Telling stories is how we make sense of the world, and articulating the experience of life-changing illness can be part of recovery
When Susan Sontag died, in 2004, she had already battled cancer twice previously. Her death, at 71, was from leukaemia. “Everyone who is born holds dual citizenship,” she wrote in her book Illness as a Metaphor, “in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged to identify ourselves as citizens of that other place.”
Anyone who has ever been seriously ill will feel solidarity with that description. (I’m a kindred leukaemia spirit, but I survived.) Illness is a foreign country, a lunar outpost, and an experience no one else fully understands if they’ve been lucky enough to avoid it.
Christopher Hitchens, writing about his encroaching death in Mortality, also identified illness as a place, and spoke of “straying into the arena of the unwell”. Hitchens filched this line from cult film Withnail I, using the prism of art to explain the landscape of illness.
In Michael Haneke’s new film, Amour, the physicality of sickness is explored, but falling ill in old age is almost something to be expected: in youth it blindsides us.
Next weekend the Experience of Illness: Learning from the Arts symposium takes place at the Lewis Glucksman Gallery, in Cork. In the programme introduction, Fergus Shanahan, professor of medicine at University College Cork, writes that science gives us a way of thinking about disease but the arts “provide insight, context and understanding of what it means to be ill”.
Distraction from pain
When I first saw Frida Kahlo’s painting The Broken Column I stared open-mouthed. My health issues were different from Kahlo’s, but I related to the constant pain, the rounds of surgery and the feeling that your body isn’t normal.
At a Dublin children’s hospital, in 1987, after a week of pronounced limping, an orthopaedic doctor asked if I had ever been bitten by or encountered something poisonous. “I stood on something sharp in a lake in Tipperary once,” I offered. No, I had not fallen, ever broken a bone or contracted a tropical disease. “Have you ever been knocked down by a car?” Aha. Aged seven, during a game of chasing on our suburban cul-de-sac, I ran underneath a wall’s length of arms, “releasing” everyone. During my victory lap I sprinted out from behind a parked car on to the road. I didn’t see the Hillman Hunter. It slammed into my left side.
Had being hit by a car six years before caused the problem? Unlikely. A game of medical Guess Who? followed. Biopsies and aspirations revealed no cancer or disease. There were scoliosis checks and countless X-rays. Finally, an arthritis diagnosis and a traction method called “slings and springs”. It was an unwieldy set-up that confines the patient to bed trussed up like a turkey.
The years from 13 to 17 are a benchmark of embarrassment anyway, without adding bedpans, a borrowed wheelchair on a school trip and a noticeable limp to the mix. Worse, no one kisses girls on crutches. I responded by burying myself in mountains of books. Art distracted me from pain and, crucially, from the boredom of immobility.
Years later I discovered Lucy Grealy, a writer of such immense confidence that it contradicted the harrowing insecurity she endured. Grealy was born in Ireland, in 1963, but moved to the US with her family. At the age of nine she was diagnosed with Ewing’s sarcoma, a rare cancer in her face that required the removal of most of her jaw. Autobiography of a Face is not only a brilliant, gut-punch memoir, heavy with wit, humour and devastation, but also the only book I’ve read that spoke to me about the self-consciousness that physical illness brings, especially at a vulnerable age.
Much of Kahlo’s work is about the body, about how people who have not been seriously ill cannot understand what our corporeal self goes through.
“The great confessional”
Illness and art are subjective, but Kahlo’s paintings represented what I felt, in a way the teenage me couldn’t articulate. At college, around the time I begged a surgeon for a hip replacement (he rightly refused because of my age), I discovered Virginia Woolf. The novels are not for everyone, but Woolf was also an astute essayist.
In On Being Ill she says: “Illness is a part of every human being’s experience. It enhances our perceptions and reduces self-consciousness. It is the great confessional; things are said, truths are blurted out which health conceals.” This applies to Jo Spence, whose photographs appear in the Glucksman’s group exhibition about artistic representations of illness.
Spence was a London photographer and a cancer sufferer who died in 1992 from leukaemia. She resisted the tag “sick”, documenting her breast cancer visually. In one of her most famous photos, taken the night before a mastectomy, the words “Property of Jo Spence” are written on her left breast.
Telling stories – visually, in literature – is how we make sense of the world. Articulating (is it a coincidence that “art” is found in “articulating”?) the experience of life-changing illness is part of recovery. Illness has its own language, distinct from medicalese, and often it’s a visual palette. The purple of a needle bruise, the yellow of jaundice, the pink of many surgical scars.
This week a woman I know told an important medical story with one photograph, posted to Facebook. In it her cupped hand held some small red and yellow pills. They are the only medication to cure the rare leukemia we both had. Memories of horrendous side effects flooded back, but now we are both done with those toxic capsules. We have both passed under the dark arch of sickness and out again into the light.
Cyclically, Susan Sontag said that all photographs are memento mori, a phrase that translates as “remember you will die”. Illness is another reminder, but it is one that doesn’t always defeat us.
Illness and the arts Other interpretations
Literature
The Magic Mountain by Thomas Mann
A story about many themes, but centring on the tubercular “Half-a-lung club” in an Alpine sanatorium.
Poetry
Of Mutability by Jo Shapcott
An affecting collection of poems after a diagnosis of breast cancer. The word “cancer” never appears once in the poems, and the book is dedicated to Shapcott’s medical team.
Painting
The Convalescent by Gwen John
Although many paintings, from the Renaissance to the present, don’t shy away from the gore and inconvenience of illness, John’s simple portrait of a woman reading is hopeful and full of stillness and beauty.
The Experience of Illness: Learning from the Arts runs from Friday to Sunday. The exhibition Living/Loss: The Experience of Illness in Art runs until March 2013;