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.

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.

What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt


Tessa Miller - 2021
    At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a yearslong nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better.Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications.Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.

Girl in the Dark


Anna Lyndsey - 2015
    She was ambitious and worked hard; she had just bought an apartment; she was falling in love. But then she started to develop worrying symptoms: her face felt like it was burning whenever she was in front of the computer. Soon this progressed to an intolerance of fluorescent light, then of sunlight itself. The reaction soon spread to her entire body. Now, when her symptoms are at their worst, she must spend months on end in a blacked-out room, losing herself in audio books and elaborate word games in an attempt to ward off despair. It was during this period she began to write this book.

Not Fade Away: A Memoir of Senses Lost and Found


Rebecca Alexander - 2014
    Then, at 18, a fall from a window left her athletic body completely shattered. None of us know what we would do in the face of such devastation. What Rebecca did was rise to every challenge she faced. She was losing her vision and hearing and her body was broken, but she refused to lose her drive, her zest for life and – maybe most importantly – her sense of humor. Now, at 35, with only a sliver of sight and significantly deteriorated hearing, she is a psychotherapist with two masters’ degrees from Columbia University, and an athlete who teaches spin classes and regularly competes in extreme endurance races. She greets every day as if it were a gift, with boundless energy, innate curiosity, and a strength of spirit that have led her to places we can't imagine.  In Not Fade Away, Rebecca tells her extraordinary story, by turns harrowing, funny and inspiring. She meditates on what she’s lost—from the sound of a whisper to seeing a sky full of stars, and what she’s found in return—an exquisite sense of intimacy with those she is closest to, a love of silence, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice.Not Fade Away is both a memoir of the senses and a unique look at the obstacles we all face—physical, psychological, and philosophical—exploring the extraordinary powers of memory, love, and perseverance. It is a gripping story, an offering of hope and motivation, and an exquisite reminder to live each day to its fullest.

Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance


Ady Barkan - 2019
    But one day, he noticed a troubling weakness in his hand. At first, he brushed it off as carpal tunnel syndrome, but after a week of neurological exams and two MRIs, he learned the cause of the problem: amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease. At age thirty-two, Ady was given just three to four years to live. Yet despite the devastating diagnosis, he refused to let his remaining days go to waste. Eyes to the Wind is a rousing memoir featuring intertwining storylines about determination, perseverance, and how to live a life filled with purpose and intention. The first traces Ady’s battle with ALS: how he turned the initial shock and panic from his diagnosis into a renewed commitment to social justice—not despite his disability but because of it. The second, told in flashbacks, illustrates Ady’s journey from a goofy political nerd to a prominent figure in the enduring fight for equity and justice whose “selfless activism fighting to make health care a right should be an inspiration to us all” (Senator Bernie Sanders). From one of today’s most vocal advocates for social justice, Eyes to the Wind’s “primary question is existential: how to live when you are dying? Barkan’s answer is to share, open up, act, and capital-R Resist, and his memoir, clearly and candidly written, establishes a legacy” (Booklist).

Look Me in the Eye: My Life with Asperger's


John Elder Robison - 2007
    It was no wonder he gravitated to machines, which could, at least, be counted on.After fleeing his parents and dropping out of high school, his savant-like ability to visualize electronic circuits landed him a gig with KISS, for whom he created their legendary fire-breathing guitars. Later, he drifted into a “real” job, as an engineer for a major toy company. But the higher Robison rose in the company, the more he had to pretend to be “normal” and do what he simply couldn’t: communicate. It wasn’t worth the paycheck.It was not until he was forty that an insightful therapist told him he had the form of autism called Asperger’s syndrome. That understanding transformed the way Robison saw himself—and the world.Look Me in the Eye is the moving, darkly funny story of growing up with Asperger’s at a time when the diagnosis simply didn’t exist. A born storyteller, Robison takes you inside the head of a boy whom teachers and other adults regarded as “defective,” who could not avail himself of KISS’s endless supply of groupies, and who still has a peculiar aversion to using people’s given names (he calls his wife “Unit Two”). He also provides a fascinating reverse angle on the younger brother he left at the mercy of their nutty parents—the boy who would later change his name to Augusten Burroughs and write the bestselling memoir Running with Scissors.Ultimately, this is the story of Robison’s journey from his world into ours, and his new life as a husband, father, and successful small business owner—repairing his beloved high-end automobiles. It’s a strange, sly, indelible account—sometimes alien, yet always deeply human.

