What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt


Tessa Miller - 2021
    At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a yearslong nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better.Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications.Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.

The Body in Pain: The Making and Unmaking of the World


Elaine Scarry - 1985
    The book is an analysis of physical suffering and its relation to the numerous vocabularies and cultural forces--literary, political, philosophical, medical, religious--that confront it. Elaine Scarry bases her study on a wide range of sources: literature and art, medical case histories, documents on torture compiled by Amnesty International, legal transcripts of personal injury trials, and military and strategic writings by such figures as Clausewitz, Churchill, Liddell Hart, and Kissinger, She weaves these into her discussion with an eloquence, humanity, and insight that recall the writings of Hannah Arendt and Jean-Paul Sartre. Scarry begins with the fact of pain's inexpressibility. Not only is physical pain enormously difficult to describe in words--confronted with it, Virginia Woolf once noted, "language runs dry"--it also actively destroys language, reducing sufferers in the most extreme instances to an inarticulate state of cries and moans. Scarry analyzes the political ramifications of deliberately inflicted pain, specifically in the cases of torture and warfare, and shows how to be fictive. From these actions of "unmaking" Scarry turns finally to the actions of "making"--the examples of artistic and cultural creation that work against pain and the debased uses that are made of it. Challenging and inventive, The Body in Pain is landmark work that promises to spark widespread debate.

Raising Henry: A Memoir of Motherhood, Disability, and Discovery


Rachel Adams - 2013
    She had an adoring husband, a beautiful two-year-old son, a sunny Manhattan apartment, and a position as a tenured professor at Columbia University. Everything changed with the birth of her second child, Henry. Just minutes after he was born, doctors told her that Henry had Down syndrome, and she knew that her life would never be the same. In this honest, self-critical, and surprisingly funny book, Adams chronicles the first three years of Henry’s life and her own transformative experience of unexpectedly becoming the mother of a disabled child. A highly personal story of one family’s encounter with disability, Raising Henry is also an insightful exploration of today’s knotty terrain of social prejudice, disability policy, genetics, prenatal testing, medical training, and inclusive education. Adams untangles the contradictions of living in a society that is more enlightened and supportive of people with disabilities than ever before, yet is racing to perfect prenatal tests to prevent children like Henry from being born. Her book is gripping, beautifully written, and nearly impossible to put down. Once read, her family’s story is impossible to forget.

Pain and Prejudice: A Call to Arms for Women and Their Bodies


Gabrielle Jackson - 2019
    And many are so, so tired … But women's pain is all too often dismissed, their illnesses misdiagnosed or ignored. In medicine, man is the default human being. Any deviation is atypical, abnormal, deficient.'Fourteen years after being diagnosed with endometriosis, Gabrielle Jackson couldn't believe how little had changed in the treatment and knowledge of the disease. In 2015, her personal story kick-started a worldwide investigation into the disease by The Guardian; thousands of women got in touch to tell their own stories and many more read and shared the material. What began as one issue led Jackson to explore how women - historically and through to the present day - are under-served by the systems that should keep them happy, healthy and informed about their bodies.Pain and Prejudice is a vital testament to how social taboos and medical ignorance keep women sick and in anguish. The stark reality is that women's pain is not taken as seriously as men's. Women are more likely to be disbelieved and denied treatment than men, even though women are far more likely to be suffering from chronic pain.In a potent blend of personal memoir and polemic, Jackson confronts the private concerns and questions women face regarding their health and medical treatment. Pain and Prejudice, finally, explains how we got here, and where we need to go next.

Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties


Laurie Edwards - 2008
    Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived--they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness.Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals.Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.

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.

Era of Ignition: Coming of Age in a Time of Rage and Revolution


Amber Tamblyn - 2019
    Through her fierce op-eds in media outlets such as the New York Times, Glamour, and Hollywood Reporter and her work as a founder of the Time’s Up organization, Tamblyn has tackled subjects including discrimination, sexual assault, reproductive rights, and pay parity, among others.Now, Tamblyn examines the very paradigm our society is built on, pulling at the threads of the ingrained patriarchal and misogynistic fabric. Tamblyn presents her insightful and pointed take on the current state of feminism and expertly weaves together her own experiences and opinions with the larger movement. In her late twenties and early thirties, Tamblyn experienced a crisis of character and a gradual awakening–her own era of ignition–that enabled her to take back the power in her own life and find her own voice as a bold, outspoken, and respected advocate for women’s rights. Using the same galvanizing voice that helped her recent op-eds go viral, Tamblyn delivers an incisive call-to-arms that will capture the heart of the movement as it educates and inspires readers.

Disability Visibility: First-Person Stories from the Twenty-first Century


Alice WongChristie Thompson - 2020
    Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.

The Two Kinds of Decay


Sarah Manguso - 2008
    In this captivating story, Manguso recalls her struggle: arduous blood cleansings, collapsed veins, multiple chest catheters, depression, the deaths of friends and strangers, addiction, and, worst of all for a writer, the trite metaphors that accompany prolonged illness. A book of tremendous grace, The Two Kinds of Decay transcends the very notion of what an illness story can and should be.

