Book picks similar to
Carrier: Untangling the Danger in My DNA by Bonnie J. Rough
memoir
genetics
non-fiction
nonfiction
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.
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.
Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome
Jennifer Graf Groneberg - 2008
You need a new road map, and fast...When Jennifer Groneberg and her husband learned they'd be having twin boys, their main concern was whether they'd need an addition on their house. Then, five days after Avery and Bennett were born, Avery was diagnosed with Down syndrome.Here, Jennifer shares the story of what followed. She dealt with doctors-some who helped, and some who were disrespectful or even dangerous. She saw some relationships in her life grow stronger, while severing ties with people who proved unsupportive. And she continues to struggle to find balance in the hardships and joys of raising a child with special needs. This book is a resource, a companion for parents, and above all, a story of the love between a mother and her son-as she learns that Avery is exactly the child she never knew she wanted.
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 Still Point of the Turning World
Emily Rapp - 2013
But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future.The Still Point of the Turning World is the story of a mother’s journey through grief and beyond it. Rapp’s response to her son’s diagnosis was a belief that she needed to “make my world big”—to make sense of her family’s situation through art, literature, philosophy, theology and myth. Drawing on a broad range of thinkers and writers, from C.S. Lewis to Sylvia Plath, Hegel to Mary Shelley’s Frankenstein, Rapp learns what wisdom there is to be gained from parenting a terminally ill child. In luminous, exquisitely moving prose she re-examines our most fundamental assumptions about what it means to be a good parent, to be a success, and to live a meaningful life.
What Made Maddy Run: The Secret Struggles and Tragic Death of an All-American Teen
Kate Fagan - 2017
This was a girl who succeeded at everything she tried, and who was only getting started.But when Maddy began her long-awaited college career, her parents noticed something changed. Previously indefatigable Maddy became withdrawn, and her thoughts centered on how she could change her life. In spite of thousands of hours of practice and study, she contemplated transferring from the school that had once been her dream. When Maddy's dad, Jim, dropped her off for the first day of spring semester, she held him a second longer than usual. That would be the last time Jim would see his daughter.What Made Maddy Run began as a piece that Kate Fagan, a columnist for espnW, wrote about Maddy's life. What started as a profile of a successful young athlete whose life ended in suicide became so much larger when Fagan started to hear from other college athletes also struggling with mental illness. This is the story of Maddy Holleran's life, and her struggle with depression, which also reveals the mounting pressures young people, and college athletes in particular, face to be perfect, especially in an age of relentless connectivity and social media saturation.
January First: A Child's Descent into Madness and Her Father's Struggle to Save Her
Michael Schofield - 2012
In January's case, she is hallucinating 95 percent of the time that she is awake. Potent psychiatric drugs that would level most adults barely faze her. January, "Jani" to her family, has literally hundreds of imaginary friends. They go by names like 400-the-Cat, 100 Degrees, and 24 Hours and live on an island called "Calalini," which she describes as existing "on the border of my world and your world." Some of these friends are good, and some of them, such as 400, are very bad. They tell her to jump off buildings, attack her brother, and scream at strangers.In the middle of these never-ending delusions, hallucinations, and paroxysms of rage are Jani's parents, who have gone to the ends of the earth to keep both of their children alive and unharmed. They live in separate one-bedroom apartments in order to keep her little brother, Bohdi, safe from his big sister—and wage a daily war against a social system that has all but completely failed them. January First is the story of the daily struggles and challenges they face as they do everything they can to help their daughter while trying to keep their family together. It is the inspiring tale of their resolute determination and faith.