The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future


Joselin Linder - 2017
    After years of misdiagnoses, doctors discovered a deadly blockage in her liver. Struggling to find  an explanation for her unusual condition, Joselin compared the medical chart of her father—who had died from a mysterious disease, ten years prior—with that of an uncle who had died under similarly strange circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms similar to hers before her death. Clearly, this was more than a fluke. Setting out to build a more complete picture of the illness that haunted her family, Joselin approached Dr. Christine Seidman, the head of a group of world-class genetic researchers at Harvard Medical School, for help. Dr. Seidman had been working on her family’s case for twenty years and had finally confirmed that fourteen of Joselin’s relatives carried something called a private mutation—meaning that they were the first known people to experience the baffling symptoms of a brand new genetic mutation. Here, Joselin tells the story of their gene: the lives it claimed and the future of genomic medicine with the potential to save those that remain. Digging into family records and medical history, conducting interviews with relatives and friends, and reflecting on her own experiences with the Harvard doctor, Joselin pieces together the lineage of this deadly gene to write an exploration of family, history, and love.

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 Valedictorian of Being Dead: The True Story of Dying Ten Times to Live


Heather B. Armstrong - 2019
    Armstrong writes about her experience as one of only a few people to participate in an experimental treatment for depression involving ten rounds of a chemically induced coma approximating brain death.For years, Heather B. Armstrong has alluded to her struggle with depression on her website. But in 2016, Heather found herself in the depths of a depression she just couldn’t shake, an episode darker and longer than anything she had previously experienced. This book recalls the torturous eighteen months of suicidal depression she endured and the month-long experimental study in which doctors used propofol anesthesia to quiet all brain activity for a full fifteen minutes before bringing her back from a flatline. Ten times. The experience wasn’t easy. Not for Heather or her family. But a switch was flipped, and Heather hasn’t experienced a single moment of suicidal depression since. The Valedictorian of Being Dead brings to light a groundbreaking new treatment for depression.

The Elephant in the Room: One Fat Man's Quest to Get Smaller in a Growing America


Tommy Tomlinson - 2019
    My BMI is 60.7. My shirts are size XXXXXXL, which the big-and-tall stores shorten to 6X. I’m 6-foot-1, or 73 inches tall. My waist is 60 inches around. I’m nearly a sphere. Those are the numbers. This is how it feels… So begins The Elephant in the Room, Tommy Tomlinson’s remarkably intimate and insightful memoir of his life as a fat man. When he was almost fifty years old, Tomlinson weighed an astonishing—and dangerous—460 pounds, at risk for heart disease, diabetes, and stroke, unable to climb a flight of stairs without having to catch his breath, or travel on an airplane without buying two seats. Raised in a family that loved food, he had been aware of the problem for years, seeing doctors and trying diets from the time he was a preteen. But nothing worked, and every time he tried to make a change, it didn’t go the way he planned—in fact, he wasn’t sure that he really wanted to change.In The Elephant in the Room, Tomlinson chronicles his lifelong battle with weight in a voice that combines the urgency of Roxane Gay’s Hunger with the intimacy of Rick Bragg’s All Over but the Shoutin’. He also hits the road to meet other members of the plus-sized tribe in an attempt to understand how, as a nation, we got to this point. From buying a FitBit and setting exercise goals to contemplating the Heart Attack Grill in Las Vegas, America’s “capital of food porn,” and modifying his own diet, Tomlinson brings us along on a candid and sometimes brutal look at the everyday experience of being constantly aware of your size. Over the course of the book, he confronts these issues head-on and chronicles the practical steps he has to take—big and small—to lose weight by the end.Affecting and searingly honest, The Elephant in the Room is a powerful memoir that will resonate with anyone who has grappled with addiction, shame, or self-consciousness. It is also a literary triumph that will stay with readers long after the last page.

