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

The creative power of illness.

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

This article first appeared in the 28 January 2013 issue of the New Statesman, After Chavez

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Tweeting terror: what social media reveals about how we respond to tragedy

From sharing graphic images to posting a selfie, what compels online behaviours that can often outwardly seem improper?

Why did they post that? Why did they share a traumatising image? Why did they tell a joke? Why are they making this about themselves? Did they… just post a selfie? Why are they spreading fake news?

These are questions social media users almost inevitably ask themselves in the immediate aftermath of a tragedy such as Wednesday’s Westminster attack. Yet we ask not because of genuine curiosity, but out of shock and judgement provoked by what we see as the wrong way to respond online. But these are still questions worth answering. What drives the behaviours we see time and again on social media in the wake of a disaster?

The fake image

“I really didn't think it was going to become a big deal,” says Dr Ranj Singh. “I shared it just because I thought it was very pertinent, I didn't expect it to be picked up by so many people.”

Singh was one of the first people to share a fake Tube sign on Twitter that was later read out in Parliament and on BBC Radio 4. The TfL sign – a board in stations which normally provides service information but can often feature an inspiring quote – read: “All terrorists are politely reminded that THIS IS LONDON and whatever you do to us we will drink tea and jolly well carry on thank you.”

Singh found it on the Facebook page of a man called John (who later explained to me why he created the fake image) and posted it on his own Twitter account, which has over 40,000 followers. After it went viral, many began pointing out that the sign was faked.

“At a time like this is it really helpful to point out that its fake?” asks Singh – who believes it is the message, not the medium, that matters most. “The sentiment is real and that's what's important.”

Singh tells me that he first shared the sign because he found it to be profound and was then pleased with the initial “sense of solidarity” that the first retweets brought. “I don't think you can fact-check sentiments,” he says, explaining why he didn’t delete the tweet.

Dr Grainne Kirwan, a cyberpsychology lecturer and author, explains that much of the behaviour we see on social media in the aftermath of an attack can be explained by this desire for solidarity. “It is part of a mechanism called social processing,” she says. “By discussing a sudden event of such negative impact it helps the individual to come to terms with it… When shocked, scared, horrified, or appalled by an event we search for evidence that others have similar reactions so that our response is validated.”

The selfies and the self-involved

Yet often, the most maligned social media behaviour in these situations seems less about solidarity and more about selfishness. Why did YouTuber Jack Jones post a since-deleted selfie with the words “The outmost [sic] respect to our public services”? Why did your friend, who works nowhere near Westminster, mark themselves as “Safe” using Facebook’s Safety Check feature? Why did New Statesman writer Laurie Penny say in a tweet that her “atheist prayers” were with the victims?

“It was the thought of a moment, and not a considered statement,” says Penny. The rushed nature of social media posts during times of crisis can often lead to misunderstandings. “My atheism is not a political statement, or something I'm particularly proud of, it just is.”

Penny received backlash on the site for her tweet, with one user gaining 836 likes on a tweet that read: “No need to shout 'I'm an atheist!' while trying to offer solidarity”. She explains that she posted her tweet due to the “nonsensical” belief that holding others in her heart makes a difference at tragic times, and was “shocked” when people became angry at her.

“I was shouted at for making it all about me, which is hard to avoid at the best of times on your own Twitter feed,” she says. “Over the years I've learned that 'making it about you' and 'attention seeking' are familiar accusations for any woman who has any sort of public profile – the problem seems to be not with what we do but with who we are.”

Penny raises a valid point that social media is inherently self-involved, and Dr Kirwan explains that in emotionally-charged situations it is easy to say things that are unclear, or can in hindsight seem callous or insincere.

“Our online society may make it feel like we need to show a response to events quickly to demonstrate solidarity or disdain for the individuals or parties directly involved in the incident, and so we put into writing and make publicly available something which we wrote in haste and without full knowledge of the circumstances.”

The joke

Arguably the most condemned behaviour in the aftermath of a tragedy is the sharing of an ill-timed joke. Julia Fraustino, a research affiliate at the National Consortium for the Study of Terrorism and Responses to Terrorism (START), reflects on this often seemingly inexplicable behaviour. “There’s research dating back to the US 9/11 terror attacks that shows lower rates of disaster-related depression and anxiety for people who evoke positive emotions before, during and after tragic events,” she says, stating that humour can be a coping mechanism.

