Illness As Muse: A Roundtable on Writing and Healing
“[H]ow astonishing,” wrote Virginia Woolf in her essay “On Being Ill,” from 1926, “when the lights of health go down, the undiscovered countries that are then disclosed …” Illness—however undesired, unpleasant, or inconvenient—has always been a muse to writers, yielding some of the greatest works in the literary canon. On the occasion of BLR’s 25th anniversary, we asked several notable writers to reflect on how writing has intersected with their experience of illness, grief, or healing. These writers, who’ve all been connected to BLR in some way over the years, affirm the reasons why we continue to publish creative writing on these themes.
Susannah Cahalan
Writing about my illness gave me the ability to return to a time when I felt the crushing weight of powerlessness and impose on it a sense of narrative structure, which gave me a feeling of control, at least in retrospect. When I was sick with autoimmune encephalitis, I behaved in confusing and embarrassing ways. I did things I still don’t understand. I did things that I don’t remember. I did things that I do remember but wish I didn’t. There is a lot of shame in this remembering, especially when we’re talking about psychosis and other psychiatric symptoms. You feel it’s your fault. That there’s something wrong with you on a soul level. But writing my memoir and really understanding the role of, for one example, glutamate in the brain and how it affects behavior and memory, gave me a sense of wonder of my own body and empowered me with the knowledge that allowed me to examine my illness as an experience, as an outsider looking in. Returning to the illness with that distance allowed me to establish a narrative frame, which gave me the freedom to let go of some of the guilt and shame around it. Learning about how the brain works and breaks also helped me heal. I don’t think I would have ever properly integrated my experience with autoimmune encephalitis without having written about it.
Susannah Cahalan is the author of Brain on Fire, The Great Pretender, and The Acid Queen.
Sarah Ruhl
Writing about illness and the body has had two massive consequences for me. First, the process of writing about my unresolved Bell’s palsy gave me a narrative way to understand the emotional distress that I’d done my best to shove far below the surface. I’d become, in some sense, a different person once I’d lost my smile. Writing into the body knit those two selves together and gave me the chance to put chronic illness—quite literally—in the past tense, and healing in the present tense.
Writing about facial paralysis may have also saved my health in a much more concrete way. A reader, an infectious disease doctor, tracked me down after reading my book Smile. He was convinced that I had chronic neurological Lyme disease, and that was the reason my paralysis was not improving. I told him that was impossible, as I’d already had the bloodwork, and it was negative, even though I’d been exposed to Lyme in the Long Island woods when my husband came down with the classic bull’s eye rash. This reader-doctor convinced me to get better testing at Stonybrook Hospital. There, I had a spinal tap, and indeed, I had Lyme disease. It took twelve years and writing a book to finally get a diagnosis. Were it not for writing about my illness, I never would have found relief. I am forever grateful.
Sarah Ruhl is a playwright, poet, and author of Smile and Lessons from My Teachers.
Damon Tweedy
Writing has been a companion throughout my three-decade journey in medicine. My experience of grief and illness is what brought me to it as a young medical student. At the time, fresh off my grandmother’s death from a stroke and congestive heart failure, I was diagnosed with hypertension and early-stage kidney disease. I had entered medical school envisioning a training experience that equipped me to treat others in need, but quickly found myself in the patient chair, worried that I was the one whose life might be altered by illness. Scientific data and clinical research, what I was learning about in my medical studies, offered me statistics on these conditions and the latest treatment options, but also brought uncertainty and fear. Only through writing, transmitting my internal tensions to the page did I find a way to begin to soothe those edges.
These same processes have been at work in my clinical career, as I navigate my role as physician, bearing witness to human suffering while reflecting hope, to the extent possible. In medicine, people often come to us during the worst periods of their lives. But in a healthcare system focused on production and efficiency, it is possible, common even, to become tired of these stories, to become jaded, and cynical. Putting words to a page forces me to articulate the specificity of that story. It reminds me that each person I see is not simply a diagnostic code, but a human story. Each patient has their own history, their own voice, and their own need for care.
