Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine


Michele Lent Hirsch - 2018
    She did.Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.Author Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell.Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system--a system where young women, especially women of color and trans women, are invisible.And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

Ten Days in a Mad-House


Nellie Bly - 1887
    In 1887, 23-year-old reporter Nellie Bly had herself committed to a New York City asylum for 10 days to expose the horrific conditions for 19th-century century mental patients.

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers


Toni Bernhard - 2010
    And it can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or even a life-threatening illness.The author, who became ill while a university law professor in the prime of her career, tells the reader how she got sick and, to her and her partner's bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms. She had to learn ways to make "being sick" the heart of her spiritual practice and, through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. Whether we ourselves are sick now or not, we can learn these vital arts of living well from How to Be Sick.

The Lives They Left Behind: Suitcases from a State Hospital Attic


Darby Penney - 2008
     It is a remarkable portrait, too, of the life of a psychiatric asylum--the sort of community in which, for better and for worse, hundreds of thousands of people lived out their lives.More than four hundred abandoned suitcases filled with patients’ belongings were found when Willard Psychiatric Center closed in 1995 after 125 years of operation. They are skillfully examined here and compared to the written record to create a moving—and devastating—group portrait of twentieth-century American psychiatric care.

Knocking on Heaven's Door: The Path to a Better Way of Death


Katy Butler - 2013
    It will inspire the necessary and difficult conversations we all need to have with loved ones as it illuminates a path to a better way of death.Like so many of us, award-winning writer Katy Butler always assumed her aging parents would experience healthy, active retire­ments before dying peacefully at home. Then her father suffered a stroke that left him incapable of easily finishing a sentence or showering without assistance. Her mother was thrust into full-time caregiving, and Katy became one of the 24 mil­lion Americans who help care for aging parents. In an effort to correct a minor and non–life threatening heart arrhythmia, doctors outfitted her father with a pacemaker. The device kept his heart beating but did nothing to prevent his slide into dementia, incontinence, near-muteness, and misery. After several years, he asked his wife for help, telling her, "I am living too long." Mother and daughter faced a series of wrench­ing moral questions: When does death cease being a curse and become a blessing? Where is the line between saving life and prolonging a dying? When is the right time to say to a doctor, "Let my loved one go"? When doctors refused to disable the pace­maker, sentencing her father to a protracted and agonizing death, Katy set out to understand why. Her quest had barely begun when her mother faced her own illness, rebelled against her doctors, refused open-heart surgery, and instead met death head-on. Knocking on Heaven's Door, a revolution­ary blend of memoir and investigative reporting, is the fruit of the Butler family's journey. With a reporter's skill, a poet's eye, and a daughter's love, Butler explores what happens when our terror of death collides with the tech­nological imperatives of modern medicine. Her provocative thesis is that advanced medicine, in its single-minded pursuit of maximum longevity, often creates more suffering than it prevents. Butler lays bare the tangled web of technology, medicine, and commerce that modern dying has become and chronicles the rise of Slow Medicine - a growing movement that promotes care over cure. Knocking on Heaven's Door is a visionary map through the labyrinth of a broken and morally adrift medical system. It will inspire the necessary and difficult conversations we all need to have with loved ones as it illuminates a path to a better way of death.

Carly's Voice: Breaking Through Autism


Arthur Fleischmann - 2012
    Doctors predicted that she would never intellectually develop beyond the abilities of a small child. Although she made some progress after years of intensive behavioral and communication therapy, Carly remained largely unreachable. Then, at the age of ten, she had a breakthrough. While working with her devoted therapists Howie and Barb, Carly reached over to their laptop and typed in "HELP TEETH HURT," much to everyone's astonishment. This was the beginning of Carly's journey toward self-realization. Although Carly still struggles with all the symptoms of autism, which she describes with uncanny accuracy and detail, she now has regular, witty, and profound conversations on the computer with her family, her therapists, and the many thousands of people who follow her via her blog, Facebook, and Twitter. In Carly's Voice, her father, Arthur Fleischmann, blends Carly's own words with his story of getting to know his remarkable daughter. One of the first books to explore firsthand the challenges of living with autism, it brings readers inside a once-secret world and in the company of an inspiring young woman who has found her voice and her mission.

Why We Swim


Bonnie Tsui - 2020
      We swim in freezing Arctic waters and piranha-infested rivers to test our limits. We swim for pleasure, for exercise, for healing. But humans, unlike other animals that are drawn to water, are not natural-born swimmers. We must be taught. Our evolutionary ancestors learned for survival; now, in the twenty-first century, swimming is one of the most popular activities in the world.Why We Swim is propelled by stories of Olympic champions, a Baghdad swim club that meets in Saddam Hussein’s palace pool, modern-day Japanese samurai swimmers, and even an Icelandic fisherman who improbably survives a wintry six-hour swim after a shipwreck. New York Times contributor Bonnie Tsui, a swimmer herself, dives into the deep, from the San Francisco Bay to the South China Sea, investigating what about water—despite its dangers—seduces us and why we come back to it again and again.

