Narratives of Illness Recommended Reading

All personal narratives have value, for the writer and for the reader who may find a piece of him or herself in another’s story. So putting together a recommended reading list for people looking for narratives of illness is a challenge. The intention of this list is to offer books of fine literary quality that tell not only the story of a medical experience but frame that story within the larger context of the storyteller’s life. The list includes memoirs written by patients and caregivers (perhaps later I will compile a list of doctor narratives), explorations of grief, intimate first-person essays. This list is not complete; there are some notable exclusions, books that received favorable criticism and wide appeal but which were a disappointment to me. I am still reading, still discovering new and extant works. But these are my favorites as of now, listed in no particular order except for how I pulled them out of my bookcase. I’m always on the lookout for recommendations and hope you will share your favorites with me.

Heaven’s Coast, Mark Doty

Doty’s skill as a poet is evident in this beautiful narrative around his lover’s decline and death from AIDS. Doty shares large swathes of his life with the reader, including his perspective on religion which begins the book. A favorite quote out of many: “Wind, glimmering watery horizon and sun, the watchful seals and shimmied flurries of snow seem to me to have far more to do with the life of my spirit. And there is somehow in the grand scale of dune and marsh and sea room for all of human longing, placed firmly in context by the larger world: Small, our flames are, though to us raging, essential.”

Autobiography of a Face, Lucy Grealy

Grealy was diagnosed with Ewing’s sarcoma at age nine. Her book, spanning the duration of her treatment through the after-effects that followed her into early adulthood, offers no easy platitudes. Grealy never wanted to be known as a writer of “illness” literature, just a good writer. She not only puts together amazing sentences, she is smart and daring. A favorite quote: “Suddenly I understood the word visiting. I was in one place, they were in another, and they were only pausing.”

An Unquiet Mind: A Memoir of Moods and Madness, Kay Redfield Jamison

Dr. Jamison is a world renowned specialist in mood disorders who herself is bipolar. In this book, she invites us to join her wrestling match with her illness, which can be constructive as well as destructive, and with her decision to out herself in a world where such a disorder could have a negative impact on her career. A favorite quote: “I long ago abandoned the notion of a life without storms, or a world without dry and killing seasons.”

Nothing Was The Same, Kay Redfield Jamison

In this memoir, Dr. Jamison’s skills as an observer of herself and others brings readers into the experience of her husband’s diagnosis, treatment, and subsequent death from cancer. Far from simply a medical story, Nothing Was The Same, is the story of an intimate relationship where the profession and personal often overlap. Jamison’s writing is as strong as ever. This quote resonated for me personally: “Looking at star fields can induce a piercing terror at one’s finite place in the universe.”

The Still Point of the Turning World, Emily Rapp

Writing teachers are always telling students to wait until they have achieved some distance from a traumatic event before they write about it. Rapp admits to offering her students this advice as well. But in this book, Rapp writes through every moment that existed after her son’s diagnosis of Tay-Sachs disease and the reader feels the immediacy of each emotion—not just a pain that can barely be named but love and laughter and warmth. What keeps the reader from being swamped by Rapp’s tragedy is that she saves a corner of herself to write and rewrite, to pare and sculpt with great talent and artistry. Rapp is a master of metaphor. “Grief isn’t just an alternative universe, it’s the nastiest, cattiest, meaner-than-a-slighted-and-jealous-mean-girl snake. It’s not a cute garden snake that slithers under rocks and looks, in its own snakish way, cuddly. Grief is a cobra.”

The Two Kinds of Decay, Sarah Manguso

Manguso was twenty-one years old, away at school, when she began suffering symptoms from what would evolve into a paralyzing autoimmune disease. Manguso is a poet who, in short chapters, distills the essence of her experience and her tentative return to health. She provides both historical and current context so, as hoped for in any good memoir, we learn more about who Manguso is than just who she is as a person with a disease. A favorite quote: “I felt no antipathy, just a certainty that his pity would accrue to me, and would grow in me like the sea of antibodies with which I was already invisibly killing myself, and that I couldn’t take in any additional poison.”

