Patient affects - happiness, thinking positive and Breaking Bad - Yasmin Gunaratnam
/For the past couple of weeks, laid low by something or another, I've been in the thrall of Vince Gilligan's TV drama Breaking Bad, a hyperbolic tale of the destruction and moral chaos unleashed by a terminal diagnosis. Breaking Bad tells the story of Walter White, an etiolated, 50-something chemistry teacher in Albuquerque, who turns into a crystal meth chef, using his scientific know-how to bestow the market with a chemically superior product. White's initial foray into the violent and racially demarcated economy of illegal drugs is to raise enough cash to pay for his lung cancer treatment and to secure his family's financial security. Along the way, a slow simmering rage and megalomania spiral out of control. There are gory turf wars, vainglorious cruel lies. Especially perturbing are the uncanny proximities between the worlds of crime and oncology - drug cartels, poisoning, toxic chemicals, severed body parts, bodily explosions in care homes.
If, at times, you can almost smell a terminal machismo wafting out of the screen, there is another more pressing question to mull over: when death is breathing down your neck why live by moral constraints?
Image Creative Commons martz90-d41adzl
Breaking Bad does for cancer and Anglo men what Fight Club did for support groups, forcing a confrontation with the pathologies of normative masculinity distilled and freed by illness. The radical reinvention of the sick role in Breaking Bad got me thinking about the drama's constitutive others, women of colour and compliant patients, as well as the darker side of patient affects - anger, bitterness, resentment, violence, manipulation and hatred.
We rarely witness such emotions in stories of illness and disease. How often do we see the unbridled damage that cancer and other diseases do to bodies, psyches and relationships? And what about the different facets and histories of more upbeat feelings?
Research into media coverage of cancer has uncovered a consistent tendency towards a rose-tinted portrayal of cancer stories and the predominance of what the sociologist Arthur Frank calls 'restitution' illness narratives: illness is a temporary setback that can be outwitted. The Euro-American world seems to love restitution illness narratives. Research, over a decade ago, by Clive Seale on Anglophone newspaper articles, identified a 'cancer heroics' in media stories, full of gender tropes. When cancer stories were covered by the press, women's emotional resilience was highlighted. For men, cancer was a test of character. Women must feel. Men must fight.
Photo Jean.Julius/Wikimedia Commons used under CC Attribution - See more at: http://berlinbooks.org/brb/2012/12/negative-thinking-as-a-path-to-happiness/#sthash.E9SMamEe.dpuf
But the media is only one player in the creation of the cancer heroics marketplace. Sue Wilkinson and Celia Kitzinger spotted the workings of a moral economy and the injunction for people with cancer to 'think positive' in the self-help literature and in social science and psycho-oncology studies. In the case of the latter, Wilkinson and Kitzinger highlight the implicit 'victim blaming' themes of studies that have tried to eek out causal relationships between psychological states and disease progression.
In 13 focus groups with 77 women with breast cancer in the UK, Wilkinson and Kitzinger traced the interactional effects of the spontaneous use of the cultural idiom 'thinking positive', in conversations between the women. They found that the phrase served to both signal and to close down emotionally difficult and threatening topics. As discourse analysts, Wilkinson and Kitzinger do not assume that what you say is the same as what you feel or live. In the case of 'thinking positive' they ask us why someone would want to present themselves as if they were 'thinking positive',
We suggest that, rather than simply reporting cognitive content, one of the functions served by talk about``positive thinking'' is to round off and close down``troubles telling'', while simultaneously making it possible for troubles telling to take place. Talk about unpleasant experiences and negative emotions can often be hard for other people to engage with: the use of a conversational strategy like ``think positive''means that the speaker can bring her troubles talk to an ``upbeat'' end, relieving her listeners of a potential conversational burden. (p.805)
If 'thinking positive' is an expected emotional comportment for those with cancer, it is also true that upbeat and happy people make 'good' patients who lighten the demands of care-giving. If you are pleasant and self-sufficient, or if you or your loved ones can establish some kind of rapport with professional carers, you will probably get better care. And with the slow erosion of welfare services, anyone who has been in receipt of care recently - no matter how inadequate - can't help but feel in some way hopelessly (desperately) grateful.
In a recent essay on 'What happiness conceals', the economist, John Quiggin, offers an eloquent overview of how happiness (and misery) have been approached across the political spectrum. In a market economy, Quiggin believes that the welfare state occupies a crucial position in how political distinctions are drawn with regard to the role and social consequences of un/happiness. As Quiggin points out, on the political left there has always been a revolutionary potential in misery,
'Some on the Marxist left have argued that, like religion, social welfare is an opiate for the masses. By dulling the pain of poverty and unemployment, both welfare and religion diminish the anger that workers ought to feel at a system that exploits and alienates them. The revolutionary alternative would be to ‘heighten the contradictions’ of capitalism – by making it more miserable, until it is no longer tolerable.'
