Tender Points


Amy Berkowitz - 2015
    Named after the diagnostic criteria for fibromyalgia, the book-length lyric essay explores sexual violence, gendered illness, chronic pain, and patriarchy through the lenses of lived experience and pop culture (Twin Peaks, Teenage Mutant Ninja Turtles, noise music, etc.). Teaching Guide (or Book Club Guide) here: bit.ly/2aqJV2X

Disability Visibility: First-Person Stories from the Twenty-first Century


Alice WongChristie Thompson - 2020
    Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.

The Two Kinds of Decay


Sarah Manguso - 2008
    In this captivating story, Manguso recalls her struggle: arduous blood cleansings, collapsed veins, multiple chest catheters, depression, the deaths of friends and strangers, addiction, and, worst of all for a writer, the trite metaphors that accompany prolonged illness. A book of tremendous grace, The Two Kinds of Decay transcends the very notion of what an illness story can and should be.

On Being Ill


Virginia Woolf - 1930
    We cannot quote Shakespeare to describe a headache. We must, Woolf says, invent language to describe pain. And though illness enhances our perceptions, she observes that it reduces self-consciousness; it is "the great confessional." Woolf discusses the cultural taboos associated with illness and explores how illness changes the way we read. Poems clarify and astonish, Shakespeare exudes new brilliance, and so does melodramatic fiction!On Being Ill was published as an individual volume by Hogarth Press in 1930. While other Woolf essays, such as A Room of One’s Own and Three Guineas, were first published by Hogarth as individual volumes and have since been widely available, On Being Ill has been overlooked. The Paris Press edition features original cover art by Woolf’s sister, the painter Vanessa Bell. Hermione Lee’s Introduction discusses this extraordinary work, and explores Woolf’s revelations about poetry, language, and illness.

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.

Sitting Pretty: The View from My Ordinary Resilient Disabled Body


Rebekah Taussig - 2020
    None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling.Writing about the rhythms and textures of what it means to live in a body that doesn’t fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life.Disability affects all of us, directly or indirectly, at one point or another. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. Sitting Pretty challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story.

The Empathy Exams


Leslie Jamison - 2014
    She draws from her own experiences of illness and bodily injury to engage in an exploration that extends far beyond her life, spanning wide-ranging territory—from poverty tourism to phantom diseases, street violence to reality television, illness to incarceration—in its search for a kind of sight shaped by humility and grace.

The Collected Schizophrenias: Essays


Esmé Weijun Wang - 2019
    Schizophrenia is not a single unifying diagnosis, and Esme Weijun Wang writes not just to her fellow members of the "collected schizophrenias" but to those who wish to understand it as well. Opening with the journey toward her diagnosis of schizoaffective disorder, Wang discusses the medical community's own disagreement about labels and procedures for diagnosing those with mental illness, and then follows an arc that examines the manifestations of schizophrenia in her life. In essays that range from using fashion to present as high-functioning to the depths of a rare form of psychosis, and from the failures of the higher education system and the dangers of institutionalisation to the complexity of compounding factors such as PTSD and Lyme disease, Wang's analytical eye, honed as a former lab researcher at Stanford, allows her to balance research with personal narrative. An essay collection of undeniable power, The Collected Schizophrenias dispels misconceptions and provides insight into a condition long misunderstood.

Brilliant Imperfection: Grappling with Cure


Eli Clare - 2017
    It saves lives, manipulates lives, and prioritizes some lives over others. It provides comfort, makes profits, justifies violence, and promises resolution to body-mind loss. Clare grapples with this knot of contradictions, maintaining that neither an anti-cure politics nor a pro-cure worldview can account for the messy, complex relationships we have with our body-minds.The stories he tells range widely, stretching from disability stereotypes to weight loss surgery, gender transition to skin lightening creams. At each turn, Clare weaves race, disability, sexuality, class, and gender together, insisting on the nonnegotiable value of body-mind difference. Into this mix, he adds environmental politics, thinking about ecosystem loss and restoration as a way of delving more deeply into cure.Ultimately Brilliant Imperfection reveals cure to be an ideology grounded in the twin notions of normal and natural, slippery and powerful, necessary and damaging all at the same time.

Constellations


Sinéad Gleeson - 2019
    A map, a tracing of connections and a guide to looking at things from different angles. How do you tell the story of life that is no one thing? How do you tell the story of a life in a body, as it goes through sickness, health, motherhood? And how do you tell that story when you are not just a woman but a woman in Ireland? In these powerful and daring essays, Sinead Gleeson does that very thing. In doing so she delves into a range of subjects: art, illness, ghosts, grief, and our very ways of seeing. In writing that is in tradition of some of our finest writers such as Olivia Laing, Maggie O'Farrell, and Maggie Nelson, and yet still in her own spirited, warm voice, Gleeson takes us on a journey that is both personal and yet universal in its resonance.

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.

So Sad Today: Personal Essays


Melissa Broder - 2016
    In the fall of 2012, she went through a harrowing cycle of panic attacks and dread that wouldn't abate for months. So she began @sosadtoday, an anonymous Twitter feed that allowed her to express her darkest feelings, and which quickly gained a dedicated following. In So Sad Today, Broder delves deeper into the existential themes she explores on Twitter, grappling with sex, death, love, low self-esteem, addiction, and the drama of waiting for the universe to text you back. With insights as sharp as her humor, Broder explores—in prose that is both gutsy and beautiful, aggressively colloquial and achingly poetic—questions most of us are afraid to even acknowledge, let alone answer, in order to discover what it really means to be a person in this modern world.

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.

I'm Telling the Truth, but I'm Lying: Essays


Bassey Ikpi - 2019
    Four years later, she and her mother joined her father in Stillwater, Oklahoma —a move that would be anxiety ridden for any child, but especially for Bassey. Her early years in America would come to be defined by tension: an assimilation further complicated by bipolar II and anxiety that would go undiagnosed for decades.By the time she was in her early twenties, Bassey was a spoken word artist and traveling with HBO's Russell Simmons Def Poetry Jam, channeling her experiences into art. But something wasn’t right—beneath the façade of the confident performer, Bassey’s mental health was in a precipitous decline, culminating in a breakdown that resulted in hospitalization and a diagnosis of Bipolar II.Determined to learn from her experiences—and share them with others—Bassey became a mental health advocate and has spent the fourteen years since her diagnosis examining the ways mental health is inextricably intertwined with every facet of ourselves and our lives. Viscerally raw and honest, the result is an exploration of the stories we tell ourselves to make sense of who we are—and the ways, as honest as we try to be, each of these stories can also be a lie.