The Best Day the Worst Day: Life With Jane Kenyon, Donald Hall

The clue that this book is much more than the medical story of Kenyon’s leukemia is in the title. Hall writes about the totality of his life with Jane Kenyon. Both a poet and a prose writer, he brings the reader into the home of his soul with the intimate portrayal of everyday ritual. He writes with equal grace about place as he does about family, about his and Kenyon’s lives as writers and as residents of leukemia. Often, it is the small details that make so much difference—learning their dog Gus’ obsession with rocks, that they played Messiaen on a boom box in the hospital, the fact that they watched MacNeil/Lehrer together . One of my favorite quotes illustrates the wisdom any reader can find in this book. “Third things are essential to marriages, objects or practices or habits or arts or institutions or games or human beings that provide a site of joint rapture or contentment.”

The Sound of a Wild Snail Eating, Elisabeth Tova Bailey

While the author and the snail she writes about never leave the room where Bailey is confined because of debilitating exhaustion and weakness, this book travels great distances. Through her observation of a snail in an aquarium placed at her bedside by her friend, we enter Bailey’s mind. She begins to find comfort in the presence of this small animal, to recognize the limitations she and it have in common, and also to identify those survival mechanisms that a snail has that would have been helpful to Bailey. Bailey impresses not just as a beautiful writer and by her wit, but by giving the reader such a fascinating context in which to discuss her illness. She makes her reader feel smarter. “The snail would make its way through the terrarium while the hands of the clock hardly moved—so I often thought the snail traveled faster than time. Then, absorbed in snail watching, I’d find that time had flown by, unnoticed.”

Intoxicated by my Illness: And Other Writings on Life and Death, Anatole Broyard

In this group of essays, Broyard writes almost ebulliently about his illness (prostate cancer) and the anticipation of his death. The writing crackles with both wit and wisdom; Broyard is, in many ways, liberated by his illness. The book shows how Broyard chose to live, but it doesn’t shy from talking about death—death in literature, his father’s death, his own. It is hard to cite just one favorite quote since illness has unleashed in Broyard one great image or sentence after another. So here are a few: “I would also like a doctor who enjoyed me. I want to be a good story for him, to give him some of my art in exchange for his.” “I saw my illness as a visit to a disturbed country, rather like contemporary China. I imagined it as a love affair with a demented woman who demanded things I had never done before.” “His eyes sucked me in. They were twin drains in a sink down which blackish waters swiftly disappeared, suddenly widening as the tides ran out. They nursed, like infant mouths, on me. I tried to find some formula to feed them, but I felt shamefully inorganic.”

A Whole New Life, Reynolds Price

I had been reading Reynolds Price’s fiction for years before I discovered this book, a memoir recounting his treatment for a spinal cord tumor but, more importantly for me, his spiritual generosity. Price does not spare the reader from the details of his symptoms and treatments and the physical manner in which his life is altered. It is all the more compelling when Price writes about his friends, his faith, and the discoveries he makes about himself. Contrast these two quotes about pain. “Like most real agony, the pain afflicted more senses than one; it often shined and roared as it burned. More than once I panicked in the glare and noise.” Later, Price writes: “Outrageous as my pain was and brutal as its three-year tyranny proved, I well know that thousands have hotter masters entrenched in their skulls—physical pain from physical damage—so I take great care to pull rank on no one.” At the end of the book Price says of the person who has confronted illness or trauma, “But you’re not that person now. Who’ll you be tomorrow? And who do you propose to be from here to the grave, which may be hours or decades down the road.” Of himself he says in the last lines of A Whole New Life, “Even my handwriting looks very little like the script of the man I was in June of ’84. Cranky as it is, it’s taller, more legible, with more air and stride. It comes down the arm of a grateful man.”

A Grief Observed, C.S. Lewis

When Lewis’s beloved wife dies, he becomes not only deeply bereaved but a close observer of his own grief. As a writer, this is one way he grapples with loss and also with questions of a faith that he thought would have answers for him. About the need to write Lewis says, “I must have some drug, and reading isn’t a strong enough drug now. But writing it all down … I believe I get a little outside it.” While he gets outside, Lewis brings the reader inside as he follows himself on the mourner’s pathway. A favorite quote as Lewis observes his life continuing, “Slowly, quietly, like snowflakes—like the small flakes that come when it is going to snow all night—little flakes of me, my impressions, my selections, are settling down on the image of her.”

