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.

Beating Endo: How to Reclaim Your Life from Endometriosis


Iris Kerin Orbuch - 2019
    Despite the disease’s  prevalence, the average woman may suffer for a decade or more before receiving an accurate diagnosis. Once she does, she’s often given little more than a prescription for pain killers and a referral for the wrong kind of surgery. Beating Endo arms women with what has long been missing—even within the medical community—namely, cutting-edge knowledge of how the disease works and what the endo sufferer can do to take charge of her fight against it.Leading gynecologist and endometriosis specialist Dr. Iris Kerin Orbuch and world-renowned pelvic pain specialist and physical therapist Dr. Amy Stein have long partnered with each other and with other healthcare practitioners to address the disease’s host of co-existing conditions—which can include pelvic floor muscle dysfunction, gastrointestinal ailments, painful bladder syndrome, central nervous system sensitization—through a whole-mind/whole-body approach. Now, Beating Endo formalizes the multimodal program they developed, offering readers an anti-inflammatory lifestyle protocol that incorporates physical therapy, nutrition, mindfulness, and environment to systematically addresses each of the disease’s co-conditions on an ongoing basis up to and following excision surgery. This is the program that has achieved successful outcomes for their patients; it is the program that works to restore health, vitality, and quality of life to women with endo.No more “misdiagnosis roulette” and no more limits on women’s lives: Beating Endo puts the tools of renewed health in the hands of those whose health is at risk.

Now I See You: A Memoir


Nicole C. Kear - 2014
    Kear's biggest concern is choosing a major--until she walks into a doctor's office in midtown Manhattan and gets a life-changing diagnosis. She is going blind, courtesy of an eye disease called retinitis pigmentosa, and has only a decade or so before Lights Out. Instead of making preparations as the doctor suggests, Kear decides to carpe diem and make the most of the vision she has left. She joins circus school, tears through boyfriends, travels the world, and through all these hi-jinks, she keeps her vision loss a secret.When Kear becomes a mother, just a few years shy of her vision's expiration date, she amends her carpe diem strategy, giving up recklessness in order to relish every moment with her kids. Her secret, though, is harder to surrender - and as her vision deteriorates, harder to keep hidden. As her world grows blurred, one thing becomes clear: no matter how hard she fights, she won't win the battle against blindness. But if she comes clean with her secret, and comes to terms with the loss, she can still win her happy ending.Told with humor and irreverence, Now I See You is an uplifting story about refusing to cower at life's curveballs, about the power of love to triumph over fear. But, at its core, it's a story about acceptance: facing the truths that just won't go away, and facing yourself, broken parts and all.

The Empathy Exams


Leslie Jamison - 2014
    She draws from her own experiences of illness and bodily injury to engage in an exploration that extends far beyond her life, spanning wide-ranging territory—from poverty tourism to phantom diseases, street violence to reality television, illness to incarceration—in its search for a kind of sight shaped by humility and grace.

The Diving Bell and the Butterfly


Jean-Dominique Bauby - 1997
    In my case, blinking my left eyelid is my only means of communication.’In December 1995, Jean-Dominique Bauby, editor-in-chief of French ‘Elle’ and the father of two young children, suffered a massive stroke and found himself paralysed and speechless, but entirely conscious, trapped by what doctors call ‘locked-in syndrome’. Using his only functioning muscle – his left eyelid – he began dictating this remarkable story, painstakingly spelling it out letter by letter.His book offers a haunting, harrowing look inside the cruel prison of locked-in syndrome, but it is also a triumph of the human spirit.

It's Not Yet Dark


Simon Fitzmaurice - 2014
    He was given four years to live. In 2010, in a state of lung-function collapse, Simon knew with crystal clarity that now was not his time to die. Against all prevailing medical opinion, he chose to ventilate in order to stay alive.Here, the young filmmaker, a husband and father of five small children draws us deeply into his inner world. Told in simply expressed and beautifully stark prose - in the vein of such memoirs as Jean-Dominique Bauby's The Diving Bell and the Butterfly - the result is an astonishing journey into a life which, though brutally compromised, is lived more fully and in the moment than most, revealing at its core the power of love its most potent.Written using an eye-gaze computer, It's Not Yet Dark is an unforgettable book about relationships and family, about what connects and separates us as people and, ultimately, about what it means to be alive.