Maybe You Should Talk to Someone: A Therapist, Her Therapist, and Our Lives Revealed
Lori Gottlieb - 2019
One day, Lori Gottlieb is a therapist who helps patients in her Los Angeles practice. The next, a crisis causes her world to come crashing down. Enter Wendell, the quirky but seasoned therapist in whose office she suddenly lands. With his balding head, cardigan, and khakis, he seems to have come straight from Therapist Central Casting. Yet he will turn out to be anything but. As Gottlieb explores the inner chambers of her patients' lives -- a self-absorbed Hollywood producer, a young newlywed diagnosed with a terminal illness, a senior citizen threatening to end her life on her birthday if nothing gets better, and a twenty-something who can't stop hooking up with the wrong guys -- she finds that the questions they are struggling with are the very ones she is now bringing to Wendell. With startling wisdom and humor, Gottlieb invites us into her world as both clinician and patient, examining the truths and fictions we tell ourselves and others as we teeter on the tightrope between love and desire, meaning and mortality, guilt and redemption, terror and courage, hope and change.Maybe You Should Talk to Someone is revolutionary in its candor, offering a deeply personal yet universal tour of our hearts and minds and providing the rarest of gifts: a boldly revealing portrait of what it means to be human, and a disarmingly funny and illuminating account of our own mysterious lives and our power to transform them.
Raising Henry: A Memoir of Motherhood, Disability, and Discovery
Rachel Adams - 2013
She had an adoring husband, a beautiful two-year-old son, a sunny Manhattan apartment, and a position as a tenured professor at Columbia University. Everything changed with the birth of her second child, Henry. Just minutes after he was born, doctors told her that Henry had Down syndrome, and she knew that her life would never be the same. In this honest, self-critical, and surprisingly funny book, Adams chronicles the first three years of Henry’s life and her own transformative experience of unexpectedly becoming the mother of a disabled child. A highly personal story of one family’s encounter with disability, Raising Henry is also an insightful exploration of today’s knotty terrain of social prejudice, disability policy, genetics, prenatal testing, medical training, and inclusive education. Adams untangles the contradictions of living in a society that is more enlightened and supportive of people with disabilities than ever before, yet is racing to perfect prenatal tests to prevent children like Henry from being born. Her book is gripping, beautifully written, and nearly impossible to put down. Once read, her family’s story is impossible to forget.
Breathing for a Living: A Memoir
Laura Rothenberg - 2003
Twenty-one-year-old Laura Rothenberg has always tried to live a normal life--even with lungs that betray her, and a sober awareness that she may not live to see her next birthday. Like most people born with cystic fibrosis, the chronic disease that affects lungs and other organs, Rothenberg struggles to come to grips with a life that has already been compromised in many ways. Sometimes healthy and able to go to school, other times hospitalized for months on end, Rothenberg finds solace in keeping a diary. In her writing, she can be open, honest, and irreverent, like the young person she is. Yet mixed in with this voice is an incredible maturity about her mortality. The memoir opens with Rothenberg's decision to accept a lung transplant. From the waiting--and all it implies to the surgery, recovery, and her new life, Rothenberg muses on mortality in journal entries and poetry. Through it all, she reveals a will and temperament that is strong and wise despite her years. Laura Rothenberg's story, recorded and shared on NPR's Radio Diaries, was awarded the prestigious Third Coast Audio Festival Award, it also received an unprecedented listener response and generated more e-mail than any other story the producers could recall. Rothenberg's story was also featured in the New York Times and U.S. News & World Report.
Pretty is What Changes: Tough Choices, the Breast Cancer Gene, and Learning How to Live in the DNA Age
Jessica Queller - 2008
The results come back positive, putting her at a terrifyingly elevated risk of developing breast cancer before the age of fifty and ovarian cancer in her lifetime. Thirty-four, unattached, and yearning for marriage and a family of her own, Queller faces an agonizing choice: a lifetime of vigilant screenings and a commitment to fight the disease when caught, or its radical alternative—a prophylactic double mastectomy that would effectively restore life to her, even as it would challenge her most closely held beliefs about body image, identity, and sexuality. Superbly informed and armed with surprising wit and style, Queller takes us on an odyssey from the frontiers of science to the private interiors of a woman’s life. Pretty Is What Changes is an absorbing account of how she reaches her courageous decision and its physical, emotional, and philosophical consequences. It is also an incredibly moving story of what we inherit from our parents and how we fashion it into the stuff of our own lives, of mothers and daughters and sisters, and of the sisterhood that forms when women are united in battle against a common enemy. Without flinching, Jessica Queller answers a question we may one day face for ourselves: If genes can map our fates and their dark knowledge is offered to us, will we willingly trade innocence for the information that could save our lives?
