The Shaking Woman, or A History of My Nerves


Siri Hustvedt - 2009
    Despite her flapping arms and shaking legs, she continued to speak clearly and was able to finish her speech. It was as if she had suddenly become two people: a calm orator and a shuddering wreck. Then the seizures happened again and again. The Shaking Woman tracks Hustvedt’s search for a diagnosis, one that takes her inside the thought processes of several scientific disciplines, each one of which offers a distinct perspective on her paroxysms but no ready solution. In the process, she finds herself entangled in fundamental questions: What is the relationship between brain and mind? How do we remember? What is the self?During her investigations, Hustvedt joins a discussion group in which neurologists, psychiatrists, psychoanalysts, and brain scientists trade ideas to develop a new field: neuropsychoanalysis. She volunteers as a writing teacher for psychiatric in-patients at the Payne Whitney clinic in New York City and unearths precedents in medical history that illuminate the origins of and shifts in our theories about the mind-body problem. In The Shaking Woman, Hustvedt synthesizes her experience and research into a compelling mystery: Who is the shaking woman? In the end, the story she tells becomes, in the words of George Makari, author of Revolution in Mind, “a brilliant illumination for us all.”

Tender Points


Amy Berkowitz - 2015
    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

Care Work: Dreaming Disability Justice


Leah Lakshmi Piepzna-Samarasinha - 2018
    Powerful and passionate, Care Work is a crucial and necessary call to arms.

Exile and Pride: Disability, Queerness, and Liberation


Eli Clare - 1999
    . . . Using the language of the elemental world, he delineates a complex human intersection and transmutes cruelty into its opposite—a potent, lifegiving remedy.”—Alison Bechdel, author of Fun HomeFirst published in 1999, Exile & Pride established Eli Clare as one of the leading writers on the intersections of queerness and disability. With this critical tenth-anniversary edition, the groundbreaking publication secures its position as essential to the history of queer and disability politics, and, through significant new material that boldly interrogates and advances the original text, to its future as well. Clare’s writing on his experiences as a genderqueer activist/writer with cerebral palsy permanently changed the landscape of disability politics and queer liberation, and yet Exile & Pride is much too great in scope to be defined by even these two issues. Instead it offers an intersectional framework for understanding how our bodies actually experience the politics of oppression, power, and resistance. At the heart of Clare’s exploration of environmental destruction, white working-class identity, queer community, disabled sexuality, childhood sexual abuse, coalition politics, and his own gender transition is a call for social justice movements that are truly accessible for everyone.Blending prose and theory, personal experience and political debate, anger and compassion, Exile & Pride provides a window into a world where our whole selves in all their complexity can be loved and accepted.An award-winning poet and essayist, Eli Clare is also the author of The Marrow’s Telling.

What We Don't Talk About When We Talk About Fat


Aubrey Gordon - 2020
    In What We Don't Talk About When We Talk About Fat, Aubrey Gordon unearths the cultural attitudes and social systems that have led to people being denied basic needs because they are fat and calls for social justice movements to be inclusive of plus-sized people's experiences. Unlike the recent wave of memoirs and quasi self-help books that encourage readers to love and accept themselves, Gordon pushes the discussion further towards authentic fat activism, which includes ending legal weight discrimination, giving equal access to health care for large people, increased access to public spaces, and ending anti-fat violence. As she argues, I did not come to body positivity for self-esteem. I came to it for social justice.By sharing her experiences as well as those of others--from smaller fat to very fat people--she concludes that to be fat in our society is to be seen as an undeniable failure, unlovable, unforgivable, and morally condemnable. Fatness is an open invitation for others to express disgust, fear, and insidious concern. To be fat is to be denied humanity and empathy. Studies show that fat survivors of sexual assault are less likely to be believed and less likely than their thin counterparts to report various crimes; 27% of very fat women and 13% of very fat men attempt suicide; over 50% of doctors describe their fat patients as awkward, unattractive, ugly and noncompliant; and in 48 states, it's legal--even routine--to deny employment because of an applicant's size.Advancing fat justice and changing prejudicial structures and attitudes will require work from all people. What We Don't Talk About When We Talk About Fat is a crucial tool to create a tectonic shift in the way we see, talk about, and treat our bodies, fat and thin alike.