These politics of emotions take on flesh at the sickbed. In their autobiographical stories of cancer, Audre Lorde and Anatole Broyard are among those who have railed against the happy, compliant patient. Lorde refused to be passive and to accept the binary of physiological and social pain. Cancer pain for Lorde was intimately connected to her life as a black lesbian feminist. In an entry in The Cancer Journals on March 1, 1979, she wrote,
Lorde in 1983. Photograph: Robert Alexander/Getty Images
'Is this pain and despair that surround me a result of cancer, or has it just been released by cancer? I feel so unequal to what I have always handled before, the abominations outside that echo the pain within...I do believe not until every woman traces her weave back strand by bloody self-referenced strand, will we begin to alter the whole pattern.' (p.5).
That a genealogy and tracing of a Lordian interweaving pain can be obscured by the valorisation of positive affects has been a subject of feminist analysis. In The Promise of Happiness, Sara Ahmed contends that happiness in colonial history has been a 'technology of citizenship, as a way of binding migrants to a national ideal' and directing attention away from histories of racism and exploitation (p.133).
Writing in a special issue of Feminist Review on 'affects and creolisation' in the Caribbean, Joan Anim-Addo and Suzanne Scafe suggest that recognising the puckered fabric of emotions such as pain, fear and joy can be a way of historicising and better deciphering the varied relationships between emotions and the everydayness of survival and getting-by.
In her exploration of stories of the plantation in literary texts, Anim-Addo's attentiveness to the regulation and masking of emotions among women, theorises creolisation as an event that tattoos the performance of certain emotions with inventive and subversive affects. In a system where 'the black woman was neither allowed to show feelings nor expected to have them' (p.11), dissimulation becomes a potential source of 'counter-politics, a counter-imagining, a counter-metaphysics' (p.10), outside of the direct control of the regimes of the plantation. In Anim-Addo's 'poetics of resistance', there is more going on than the usual tendency of cultural analysis to think of the exercise of power as defining subjectivity and resistance for those at the bottom of social hierarchies. Through the errant feel of a range of ordinary emotions - as Brennan's 'physiological things' - Anim-Addo questions affect as being wholly independent from intention and meaning, as some affect theorists such as Brian Massumi believe.
The collective living of the creolisation of emotions in this sense becomes a complex 'web' of quotidian interconnections, not only between normalisation and resistance, but also of shifting relationships between minds and bodies, feelings and thinking (see Ruth Leys for a brilliant discussion of these relationships in affect theory). As the cultural theorist Lauren Berlant has reminded us, shifts in consciousness of injustice and violation from the foreground to the background, can suggest a certain habituation of 'not thinking'. Yet 'not thinking' does not mean thoughtlessness. In Berlant's words,
'Being overwhelmed by knowledge and life produces all kinds of neutralizing affect management - coasting, skimming, browsing, distraction, apathy, coolness, counter-absorption, assessments of scale, picking one's fights, and so on.' (p.6)
Some of these themes came to mind with recent research on happiness among Black Caribbean and White British people living with advanced cancer, carried out by researchers at the Cicely Saunders Institute at King’s College (London). Jonathan Koffman, from the King's research team, identified different factors that can shape the meanings of happiness at the end of life. These included, distressing physical symptoms and supportive and loving family and kinship networks. More prevalent among Black Caribbean respondents was ‘realising personal meaning in life’, most often associated with a connection with God and prayer. Koffman found that the realm of happiness related to 'personal meaning' and its spiritual and religious associations, was not eroded by cancer pain (you can listen to Koffman's lecture on the happiness research below). As one African Caribbean man in the study put it,
"Yeah, I believe in God, because as I said, sometimes when I wake up in the morning and the way I feel and I pray to God and you think to yourself, "Am I going to stay like this all the days of my life? Am I going to feel like this all the days my of my life?’. He justifies me and he gives me peace; he gives me love. And you feel different, you feel strong, you feel healthy, you feel happy in your mind."
Koffman believes that the understanding a clinical problem at the end of life would be enhanced by attention to cultural differences in patients' stories. As the feminist literature also suggests, we need to think about the histories of emotion that are embedded in such differences and the extent to which the affective and bodily detritus of these histories can ever be put into words.
As I have discussed elsewhere, one of the challenges for care-giving is that it must also become 'poetic', reading between the lines of patient narratives and imagining what is felt but might not be said or consciously/consistently thought. This includes questioning the prevalence of a modern secular reasoning and temporality - what the philosopher Charles Taylor has called the 'presumption of unbelief' (p.13) - with its rejection of the possibility of religious faith as the pursuit of a higher good beyond the immediacy of human flourishing.
There is so much to say about the differential gathering and intensity of emotions at times of illness and death. If Breaking Bad hypes up dystopian affects and onco-rage so that it can undo the fantasy of the good and grateful dying, what about the good and the grateful? I for one, have been wondering about how breaking bad in the Audre Lorde tradition can create other normative hierarchies.
Amidst the labour to name and uncover injustice do we devalue or at least misrecognise those who do not get angry or who mask and detoxify difficult emotions? What about the revolutionary potential in making good as survival?
Note
i. The phrase 'breaking bad', according to Vince Gilligan, comes from Virginia and means to raise hell. It also has more violent connotations.
ii. Jonathan Koffman's YouTube lecture discusses recent cross-cultural evidence about the meanings of happiness among those who are living with, and dying from, cancer. Details of the research can be found at: Psychooncology. 2013 May;22(5):1096-103. doi: 10.1002/pon.3108.