The agony and the ecstasy

The creative power of illness.

The divided self: "Portrait in Ruby and Blue" (2012) by Daniel Gordon. Image: Daniel Gordon Studio

The first time I experienced severe physical pain, I was 13 years old. It was a new sensation: nauseating, deep and gnawing; centred in my abdomen and the base of my spine, it also radiated down both legs. I lay on the floor of the lounge, one moment curled on my side like a comma, my knees pulled up to my chest; the next on my back; the next on my front with my legs spread as wide as they would go. None of these positions brought relief. I was vaguely aware of shaking and of being unable to talk. My skin, I learned later, was so unnaturally pale that had I not been moving, I might have been taken for dead.

More than a decade of similar episodes followed, until, aged 26, I was diagnosed with endometriosis. I still have the condition today, and sometimes, in the middle of a bad episode, I have longed not to exist. But always after the pain comes the gradual, miraculous release from pain, and with it the sense that my stay in that other strange realm to which illness transports us is by no means over. It seems to me that these periods are vacations, in the truest sense of the word – intermissions, voids, times in which my normal life has in effect been emptied of my presence.

Most people have never seen me suffering: a few (ambulance staff, doctors, night cleaners) have never seen me well. It is as if, since the age of 13, a secret self has existed alongside my everyday self; one for whom, from time to time, the so-called real world, with all its duties and dreary preoccupations, ceases to be. It’s striking how often the notion of the divided self crops up in relation to physical illness. Sometimes the division is literal, as described here by Dorothy Molloy in the title poem of her collection Gethsemane Day:

They’ve taken my liver down to the lab,
left the rest of me here on the bed;
the blood I am sweating rubs off on the sheet,
but I’m still holding on to my head.

Sylvia Plath also presents an account of the self splitting into two while undergoing medical treatment. In December 1952, she found herself in hospital after breaking her leg in a skiing accident. Her response, “In Plaster”, details a struggle between two different selves:

I shall never get out of this! There are two of me now:
This new absolutely white person and the old yellow one,
And the white person is certainly the superior one.

Superior, it transpires, only inasmuch as the plaster self doesn’t need food to sustain it and is “whiter and unbreakable and with no complaints”. But it is the old, yellow self that plays host to this gleaming other. Clearly, we’re in the realms of metaphor: Plath believed that a life lived by a false self or selves was both cowardly and senseless; time and again her poems propound the wisdom of shedding false identities.

Much has been made of the link between creativity and mental illness, but the link between physical illness and the creative life, though less discussed, is just as significant. For some artists, it led directly to a choice of career. Matisse – famous for his intense, saturated colours that seem to blaze with life – initially studied law and had begun work as a court administrator when an attack of appendicitis forced him to take time out. His mother bought him art supplies to keep him occupied during his convalescence and it was only then that he made his first paintings. His subsequent decision to quit law and become a painter was, it is said, the cause of deep disappointment for his father.

Hilary Mantel, a fellow endometriosis sufferer, believes the disease was at least partly responsible for her choice to become a writer, as she explains in an interview at the back of her memoir, Giving Up the Ghost: “A lot of people know they’re going to be writers when they’re children, but I made a conscious decision to become one when I was 22, when, because of my poor health, I saw other career prospects slipping away from me.”

Like Matisse, Mantel read law at university but her studies were interrupted by severe episodes of pain that resulted in a succession of inappropriate medication. She explains, “It was in the nature of educated young women, it was believed, to be hysterical, neurotic, difficult, and out of control, and the object was to get them back under control . . . by giving them drugs which make them indifferent to their mental pain – and, in my case, indifferent to physical pain too.”

Baffled by the symptoms, Mantel’s doctors seem to have resorted to a sort of annihilation of the self. Though the circumstances aren’t usually so extreme, the sensation of surrendered identity is a common reaction to medical intervention – as the bed-ridden speaker in Sylvia Plath’s “Tulips” describes:

I have given my name and my day-clothes up to the nurses
And my history to the an aesthetist and my body to surgeons.
They have propped my head between the pillow and the sheet-cuff

Like an eye between two white lids that will not shut.

This feeling is by no means the preserve of female writers. In 2006, in County Donegal, the Nobel laureate Seamus Heaney suffered a stroke that he wrote about in his most tender collection, Human Chain. In conversation with the Observer, he explained, “The trip in the ambulance I always remember because Marie [Heaney’s wife] was in the back with me . . . To me, that was one of the actual beauties of the stroke, that renewal of love in the ambulance. One of the strongest, sweetest memories I have.” In “Chanson d’Aventure”, he describes that same journey: here, the speaker’s sense of powerlessness is powerfully expressed in a series of passive verbs, as he finds himself

Strapped on, wheeled out, forklifted, locked
In position for the drive
Bone-shaken, bumped at speed

Later in the same poem, Heaney finds himself reflecting on the word bell:

. . . the one I tolled in Derry in my turn
As college bellman, the haul of it there still
In the heel of my once capable

Warm hand, hand that I could not feel you lift
And lag in yours throughout that journey
When it lay flop-heavy as a bellpull.

The merging of present and past that Heaney articulates here is another familiar feature of illness. In the midst of severe pain it is difficult to be anywhere except the present, but at times of injury or shock it is common for different time phases to merge.

Disease can open up unique perspectives for the sufferer and a surprising amount of the work that makes up our artistic canon has emerged from it – work that would otherwise never have existed. An obvious example is Paradise Lost, dictated by Milton after he had lost his sight completely.

More poignant still is the story of Mahler’s Ninth Symphony. In middle age, and shortly after the death of his young daughter, Mahler learned that his heart was defective. The first movement of the symphony opens with a tentative, syncopated rhythm that many, including Leonard Bernstein, have suggested echoes the composer’s irregular heartbeat. The motif returns seven times over the course of the movement until, at its climax, it arrives as a sudden intrusion, as Bernstein put it, of “death in the midst of life”. This time it is announced by trombones, underpinned by a booming bass drum and marked in the score mit höchster Gewalt (“with the greatest violence”) – as if death must finally have its say.

My latest poetry collection, The World’s Two Smallest Humans, concludes with an assertion of life – a sequence of poems based on the IVF treatment I received for fertility problems related to endometriosis. The sequence is fictional but the two smallest humans of the title are real enough: there is an extraordinary moment during the IVF process when the embryologist walks into the treatment room with your live embryos attached to the end of a pipette. In she walks, in a little scrub cap and tunic, looking more like a bakery worker than someone who is carrying in her latex-gloved hands the smallest human beings possible. Moments later, those same beings are transferred to the patient’s womb to do their best.

After three operations, my worst pain episodes are few and far between, but they still occur. The most recent happened a few months ago. The two-person ambulance crew that arrived at my cottage door in the dead of night was led by a woman called Jo, for whose professionalism and compassion I shall be eternally grateful.

Philip Larkin said of ambulances, “They come to rest at any kerb:/All streets in time are visited.” According to the poem, a journey in an ambulance signals the end, first of our identity and then our existence: such a trip, the poem concludes, “Brings closer what is left to come,/And dulls to distance all we are.”

That may be true but more often than not it is a temporary truth: Larkin’s poem wilfully disregards the possibility of recovery. In some ancient cultures there is a deity for illness, which strikes me as refreshingly clear sighted. If such a god existed for us today, I would be glad of the chance to offer up a prayer of thanks for the rich crop of art he has nurtured into being.

Julia Copus’s recent collection, “The World’s Two Smallest Humans”, was shortlisted for the T S Eliot Prize and the Costa Book Awards