Pain Woman Takes Your Keys, and Other Essays from a Nervous System


Sonya Huber - 2017
    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.

The Lady's Handbook for Her Mysterious Illness


Sarah Ramey - 2020
    Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.

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.

Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand


Julie Rehmeyer - 2017
    The top specialists in the world were powerless to help, and scientific research on her disease was at a near standstill. She was running out of money. And she was all alone, with no one to care for her.Having exhausted the plausible ideas, Rehmeyer turned to an implausible one. She followed the advice of strangers she'd met on the Internet. They struck her as crazy but they had recovered from chronic fatigue syndrome as severe as hers. Leaving behind everything she owned, she drove into the desert, testing the theory that mold in her home and belongings was making her sick. Stripped of the life she'd known and the future she'd imagined, Rehmeyer felt as though she were going to the desert to die.But she didn't die. She used her scientific savvy and investigative journalism skills to find a path to wellness and uncovered how shocking scientific neglect and misconduct had forced her, and millions of others, to go it alone. In stunning prose, Rehmeyer describes how her illness transformed her understanding of science, medicine, and spirituality. Through the Shadowlands will bring scientific authority to a misunderstood disease while telling an incredible and compelling story of tenacity, resourcefulness, acceptance, and love.

Show Me Where It Hurts: Living with Invisible Illness


Kylie Maslen - 2020
    I work the way I do because of my body, I vote the way I do because of my body and I live the way I do because of my body. It is not my body that is at fault, but society's failure to deal with bodies like mine. I might be in pain, but I am whole. I refuse to have the difficult parts cropped out.Kylie Maslen has been living with invisible illness for twenty years-more than half her life. Its impact is felt in every aspect of her day-to-day existence- from work to dating; from her fears for what the future holds to her struggles to get out of bed some mornings. Drawing on pop music, art, literature and online culture, Maslen explores the lived experience of invisible illness with sensitivity and wit, drawing back the veil on a reality many struggle-or refuse-to recognise. Show Me Where it Hurts- Living with Invisible Illness is a powerful collection of essays that speak to those who have encountered the brush-off from doctors, faced endless tests and treatments, and endured chronic pain and suffering. But it is also a bridge reaching out to partners, families, friends, colleagues, doctors- all those who want to better understand what life looks like when you cannot simply show others where it hurts.

Waist-High in the World: A Life Among the Nondisabled


Nancy Mairs - 1997
    In a blend of intimate memoir and passionate advocacy, Nancy Mairs takes on the subject woven through all her writing: disability and its effect on life, work, and spirit.

Sitting Pretty: The View from My Ordinary Resilient Disabled Body


Rebekah Taussig - 2020
    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.

Criptiques


Caitlin Wood - 2014
    Exploring themes of gender, sexuality, disability/crip culture, identity, ableism and much more, this important anthology provides much needed space for thought-provoking discourse from a highly diverse group of writers. Criptiques takes a cue from the disability rights slogan "Nothing About Us Without Us," illuminating disability experiences from those with firsthand knowledge. Criptiques is for people invested in crip culture, the ones just discovering it, and those completely unfamiliar with the term.Authors who contributed to this collection include: Elsa S. Henry, Ibby Grace, Leroy Moore, Anna Hamilton, Rachel Cohen-Rottenberg, Eva Sweeney, Emily Ladau, Cheryl Green, Mia Mingus, Stefanie Snider, Cara Liebowitz, Nitika Raj, Nina G Comedian, Ben G., Kay Ulanday Barrett, Cat Moran, William Alton, Lydia Brown, Robin Tovey, Alyssa Hillary, Bethany Stevens, Jen Rinaldi, Samantha Walsh, Danine Spencer, Riva Lehrer.

No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America


Ron Powers - 2017
    Braided with that history is the moving story of Powers's beloved son Kevin--spirited, endearing, and gifted--who triumphed even while suffering from schizophrenia until finally he did not, and the story of his courageous surviving son Dean, who is also schizophrenic.A blend of history, biography, memoir, and current affairs ending with a consideration of where we might go from here, this is a thought-provoking look at a dreaded illness that has long been misunderstood.

The Undying


Anne Boyer - 2019
    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.