There is no greater betrayal than the feeling that the body which houses you has failed you. There’s no estrangement from your own body or mind. You can’t block your own calls or send your ailments to junk mail. When I first learned the possibility that I carried a genetic mutation—the same one that killed my mother when I was a child—I’d never felt more trapped inside an impossible situation.
I sought books by others who had experienced what I was going through and, honestly, back in 2012 the pickings were pretty slim. Out of desperate loneliness, I started a blog without any readers and journaled notebooks of self pity I hope never again see the light of day. But over the past several years, other authors have written incredible stories of how they faced not only betrayal from their bodies or minds, but how this opened them up to new possibilities for themselves.
Now that I’ve written Living Proof: How Love Defied Genetic Legacy, I can see the symbiotic relationship between a physical or mental health challenge and writing one’s way toward new perspectives. When I first learned of my own genetic mutation, I just wanted to know how it would all end. Tapping into creativity in the face of bad medical news can’t necessarily change the outcome. But it offers connections to the larger world, and isn’t that why we turn to stories again and again?
Between Two Kingdoms by Suleika Jaouad
Suleika Jaouad was in college when her battle with leukemia started. In Between Two Kingdoms, Jaouad shows us how her illness impacted her family and the loving, youthful relationship that carried her through her treatment. When she had to be isolated during treatment, she filled her days with painting and journaling. Upon being declared cancer-free, Jaouad takes a road trip around the country, connecting with those who reached out during her periods of isolation. She demonstrates how even when your world feels unbearably small, tapping into your creativity can sustain you through even the darkest days.
Little Earthquakes by Sarah Mandel
A trauma psychologist and pregnant mother of a toddler, Sarah Mandel’s life changes when she discovers a lump in her breast. Almost immediately after giving birth, Mandel begins not only a treatment of chemotherapy and immunotherapy, but to imagine her family’s lives going on without her. To her shock, after three months of grueling treatments, her scans show no evidence of disease. Instead of the elation she would have expected upon learning this news, Mandel is left with a whiplash of grief she can’t control. Little Earthquakes examines how illness shakes the foundation of an entire life and forever changes the ways in which survivors face the world. Sarah sadly passed away in 2024, leaving her story as a legacy.
Knocked Down by Aileen Weintraub
Aileen Weintraub always prided herself on her independence and humor. But when this Jewish New Yorker falls in love with a man from upstate, she surprises herself by agreeing to move to his family’s farmhouse. Their charming life as newlyweds is upended when Aileen learns she must be placed on bedrest four months into her pregnancy. From her bedroom, Weintraub has nothing but time to question the professional and personal choices that led her into complete isolation in a community where she has no social connections. Broken into 38 chapters—or weeks, which is the length of a healthy, full-term pregnancy—Weintraub hilariously and honestly shows us that despite our best efforts, life has its own plans in store for all of us.
Before My Time: A Memoir of Love and Fate by Ami McKay
It seemed like someone was always dying of cancer in Ami McKay’s family. Otherwise healthy people, often young, saw their lives cut short throughout her family tree. This family curse caught the attention of a doctor after her great aunt told him she expected to die young. Before My Time tells a multi-generational story of the family who led to the medical breakthrough of dianosing people with Lynch syndrome and McKay’s own experience of living with this genetic predisposition to cancer. If it sounds heavy, that’s because it is. And yet, through lucid storytelling and lovable characters, McKay shows the human side of medical research and its impact on future generations.
The Year of the Horses by Courtney Maum
The Year of the Horses starts with Courtney Maum’s young daughter refusing to put on a sock. But a sock is never just a sock. This beautiful metaphor of being in a life that doesn’t fit right catapults Maum’s journey to examine her growing feelings of depression. When standard medical care doesn’t offer the balm she needs, Maum seeks to remember a time when she felt as joyful as she did on the back of a horse as a child. This book moves back and forth through Maum’s challenging childhood and teen years and her grown-up desire to reclaim her sense of self. By introducing readers to the world of horsemanship, Maum shows us that sometimes wisdom isn’t always about growing older—it can be about giving our inner child (and animal) room to play.
The Family Gene by Joselin Linder
Like many women in their twenties with mysterious symptoms, Joselin Linder faced years of misdiagnoses. Upon discovering a rare blockage in her liver, she reckons with her father’s death ten years earlier and the possibility that she could face the same fate. As Linder pieces together her family’s medical history, she sees a connection she can’t ignore—but also one that hasn’t yet been validated scientifically. Written like a mystery, Linder shares what it’s like to discover, diagnose, and treat rare diseases. She explores the power of genomics, its implications in real-life decision making for people with genetic diseases, and the deeply personal ethical considerations this knowledge forces patients to confront.
Crybaby by Cheryl E. Klein
Cheryl E. Klein wants a baby. She and her partner try everything for her to get pregnant, and face the physical and emotional toll of infertility, IVF, miscarriage, and breast cancer. After wondering if they’re even fit to become parents, the couple warily enters the world of open adoption, facing the challenges of bureaucracy and the steep financial and emotional risks of potential matches that fall through—all the while acknowledging an imbalanced system in which birth mothers and adoptive mothers can feel as though they’ve been pitted against each other. With humor and irony, Klein laments how deliberate same-sex couples need to be in their desire to grow their families and how this pressure can cause fissures in even the strongest relationships, making you wonder if the life you’ve been working toward is worth its cost.
In Love by Amy Bloom
In the most straightforward, tightest way possible, Amy Bloom shares the heartbreaking story of helping her husband, Brian, end his life by doctor-assisted suicide in the wake of receiving a diagnosis for dementia. She walks readers through her journey of finding a way to honor this last wish as their mutual grief grows. Bloom shows us the beauty and honesty within their marriage as the secret plan they plotted kept moving forward. Throughout the entire story, the reader knows the painful destination they’re heading towards, and yet you keep going, drawn in by Bloom’s humor and warmth. Using Brian’s story, Bloom shows us how challenging it is to make dignified decisions about death, and how sometimes, the greatest love of all is letting someone go on their own terms.
The Invisible Kingdom by Meghan O’Rourke
For years, Meghan O’Rourke suffered debilitating bouts of pain, night sweats, brain fog, and the feeling that electric shocks were covering her body. In prose that flexes her poetic and journalistic skills, O’Rourke takes readers through her uncertainty, frustration, and moments of hopelessness in search of wellness. She shows us the doctors who dismissed her ailments; the long, winding road she took in search of understanding; and, finally, treating the tick-born infections and autoimmune disorders that caused them. She offers a glimpse into a world that the medical community tends to avoid, which is what life looks like for the millions of people for whom medicine cannot cure entirely. While the story centers on O’Rourke’s experiences, she puts it in the broader contexts of Western and alternative medicines, and offers insights into ways patients have been treated and let down by both.
Brain on Fire: My Month of Madness by Susannah Cahalan
Brain on Fire starts with 24 year-old Susannah Cahalan waking up in a hospital, completely forgetting how she landed there. She takes readers through the previous month of strange behaviors ranging from paranoia, outbursts of giggles, lack of hunger, and suddenly becoming unable to do her job. Once hospitalized, doctors aren’t sure what to make of her. Cahalan’s case appears to be a psychiatric one, but over the course of a month, her condition becomes increasingly challenging to treat. As her speech and movement faculties begin to fail, her family refuses to believe she isn’t still in there, trying to return to them. Using her training as a journalist, Cahalan shows us just how hard it can be for an otherwise healthy, young woman to be taken seriously in a medical context, and how easy it would be to slip through the cracks.