The Collected Schizophrenias: Essays


Esmé Weijun Wang - 2019
    Schizophrenia is not a single unifying diagnosis, and Esme Weijun Wang writes not just to her fellow members of the "collected schizophrenias" but to those who wish to understand it as well. Opening with the journey toward her diagnosis of schizoaffective disorder, Wang discusses the medical community's own disagreement about labels and procedures for diagnosing those with mental illness, and then follows an arc that examines the manifestations of schizophrenia in her life. In essays that range from using fashion to present as high-functioning to the depths of a rare form of psychosis, and from the failures of the higher education system and the dangers of institutionalisation to the complexity of compounding factors such as PTSD and Lyme disease, Wang's analytical eye, honed as a former lab researcher at Stanford, allows her to balance research with personal narrative. An essay collection of undeniable power, The Collected Schizophrenias dispels misconceptions and provides insight into a condition long misunderstood.

This Is Your Mind on Plants


Michael Pollan - 2021
    Exploring and participating in the cultures that have grown up around these drugs while consuming (or, in the case of caffeine, trying not to consume) them, Pollan reckons with the powerful human attraction to psychoactive plants. Why do we go to such great lengths to seek these shifts in consciousness, and then why do we fence that universal desire with laws and customs and fraught feelings?

High Price: A Neuroscientist's Journey of Self-Discovery That Challenges Everything You Know About Drugs and Society


Carl L. Hart - 2013
    At the same time, he was immersed in street life. Today he is a cutting-edge neuroscientist—Columbia University's first tenured African American professor in the sciences—whose landmark, controversial research is redefining our understanding of addiction.In this provocative and eye-opening memoir, he recalls his journey of self-discovery and weaves his past and present. Hart goes beyond the hype of the antidrug movement as he examines the relationship among drugs, pleasure, choice, and motivation, both in the brain and in society. His findings shed new light on common ideas about race, poverty, and drugs, and explain why current policies are failing.Though Hart escaped neighborhoods that were dominated by entrenched poverty and the knot of problems associated with it, he has not turned his back on his roots. Determined to make a difference, he tirelessly applies his scientific research to help save real lives. But balancing his former street life with his achievements today has not been easy—a struggle he reflects on publicly for the first time.A powerful story of hope and change, of a scientist who has dedicated his life to helping others, High Price will alter the way we think about poverty, race, and addiction—and how we can effect change.

The Unfit Heiress: The Tragic Life and Scandalous Sterilization of Ann Cooper Hewitt


Audrey Clare Farley - 2021
    This alarmed authorities, who feared certain "over-sexed" women could destroy civilization if allowed to reproduce and pass on their defects. Set against this backdrop, The Unfit Heiress chronicles the fight for inheritance, both genetic and monetary, between Ann Cooper Hewitt and her mother Maryon.In 1934, aided by a California eugenics law, the socialite Maryon Cooper Hewitt had her "promiscuous" daughter declared feebleminded and sterilized without her knowledge. She did this to deprive Ann of millions of dollars from her father's estate, which contained a child-bearing stipulation. When a sensational court case ensued, the American public was captivated. So were eugenicists, who saw an opportunity to restrict reproductive rights in America for decades to come.

Burn It Down: Women Writing about Anger


Lilly DancygerMelissa Febos - 2019
    But all rage isn't created equal. Who gets to be angry? (If there's now space for cis white women's anger, what about black women? Trans women?) How do women express their anger? And what will they do with it-individually and collectively? In Burn It Down, a diverse group of women authors explore their rage-from the personal to the systemic, the unacknowledged to the public. One woman describes her rage at her own body when she becomes ill with no explanation. Another writes of the anger she inherits from her father. One Pakistani American writes, "To openly express my anger would be too American," and explains why. Broad-ranging and cathartic, Burn It Down is essential reading for any woman who has burned with rage but questioned if she is entitled to express it.

Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics


Lara Parker - 2020
    But I was getting there. I wanted the world to know that all of this pain I had been feeling…that it was related to my vagina. Thus, Vagina Problems was born. It was a cutesy name. It was my way of taking this pain and saying, “Whatever. I’m here. I have it. It sucks. Let’s talk about it.”In April 2014, Deputy Editorial Director at BuzzFeed Lara Parker opened up to the world in an article on the website: she suffers from endometriosis. And beyond that? She let the whole world know that she wasn’t having any sex, as sex was excruciatingly painful. Less than a year before, she received not only the diagnosis of endometriosis, but also a diagnosis of pelvic floor dysfunction, vulvodynia, vaginismus, and vulvar vestibulitis. Combined, these debilitating conditions have wreaked havoc on her life, causing excruciating pain throughout her body since she was fourteen years old. These are her Vagina Problems. It was five years before Lara learned what was happening to her body. Five years of doctors insisting she just had “bad period cramps,” or implying her pain was psychological. Shamed and stigmatized, Lara fought back against a medical community biased against women and discovered that the ignorance of many doctors about women’s anatomy was damaging more than just her own life. One in ten women have endometriosis and it takes an average of seven years before they receive an accurate diagnosis—or any relief from this incurable illness’ chronic pain. With candid revelations about her vaginal physical therapy, dating as a straight woman without penetrative sex, coping with painful seizures while at the office, diet and wardrobe malfunctions when your vagina hurts all the time, and the depression and anxiety of feeling unloved, Lara tackles it all in Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics with courage, wit, love, and a determination to live her best life."