BiblioVault - Books about Diseases & Conditions

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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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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Illness Is a Weapon

Indigenous Identity and Enduring Afflictions

Eirik Saethre

Vanderbilt University Press, 2013

Illness Is a Weapon presents an engaging portrayal of the everyday experience of disease in a remote Australian Aboriginal community. While chronic Aboriginal ill health has become an important national issue in Australia, Saethre breaks new ground by locating sickness within the daily lives of Indigenous people. Drawing on more than a decade of ethnographic research in the Northern Territory, Saethre explores the factors structuring ill health, the tactics individuals use to negotiate these realities, and the ways in which disease and medical narratives are employed to construct, manage, and challenge social relations. Reframing current debates, this book argues that disease and suffering have become powerful expressions of Indigenous identity. Through dialogues and interactions, Aboriginal and non-Aboriginal people engage in a reciprocal discussion about the past, present, and future of indigeneity.

Rarely is disease and suffering understood as a form of protest, and in Illness Is a Weapon, Saethre confronts the stark reality of the current contest between all parties in this struggle. As Saethre explains, "Cursing at nurses, refusing to take medication, and accepting acute illness as unremarkable is simultaneously an act of defiance and a rejection of vulnerability."

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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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In Contagion's Wake

Black Writers and the Development of Modern Outbreak Narratives

Kelly L. Bezio

University of Massachusetts Press, 2026

An examination of early American literature that highlights how racial divides exacerbated—and were exacerbated by—the spread of infection

In April of 1721, the HMS Seahorse arrived in Boston from the West Indies, causing a smallpox epidemic that would plague the city for the next year. Of its 12,000 inhabitants, nearly fifty percent were infected, and 900 people died. Like the coronavirus pandemic that began in 2020, the outbreak also brought to the surface deep divides in the social fabric of colonial New England and laid the groundwork for racialized political inequities that we continue to grapple with today.

In Contagion’s Wake examines a range of American outbreak narratives, both historical and fictional, written between the early 1700s and the early 1900s—from the rise of inoculation through the advent of germ theory. Author Kelly L. Bezio argues that during this period, literature about communicable disease was dominated by white authors, such as Cotton Mather and Edgar Allen Poe, who tended to privilege white suffering and survival while obscuring Black suffering and vulnerability. Black authors, however, such as Olaudah Equiano and Frances E.W. Harper, developed variations on plot structures, metaphors, and imagery that drew upon contagion to represent racial injustice and further the cause of Black liberation.

The diverse texts Bezio analyzes vary extensively in genre and geographical location, and in the illnesses that feature in their pages. Significant disorders from the era, including yellow fever, smallpox, consumption, and cholera, make frequent appearances, as do less culturally dominant diseases such as St. Anthony’s Fire. In Contagion’s Wake contends that representations of communicable disease should not be understood only as within their own historical moment; rather, they function more like a DNA code for our present time.

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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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