What about on a scale of spicy to citrus? Is it more like a lava lamp or a mosaic? Pain, though a universal element of human experience, is dimly understood and sometimes barely managed. Pain Woman Takes Your Keys, and Other Essays from a Nervous System is a collection of literary and experimental essays about living with chronic pain. Sonya Huber moves away from a linear narrative to step through the doorway into pain itself, into that strange, unbounded reality. Although the essays are personal in nature, this collection is not a record of the author’s specific condition but an exploration that transcends pain’s airless and constraining world and focuses on its edges from wild and widely ranging angles. Huber addresses the nature and experience of invisible disability, including the challenges of gender bias in our health care system, the search for effective treatment options, and the difficulty of articulating chronic pain. She makes pain a lens of inquiry and lyricism, finds its humor and complexity, describes its irascible character, and explores its temperature, taste, and even its beauty.

    Named after the diagnostic criteria for fibromyalgia, the book-length lyric essay explores sexual violence, gendered illness, chronic pain, and patriarchy through the lenses of lived experience and pop culture (Twin Peaks, Teenage Mutant Ninja Turtles, noise music, etc.). Teaching Guide (or Book Club Guide) here: bit.ly/2aqJV2X

    At the time, most such children are not expected to survive. Her parents and doctors are determined to "fix" her, sending the message over and over again that she is broken. That she will never have a job, a romantic relationship, or an independent life. Enduring countless medical interventions, Riva tries her best to be a good girl and a good patient in the quest to be cured.Everything changes when, as an adult, Riva is invited to join a group of artists, writers, and performers who are building Disability Culture. Their work is daring, edgy, funny, and dark — it rejects tropes that define disabled people as pathetic, frightening, or worthless. They insist that disability is an opportunity for creativity and resistance. Emboldened, Riva asks if she can paint their portraits — inventing an intimate and collaborative process that will transform the way she sees herself, others, and the world. Each portrait story begins to transform the myths she’s been told her whole life about her body, her sexuality, and other measures of normal.Written with the vivid, cinematic prose of a visual artist, and the love and playfulness that defines all of Riva's work, Golem Girl is an extraordinary story of tenacity and creativity. With the author's magnificent portraits featured throughout, this memoir invites us to stretch ourselves toward a world where bodies flow between all possible forms of what it is to be human.

    None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling.Writing about the rhythms and textures of what it means to live in a body that doesn’t fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life.Disability affects all of us, directly or indirectly, at one point or another. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. Sitting Pretty challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story.

    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.

    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.

    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.

    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.

    For a single mother living paycheck to paycheck who had always been the caregiver rather than the one needing care, the catastrophic illness was both a crisis and an initiation into new ideas about mortality and the gendered politics of illness.A twenty-first-century Illness as Metaphor, as well as a harrowing memoir of survival, The Undying explores the experience of illness as mediated by digital screens, weaving in ancient Roman dream diarists, cancer hoaxers and fetishists, cancer vloggers, corporate lies, John Donne, pro-pain ”dolorists,” the ecological costs of chemotherapy, and the many little murders of capitalism. It excoriates the pharmaceutical industry and the bland hypocrisies of ”pink ribbon culture” while also diving into the long literary line of women writing about their own illnesses and ongoing deaths: Audre Lorde, Kathy Acker, Susan Sontag, and others.A genre-bending memoir in the tradition of The Argonauts, The Undying will break your heart, make you angry enough to spit, and show you contemporary America as a thing both desperately ill and occasionally, perversely glorious.

    She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis.In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.

    A map, a tracing of connections and a guide to looking at things from different angles. How do you tell the story of life that is no one thing? How do you tell the story of a life in a body, as it goes through sickness, health, motherhood? And how do you tell that story when you are not just a woman but a woman in Ireland? In these powerful and daring essays, Sinead Gleeson does that very thing. In doing so she delves into a range of subjects: art, illness, ghosts, grief, and our very ways of seeing. In writing that is in tradition of some of our finest writers such as Olivia Laing, Maggie O'Farrell, and Maggie Nelson, and yet still in her own spirited, warm voice, Gleeson takes us on a journey that is both personal and yet universal in its resonance.

