. Few people understand that what they do in the aftermath of their injury will make a dramatic difference to their future well-being; patient experiences testify to the best practices for concussion sufferers and their caregivers. Dr. Sandel also shows how to evaluate risks before participating in activities and how to use proven safety strategies to mitigate these risks.

Today concussions aren’t just injuries—they’re big news. And, like anything in the news, they’re the subject of much misinformation. Shaken Brain is the resource patients and their families, friends, and caregivers need to understand how concussions occur, what to expect from healthcare providers, and what the long-term consequences may be.

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The Shapes of Memory Loss
Stories, Poems and Essays from the University of Michigan Medical School and Health System
nan Barbas
Michigan Publishing Services, 2013
“Shapes of Memory Loss” is a collection of poetry, fiction, and narrative written by and about people with cognitive impairment or dementia. The authors, all affiliated with the University of Michigan Health System, come forward to share their personal experience as they “navigate this unknown territory”. These pieces offer the reader a view into the often isolated and not fully understood journey that those with memory loss and cognitive impairment are on. The book serves as an educational and support tool for anyone who has been touched by dementia, memory loss, and other related disorders. Healthcare professionals will gain information and insight about these disorders presented from the perspective of patients and families affected by them.
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Social Aspects of Applied Human Genetics
James R. Sorenson
Russell Sage Foundation, 1971
This report explores the complex ethical, political, psychological, and economic questions that arise from developments in medical genetics. It reviews research in applied genetics at the interface of the social and bio-medical fields, including the counseling and study of birth control, as well as the active treatment and selection of individual genetic attributes.
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Stories from the Sandbox
Reflections from children, teens and young adults living with Cancer and Blood Disorders
Jennifer Gretzema
Michigan Publishing Services, 2015
The images and stories in this book were created by patients and families living with Cancer and Blood Disorders. Their expressions, created in the sand and conveyed through the written word, provide insight into what it is like to live with health challenges. Sand tray therapy is a recognized therapeutic modality used with children and adults, providing a sacred space to process experiences using symbols instead of language. Sometimes meaning is further revealed through talking about a sand tray. Other times, it can remain a private expression that holds significance only to its creator. It is a helpful way for youth to process their past and present medical experience, help them set goals, and to teach others about their needs. Sand tray is a window into the thoughts, feelings, and coping styles of youth struggling with illness and hospitalization. Importantly, as youth with chronic medical illnesses often experience pain and discomfort as part of their treatment, the ability to have positive tactile experiences can be a very healing process. This collection of photos and personal stories, facilitated by the Child and Family Life Department, C.S. Mott Children’s Hospital at the University of Michigan, was compiled so that other patients, their families, and their friends can share the authors’ journeys as we all continue to battle these difficult diseases.
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Sugar and Tension
Diabetes and Gender in Modern India
Weaver, Lesley Jo
Rutgers University Press, 2019
Women in North India are socialized to care for others, so what do they do when they get a disease like diabetes that requires intensive self-care? In Sugar and Tension, Lesley Jo Weaver uses women’s experiences with diabetes in New Delhi as a lens to explore how gendered roles and expectations are taking shape in contemporary India. Weaver argues that although women’s domestic care of others may be at odds with the self-care mandates of biomedically-managed diabetes, these roles nevertheless do important cultural work that may buffer women’s mental and physical health by fostering social belonging. Weaver describes how women negotiate the many responsibilities in their lives when chronic disease is at stake. As women weigh their options, the choices they make raise questions about whose priorities should count in domestic, health, and family worlds. The varied experiences of women illustrate that there are many routes to living well or poorly with diabetes, and these are not always the ones canonized in biomedical models of diabetes management.  
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The Summer of Her Baldness
A Cancer Improvisation
By Catherine Lord
University of Texas Press, 2004

"No eyebrows. No eyelashes. When it rains the water will run straight down into my eyes," Catherine Lord wrote before her hair fell out during chemotherapy. Propelled into an involuntary performance piece occasioned by the diagnosis of breast cancer, Lord adopted the online persona of Her Baldness—an irascible, witty, polemical presence who speaks candidly about shame and fear to her listserv audience. While Lord suffers from unwanted isolation and loss of control as her treatment progresses, Her Baldness talks back to the society that stigmatizes bald women, not to mention middle-aged lesbians with a life-threatening disease.

In this irreverent and moving memoir, Lord draws on the e-mail correspondence of Her Baldness to offer an unconventional look at life with breast cancer and the societal space occupied by the seriously ill. She photographs herself and the rooms in which she negotiates her disease. She details the clash of personalities in support groups, her ambivalence about Western medicine, her struggles to maintain her relationship with her partner, and her bemusement when she is mistaken for a "sir." She uses these experiences—common to the one-in-eight women who will be diagnosed at some point with breast cancer—to illuminate larger issues of gender signifiers, sexuality, and the construction of community.

