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.

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.

Final Exam: A Surgeon's Reflections on Mortality


Pauline W. Chen - 2006
    What she did not count on was how much death would be a part of her work. Almost immediately, Chen found herself wrestling with medicine’s most profound paradox, that a profession premised on caring for the ill also systematically depersonalizes dying. Final Exam follows Chen over the course of her education, training, and practice as she grapples at strikingly close range with the problem of mortality, and struggles to reconcile the lessons of her training with her innate knowledge of shared humanity, and to separate her ideas about healing from her fierce desire to cure.From her first dissection of a cadaver in gross anatomy to the moment she first puts a scalpel to a living person; from the first time she witnesses someone flatlining in the emergency room to the first time she pronounces a patient dead, Chen is struck by her own mortal fears: there was a dying friend she could not call; a young patient’s tortured death she could not forget; even the sense of shared kinship with a corpse she could not cast aside when asked to saw its pelvis in two. Gradually, as she confronts the ways in which her fears have incapacitated her, she begins to reject what she has been taught about suppressing her feelings for her patients, and she begins to carve out a new role for herself as a physician and as human being. Chen’s transfixing and beautiful rumination on how doctors negotiate the ineluctable fact of death becomes, in the end, a brilliant questioning of how we should live.Moving and provocative, motored equally by clinical expertise and extraordinary personal grace, this is a piercing and compassionate journey into the heart of a world that is hidden and yet touches all of our lives. A superb addition to the best medical literature of our time.

Chasing My Cure: A Doctor's Race to Turn Hope into Action


David Fajgenbaum - 2019
    But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance, the equivalent of a dramatic play to second the game into overtime.Miraculously, Fajgenbaum survived--only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself.More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide.

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.

My Lobotomy: A Memoir


Howard Dully - 2007
    Yet somehow, this normal boy became one of the youngest people on whom Dr. Walter Freeman performed his barbaric transorbital—or ice pick—lobotomy.Abandoned by his family within a year of the surgery, Howard spent his teen years in mental institutions, his twenties in jail, and his thirties in a bottle. It wasn’t until he was in his forties that Howard began to pull his life together. But even as he began to live the “normal” life he had been denied, Howard struggled with one question: Why?“October 8, 1960. I gather that Mrs. Dully is perpetually talking, admonishing, correcting, and getting worked up into a spasm, whereas her husband is impatient, explosive, rather brutal, won’t let the boy speak for himself, and calls him numbskull, dimwit, and other uncomplimentary names.”There were only three people who would know the truth: Freeman, the man who performed the procedure; Lou, his cold and demanding stepmother who brought Howard to the doctor’s attention; and his father, Rodney. Of the three, only Rodney, the man who hadn’t intervened on his son’s behalf, was still living. Time was running out. Stable and happy for the first time in decades, Howard began to search for answers. “December 3, 1960. Mr. and Mrs. Dully have apparently decided to have Howard operated on. I suggested [they] not tell Howard anything about it.”Through his research, Howard met other lobotomy patients and their families, talked with one of Freeman’s sons about his father’s controversial life’s work, and confronted Rodney about his complicity. And, in the archive where the doctor’s files are stored, he finally came face to face with the truth.Revealing what happened to a child no one—not his father, not the medical community, not the state—was willing to protect, My Lobotomy exposes a shameful chapter in the history of the treatment of mental illness. Yet, ultimately, this is a powerful and moving chronicle of the life of one man. Without reticence, Howard Dully shares the story of a painfully dysfunctional childhood, a misspent youth, his struggle to claim the life that was taken from him, and his redemption.

The Immortal Life of Henrietta Lacks


Rebecca Skloot - 2010
    She was a poor Southern tobacco farmer who worked the same land as her enslaved ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia — a land of wooden quarters for enslaved people, faith healings, and voodoo — to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family — past and present — is inextricably connected to the history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

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."

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 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.

Life's Work: A Moral Argument for Choice


Willie Parker - 2017
    Willie Parker grew up in the Deep South, lived in a Christian household, and converted to an even more fundamentalist form of Christianity as a young man. But upon reading an interpretation of the Good Samaritan in a sermon by Dr. Martin Luther King, Jr., he realized that in order to be a true Christian, he must show compassion for all women regardless of their needs. In 2009, he stopped practicing obstetrics to focus entirely on providing safe abortions for the women who need help the most—often women in poverty and women of color—and in the hot bed of the pro-choice debate: the South. He soon thereafter traded in his private practice and his penthouse apartment in Hawaii for the life of an itinerant abortion provider, focusing most recently on women in the Deep South. In Life’s Work, Dr. Willie Parker tells a deeply personal and thought-provoking narrative that illuminates the complex societal, political, religious, and personal realities of abortion in the United States from the unique perspective of someone who performs them and defends the right to do so every day. He also looks at how a new wave of anti-abortion activism, aimed at making incremental changes in laws and regulations state by state, are slowly chipping away at the rights of women to control their own lives. In revealing his daily battle against mandatory waiting periods and bogus rules governing the width of hallways, Dr. Parker uncovers the growing number of strings attached to the right to choose and makes a powerful Christian case for championing reproductive rights.

With the End in Mind: Dying, Death, and Wisdom in an Age of Denial


Kathryn Mannix - 2017
    Kathryn Mannix has studied and practiced palliative care for thirty years. In With the End in Mind , she shares beautifully crafted stories from a lifetime of caring for the dying, and makes a case for the therapeutic power of approaching death not with trepidation, but with openness, clarity, and understanding. Weaving the details of her own experiences as a caregiver through stories of her patients, their families, and their distinctive lives, Dr. Mannix discusses the universal, but deeply personal, process of dying. With meditations on life, death, and the space between them, With the End in Mind describes the possibility of meeting death gently, with forethought and preparation, and shows the unexpected beauty, dignity, and profound humanity of life coming to an end.

The End of Your Life Book Club


Will Schwalbe - 2012
    Mary Anne Schwalbe is waiting for her chemotherapy treatments when Will casually asks her what she's reading. The conversation they have grows into tradition: soon they are reading the same books so they can have something to talk about in the hospital waiting room. The ones they choose range from classic to popular, from fantastic to spiritual, and we hear their passion for reading and their love for each other in their intimate and searching discussions. A profoundly moving testament to the power of love between a child and parent, and the power of reading in our lives.

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.