The Exquisite Risk; Daring to Live an Authentic Life, Mark Nepo
The Book of Awakening, Mark Nepo
Surviving Has Made Me Crazy, Mark Nepo

I would read anything by the amazing writer, philosopher, and spiritualist Mark Nepo. Even his grocery list, I was thinking the other day, when I actually found that list in one of his poems when I was rereading Surviving Has Made Me Crazy. At the heart of Nepo’s work as a writer and teacher is delving into those areas that keep us from living fully. Nepo himself is a cancer survivor and that identity and what he experienced illuminates much of his writing. His words, sentences, and paragraphs read like music. Indeed a favorite quote from The Exquisite Risk is that “… song is not a luxury but a necessary way of being in the world, a way of keeping the soul anchored in hard time, a way for each of us to experience the fullness of life, no matter what difficulties we may wake in.” Nepo’s full life is apparent on every page.

The Diving Bell and the Butterfly, Jean-Dominique Bauby

Less memoir than a portrait of a moment in time, Bauby brings the reader into his paralyzed body and into the still active workings of his mind. The musings of that mind are as far-flung as the body is locked-in. All Bauby can do is see, hear, and remember; but rather than behave like the child who won’t play with his toy because he only wants the toys the other children have, Bauby is the child who takes his toy into the corner to explore everything he can do with it and the limitations of what it can’t do. There is an immediacy to Bauby’s story, a mindfulness that comes when there is nothing else to distract you from the present moment. In this sense The Diving Bell and the Butterfly becomes a meditation, not necessarily one that brings peace but one that keeps the spirit connected to the moment. Favorite quote: “Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.”

A Very Easy Death, Simone de Beauvoir

This short but emotionally dense book is de Beauvoir’s recounting of her experiences at the bedside of her dying mother. The title is a little misleading because in this day and age, the mother’s death would not be considered easy. Today, we use words like dignity and palliative; we expect peace, a drifting away, even though these ideals still remain elusive. Written in the 1960’s we meet the paternalistic doctor, a culture of keeping the truth from the patient, a resistance to fighting back against interventions that do nothing to heal the patient and do a great deal to harm her. As de Beauvoire writes: “But when I reached home, all the sadness and horror of these days dropped upon me with all its weight. And I too had a cancer eating into me—remorse. ‘Don’t let them operate on her.’ And I had not prevented anything.” De Beauvoir’s writing can seem a little too analytical at times, but, because she never flinches, the narrative never loses its power. As a philosopher, de Beauvoir also uses this book to examine attitudes about death. “There is no such thing as a natural death: nothing that happens to a man is ever natural, since his presence calls the world into question.”

Giving up the Ghost, Hilary Mantel

I wasn’t sure whether to include this book here, not because of its quality but because of its focus. I first learned about Giving up the Ghost at conference sponsored by the Narrative Medicine program at Columbia University. Mantel does indeed tell a medical story but for a good part of the book, Mantel’s mysterious pains, fevers, and headaches of childhood are given only passing reference. Only at the end of the book does the narrative turn directly toward the endometriosis that remained undiagnosed for so many years that only drastic surgery and body- and mood-altering medications could help. But the complete narrative, while not seamlessly connected—the bulk of the book details family relationships but not illness, the latter part focuses on illness but leaves questions about family—is so compelling, the child’s voice so strong and acute, that there is a great deal to be gleaned about the human condition. There are many ghosts in Mantel’s life; the primary one is the child she will never have. As Mantel prepares to give up this ghost she writes: “Then a thing occurred to me, about ghost children. They don’t age, unless you make them. They don’t age, so they don’t know it’s time to leave home. They won’t, without a struggle be kicked out of your psyche. They will hang on by every means they know; they won’t agree to go, until you make your intentions clear. They’re stupid, so it’s not enough to tell them; you have to show them as well.”