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To Test or Not To Test
A Guide to Genetic Screening and Risk
Zallen, Dorris Teichler
Rutgers University Press, 2008
Tests are a standard part of modern medicine. We willingly screen our blood, urine, vision, and hearing, and submit to a host of other exams with names so complicated that we can only refer to them by their initials: PET, ECG, CT, and MRI. Genetic tests of our risks for disease are the latest trend in medicine, touted as an approach to informed and targeted treatment. They offer hope for some, but also raise medical, ethical, and psychological concerns for many including when genetic information is worth having.

To Test or Not to Test arms readers with questions that should be considered before they pursue genetic screening.

  • Am I at higher risk for a disorder?
  • Can genetic testing give me useful information?
  • Is the timing right for testing?
  • Do the benefits of having the genetic information outweigh the problems that testing can bring?

Determining the answers to these questions is no easy task. In this highly readable book, Doris Teichler Zallen provides a template that can guide individuals and families through the decision-making process and offers additional resources where they can gain more information. She shares interviews with genetic specialists, doctors, and researchers, as well as the personal stories of nearly 100 people who have faced genetic-testing decisions. Her examples focus on genetic testing for four types of illnesses: breast/ovarian cancer (different disorders but closely connected), colon cancer, late-onset Alzheimer's disease, and hereditary hemochromatosis. From the more common diseases to the rare hereditary conditions, we learn what genetic screening is all about and what it can tell us about our risks.

Given that we are now bombarded with ads in magazines and on television hawking the importance of pursuing genetic-testing, it is critical that we approach this tough issue with an arsenal of good information. To Test or Not to Test is an essential consumer tool-kit for the genetic decision-making process.

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Toms River
A Story of Science and Salvation
Dan Fagin
Island Press, 2015
WINNER OF THE PULITZER PRIZE • Winner of The New York Public Library’s Helen Bernstein Book Award
A new classic of science reporting.”—The New York Times


The true story of a small town ravaged by industrial pollution, Toms River won the 2014 Pulitzer Prize and has been hailed by The New York Times as "a new classic of science reporting." Now available in paperback with a new afterword by acclaimed author Dan Fagin, the book masterfully blends hard-hitting investigative journalism, scientific discovery, and unforgettable characters.

One of New Jersey’s seemingly innumerable quiet seaside towns, Toms River became the unlikely setting for a decades-long drama that culminated in 2001 with one of the largest environmental legal settlements in history. For years, large chemical companies had been using Toms River as their private dumping ground, burying tens of thousands of leaky drums in open pits and discharging billions of gallons of acid-laced wastewater into the town’s namesake river. The result was a notorious cluster of childhood cancers scientifically linked to local air and water pollution.

Fagin recounts the sixty-year saga of rampant pollution and inadequate oversight that made Toms River a cautionary tale. He brings to life the pioneering scientists and physicians who first identified pollutants as a cause of cancer and the everyday people in Toms River who struggled for justice: a young boy whose cherubic smile belied the fast-growing tumors that had decimated his body from birth; a nurse who fought to bring the alarming incidence of childhood cancers to the attention of authorities who didn’t want to listen; and a mother whose love for her stricken child transformed her into a tenacious advocate for change.

Rooted in a centuries-old scientific quest, Toms River is an epic of dumpers at midnight and deceptions in broad daylight, of corporate avarice and government neglect, and of a few brave individuals who refused to keep silent until the truth was exposed.
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Unnatural Selection
How We Are Changing Life, Gene by Gene
Emily Monosson
Island Press, 2015
Gonorrhea. Bed bugs. Weeds. Salamanders. People. All are evolving, some surprisingly rapidly, in response to our chemical age. In Unnatural Selection, Emily Monosson shows how our drugs, pesticides, and pollution are exerting intense selection pressure on all manner of species. And we humans might not like the result.

Monosson reveals that the very code of life is more fluid than once imagined. When our powerful chemicals put the pressure on to evolve or die, beneficial traits can sweep rapidly through a population. Species with explosive population growth—the bugs, bacteria, and weeds—tend to thrive, while bigger, slower-to-reproduce creatures, like ourselves, are more likely to succumb.

Monosson explores contemporary evolution in all its guises. She examines the species that we are actively trying to beat back, from agricultural pests to life-threatening bacteria, and those that are collateral damage—creatures struggling to adapt to a polluted world. Monosson also presents cutting-edge science on gene expression, showing how environmental stressors are leaving their mark on plants, animals, and possibly humans for generations to come. 

