Between maladies and myths: What compels contemporary authors to describe life in the sick-bed?

Writing about illness has long been a literary tradition. But what compels contemporary authors to describe life in the sick-bed?

When, one sunny day in the early 1980s, the neuro-logist and writer Oliver Sacks lost his footing along a Norwegian mountain-top in a fall that left his leg mangled and paralysed, he noted the instant, surreal disjuncture between his well self – eminent doctor, fearless hiker, able-bodied man - and the sick, unravelled being he became in the moment of his slip.

Just as the loose rocks moved calamitously beneath his feet, so his deepest sense of identity felt suddenly groundless: "Such a change, such suddenness, is difficult to comprehend, and the mind casts about for explanations".

As well as raising profound questions about the physical basis of identity, Sacks touches on a long literary impulse to unpick the causes and effects of debilitating illness in his memoir, A Leg to Stand On (Picador, £7.99), to be re-issued in September. Just as writers are compelled to describe their ordeals, contemporary readers are increasingly drawn to personal accounts of suffering, as the popularity of the "cancer memoir" attests.

While in 1926, the bedridden Virginia Woolf wrote about the dearth of literary accounts of illness, the last few decades have seen a growing preoccupation with first-person pathographies. This has now extended into popular drama, with newly-spawned TV shows such as The Big C and Breaking Bad, which use terminal illness as their central theme.

Within the tradition of literary memoir, however, the endeavour appears to be driven by a need to describe and unburden as well as Sacks's desire to "explain". The in-built narrative arc of critical illness predisposes it to storytelling. There is, in the drama of the afflicted body, a beginning – Sacks's fall, the first, icy-fingered symptoms of Hilary Mantel's unnamed illness, the poet Jo Shapcott's breast cancer diagnosis - as well as the possibilities of profound revelations, epic emotions, tragic ends. The New York cancer specialist, Siddhartha Mukherjee, eloquently describes this intrinsic narrative propensity in his "biography" of cancer, The Emperor of all Maladies (Fourth Estate, £25). "To name an illness is to describe a certain condition of suffering - a literary act before it becomes a medical one. A patient, long before he becomes the subject of medical scrutiny, is, at first, simply a storyteller, a narrator of suffering - a traveler [sic] who has visited the kingdom of the ill. To relieve an illness, one must begin, then, by unburdening its story."

The need to unburden was most graphically illustrated in Fanny Burney's 1811 account of her mastectomy, which she underwent without anaesthetic and has since become a prototype cancer memoir. It does not seek to offer psychological insights into sickness (it was a moot point whether she had breast cancer at all) but encapsulates a desire to recount the physical horror of her medical procedure, performed by "seven men in black" in the manner of a battlefield operation.

Burney's description, delivered with a butcher's precision as her breast is quartered, removed and her breastbone "scraped" of all remaining flesh, was written quickly in the form of a fast-flowing letter to her sister. In it, she suggests her desire to remember her ordeal is not fully explicable, even to herself, yet necessary none the less. "My dearest Esther, not for days, nor for Weeks, but for Months I could not speak of this terrible business without nearly again going through it! ... I dare not revise, nor read, the recollection is so painful."

Woolf's writings on illness extend beyond Burney's explicit description of suffering. Her essay, "On Being Ill", which appeared in TS Eliot's Criterion magazine in 1926, is a manifesto for literary reflections on illness, which she feels is comparable to the epic themes of love, death and vengeance in classical literature.

She also equates her own suffering with a higher sensibility, speaking of her sickbed as a place of Delphic illumination. The solitary invalid, she suggests, has access to worlds that a well person does not. "I believe these illnesses are in my case – how shall I express it? Partly mystical. Something happens in my mind," she writes. The critic Hermione Lee observes that Woolf places in the value of illness a "repeated emphasis on its creative and liberating effects". This elevation of sickness, and learning through it, has echoes of Christian suffering, which many thinkers have since found highly problematic in post-religious Western culture.

Barbara Ehrenreich argues vociferously against the romanticised view which imbues a life-threatening illness with positive, transformational qualities. In her investigations into breast cancer, which followed a diagnosis of the illness and resulted in her book Smile or Die (Granta, £8.99), she argues against a positive-thinking industry which implies that sufferers can steer themselves out of being ill through sheer force of will. The conspiracy that cancer can be an "amazing uplifting experience", she says, is built around a similar sort of lie given to tuberculosis in the 19th century, when it was romanticised as synonymous with a higher sensibility.

"At the time I felt so oppressed by the idea that I should have a positive attitude and find the whole experience enriching. I felt that I had entered a very peculiar world and I was there with my clipboard as an anthropologist. I could distance myself in that way. It was interesting how the fact that this was a mortal illness was covered up by kitsch and sentiment. It irritates me, the idea of looking at breast cancer as a gift. The [breast cancer] experience probably made me more cynical, mean and distrustful."