“The offensiveness or appropriateness of humor seems, at least in part, to be tied to people’s perceived severity of the crisis,” she adds. “An analysis of tweets during a health pandemic showed that humorous posts rose and fell along with the seriousness of the situation, with more perceived seriousness resulting in fewer humour-based posts.”

The silence

If you can’t say anything nice, why say anything at all? Bambi's best friend Thumper's quote might be behind the silence we see from some social media users. Rather than simply being uncaring, there are factors which can predict whether someone will be active or passive on social media after a disaster, notes Fraustino.

“A couple of areas that factor into whether a person will post on social media during a disaster are issue-involvement and self-involvement,” she says. “When people perceive that the disaster is important and they believe they can or should do something about it, they may be more likely to share others’ posts or create their own content. Combine issue-involvement with self-involvement, which in this context refers to a desire for self-confirmation such as through gaining attention by being perceived as a story pioneer or thought leader, and the likelihood goes up that this person will create or curate disaster-related content on social media.”

“I just don’t like to make it about me,” one anonymous social media user tells me when asked why he doesn’t post anything himself – but instead shares or retweets posts – during disasters. “I feel like people just want likes and retweets and aren’t really being sincere, and I would hate to do that. Instead I just share stuff from important people, or stuff that needs to be said – like reminders not to share graphic images.”

The graphic image

The sharing of graphic and explicit images is often widely condemned, as many see this as both pointless and potentially psychologically damaging. After the attack, BBC Newsbeat collated tens of tweets by people angry that passersby took pictures instead of helping, with multiple users branding it “absolutely disgusting”.

Dr Kirwan explains that those near the scene may feel a “social responsibility” to share their knowledge, particularly in situations where there is a fear of media bias. It is also important to remember that shock and panic can make us behave differently than we normally would.

Yet the reason this behaviour often jars is because we all know what motivates most of us to post on social media: attention. It is well-documented that Likes and Shares give us a psychological boost, so it is hard to feel that this disappears in tragic circumstances. If we imagine someone is somehow “profiting” from posting traumatic images, this can inspire disgust. Fraustino even notes that posts with an image are significantly more likely to be clicked on, liked, or shared.

Yet, as Dr Kiwarn explains, Likes don’t simply make us happy on such occasions, they actually make us feel less alone. “In situations where people are sharing terrible information we may still appreciate likes, retweets, [and] shares as it helps to reinforce and validate our beliefs and position on the situation,” she says. “It tells us that others feel the same way, and so it is okay for us to feel this way.”

Fraustino also argues that these posts can be valuable, as they “can break through the noise and clutter and grab attention” and thereby bring awareness to a disaster issue. “As positive effects, emotion-evoking images can potentially increase empathy and motivation to contribute to relief efforts.”

The judgement

The common thread isn’t simply the accusation that such social media behaviours are “insensitive”, it is that there is an abundance of people ready to point the finger and criticise others, even – and especially – at a time when they should focus on their own grief. VICE writer Joel Golby sarcastically summed it up best in a single tweet: “please look out for my essay, 'Why Everyone's Reaction to the News is Imperfect (But My Own)', filed just now up this afternoon”.

“When already emotional other users see something which they don't perceive as quite right, they may use that opportunity to vent anger or frustration,” says Dr Kirwan, explaining that we are especially quick to judge the posts of people we don’t personally know. “We can be very quick to form opinions of others using very little information, and if our only information about a person is a post which we feel is inappropriate we will tend to form a stereotyped opinion of this individual as holding negative personality traits.

“This stereotype makes it easier to target them with hateful speech. When strong emotions are present, we frequently neglect to consider if we may have misinterpreted the content, or if the person's apparently negative tone was intentional or not.”

Fraustino agrees that people are attempting to reduce their own uncertainty or anxiety when assigning blame. “In a terror attack setting where emotions are high, uncertainty is high, and anxiety is high, blaming or scapegoating can relieve some of those negative emotions for some people.”

Amelia Tait is a technology and digital culture writer at the New Statesman.