Unnatural Selection is eye-opening and more than a little disquieting. But it also suggests how we might lessen our impact: manage pests without creating super bugs; protect individuals from disease without inviting epidemics; and benefit from technology without threatening the health of our children.
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Unstable Frontiers
Technomedicine and the Cultural Politics of “Curing” AIDS
John Nguyet Erni
University of Minnesota Press, 1994

Unstable Frontiers was first published in 1994. Minnesota Archive Editions uses digital technology to make long-unavailable books once again accessible, and are published unaltered from the original University of Minnesota Press editions.

"John Erni's heartfelt and insightful book is a valuable contribution to the study of the cultural politics of AIDS."–Jeff Nunokawa Princeton University

The "cure" for AIDS: The search goes on, keeping pace with our belief that AIDS is incurable. How such a seeming paradox works-and how it may well work against the proper treatment of the disease-is the subject of Unstable Frontiers, a probing, critical look at the cultural politics behind the quest for a cure for AIDS.

This massive commercial and scientific project, John Erni suggests, actually hinges on our contradictory definitions of the disease as curable and incurable at the same time. Drawing on diverse sources, from popular media to medical literature to cultural theory, he shows how the dual discourse of curability/incurability frames the way we think about and act on issues of medical treatment for AIDS. His work makes a major advance in our understanding of—and, perhaps, humane response to—a national crisis.

In his critique of the logic and fantasies underlying the double definition of AIDS, Erni explores a broad range of issues: the scientific paradigm used to develop AZT; the politics of alternative treatment practices, of clinical drug trials, and of AIDS activism; and the notions of time and temporality operating in AIDS treatment science. He also addresses the problematic popular themes, such as "AIDS is invariably fatal" and "Knowledge = Cure."

Unique in its approach to a social and political issue still in the making, the book reveals how AIDS has challenged technomedicine's historical position of authority-and in doing so, recasts this challenge in a powerful and ultimately hopeful way.

John Nguyet Erni is assistant professor of communication at the University of New Hampshire. He has published essays on AIDS and is currently working on a book about AIDS in Thailand.

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Victory Deferred
How AIDS Changed Gay Life in America
John-Manuel Andriote
University of Chicago Press, 1999
There is no question that AIDS has been, and continues to be, one of the most destructive diseases of the century, taking thousands of lives, devastating communities, and exposing prejudice and bigotry. But AIDS has also been a disease of transformation—it has fueled the national gay civil rights movement, altered medical research and federal drug testing, shaken up both federal and local politics, and inspired a vast cultural outpouring. Victory Deferred, the most comprehensive account of the epidemic in more than ten years, is the history of both the destruction and transformation wrought by AIDS.

John-Manuel Andriote chronicles the impact of the disease from the coming-out revelry of the 1970s to the post-AIDS gay community of the 1990s, showing how it has changed both individual lives and national organizations. He tells the truly remarkable story of how a health crisis pushed a disjointed jumble of local activists to become a nationally visible and politically powerful civil rights movement, a full-fledged minority group challenging the authority of some of the nation's most powerful institutions. Based on hundreds of interviews with those at the forefront of the medical, political, and cultural
responses to the disease, Victory Deferred artfully blends personal narratives with institutional histories and organizational politics to show how AIDS forced gay men from their closets and ghettos into the hallways of power to lobby and into the streets to protest.

Andriote, who has been at the center of national advocacy and AIDS politics in Washington, is judicious without being uncritical, and his account of the political maturation of the gay community is one of the most stirring civil rights stories of our time.

Victory Deferred draws on hundreds of original interviews, including first-hand accounts from: Virginia Apuzzo, Reverend Carl Bean, Marcus Conant, M.D., John D'Emilio, Anthony Fauci, M.D, Fenton Johnson, Larry Kramer, Lawrence D. Mass, M.D., Armistead Maupin, Walt Odets, Torie Osborn, Eric Rofes, Urvashi Vaid, Timothy Westmoreland, and Reggie Williams.