Ehrenreich's polemic against aspects of the cancer industry follows on, in many ways, from the seminal critique on the semiotics of illness by Susan Sontag in the late 1970s. In the recently republished Illness as Metaphor (Penguin Modern Classics, £12), she argues that "illness is interpreted as, basically, a psychological event, and people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves by the mobilization of will; that they can choose not to die of the illness".

This idea was kept afloat by the concept of a "cancer personality" which traded on the belief that some personalities were more prone to getting cancer than others, and some more prone to beating it than others. That gave the sufferer the burden of responsibility - they could, this view suggested, beat the disease if they really wanted.

Turberculosis, meanwhile, was aestheticised in the 19th century, suggests Sontag. Illness, as well as its bed-partner sadness, made a person interesting. "It was a mark of refinement, of sensibility, to be sad", she wrote. This romanticised view of TB is remarkably similar to Woolf's view of the sick person as seer, and sickness as revelation.

In her essay, "Ink in the Blood", Hilary Mantel questions the supposedly edifying nature of the truths that illness reveals: "Illness strips you back to an authentic self, but not one you need to meet. Too much is claimed for authenticity. Painfully we learn to live in the world, and to be false. Then all our defences are knocked down in one sweep. In sickness we can't avoid knowing about our body and what it does, its animal aspect, its demands. We see things that never should be seen; our inside is outside, the body's sewer pipes and vaults exposed to view, as if in a woodcut of our own martyrdom."

A deeper knowledge of the authentic self that the sufferer perceives is rendered perverse and unnatural by Mantel. Her desire to write about her illness is not to communicate a higher truth, nor "chase her own ambulance", a phrase she borrows from Shapcott, which is shorthand for those memoirs that detail the minutiae of suffering, treatment and recovery, but to contemplate "the line between writing and physical survival."

Shapcott, who last week won the Costa award with her poetry collection Of Mutability (Faber & Faber, £12.99), which was conceived following her breast cancer diagnosis, says she did not seek to document her sick self in any way. Written in a tone that is variously playful, reflective, humorous and mournful, the book has themes that circle cancer, but never name it.

"Of Mutability does not mention the words 'breast cancer' once. It's not about breast cancer or a particular illness but more a series of meditations on mortality. It is the result of what illness does to you, and seeing the world differently [as a result]," reflects Shapcott.

The idea that an acute illness leads to a changed sensibility is not necessarily at odds with Ehrenreich's suggestion that it also shrinks the spirit, or makes its sufferer meaner. "I don't see why illness can't be both things – illuminating as well as disgusting and horrible. Any intense or extraordinary experience, whether positive or negative, changes you. That's not a romantic idea. Writers have always written about what affected them; illness is part of the human experience."

The American writer Sarah Manguso, who at 21 was diagnosed with a rare autoimmune disease that left her debilitated for nine years (followed by a period of bipolar disorder), does "chase her own ambulance" – and unabashedly so.

In her memoir The Two Kinds of Decay (Granta, £14.99), she writes viscerally about the nuts and bolts of her illness: the cutting open and inserting of tubes, the oozing wounds, the painstaking blood-cleaning sessions, the hair-loss, weight gain, internal screams and desperate yells of others in her hospital ward.

She says that she "avoided writing about her disease" for years because "the subject seemed garish, obvious, banal, embarrassingly personal. Then, in 2006, I wrote an essay about social class that mentioned the tube I wore in my heart. When it was done, I knew I had to write more about that tube."

Her book refreshingly weds seemingly opposing viewpoints - that illness reduces the spirit, or elevates it. She writes: "There were times that I cherished my rare disease for its irrefutable proof of my specialness. For its proof that my death, the end of the disease, whenever and in whatever form it came, was going to be remarkable."

Yet there is also its inverse idea: "The hardest thing I'd ever done, the hardest thing I'd ever have to do, had made me a worse person! That wasn't how it was supposed to work. Tribulation is supposed to make strong people, people who radiate mercy, leaders of their kind. I'd have to do harder things before my self-regard lost the mean air that had inflated it."

This tension, between the losing, or finding oneself in illness, pits dichotomous views against each other: John Donne branded his sickbed a grave, a diabolical place of "unknowing" ("I do nothing, I know nothing, of myself"). Shapcott and Manguso gain insights which might not be as epiphanous as Woolf's. But neither are they black holes containing nothing but darkness.

"If you stare into the abyss," writes Sacks (quoting Nietzche) "it will stare back at you". There is solace in this act, he suggests; to engage with ones own personal abyss might lead to an unknowing, and undoing, but perhaps to other possibilities too.

Arts and Entertainment
Stewart Lee (Gavin Evans)


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