The Shapeless Unease: A Year of Not Sleeping


Samantha Harvey - 2020
    She tried everything to appease her wakefulness: from medication to therapy, changes in her diet to changes in her living arrangements. Nothing seemed to help.The Shapeless Unease is Harvey's darkly funny and deeply intelligent anatomy of her insomnia, an immersive interior monologue of a year without one of the most basic human needs. Original and profound, and narrated with a lucid breathlessness, this is a startlingly insightful exploration of memory, writing and influence, death and the will to survive, from "this generation's Virginia Woolf" (Telegraph).

Sick: A Memoir


Porochista Khakpour - 2018
    For most of that time, she didn't know why. All of her trips to the ER and her daily anguish, pain, and lethargy only ever resulted in one question: How could any one person be this sick? Several drug addictions, three major hospitalizations, and over $100,000 later, she finally had a diagnosis: late-stage Lyme disease. Sick is Khakpour's arduous, emotional journey—as a woman, a writer, and a lifelong sufferer of undiagnosed health problems—through the chronic illness that perpetually left her a victim of anxiety, living a life stymied by an unknown condition.Divided by settings, Khakpour guides the reader through her illness by way of the locations that changed her course—New York, LA, New Mexico, and Germany—as she meditates on both the physical and psychological impacts of uncertainty, and the eventual challenge of accepting the diagnosis she had searched for over the course of her adult life. With candor and grace, she examines her subsequent struggles with mental illness, her addiction to the benzodiazepines prescribed by her psychiatrists, and her ever-deteriorating physical health. A story about survival, pain, and transformation, Sick is a candid, illuminating narrative of hope and uncertainty, boldly examining the deep impact of illness on one woman's life.

The Horse Boy: A Father's Quest to Heal His Son


Rupert Isaacson - 2009
    But when Isaacson, a lifelong horseman, rode their neighbor's horse with Rowan, Rowan improved immeasurably. He was struck with a crazy idea: why not take Rowan to Mongolia, the one place in the world where horses and shamanic healing intersected? THE HORSE BOY is the dramatic and heartwarming story of that impossible adventure. In Mongolia, the family found undreamed of landscapes and people, unbearable setbacks, and advances beyond their wildest dreams. This is a deeply moving, truly one-of-a-kind story--of a family willing to go to the ends of the earth to help their son, and of a boy learning to connect with the world for the first time.

A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction


Patrick J. Kennedy - 2015
    Kennedy, the former congressman and youngest child of Senator Ted Kennedy, details his personal and political battle with mental illness and addiction, exploring mental health care's history in the country alongside his and every family's private struggles.On May 5, 2006, the New York Times ran two stories, “Patrick Kennedy Crashes Car into Capitol Barrier” and then, several hours later, “Patrick Kennedy Says He'll Seek Help for Addiction.” It was the first time that the popular Rhode Island congressman had publicly disclosed his addiction to prescription painkillers, the true extent of his struggle with bipolar disorder and his plan to immediately seek treatment. That could have been the end of his career, but instead it was the beginning. Since then, Kennedy has become the nation’s leading advocate for mental health and substance abuse care, research and policy both in and out of Congress. And ever since passing the landmark Mental Health Parity and Addiction Equity Act--and after the death of his father, leaving Congress--he has been changing the dialogue that surrounds all brain diseases.A Common Struggle weaves together Kennedy's private and professional narratives, echoing Kennedy's philosophy that for him, the personal is political and the political personal. Focusing on the years from his 'coming out' about suffering from bipolar disorder and addiction to the present day, the book examines Kennedy's journey toward recovery and reflects on Americans' propensity to treat mental illnesses as "family secrets."Beyond his own story, though, Kennedy creates a roadmap for equality in the mental health community, and outlines a bold plan for the future of mental health policy. Written with award-winning healthcare journalist and best-selling author Stephen Fried, A Common Struggle is both a cry for empathy and a call to action.