"[Victory Deferred] is a richly textured account of the rise of the AIDS sector, that though detailed and comprehensive, reads quickly. The thematic organization of the book works especially well. The clear chronology of the events reveals how competing models of service delivery, treatment activism and private-public cooperation were subsumed into a national AIDS movement. The book should prove excellent for teaching or recreational reading."—Jose Gabilondo, Washington Post

"[A] fine history of the epidemic. . . . Andriote shines with chapters on less-covered but no less important subjects, including the multibillion-dollar 'AIDS industry' and private fund-raising groups. He brings together in one place many facts and figures heretofore unsynthesized."—Joe R. Neel, Boston Globe

"While many books have explored aspects of the impact of AIDS, Victory Deferred is among the most comprehensive. Andriote's adroit integration of the personal and the historical results is an illustrative, analytical account of the disease and its impact on the gay civil-rights movement. His depiction of the poignant struggles, heroic responses and resultant social and political gains emanating from AIDS is a perceptive document for our time—relevant to all readers, regardless of their sexual orientation."—John R. Killacky, Minneapolis Star Tribune

"[A] well-researched and nuanced portrait of the many lives on which this grave disease has wrought both destruction and transformation."—Publishers Weekly

"Andriote combines broad strokes and telling details in this engaging history of the complicated war against both disease and bigotry."—Library Journal
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Waiting for Cancer to Come
Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer
Sharlene Hesse-Biber
University of Michigan Press, 2014

Waiting for Cancer to Come tells the stories of women who are struggling with their high risk for cancer. Based on interviews and surveys of dozens of women, this book pieces together the diverse yet interlocking experiences of women who have tested positive for the BRCA 1/2 gene mutations, which indicate a higher risk of developing breast and ovarian cancer. Sharlene Hesse-Biber brings these narratives to light and follows women’s journeys from deciding to get screened for BRCA, to learning the test has come back positive, to dealing with their risk. Many women already know the challenges of a family history riddled with cancer and now find themselves with the devastating knowledge of their own genetic risk. Using the voices of the women themselves to describe the under-explored BRCA experience, Waiting for Cancer to Come looks at the varied emotional, social, economic, and psychological factors at play in women’s decisions about testing and cancer prevention.

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We Are Having This Conversation Now
The Times of AIDS Cultural Production
Alexandra Juhasz and Theodore Kerr
Duke University Press, 2022
We Are Having This Conversation Now offers a history, present, and future of AIDS through thirteen short conversations between Alexandra Juhasz and Theodore Kerr, scholars deeply embedded in HIV responses. They establish multiple timelines of the epidemic, offering six foundational periodizations of AIDS culture, tracing how attention to the crisis has waxed and waned from the 1980s to the present. They begin the book with a 1990 educational video produced by a Black health collective, using it to consider organizing intersectionally, theories of videotape, empowerment movements, and memorialization. This video is one of many powerful yet overlooked objects that the pair focus on through conversation to understand HIV across time. Along the way, they share their own artwork, activism, and stories of the epidemic. Their conversations illuminate the vital role personal experience, community, cultural production, and connection play in the creation of AIDS-related knowledge, archives, and social change. Throughout, Juhasz and Kerr invite readers to reflect and find ways to engage in their own AIDS-related culture and conversation.
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Wet Earth and Dreams
A Narrative of Grief and Recovery
Jane Lazarre
Duke University Press, 1998
“In the spring of 1995, the condition I seem to have been waiting for all my life finally struck me.” So begins Jane Lazarre’s account of her transforming battle with breast cancer. Following in the tradition of her critically acclaimed literary memoirs The Mother Knot and Beyond the Whiteness of Whiteness: Memoir of a White Mother of Black Sons, Lazarre brilliantly interweaves her experience of life-threatening illness with other stories of recent and past losses—most notably, that of her mother to breast cancer when Jane was a small child. From these memories and experiences, Lazarre crafts a story that is at once intensely intimate and universally healing.

As she contends with the pain and many indignities of her treatment for cancer, Lazarre realizes that successful medical treatment will only be part of her healing process. Her own illness becomes the vehicle for coming to terms with key moments of loss and grief—the death of a beloved therapist from breast cancer, her brother-in-law’s death from AIDS, a traumatic disappointment in her work life, and the unresolved pain of being a motherless child. The gift of Lazarre’s writing is her ability to transform her narratives of grief and loss into a story whose power to heal lies in its ability to penetrate the unconscious and give voice to the elusive truths hidden there. Through her writing, Lazarre is able to embrace grief—even her own inarticulate grief as a child—and find her way through the story to a restored sense of wholeness.

In Wet Earth and Dreams Jane Lazarre once again proves herself to be both companion and guide through some of the most difficult challenges life has to offer. As always, she draws strength not only from sustaining friendship and love, but also from her own faith in the power of storytelling to make bearable the seemingly unbearable. Lazarre’s bravely and beautifully written account of grief, illness, and death is at the last a celebration of the redemptive possibilities of the creative spirit.

