Shadows Bright as Glass: The Remarkable Story of One Man's Journey from Brain Trauma to Artistic Triumph


Amy Ellis Nutt - 2011
    As he bent down to pick up his golf ball, something strange and massive happened inside his head; part of his brain seemed to unhinge, to split apart and float away. For an utterly inexplicable reason, a tiny blood vessel, thin as a thread, deep inside the folds of his gray matter had suddenly shifted ever so slightly, rubbing up against his acoustic nerve. Any noise now caused him excruciating pain. After months of seeking treatment to no avail, in desperation Sarkin resorted to radical deep-brain surgery, which seemed to go well until during recovery his brain began to bleed and he suffered a major stroke. When he awoke, he was a different man. Before the stroke, he was a calm, disciplined chiropractor, a happily married husband and father of a newborn son. Now he was transformed into a volatile and wildly exuberant obsessive, seized by a manic desire to create art, devoting virtually all his waking hours to furiously drawing, painting, and writing poems and letters to himself, strangely detached from his wife and child, and unable to return to his normal working life. His sense of self had been shattered, his intellect intact but his way of being drastically altered. His art became a relentless quest for the right words and pictures to unlock the secrets of how to live this strange new life. And what was even stranger was that he remembered his former self. In a beautifully crafted narrative, award-winning journalist and Pulitzer Prize finalist Amy Ellis Nutt interweaves Sarkin’s remarkable story with a fascinating tour of the history of and latest findings in neuroscience and evolution that illuminate how the brain produces, from its web of billions of neurons and chaos of liquid electrical pulses, the richness of human experience that makes us who we are. Nutt brings vividly to life pivotal moments of discovery in neuroscience, from the shocking “rebirth” of a young girl hanged in 1650 to the first autopsy of an autistic savant’s brain, and the extraordinary true stories of people whose personalities and cognitive abilities were dramatically altered by brain trauma, often in shocking ways. Probing recent revelations about the workings of creativity in the brain and the role of art in the evolution of human intelligence, she reveals how Jon Sarkin’s obsessive need to create mirrors the earliest function of art in the brain. Introducing major findings about how our sense of self transcends the bounds of our own bodies, she explores how it is that the brain generates an individual “self” and how, if damage to our brains can so alter who we are, we can nonetheless be said to have a soul. For Jon Sarkin, with his personality and sense of self permanently altered, making art became his bridge back to life, a means of reassembling from the shards of his former self a new man who could rejoin his family and fashion a viable life. He is now an acclaimed artist who exhibits at some of the country’s most prestigious venues, as well as a devoted husband to his wife, Kim, and father to their three children. At once wrenching and inspiring, this is a story of the remarkable human capacity to overcome the most daunting obstacles and of the extraordinary workings of the human mind.

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.

Daughter of Family G: A Memoir of Cancer Genes, Love and Fate


Ami McKay - 2019
    In 1895 her great-great aunt, Pauline Gross, a seamstress in Ann Arbor, Michigan, confided to a pathology professor at the local university that she expected to die young, like so many others in her family. Rather than dismiss her fears, the pathologist chose to enlist Pauline in the careful tracking of those in her family tree who had died of cancer. Pauline's premonition proved true--she died at 46--but because of her efforts, her family (who the pathologist dubbed 'Family G') would become the longest and most detailed cancer genealogy ever studied in the world. A century after Pauline's confession, researchers would identify the genetic mutation responsible for the family's woes. Now known as Lynch syndrome, the genetic condition predisposes its carriers to several types of cancer, including colorectal, endometrial, ovarian and pancreatic. In 2001, as a young mother with two sons and a keen interest in survival, Ami McKay was among the first to be tested for Lynch syndrome. She had a feeling she'd test positive: her mother's side of the family was riddled with early deaths and her own mother was being treated for the disease. When the test proved her fears true, she began living in "an unsettling state between wellness and cancer," and she's been there ever since. Intimate, candid, and probing, her genetic memoir tells a fascinating story, teasing out the many ways to live with the hand you are dealt.

My Last Step Backward


Tasha Schuh - 2012
    No one knew that the stage itself would steal her dream-and almost her life-during a rehearsal for the next big show.Just days before her opening night performance in The Wizard of Oz, sixteen-year- old Tasha took one step backward and fell sixteen feet through a trap door. On that day, Nov. 11, 1997, she landed on the concrete floor of the historic Sheldon Theater, breaking her neck, crushing her spinal cord, and fracturing her skull. She would never walk again.For the next three days, Tasha prepared for a surgery that would at best leave her a C-5 quadriplegic. Post-op complications turned Tasha's struggle and ultimate triumph into an unbelievable journey. From loss and grief to self-discovery and achievement, Tasha's faith, resilience, and honesty have allowed her to leave the old Tasha behind while she confronts the new Tasha's life from a state of the art wheelchair.Discover Tasha's remarkable spirit in My Last Step Backward, a poignant memoir that seeks to inspire you to welcome adversity and face your own trap door of opportunity.

