The Spark: A Mother's Story of Nurturing Genius


Kristine Barnett - 2013
    At nine he started working on an original theory in astrophysics that experts believe may someday put him in line for a Nobel Prize, and at age twelve he became a paid researcher in quantum physics. But the story of Kristine’s journey with Jake is all the more remarkable because his extraordinary mind was almost lost to autism. At age two, when Jake was diagnosed, Kristine was told he might never be able to tie his own shoes. The Spark is a remarkable memoir of mother and son. Surrounded by “experts” at home and in special ed who tried to focus on Jake’s most basic skills and curtail his distracting interests—moving shadows on the wall, stars, plaid patterns on sofa fabric—Jake made no progress, withdrew more and more into his own world, and eventually stopped talking completely. Kristine knew in her heart that she had to make a change. Against the advice of her husband, Michael, and the developmental specialists, Kristine followed her instincts, pulled Jake out of special ed, and began preparing him for mainstream kindergarten on her own. Relying on the insights she developed at the daycare center she runs out of the garage in her home, Kristine resolved to follow Jacob’s “spark”—his passionate interests. Why concentrate on what he couldn’t do? Why not focus on what he could? This basic philosophy, along with her belief in the power of ordinary childhood experiences (softball, picnics, s’mores around the campfire) and the importance of play, helped Kristine overcome huge odds. The Barnetts were not wealthy people, and in addition to financial hardship, Kristine herself faced serious health issues. But through hard work and determination on behalf of Jake and his two younger brothers, as well as an undying faith in their community, friends, and family, Kristine and Michael prevailed. The results were beyond anything anyone could have imagined. Dramatic, inspiring, and transformative, The Spark is about the power of love and courage in the face of overwhelming obstacles, and the dazzling possibilities that can occur when we learn how to tap the true potential that lies within every child, and in all of us.

Ghost Boy: My Miraculous Escape from a Life Locked Inside My Own Body


Martin Pistorius - 2011
    But he was alive and trapped inside his own body for ten years.In January 1988 Martin Pistorius, aged twelve, fell inexplicably sick. First he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen months he was mute and wheelchair-bound. Martin's parents were told an unknown degenerative disease left him with the mind of a baby and less than two years to live.Martin was moved to care centers for severely disabled children. The stress and heartache shook his parents’ marriage and their family to the core. Their boy was gone. Or so they thought.Ghost Boy is the heart-wrenching story of one boy’s return to life through the power of love and faith. In these pages, readers see a parent’s resilience, the consequences of misdiagnosis, abuse at the hands of cruel caretakers, and the unthinkable duration of Martin’s mental alertness betrayed by his lifeless body.We also see a life reclaimed—a business created, a new love kindled—all from a wheelchair. Martin's emergence from his own darkness invites us to celebrate our own lives and fight for a better life for others.

You Can Stop Humming Now: A Doctor's Stories of Life, Death, and in Between


Daniela Lamas - 2018
    To the public eye, medical stories often begin with sirens and flashing lights and culminate in survival or death. But these are only the most visible narratives. As a critical care doctor treating people at their sickest, Daniela Lamas is fascinated by a different story: what comes after for those whose lives are extended by days, months, or years as a result of our treatments and technologies?In You Can Stop Humming Now, Lamas explores the complex answers to this question through intimate accounts of patients and their families. A grandfather whose failing heart has been replaced by a battery-operated pump; a salesman who found himself a kidney donor on social media; a college student who survived a near-fatal overdose and returned home, alive but not the same; and a young woman navigating an adulthood she never thought she'd live to see -- these moving narratives paint a detailed picture of the fragile border between sickness and health.

Dying: A Memoir


Cory Taylor - 2016
    Her illness is no longer treatable. As she tells us in her remarkable last book, Dying: A Memoir, she now weighs less than her neighbour’s retriever.Written in the space of a few weeks, in a tremendous creative surge, this powerful and beautifully written book is a clear-eyed account of what dying has taught Cory: she describes the tangle of her feelings, she reflects on her life, and she remembers the lives and deaths of her parents. She tells us why she would like to be able to choose the circumstances of her own death.Dying: A Memoir is a breathtaking book about vulnerability and strength, courage and humility, anger and acceptance. It is a deeply affecting meditation on dying, but it is also a funny and wise tribute to life.

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.

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.

Brain on Fire: My Month of Madness


Susannah Cahalan - 2012
    Days earlier, she had been on the threshold of a new, adult life: at the beginning of her first serious relationship and a promising career at a major New York newspaper. Now she was labeled violent, psychotic, a flight risk. What happened?In a swift and breathtaking narrative, Cahalan tells the astonishing true story of her descent into madness, her family’s inspiring faith in her, and the lifesaving diagnosis that nearly didn’t happen.