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Wet Engine
Exploring the Mad Wild Miracle of the Heart
Brian Doyle
Oregon State University Press, 2012

In this poignant and startlingly original book, Brian Doyle examines the heart as a physical organ—how it is supposed to work, how surgeons try to fix it when it doesn’t—and as a metaphor: the seat of the soul, the power house of the body, the essence of spirituality. In a series of profoundly moving ruminations, Doyle considers the scientific, emotional, literary, philosophical, and spiritual understandings of the heart—from cardiology to courage, from love letters and pop songs to Jesus. Weaving these strands together is the torment of Doyle’s own infant son’s heart surgery and the inspiring story of the young heart doctor who saved Liam’s life.

The Wet Engine is a book that will change how you feel and think about the mysterious, fragile human heart. This new paperback edition includes a foreword by Dr. Marla Salmon, dean of the University of Washington School of Nursing.

 

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The White Plague
Tuberculosis, Man and Society
Dubos, Jean
Rutgers University Press, 1987

In The White Plague, René and Jean Dubos argue that the great increase of tuberculosis was intimately connected with the rise of an industrial, urbanized society and—a much more controversial idea when this book first appeared forty years ago—that the progress of medical science had very little to do with the marked decline in tuberculosis in the twentieth century.

The White Plague has long been regarded as a classic in the social and environmental history of disease. This reprint of the 1952 edition features new introductory writings by two distinguished practitioners of the sociology and history of medicine. David Mechanic's foreword describes the personal and intellectual experience that shaped René Dubos's view of tuberculosis. Barbara Gutmann Rosenkrantz's historical introduction reexamines The White Plague in light of recent work on the social history of tuberculosis. Her thought-provoking essay pays particular attention to the broader cultural and medical assumptions about sickness and sick people that inform a society’s approach to the conquest of disease.

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Whitewash
The Story of a Weed Killer, Cancer, and the Corruption of Science
Carey Gillam
Island Press, 2019
Rachel Carson Environment Book Award, First Place (2018)

IPPY Outstanding Book of the Year: Most Likely to Save the Planet (2018)

Thorpe Menn Literary Excellence Award (2018)

"Reads like a mystery novel as Gillam skillfully uncovers Monsanto's secretive strategies." —Erin Brockovich

"A damning picture...Gillam expertly covers a contentious front." —Publishers Weekly


"A must-read." —Booklist

"Hard-hitting, eye-opening narrative." —Kirkus

It's the pesticide on our dinner plates, a chemical so pervasive it’s in the air we breathe, our water, our soil, and even found increasingly in our own bodies. Known as Monsanto's Roundup by consumers, and as glyphosate by scientists, the world's most popular weed killer is used everywhere from backyard gardens to golf courses to millions of acres of farmland. For decades it's been touted as safe enough to drink, but a growing body of evidence indicates just the opposite, with research tying the chemical to cancers and a host of other health threats.     

In Whitewash, veteran journalist Carey Gillam uncovers one of the most controversial stories in the history of food and agriculture, exposing new evidence of corporate influence. Gillam introduces readers to farm families devastated by cancers which they believe are caused by the chemical, and to scientists whose reputations have been smeared for publishing research that contradicted business interests. Readers learn about the arm twisting of regulators who signed off on the chemical, echoing company assurances of safety even as they permitted higher residues of the pesticide in food and skipped compliance tests. And, in startling detail, Gillam reveals secret industry communications that pull back the curtain on corporate efforts to manipulate public perception.
  
Whitewash is more than an exposé about the hazards of one chemical or even the influence of one company. It's a story of power, politics, and the deadly consequences of putting corporate interests ahead of public safety.
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The Wounded Storyteller
Body, Illness, and Ethics
Arthur W. Frank
University of Chicago Press, 1995
In At the Will of the Body, Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait.

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

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

Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new.
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The Wounded Storyteller
Body, Illness, and Ethics, Second Edition
Arthur W. Frank
University of Chicago Press, 1997
Since it was first published in 1995, The Wounded Storyteller has occupied a unique place in the body of work on illness. Both the collective portrait of a so-called “remission society” of those who suffer from some type of illness or disability and a cogent analysis of their stories within a larger framework of narrative theory, Arthur W. Frank’s book has reached a large and diverse readership including the ill, medical professionals, and scholars of literary theory.

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

In this new edition Frank adds a preface describing the personal and cultural times when the first edition was written. His new afterword extends the book’s argument significantly, writing about storytelling and experience, other modes of illness narration, and a version of hope that is both realistic and aspirational. Reflecting on both his own life during the creation of the first edition and the conclusions of the book itself, Frank reminds us of the power of storytelling as way to understanding our own suffering.
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