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.

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.

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain


Abby Norman - 2018
    She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis.In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.

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.

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.

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.

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.

Smoke Gets in Your Eyes & Other Lessons from the Crematory


Caitlin Doughty - 2014
    Thrown into a profession of gallows humor and vivid characters (both living and very dead), Caitlin learned to navigate the secretive culture of those who care for the deceased.Smoke Gets in Your Eyes tells an unusual coming-of-age story full of bizarre encounters and unforgettable scenes. Caring for dead bodies of every color, shape, and affliction, Caitlin soon becomes an intrepid explorer in the world of the dead. She describes how she swept ashes from the machines (and sometimes onto her clothes) and reveals the strange history of cremation and undertaking, marveling at bizarre and wonderful funeral practices from different cultures.Her eye-opening, candid, and often hilarious story is like going on a journey with your bravest friend to the cemetery at midnight. She demystifies death, leading us behind the black curtain of her unique profession. And she answers questions you didn’t know you had: Can you catch a disease from a corpse? How many dead bodies can you fit in a Dodge van? What exactly does a flaming skull look like?Honest and heartfelt, self-deprecating and ironic, Caitlin's engaging style makes this otherwise taboo topic both approachable and engrossing. Now a licensed mortician with an alternative funeral practice, Caitlin argues that our fear of dying warps our culture and society, and she calls for better ways of dealing with death (and our dead).

Hello I Want to Die Please Fix Me: Depression in the First Person


Anna Mehler Paperny - 2019
    Illuminating, completely engaging—it's essential reading for all since we all know someone whose life, family or friends are touched by the disease that directly afflicts a fifth of Canadians. In her early twenties, while outwardly thriving in her dream job and enjoying warm familial support and a strong social network, award-winning journalist Anna Mehler Paperny found herself trapped by feelings of failure and despair. Her first suicide attempt—ingesting a deadly mix of sleeping pills and antifreeze—landed her in the ICU, followed by weeks of enforced detention that ran the gamut of horrifying, boring, hilarious, and absurd. This was Anna's entry into the labyrinthine psychiatric care system responsible for providing care to millions of Canadians.As she struggled to survive the psych ward and as an outpatient—enduring the "survivor's" shame of facing concerned family, friends, and co-workers; finding (or not) the right therapist, the right meds; staying healthy, insured, and employed—Anna could not help but turn her demanding journalist's eye on her condition and on the system in which she found herself. She set off on a quest to "know her enemy," interviewing leading practitioners in the field across Canada and the US—from psychiatrists to neurological experts, brain-mapping pioneers to heroic family practitioners, and others dabbling in novel hypotheses. She reveals in courageously frank detail her own experiences with the pharmacological pitfalls and side effects of long-term treatment, and offers moving case studies of conversations with others, opening wide a window into how we treat (and fail to treat) the disease that accounts for more years swallowed up by disability than any other in the world.

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 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 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.

The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery


Barbara K. Lipska - 2018
    As the cancer progressed and was treated, the author experienced behavioral and cognitive symptoms connected to a range of mental disorders, including her professional specialty, schizophrenia. Lipska's family and associates were alarmed by the changes in her behavior, which she failed to acknowledge herself. Gradually, after a course of immunotherapy, Lipska returned to normal functioning, recalled her experience and, through her knowledge of neuroscience, identified the ways in which her brain changed during treatment. Lipska admits her condition was unusual; after recovery she was able to return to her research and resume her athletic training and compete in a triathalon. Most patients with similar brain cancers rarely survive to describe their ordeal. Lipska's memoir, coauthored with journalist McArdle, shows that strength and courage but also a encouraging support network are vital to recovery

Prognosis: A Memoir of My Brain


Sarah Vallance - 2019
    The next morning, things take a sharp turn as she’s led from work to the emergency room. By the end of the week, a neurologist delivers a devastating prognosis: Sarah suffered a traumatic brain injury that has caused her IQ to plummet, with no hope of recovery. Her brain has irrevocably changed.Afraid of judgment and deemed no longer fit for work, Sarah isolates herself from the outside world. She spends months at home, with her dogs as her only source of companionship, battling a personality she no longer recognizes and her shock and rage over losing simple functions she’d taken for granted. Her life is consumed by fear and shame until a chance encounter gives Sarah hope that her brain can heal. That conversation lights a small flame of determination, and Sarah begins to push back, painstakingly reteaching herself to read and write, and eventually reentering the workforce and a new, if unpredictable, life.In this highly intimate account of devastation and renewal, Sarah pulls back the curtain on life with traumatic brain injury, an affliction where the wounds are invisible and the lasting effects are often misunderstood. Over years of frustrating setbacks and uncertain triumphs, Sarah comes to terms with her disability and finds love with a woman who helps her embrace a new, accepting sense of self.

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist


Judith Heumann - 2020
    From fighting to attend grade school after being described as a "fire hazard" to later winning a lawsuit against the New York City school system for denying her a teacher's license because of her paralysis, Judy's actions set a precedent that fundamentally improved rights for disabled people.As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples' rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act.Candid, intimate, and irreverent, Judy Heumann's memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.