Like my main character, I’m a Norwegian writer with ties to the US, who grew up with various chronic illnesses. I discovered the reason for much of my trouble when I was diagnosed with endometriosis. Isolated and in pain, I have always turned to books. I craved seeing my life reflected. Since Please Read This Leaflet Carefully came out, I’ve heard from many readers. I hope that it can help people who haven’t seen themselves in art before. This list addresses the needs of a life with chronic illness and pain: guidance, darkness, humor, comfort, and poetry. I hope these books will help you as much as they did me.
I wrote...
Please Read This Leaflet Carefully: Keep This Leaflet. You May Need to Read It Again.
Please Read This Leaflet Carefully is a life told in reverse and a subversion of what we expect from stories of illness. Having been diagnosed with endometriosis in her twenties, we follow Laura Fjellstad in her struggle to live a normal life across New York, Paris, and Oslo, fueled by her belief that to survive her chronic illness she must be completely self-reliant.
Moving backwards through time from 2016 to 1995, we meet Laura’s younger selves: her healthier selves. Laura as a daughter, a figure skater, a lover, and a mother. To be devoured intensely in one sitting, Please Read This Leaflet Carefully is a remarkable debut novel with bracing emotional insights and piercing descriptions of pain that linger in one’s mind long after the last page.
Angels in America was the first place I saw a fuller depiction of life with serious illness, and it blew my mind. Prior, who has AIDS, is arguably the main character. The focus doesn’t cut away from him the second things get very bad. Instead, we stay and see him through. I believe deeply in the power of seeing one’s darkest moments honestly reflected in art. I first discovered Angels through the amazing TV series with Al Pacino and Meryl Streep and it broke my heart into a thousand pieces. When I later read the plays, I was amazed at how funny they are. The joke density is very high. The bleakness and pathos combined with incisive humor are what make these amazing works of art some of my all-time favorites.
Winner of the Pulitzer Prize for Drama Angels in America: A Gay Fantasia on National Themes includes Part One, Millennium Approaches and Part Two, Perestroika
“Glorious. A monumental, subversive, altogether remarkable masterwork…Details of specific catastrophes may have changed since this Reagan-era AIDS epic won the Pulitzer and the Tony, but the real cosmic and human obsessions—power, religion, sex, responsibility, the future of the world—are as perilous, yet as falling-down funny, as ever.” –Linda Winer, Newsday
"A vast, miraculous play... provocative, witty and deeply upsetting... a searching and radical rethinking of American political drama." - Frank Rich, New York Times
How to Be Sick is a soothing and strengthening book that offers tools that are useful for any creature living a life with a human body and heart. It contains many Buddhist-inspired mindfulness techniques that I use daily, such as ways to adjust one’s thoughts and approach, ways to work with acceptance and grief, and ways to find pleasure and joy when they are hard to come by.
A brand-new edition of the best-selling classic with added and updated practices.
In 2001, Toni Bernhard got sick and, to her and her partner’s bewilderment, stayed that way. As they faced the confusion, frustration, and despair of a life with sudden limitations—a life that was vastly different from the one they’d thought they’d have together—Toni had to learn how to be sick. In spite of her many physical and energetic restrictions (and sometimes, because of them), Toni learned how to live a life of equanimity, compassion, and joy. This book reminds us that our own inner freedom is limitless, regardless…
This collection, published by Bloodaxe Books, categorizes poems loosely by theme and contains a treasure trove of the best poems to help you keep on living when life is too hard. There is a wide range of themes, as well as some uplifting poems that explore everything beautiful about being alive.
Staying Alive is an international anthology of 500 life-affirming poems fired by belief in the human and the spiritual at a time when much in the world feels unreal, inhuman and hollow. These are poems of great personal force connecting our aspirations with our humanity, helping us stay alive to the world and stay true to ourselves. Many people turn to poetry only at unreal times, whether for consolation in loss or affirmation in love, or when facing other extremes and anxieties. Staying Alive includes many of the great modern love poems and elegies, but it also shows the power…
This is the first book where I read about experiences of childhood illness similar to my own. Reading it was both shocking and deeply cathartic in a way that felt almost dangerous. It is also a cold hard look at class, age, and intergenerational trauma in relation to health and healthcare in the US. It exists in its own category in my mind. All I can say is read it, just not on a bad pain day.
Diagnosed with cancer at age twelve and perilously pregnant at eighteen, surviving surgeries and violent accidents: sometimes you can't believe Bee Lavender is still alive; sometimes you think nothing could kill her. Bee Lavender holds nothing back as she recounts her life spent in and out of hospitals and her subsequent dissociation from her own body and emotions. She struggles with health problems from birth, which are compounded by her surroundings, including frequent encounters with street fights, domestic violence and poverty. Her voice is as strong as the front she puts up for the multitude of doctors she sees, and…
I was absolutely stunned when I read "Unspeakable Conversations" by Harriet McBryde Johnson, one of the many brilliant pieces included in this reader. My edition is from 2010, but new and updated editions have come out since. It explores questions of interdependency and independence, gender, the body, sexuality, biases in science and medicine, and physical disabilities, and investigates issues around pain, mental disability, and invisible disabilities.
Becoming familiar with some disability theories has been invaluable to me. My capacity to read myself as disabled has grown and still fluctuates. To know that sharp minds have been working on this and that it isn’t only a private issue but a political and theoretical one, one that can be marked by joy and humor as well as grief, struggle, and hardship, is immensely helpful.
The fifth edition of The Disability Studies Reader addresses the post-identity theoretical landscape by emphasizing questions of interdependency and independence, the human-animal relationship, and issues around the construction or materiality of gender, the body, and sexuality. Selections explore the underlying biases of medical and scientific experiments and explode the binary of the sound and the diseased mind. The collection addresses physical disabilities, but as always investigates issues around pain, mental disability, and invisible disabilities as well. Featuring a new generation of scholars who are dealing with the most current issues, the fifth edition continues the Reader's tradition of remaining timely,…
Two women, a century apart, seek to rebuild their lives after leaving their homelands. Arriving in tropical Singapore, they find romance, but also find they haven’t left behind the dangers that caused them to flee.
Haunted by the specter of terrorism after 9/11, Aislinn Givens leaves her New York career and joins her husband in Southeast Asia when he takes a job there. She acquires several paintings by a colonial-era British artist that she believes are a warning.
The artist, Elizabeth Pennington, tells her own tumultuous story through diary entries that end when World War I reaches the colony with catastrophic results. In the present, Aislinn and her husband learn that terrorism takes many shapes when they are ensnared by local political upheaval and corruption.
"Aislinn Givens leaves a settled life in Manhattan for an unsettled life in Singapore. That painting radiates mystery and longing. So does Clifford Garstang's vivid and simmering novel, The Last Bird of Paradise." –John Dalton, author of Heaven Lake and The Inverted Forest
Two women, nearly a century apart, seek to rebuild their lives when they reluctantly leave their homelands. Arriving in Singapore, they find romance in a tropical paradise, but also find they haven't left behind the dangers that caused them to flee.
In the aftermath of 9/11 and haunted by the specter of terrorism, Aislinn Givens leaves her…
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