My Lovely Wife in the Psych Ward


Mark Lukach - 2017
    They fell in love at eighteen, married at twenty-four, and were living their dream life in San Francisco. When Giulia was twenty-seven, she suffered a terrifying and unexpected psychotic break that landed her in the psych ward for nearly a month. One day she was vibrant and well-adjusted; the next she was delusional and suicidal, convinced that her loved ones were not safe.Eventually, Giulia fully recovered, and the couple had a son. But, soon after Jonas was born, Giulia had another breakdown, and then a third a few years after that. Pushed to the edge of the abyss, everything the couple had once taken for granted was upended.A story of the fragility of the mind, and the tenacity of the human spirit, My Lovely Wife in the Psych Ward is, above all, a love story that raises profound questions: How do we care for the people we love? What and who do we live for? Breathtaking in its candor, radiant with compassion, and written with dazzling lyricism, Lukach’s is an intensely personal odyssey through the harrowing years of his wife’s mental illness, anchored by an abiding devotion to family that will affirm readers’ faith in the power of love.

The Language of Kindness: A Nurse's Story


Christie Watson - 2018
    She takes us by her side down hospital corridors to visit the wards and meet her unforgettable patients.In the neonatal unit, premature babies fight for their lives, hovering at the very edge of survival, like tiny Emmanuel, wrapped up in a sandwich bag. On the cancer wards, the nurses administer chemotherapy and, long after the medicine stops working, something more important--which Watson learns to recognize when her own father is dying of cancer. In the pediatric intensive care unit, the nurses wash the hair of a little girl to remove the smell of smoke from the house fire. The emergency room is overcrowded as ever, with waves of alcohol and drug addicted patients as well as patients like Betty, a widow suffering chest pain, frail and alone. And the stories of the geriatric ward--Gladys and older patients like her--show the plight of the most vulnerable members of our society.

When Breath Becomes Air


Paul Kalanithi - 2016
    One day he was a doctor treating the dying, and the next he was a patient struggling to live. And just like that, the future he and his wife had imagined evaporated. When Breath Becomes Air chronicles Kalanithi's transformation from a naïve medical student "possessed," as he wrote, "by the question of what, given that all organisms die, makes a virtuous and meaningful life" into a neurosurgeon at Stanford working in the brain, the most critical place for human identity, and finally into a patient and new father confronting his own mortality. What makes life worth living in the face of death? What do you do when the future, no longer a ladder toward your goals in life, flattens out into a perpetual present? What does it mean to have a child, to nurture a new life as another fades away? These are some of the questions Kalanithi wrestles with in this profoundly moving, exquisitely observed memoir. Paul Kalanithi died in March 2015, while working on this book, yet his words live on as a guide and a gift to us all. "I began to realize that coming face to face with my own mortality, in a sense, had changed nothing and everything," he wrote. "Seven words from Samuel Beckett began to repeat in my head: 'I can't go on. I'll go on.'" When Breath Becomes Air is an unforgettable, life-affirming reflection on the challenge of facing death and on the relationship between doctor and patient, from a brilliant writer who became both.

The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After


Julie Yip-Williams - 2019
    What began as the chronicle of an imminent and early death became something much more--a powerful exhortation to the living.That Julie Yip-Williams survived infancy was a miracle. Born blind in Vietnam, she narrowly escaped euthanasia at the hands of her grandmother, only to flee with her family the political upheaval of her country in the late 1970s. Loaded into a rickety boat with three hundred other refugees, Julie made it to Hong Kong and, ultimately, America, where a surgeon at UCLA gave her partial sight. She would go on to become a Harvard-educated lawyer, with a husband, a family, and a life she had once assumed would be impossible. Then, at age thirty-seven, with two little girls at home, Julie was diagnosed with terminal metastatic colon cancer, and a different journey began.The Unwinding of the Miracle is the story of a vigorous life refracted through the prism of imminent death. When she was first diagnosed, Julie Yip-Williams sought clarity and guidance through the experience and, finding none, began to write her way through it--a chronicle that grew beyond her imagining. Motherhood, marriage, the immigrant experience, ambition, love, wanderlust, tennis, fortune-tellers, grief, reincarnation, jealousy, comfort, pain, the marvel of the body in full rebellion--this book is as sprawling and majestic as the life it records. It is inspiring and instructive, delightful and shattering. It is a book of indelible moments, seared deep--an incomparable guide to living vividly by facing hard truths consciously.With humor, bracing honesty, and the cleansing power of well-deployed anger, Julie Yip-Williams set the stage for her lasting legacy and one final miracle: the story of her life.