All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache


Paula Kamen - 2005
    While she was putting in her contacts, the left lens disturbed a constellation of nerves behind her eye. The pain was more piercing than that of any other headache she had ever experienced. More than a decade later, she still has a headache-the exact same headache. From surgery to a battery of Botox injections to a dousing of Lithuanian holy water, from a mountain of pharmaceutical products to aromatherapy and even a vibrating hat, All in My Head chronicles the sometimes frightening, usually absurd, and always ineffective remedies Kamen-like so many others-tried in order to relieve the pain. Beleaguered and frustrated by doctors who, frustrated themselves, periodically declared her pain psychosomatic, she came to understand the plight of the millions who suffer chronic pain in its many forms. Full of self-deprecating humor and razorsharp reporting, All in My Head is the remarkable story of patience, acceptance, and perseverance in the face of terrifying pain.

Giving Up the Ghost


Hilary Mantel - 2003
    Once married, however, she acquired a persistent pain that led to destructive drugs and patronizing psychiatry, ending in an ineffective but irrevocable surgery. There would be no children; in herself she found instead one novel, and then another.

The Man Who Forgot How To Read


Howard Engel - 2007
    The letters had mysteriously jumbled themselves into something that looked like Cyrillic one moment and Korean the next. "Was this a Serbo-Croatian version of The Globe?" he wondered. Overnight, while he slept, Engel had experienced a stroke and now suffered from a rare condition called alexia sine agraphia, meaning that while he could still write, he could no longer read. Engel's gentle humour and matter-of- fact tone set the stage for this extraordinary memoir that traces the writer's journey through a life-changing episode. Describing his stay in hospital, Engel also discovers other horrifying and fascinating new "insults" to his brain: Geography eludes him; he can no longer navigate.Apples and grapefruit now look the same (only by smelling each one can he tell them apart). And yet, despite these devastating disabilities and the almost certain loss of his career and a huge chunk of his identity, Engel prepares to reconcile with his condition. He contacts renowned neurologist Dr. Oliver Sacks for advice, forging a lasting friendship. He bravely begins to learn how to read all over again. And, in the face of obstacles, his imagination triumphs in the writing of his latest Benny Cooperman detective novel, Memory Book. Engel describes the painstaking writing process of this 2005 bestseller, which has the detective developing alexia after being struck on the head.An absorbingly detailed and uplifting story, filled with sly wit and candid insights, The Man Who Forgot How to Read will appeal to Engel's legion of fans, as well as to all those fascinated by the mysteries of the mind, on and off the page.

Bronze


Kerri-Anne Weston - 2012
    She and her friends from Nobby’s Beach are the first women in Australia to gain their Bronze medallions for Surf Life Saving. On the eve of the year 1981 on the Gold Coast, Australia, this active teenager’s life is about to shatter and transform her once perfect world into one of despair as she tackles a life of paralysis. Through the support of her friends and family, Kerri will find her way back to the water and into the history books.A memoir filled with joy, tears, letters and poetry of a time when all else seemed lost. A life of hopes, dreams, love and humility learned.

Unwell Women: Misdiagnosis and Myth in a Man-Made World


Elinor Cleghorn - 2021
     Elinor Cleghorn became an unwell woman ten years ago. She was diagnosed with an autoimmune disease after a long period of being told her symptoms were anything from psychosomatic to a possible pregnancy. As Elinor learned to live with her unpredictable disease she turned to history for answers, and found an enraging legacy of suffering, mystification, and misdiagnosis.In Unwell Women, Elinor Cleghorn traces the almost unbelievable history of how medicine has failed women by treating their bodies as alien and other, often to perilous effect. The result is an authoritative and groundbreaking exploration of the relationship between women and medical practice, from the wandering womb of Ancient Greece to the rise of witch trials across Europe, and from the dawn of hysteria as a catchall for difficult-to-diagnose disorders to the first forays into autoimmunity and the shifting understanding of hormones, menstruation, menopause, and conditions like endometriosis.Packed with character studies and case histories of women who have suffered, challenged, and rewritten medical orthodoxy--and the men who controlled their fate--this is a revolutionary examination of the relationship between women, illness, and medicine. With these case histories, Elinor pays homage to the women who suffered so strides could be made, and shows how being unwell has become normalized in society and culture, where women have long been distrusted as reliable narrators of their own bodies and pain. But the time for real change is long overdue: answers reside in the body, in the testimonies of unwell women--and their lives depend on medicine learning to listen.

Angelhead: My Brother's Descent into Madness


Greg Bottoms - 2000
    Beginning with Michael's first psychotic break—seeing God in his suburban bedroom window while high on LSD—Greg Bottoms recounts, in gripping, dramatic prose, the bizarre disappearances, suicide attempts, and the shocking crime that land Michael in the psychiatric wing of a maximum security prison. A work of nonfiction with the form and imagery of a novel, Angelhead enables the reader to witness not only the fragmenting of a mind, but of a family as well.

Care Work: Dreaming Disability Justice


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

Cancer Schmancer


Fran Drescher - 2002
    But not before a goldmine of humorous insights were revealed to her about what really matters most in life.

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.