Thinking in Pictures: My Life with Autism


Temple Grandin - 1995
    She also lectures widely on autism—because Temple Grandin is autistic, a woman who thinks, feels, and experiences the world in ways that are incomprehensible to the rest of us. In this unprecedented book, Grandin delivers a report from the country of autism. Writing from the dual perspectives of a scientist and an autistic person, she tells us how that country is experienced by its inhabitants and how she managed to breach its boundaries to function in the outside world. What emerges in Thinking in Pictures is the document of an extraordinary human being, one who, in gracefully and lucidly bridging the gulf between her condition and our own, sheds light on the riddle of our common identity.

The Quiet Room: A Journey Out of the Torment of Madness


Lori Schiller - 1994
    Six years later she made her first suicide attempt, then wandered the streets of New York City dressed in ragged clothes, tormenting voices crying out in her mind. Lori Schiller had entered the horrifying world of full-blown schizophrenia. She began an ordeal of hospitalizations, halfway houses, relapses, more suicide attempts, and constant, withering despair. But against all odds, she survived. Now in this personal account, she tells how she did it, taking us not only into her own shattered world, but drawing on the words of the doctors who treated her and family members who suffered with her.In this new edition, Lori Schiller recounts the dramatic years following the original publication -- a period involving addiction, relapse, and ultimately, love and recovery.Moving, harrowing, and ultimately uplifting, THE QUIET ROOM is a classic testimony to the ravages of mental illness and the power of perseverance and courage.

You Don't Look Like Anyone I Know: A True Story of Family, Face Blindness, and Forgiveness


Heather Sellers - 2010
     Heather Sellers is face-blind-that is, she has prosopagnosia, a rare neurological condition that prevents her from reliably recognizing people's faces. Growing up, unaware of the reason for her perpetual confusion and anxiety, she took what cues she could from speech, hairstyle, and gait. But she sometimes kissed a stranger, thinking he was her boyfriend, or failed to recognize even her own father and mother. She feared she must be crazy. Yet it was her mother who nailed windows shut and covered them with blankets, made her daughter walk on her knees to spare the carpeting, had her practice secret words to use in the likely event of abduction. Her father went on weeklong "fishing trips" (aka benders), took in drifters, wore panty hose and bras under his regular clothes. Heather clung to a barely coherent story of a "normal" childhood in order to survive the one she had. That fairy tale unraveled two decades later when Heather took the man she would marry home to meet her parents and began to discover the truth about her family and about herself. As she came at last to trust her own perceptions, she learned the gift of perspective: that embracing the past as it is allows us to let it go. And she illuminated a deeper truth-that even in the most flawed circumstances, love may be seen and felt. Watch a Video

Golem Girl: A Memoir


Riva Lehrer - 2020
    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.

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.

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.

Until I Say Goodbye: A Book about Living


Susan Spencer-Wendel - 2012
    She was forty-four years old, with a devoted husband and three young children, and she had only one year of health remaining.Susan decided to live that year with joy.She quit her job as a journalist and spent time with her family. She built an outdoor meeting space for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She took her sons to swim with dolphins, and her teenage daughter, Marina, to Kleinfeld's bridal shop in New York City to see her for the first and last time in a wedding dress.She also wrote this book. No longer able to walk or even to lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working.However, Until I Say Good-Bye is not angry or bitter. It is sad in parts--how could it not be?--but it is filled with Susan's optimism, joie de vivre, and sense of humor. It is a book about life, not death. One that, like Susan, will make everyone smile.From the Burger King parking lot where she cried after her diagnosis to a snowy hot spring near the Arctic Circle, from a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is not only Susan Spencer-Wendel's unforgettable gift to her loved ones--a heartfelt record of their final experiences together--but an offering to all of us: a reminder that "every day is better when it is lived with joy."

No Cure for Being Human: And Other Truths I Need to Hear


Kate Bowler - 2021
    A beach body by summer. A trip to Disneyland around the corner. A promotion on the horizon. Everyone wants to believe that they are headed toward good, better, best. But what happens when the life you hoped for is put on hold indefinitely?Kate Bowler believed that life was a series of unlimited choices, until she discovered, at age 35, that her body was wracked with cancer. In No Cure for Being Human, she searches for a way forward as she mines the wisdom (and absurdity) of today's "best life now" advice industry, which insists on exhausting positivity and on trying to convince us that we can out-eat, out-learn, and out-perform our humanness. We are, she finds, as fragile as the day we were born.With dry wit and unflinching honesty, Kate Bowler grapples with her diagnosis, her ambition, and her faith as she tries to come to terms with her limitations in a culture that says anything is possible. She finds that we need one another if we're going to tell the truth: Life is beautiful and terrible, full of hope and despair and everything in between--and there's no cure for being human.