Unseen: The secret world of chronic illness


Jacinta Parsons - 2020
    Doctors couldn’t explain why, and Jacinta wondered if it might be in her head. She could barely function, was frequently unable to eat or get out of bed for days, and gradually turned into a shadow of herself. Eventually she got a diagnosis: Crohn’s disease. But knowing this wouldn’t stop her life from spiralling into a big mess of doctors, hospitals and medical disasters.What’s most extraordinary about Jacinta’s story is how common it is. Nearly half of Australians live with a chronic illness, but most of these conditions are not obvious, often endured in secrecy and little understood. They are unseen.With compelling candour, Jacinta trains a microscope on the unique challenges of living with an invisible condition. She lays bare the struggles with shame, loss of identity, the threat of mortality, and the profoundly complex relationships between the chronically ill and their own bodies, as well as with those around them. It’s a story of trying to fix an unfixable illness, getting beaten down then clawing back up, and how that experience can shape a life.

Cancerland: A Medical Memoir


David Scadden - 2018
    What is it like to encounter cancer? How does it feel to face the unknown, to enter a world of hope, loss, and dread? From the diagnosis of his childhood friend's mother to his poignant memories in the lab, David Scadden's seen the unknown world of cancer from the lens of a young boy, a classmate, a researcher, a friend, a doctor, and a neighbor. Scadden chronicles his personal memories of cancer--his visits to his sick neighbor and his classmate who left school and never came back.Now Dr. David Scadden, co-founder of the Harvard Stem Cell Institute and one of the world's leading experts on immunology and oncology, writes his memoir, Cancerland , with Pulitzer Prize-winning journalist Michael D'Antonio. With riveting stories and moving compassion, Scadden and D'Antonio paint a still rapidly changing landscape in the context of all too common stories of loss. Ranging from Scadden's personal childhood memories to his triumphs and regrets as a doctor, Scadden illuminates a light at the end of a dark tunnel.Through opening a window into the science of medicine in the world of unknown, Scadden and D'Antonio humanize cancer while inspiring action that we all so desperately need.

The Deep Places: A Memoir of Illness and Discovery


Ross Douthat - 2021
    It left him sleepless, crippled, wracked with pain--a shell of himself. After months of seeing doctors and descending deeper into a physical inferno, he discovered that he had a disease which according to CDC definitions does not actually exist: the chronic form of Lyme disease, a hotly contested condition that devastates the lives of tens of thousands of people but has no official recognition--and no medically approved cure.From a rural dream house that now felt like a prison, Douthat's search for help takes him off the map of official medicine, into territory where cranks and conspiracies abound and patients are forced to take control of their own treatment and experiment on themselves. Slowly, against his instincts and assumptions, he realizes that many of the cranks and weirdos are right, that many supposed hypochondriacs are victims of an indifferent medical establishment, and that all kinds of unexpected experiences and revelations lurk beneath the surface of normal existence, in the places underneath.The Deep Places is a story about what happens when you are terribly sick and realize that even the doctors who are willing to treat you can only do so much. Along the way, Douthat describes his struggle back toward health with wit and candor, portraying sickness as the most terrible of gifts. It teaches you to appreciate the grace of ordinary life by taking that life away from you. It reveals the deep strangeness of the world, the possibility that the reasonable people might be wrong, and the necessity of figuring out things for yourself. And it proves, day by dreadful day, that you are stronger than you ever imagined, and that even in the depths there is always hope.

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.

Talking Hands: What Sign Language Reveals about the Mind


Margalit Fox - 2007
    Just such a village -- an isolated Bedouin community in Israel with an unusually high rate of deafness -- is at the heart of "Talking Hands: What Sign Language Reveals About the Mind." There, an indigenous sign language has sprung up, used by deaf and hearing villagers alike. It is a language no outsider has been able to decode, until now.A "New York Times" reporter trained as a linguist, Margalit Fox is the only Western journalist to have set foot in this remarkable village. In "Talking Hands, " she follows an international team of scientists that is unraveling this mysterious language.Because the sign language of the village has arisen completely on its own, outside the influence of any other language, it is a living demonstration of the "language instinct," man's inborn capacity to create language. If the researchers can decode this language, they will have helped isolate ingredients essential to all human language, signed and spoken. But as "Talking Hands" grippingly shows, their work in the village is also a race against time, because the unique language of the village may already be endangered."Talking Hands" offers a fascinating introduction to the signed languages of the world -- languages as beautiful, vital and emphatically human as any other -- explaining why they are now furnishing cognitive scientists with long-sought keys to understanding how language works in the mind.Written in lyrical, accessible prose, "Talking Hands" will captivate anyone interested in language, the human mind and journeys to exotic places.