Damon Tweedy is a psychiatrist and author of Black Man in a White Coat and Facing the Unseen: Centering Mental Health in Medicine.
Porochista Khakpour
I’ve spent a great deal of my life in illness, but writing about it was not something that came naturally to me. My interest in fiction overlapped greatly with my desire to escape my body and mind and I could not imagine spending my time in art expounding on what threatened my art the most: the truth, which increasingly meant facing the limitations of my physical self. I didn’t want to be a memoirist. But at the same time, at my sickest, I was constantly using the written word to connect with my communities: social media posts, emails, text messages, long narratives for doctors before a first appointment, etc.
When I finally did write my memoir about being ill, it wasn’t cathartic in the way that people seemed to expect. Recounting the past intertwined with an uncertain present, threatening any concept of the tomorrow that I desperately needed to conjure. And when the book made its way into the world, I was too sick to even understand what was happening, having collapsed from illness midway through the book tour. But even while bedridden, far from the world of narrative and audience, the story carried on without me. It turned out that in rendering my body, I’d actually escaped my body more than ever. In some ways, it now belonged to public. I’d almost not survived myself, but my book had.
To this day, people still write to me, saying how important this book was to them, an experience I haven’t had with anything else I’ve ever created. And as the years have gone on, I too lean on memoirs of illness and disability by other writers. These networks mean the world to me and so I will never regret telling my story. It’s everyone’s story, the one we’re all in the middle of, every one of us alive in this moment. This kind of writing will always be of the most essential genre of all, the most honest work we have in us.
Porochista Khakpour is the author of the memoir Sick and the novels Sons & Other Flammable Objects, The Last Illusion, and Tehrangeles.
Theresa Brown
My work in nursing—in bone-marrow transplant and hospice—has been characterized by grief. I grieved for my patients who were suffering and I grieved their deaths. I grieved for my co-workers, who had to watch their patients die every day. Writing about that nursing work, which I loved despite its emotional and clinical challenges, allowed me to express that grief. I wrote about one of my patients—a husband and the father of a young child—“Like all of us, he was ordinary, and like all of us, he was extraordinary.”
Reflecting on sorrow might sound depressing, but writing about my grief helped me survive it. We live in a world that asks us to constantly go fast, move on. Turning my grief into words allowed me to slow down, look it in the face, and appreciate my capacity to care for patients. I’m now working in primary care and that sense of caring has come with me. Exploring my grief on the page helped me realize that all patients, whether dying or not, need and deserve such grace.
Theresa Brown is a nurse and author of the New York Times bestseller The Shift and the forthcoming The Cost of Care: How Four Nurses Put Patients First in a Profit-Driven System.
Edward Hirsch
When my son Gabriel died, I was utterly lost, walking around with a 50-mile stare. I tried to write Gabriel’s biography and was able to get the facts in order, but it was just a document. I realized that I had left myself out of it. To make something of what I had written I had to tell Gabriel’s story from my own point of view as a father, and in the manner that was most natural to me–poetry. Slowly I found my way to a form and a format, a book-length elegy with meters and metaphors that seemed to capture something of Gabriel’s wild spirit. I turned to other poets who had lost children, bringing them into my poem as a kind of chorus, a collective mourning. Writing the elegy gave me something concrete to do with my grief, but I also felt that I was with Gabriel when I was writing about him. Gabriel: A Poem became my act of mourning, my Kaddish.
Writing does not bring back someone who has died. It is not life. But it can help you feel that you are doing something on their behalf by remembering them, by keeping something of them alive. Writing about someone who has died is a way of honoring and inhabiting grief. It is a ritual act that is both an ache and a prayer. It is a way to turn grief into action, transfiguring it into something that will, hopefully, last. That is the work of making art.
Edward Hirsch is the president of the Guggenheim Foundation and author of How to Read a Poem, Gabriel, My Childhood in Pieces, and ten collections of poetry.