As someone living with a disability, and a scholar, I have always looked to literature for hope. I have always searched for works that depict the human experience of illness and the power of the written word to get us through life’s adversities.
Literature anchored me as I sought to make sense of pain, loss, and life. When I wrote Head Above Water: Reflections on Illness (Feminist Press), I was reflecting on what keeps us afloat, what helps us survive, and how storytelling can be a tool that we use to keep going.
Here’s a list of the books that I carried on my journey, and would recommend to anyone thinking about the power of storytelling in our lives, whether we are affected by illness or not. Literature mirrors life, but even more so, it complements life. The following narratives epitomize the same belief: literature and writing are solace amidst the darkness of life. Whether confronted by illness or loneliness, the narrators in these books hold on only to the power of stories.
Read Dangerously: The Subversive Power of Literature in Troubled Times by Azar Nafisi
Azar Nafisi, the best-selling author of Reading Lolita in Tehran, writes about the necessity of literature in turbulent political climates by weaving together letters to her father, who taught her all about the power of literature in our lives. Nafisi structures the book in a very intimate and thought-provoking style, asking questions through reflections on powerful authors, including Margaret Atwood and Zora Neale Hurston. She composed the letters during the presidency of Donald Trump, asking necessary questions about literature’s capacity for resistance. In her book, she draws connections between Iran and the United States, her current home, making it well worth reading in the current climate.
The Cancer Journals by Audre Lorde
I promise this one is worth it. This book changed my life—it is about Lorde’s diagnosis of cancer, but more than that, it is about redemptive love, transformational love and healing, and the connections that we make in life. It celebrates female friendship, circles of community, and the power of hope in the face of racism, sexism, and ableism. She wrote it when she realized that there were no stories representing black women’s experiences with illness, sexuality, and the body. In the book, Lorde addresses the body, doctor-patient relationships, and the persistence of hope in her life. Juxtaposing journal entries, reflections, and social commentary, this book is legendary in its chronicling of pain and survival. A classic that continues to be read and taught, it changed the way we think about illness and narrating pain through storytelling and agency.
Why Be Happy When You Could Be Normal? by Jeanette Winterson
Established and prolific writer Jeanette Winterson reflects on her childhood and traumas in this engaging memoir. Winterson’s only work of narrative nonfiction, Why Be Happy When You Could Be Normal? considers the loneliness of being rejected by family, society, and loved ones. Growing up in a small town in North England, Winterson chronicles her painful past and desire to reconcile with her biological mother, as well as her own self. She turns to fiction and poetry for consolation and a sense of belonging, searching for universal themes of survival. In many ways, the book is about other books, and the transformational power of stories.
Reading Through the Night by Jane Tompkins
Jane Tompkins writes about her experience with chronic illness and reading in this captivating memoir. Tompkins, a literature professor, finds herself on the couch most of the time, unable to move, struggling with chronic fatigue—she can do nothing but read. She re-reads her favorite books and examines, along with the reader, the necessity of literary encounters, as well as the reactions she has while reading. Each narrative allows her to re-assess her life’s choices, her partnership, and her relationship with her mother. She finds literature to be a trigger for her memories, looking at authors like Henning Mankell, Ann Patchett, Elena Ferrante, and Anthony Trollope.
When Breath Becomes Air by Paul Kalanithi
When Breath Becomes Air by American neurosurgeon Paul Kalanithi is an autobiographical work that considers the importance of finding hope and beauty in the darkest times. This one is beautiful in its exploration of the overlap between literature and medicine. As a trained surgeon, Paul has always had a love for literature (he did obtain a Bachelor’s in English literature), and he spends many chapters ruminating on how our lives are similar to grand literary narratives. The book was published posthumously and remains a best-seller. It draws on his experience living with lung cancer and his relationships to those around him. In this book, literature remains as a very necessary tool for survival (not just his, but his loved ones too).
Living a Feminist Life by Sara Ahmed
For Sara Ahmed, a scholar of feminist theory and a queer woman of color, feminism is engrained within us, a life force that keeps us going. In her book, Ahmed moves away from the jargon of theory and argues that feminism is for everyday life. She looks at personal and painful examples of what it means to be a feminist today, how feminism can save us from loneliness and multiple losses, and how we can create toolboxes for survival in a patriarchal world. Along the way, she cites many examples of women authors, including trailblazing feminist Audre Lorde, who have helped her navigate the alienation she felt within society, her institution, and family.
The Critical Case of a Man Called K by Aziz Mohammed, translated by Humphrey Davies
This is a novel translated into English, originally written in Arabic by a Saudi author. The protagonist is diagnosed with cancer and is immediately shunned by his family, colleagues, and society at large. His only consolation is reading Franz Kafka’s works and he finds himself quickly developing an obsession with Kafka’s literary journey. As his illness progresses, he turns to Kafka’s diaries and summons strength from reading. Many other canonical texts are visited in this work as the protagonist tries to relate to authors and characters away from his painful reality. Mohammed’s book was shortlisted in 2018 for the International Prize for Arabic Fiction, known as the “Arabic Booker.”
King Lear: Shakespeare’s Dark Consolations by Arthur W. Frank
You don’t have to be familiar with Shakespeare’s work to enjoy this one. Arthur W. Frank, author of The Wounded Storyteller, returns with a meditation on the necessity of “vulnerable reading,” a term that he coins to explore how literature requires us to be readers open to change, and acknowledges our pain and vulnerabilities. Frank chronicles his experience with cancer and the loneliness that he felt while trying to navigate the medical community’s biases, as well as society’s stigmatization of illness. In Shakespeare’s words, he finds value in expression, bitterness, and loss.
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