Moonlight Sonata at the Mayo Clinic


Nora Gallagher - 2013
    One day at the end of 2009, during a routine eye exam that Nora Gallagher nearly skipped, her doctor said, “Darn.” Her right optic nerve was inflamed, the cause unknown, a condition that if left untreated would cause her to lose her sight. And so began her departure from ordinary life and her travels in what she calls Oz, the land of the sick. It looks like the world most of us inhabit, she tells us, except that “the furniture is slightly rearranged”: her friends can’t help her, her trusted doctors don’t know what’s wrong, and what faith she has left just won’t cover it. After a year of searching for a diagnosis and treatment, she arrives at the Mayo Clinic and finds a whole town built around Oz.In the course of her journey, Gallagher encounters inhuman doctors, the modern medical system—in which knowledge takes fifteen years to trickle down—and the strange world that is the famous Mayo Clinic, complete with its grand piano. With unerring candor, and no sentimentality whatsoever, Gallagher describes the unexpected twists and turns of the path she took through a medical mystery and an unfathomably changing life. In doing so, she gives us a singular, luminous map of vulnerability and dark landscapes. “It’s the nature of things to be vulnerable,” Gallagher says. “The disorder is imagining we are not.”

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.

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.

Sickened: The Memoir of a Munchausen by Proxy Childhood


Julie Gregory - 2003
    Just twelve, she’s tall, skinny, and weak. It’s four o’clock, and she hasn’t been allowed to eat anything all day. Her mother, on the other hand, seems curiously excited. She's about to suggest open-heart surgery on her child to "get to the bottom of this." She checks her teeth for lipstick and, as the doctor enters, shoots the girl a warning glance. This child will not ruin her plans.SickenedFrom early childhood, Julie Gregory was continually X-rayed, medicated, and operated on—in the vain pursuit of an illness that was created in her mother’s mind. Munchausen by proxy (MBP) is the world’s most hidden and dangerous form of child abuse, in which the caretaker—almost always the mother—invents or induces symptoms in her child because she craves the attention of medical professionals. Many MBP children die, but Julie Gregory not only survived, she escaped the powerful orbit of her mother's madness and rebuilt her identity as a vibrant, healthy young woman.Sickened is a remarkable memoir that speaks in an original and distinctive Midwestern voice, rising to indelible scenes in prose of scathing beauty and fierce humor. Punctuated with Julie's actual medical records, it re-creates the bizarre cocoon of her family's isolated double-wide trailer, their wild shopping sprees and gun-waving confrontations, the astonishing naïveté of medical professionals and social workers. It also exposes the twisted bonds of terror and love that roped Julie's family together—including the love that made a child willing to sacrifice herself to win her mother's happiness. The realization that the sickness lay in her mother, not in herself, would not come to Julie until adulthood. But when it did, it would strike like lightning. Through her painful metamorphosis, she discovered the courage to save her own life—and, ultimately, the life of the girl her mother had found to replace her. Sickened takes us to new places in the human heart and spirit. It is an unforgettable story, unforgettably told.

Weekends at Bellevue: Nine Years on the Night Shift at the Psych E.R.


Julie Holland - 2009
    Recounts stories from her vast case files that are alternately terrifying, tragically comic, and profoundly moving, all while she deals with her best friend and fellow doctor's fight with cancer.

Between Two Kingdoms: A Memoir of a Life Interrupted


Suleika Jaouad - 2021
    She had fallen in love and moved to Paris to pursue her dream of becoming a war correspondent. The real world she found, however, would take her into a very different kind of conflict zone.It started with an itch—first on her feet, then up her legs, like a thousand invisible mosquito bites. Next came the exhaustion, and the six-hour naps that only deepened her fatigue. Then a trip to the doctor and, a few weeks shy of her twenty-third birthday, a diagnosis: leukemia, with a 35 percent chance of survival. Just like that, the life she had imagined for herself had gone up in flames. By the time Jaouad flew home to New York, she had lost her job, her apartment, and her independence. She would spend much of the next four years in a hospital bed, fighting for her life and chronicling the saga in a column for The New York Times.When Jaouad finally walked out of the cancer ward—after three and a half years of chemo, a clinical trial, and a bone marrow transplant—she was, according to the doctors, cured. But as she would soon learn, a cure is not where the work of healing ends; it’s where it begins. She had spent the past 1,500 days in desperate pursuit of one goal—to survive. And now that she’d done so, she realized that she had no idea how to live.How would she reenter the world and live again? How could she reclaim what had been lost? Jaouad embarked—with her new best friend, Oscar, a scruffy terrier mutt—on a 100-day, 15,000-mile road trip across the country. She set out to meet some of the strangers who had written to her during her years in the hospital: a teenage girl in Florida also recovering from cancer; a teacher in California grieving the death of her son; a death-row inmate in Texas who’d spent his own years confined to a room. What she learned on this trip is that the divide between sick and well is porous, that the vast majority of us will travel back and forth between these realms throughout our lives. Between Two Kingdoms is a profound chronicle of survivorship and a fierce, tender, and inspiring exploration of what it means to begin again.