This Close to Happy: A Reckoning with Depression
Daphne Merkin - 2017
She recounts the travails of growing up in a large, affluent family where there was a paucity of love and of basics such as food and clothing despite the presence of a chauffeur and a cook. She goes on to recount her early hospitalization for depression in poignant detail, as well as her complex relationship with her mercurial, withholding mother.Along the way Merkin also discusses her early, redemptive love of reading and gradual emergence as a writer. She eventually marries, has a child, and suffers severe postpartum depression, for which she is again hospitalized. Merkin also discusses her visits to various therapists and psychopharmocologists, which enables her to probe the causes of depression and its various treatments. The book ends in the present, where the writer has learned how to navigate her depression, if not “cure” it, after a third hospitalization in the wake of her mother’s death.
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.
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
Naoki Higashida - 2005
Parents and family members who never thought they could get inside the head of their autistic loved one, at last, have a way to break through to the curious, subtle, and complex life within.Using an alphabet grid to painstakingly construct words, sentences, and thoughts that he is unable to speak out loud, Naoki answers even the most delicate questions that people want to know. Questions such as: “Why do people with autism talk so loudly and weirdly?” “Why do you line up your toy cars and blocks?” “Why don’t you make eye contact when you’re talking?” and “What’s the reason you jump?” (Naoki’s answer: “When I’m jumping, it’s as if my feelings are going upward to the sky.”) With disarming honesty and a generous heart, Naoki shares his unique point of view on not only autism but life itself. His insights—into the mystery of words, the wonders of laughter, and the elusiveness of memory—are so startling, so strange, and so powerful that you will never look at the world the same way again.
Genetic Rounds: A Doctor's Encounters in the Field that Revolutionized Medicine
Robert Marion - 2009
Robert Marion, whose bestselling book "The Intern Blues" is revered by doctors of all ages, offers a powerful and moving account of his experiences in modern genetics. His gripping stories illuminate a cutting-edge field of impossible moral complexities and incredible scientific breakthroughs that draw him deep into the lives of his patients and their families when they need him the most. Genetics is a specialty of secrets. After thirty years as a pediatric geneticist in New York City, Dr. Robert Marion knows things about his patients that their friends, their families, and even they themselves do not. Having access to this kind of inside information is at once a terrific honor and a terrible burden. It requires Dr. Marion to play detective, philosopher, physician, and friend, sometimes all over the course of a single visit.In "Genetic Rounds," he tells the surprising true stories of daily life as a clinical geneticist. From the girl whose bones break at the lightest touch to the boy who is unable to sweat, Dr. Marion imparts the life-long lessons he has learned from his most incredible cases. He walks us through perplexing medical puzzles that have sharpened his wit and transformed him into a Sherlock Holmes in his field. He shares ingenious practical insights that have changed his patients' lives. And he delves into the moral quandaries through which his patients in turn have changed his life: Should he wait until after Christmas to break bad news to a frightened family? Should he tell a close friend that his daughter may have a life-threatening, previously undiagnosed disease? And, most importantly, how can he persevere in a specialty that deals with so much heartbreak?The first book of its kind, "Genetic Rounds" is the story of a remarkable doctor in a field unlike any other. With unforgettable candor and compassion, Dr. Marion not only explores the human side of medicine: he shows what medicine can teach us about being human.""Genetic Rounds "is part medical detective story, part scientific tour de force, and part highly personal and emotional story of a doctor and the children and families who have shaped his career and his life in this fascinating field." --Perri Klass, MD, author of "Treatment Kind and Fair: Letters to a Young Doctor"From "Genetic Rounds""I've learned that in medicine, virtually anything is possible, that no matter how difficult or unlikely a situation might be, with hard work, perseverance, persistence, and the ability to work with people who are brilliant and creative, miracles can happen."Praise for "The Intern Blues""A candid . . . gripping account." --The New York Times Book Review"A thought-provoking study of real human beings." --Booklist"An important book for anyone contemplating the long, arduous task of becoming a doctor." --Library JournalPraise for "Learning to Play God""Clear, immediate and moving . . . provides as good a feel for the texture of medical training as any I've read." --The New York Times Book Review