Patient H.M.: A Story of Memory, Madness, and Family Secrets


Luke Dittrich - 2016
    These “psychosurgeons,” as they called themselves, occupied a gray zone between medical research and medical practice, and ended up subjecting untold numbers of people to the types of surgical experiments once limited to chimpanzees.The most important test subject to emerge from this largely untold chapter in American history was a twenty-seven-year-old factory worker named Henry Molaison. In 1953, Henry—who suffered from severe epilepsy—received a radical new version of the lobotomy, one that targeted the most mysterious structures in the brain. The operation failed to eliminate Henry’s seizures, but it did have an unintended effect: Henry left the operating room profoundly amnesic, unable to create new long-term memories. Over the next sixty years, Patient H.M., as Henry was known, became the most studied individual in the history of neuroscience, a human guinea pig who would teach us much of what we know about memory today.Luke Dittrich uses the case of Patient H.M. as a starting point for a kaleidoscopic journey, one that moves from the first recorded brain surgeries in ancient Egypt to the cutting-edge laboratories of MIT. He takes readers inside the old asylums and operating theaters where psychosurgeons conducted their human experiments, and behind the scenes of a bitter custody battle over the ownership of the most important brain in the world. Throughout, Dittrich delves into the enduring mysteries of the mind while exposing troubling stories of just how far we’ve gone in our pursuit of knowledge. It is also, at times, a deeply personal journey. Dittrich’s grandfather was the brilliant, morally complex surgeon who operated on Molaison—and thousands of other patients. The author’s investigation into the dark roots of modern memory science ultimately forces him to confront unsettling secrets in his own family history, and to reveal the tragedy that fueled his grandfather’s relentless experimentation—experimentation that would revolutionize our understanding of ourselves.Patient H.M. combines the best of biography, memoir, and science journalism to create a haunting, endlessly fascinating story, one that reveals the wondrous and devastating things that can happen when hubris, ambition, and human imperfection collide.

Sickened: The Memoir of a Munchausen by Proxy Childhood


Julie Gregory - 2003
    Just twelve, she’s tall, skinny, and weak. It’s four o’clock, and she hasn’t been allowed to eat anything all day. Her mother, on the other hand, seems curiously excited. She's about to suggest open-heart surgery on her child to "get to the bottom of this." She checks her teeth for lipstick and, as the doctor enters, shoots the girl a warning glance. This child will not ruin her plans.SickenedFrom early childhood, Julie Gregory was continually X-rayed, medicated, and operated on—in the vain pursuit of an illness that was created in her mother’s mind. Munchausen by proxy (MBP) is the world’s most hidden and dangerous form of child abuse, in which the caretaker—almost always the mother—invents or induces symptoms in her child because she craves the attention of medical professionals. Many MBP children die, but Julie Gregory not only survived, she escaped the powerful orbit of her mother's madness and rebuilt her identity as a vibrant, healthy young woman.Sickened is a remarkable memoir that speaks in an original and distinctive Midwestern voice, rising to indelible scenes in prose of scathing beauty and fierce humor. Punctuated with Julie's actual medical records, it re-creates the bizarre cocoon of her family's isolated double-wide trailer, their wild shopping sprees and gun-waving confrontations, the astonishing naïveté of medical professionals and social workers. It also exposes the twisted bonds of terror and love that roped Julie's family together—including the love that made a child willing to sacrifice herself to win her mother's happiness. The realization that the sickness lay in her mother, not in herself, would not come to Julie until adulthood. But when it did, it would strike like lightning. Through her painful metamorphosis, she discovered the courage to save her own life—and, ultimately, the life of the girl her mother had found to replace her. Sickened takes us to new places in the human heart and spirit. It is an unforgettable story, unforgettably told.

Salt in My Soul: An Unfinished Life


Mallory Smith - 2019
    Despite the daily challenges of endless medical treatments and a deep understanding that she'd never lead a normal life, Mallory was determined to "live happy," a mantra she followed until her death. Mallory worked hard to make the most out of the limited time she had, graduating Phi Beta Kappa from Stanford University, becoming a cystic fibrosis advocate well-known in the CF community, and embarking on a career as a professional writer. Along the way, she cultivated countless intimate friendships and ultimately found love.An eloquent writer, Mallory recorded her thoughts and observations for more than ten years about struggles and feelings too personal to share during her life, leaving instructions for her mother to publish her work posthumously. She hoped that her writing would offer insight to those living with, or loving someone with, chronic illness.What emerges is a powerful and inspiring portrait of a brave young woman who did not allow herself to be defined by disease. Her words offer comfort and hope to readers, even as she herself was facing death. Salt in My Soul is a beautifully crafted, intimate, and poignant tribute to a short life well lived--and a call for all of us to embrace our own lives as fully as possible.

The Prison Doctor


Amanda Brown - 2019
    From miraculous pregnancies to dirty protests, and from violent attacks on prisoners to heartbreaking acts of self-harm, she has witnessed it all. In this memoir, Amanda reveals the stories, the patients and the cases that have shaped a career helping those most of us would rather forget.