    She was a respected senior professor of English who had celebrated her fiftieth birthday a month before. As she crested a hill, she caught a branch in the spokes of her bicycle, which instantly pitched her to the pavement. Her chin took the full force of the blow, and her head snapped back. In that instant, she was paralyzed.In A Body, Undone, Crosby puts into words a broken body that seems beyond the reach of language and understanding. She writes about a body shot through with neurological pain, disoriented in time and space, incapacitated by paralysis and deadened sensation. To address this foreign body, she calls upon the readerly pleasures of narrative, critical feminist and queer thinking, and the concentrated language of lyric poetry. Working with these resources, she recalls her 1950s tomboy ways in small-town, rural Pennsylvania, and records growing into the 1970s through radical feminism and the affirmations of gay liberation.Deeply unsentimental, Crosby communicates in unflinching prose the experience of "diving into the wreck" of her body to acknowledge grief, and loss, but also to recognize the beauty, fragility, and dependencies of all human bodies. A memoir that is a meditation on disability, metaphor, gender, sex, and love, A Body, Undone is a compelling account of living on, as Crosby rebuilds her body and fashions a life through writing, memory, and desire.

    Stephen's Day, 2010, in St. John's, Newfoundland, when the author gives birth to a baby girl named Sadie Jane who has a shock of snow-white hair. News of the child's icy locks travels across the hospital, and physicians and nurses from all wards visit the unusually beautiful newborn as she lies sleeping in her plastic bassinet. The maternity-floor janitor, however, feels something is amiss. Her eyes wide, incredulous and panicky, the janitor asks, "Is she an albino?" The idea is immediately dismissed, but after three months of medical testing, Sadie is diagnosed with albinism, a rare genetic condition where pigment fails to form in the skin, hair and eyes. She is visually impaired and faces a lifetime avoiding the sun. She will always have the otherworldly appearance that drew the awestruck hospital staff to her side.A journalist and folklore scholar accustomed to processing the world through other people's stories, Emily is drawn to understanding her child's difference by researching the cultural beliefs associated with albinism worldwide. What she finds on her journey vacillates between beauty and darkness. She discovers that Noah's birth story is believed to be the first record of a baby born with albinism, and that the Kuna people in Panama revere members of their society with albinism, seeing them as defenders of the moon in the night sky. She attends a gathering of people with albinism in St. Louis and interviews geneticists, social scientists, novelists and folklorists in Canada, England and the US. But when she uncovers information about gruesome attacks on people with albinism in Tanzania, rooted in witchcraft, she feels compelled to travel to East Africa, her sun-shy toddler in tow, in an effort to understand these human-rights violations. Upon her return to Canada she discovers a family photograph from the past that might illuminate her daughter’s present. While navigating new territory as a first-time parent of a child with a disability, Emily embarks on a three-year journey across North America and Africa to discover how we explain human differences, not through scientific facts or statistics but through a system of cultural beliefs. Part parenting memoir, part cultural critique and part travelogue, Beyond the Pale, as the title suggests, takes the reader into dark and unknown territory in the search for enlightenment.

    She was 52.Paralysed from the top of her chest down, she was to spend almost a full year in hospital, determinedly working towards gaining as much movement in her limbs as possible, and learning to navigate her way through a world that had previously been invisible to her.As a journalist Melanie had always turned to words and now, on a spinal ward peopled by an extraordinary array of individuals who were similarly at sea, she decided that writing would be her life-line. The World I Fell Out Of is an account of that year, and of those that followed. It is the untold ‘back story’ behind Melanie’s award-winning ‘Spinal Column’ in The Times Magazine and a testament to ‘the art of getting on with it’.Unflinchingly honest and beautifully observed, this is a memoir about the joy – and the risks – of riding horses, the complicated nature of heroism, the bonds of family and the comfort of strangers. Above all, The World I Fell Out Of is a reminder that at any moment the life we know can be turned upside down – and a plea to start appreciating what we have while we have it.

    At age thirteen, he is mentally and developmentally between one and three years old and will need constant care for the rest of his life. Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker’s doctors can’t answer. In his journey, he offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is. Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.