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“All of me is wrong.” This is how one dying woman, Mrs Hinson, described her pain to her doctor, Cicely Saunders. Saunders would often re-tell the story to explain her ideas about ‘total pain’ where there are no clean divides between what is physical, emotional, spiritual and social.
If you’ve never come across the idea of total pain before, “All of me is wrong” will give you a flicker of the idiosyncratic magic through which Saunders and her supporters began to revolutionise the care of dying people in the late 1960s—and at a time when science and art didn’t talk to one another.
It’s in the concept of total pain that you can see the coming together of Saunders’ many lives as a scholar of Philosophy, Politics and Economics at Oxford, a nurse, a medical social worker and a doctor. This doctor carried a tape recorder. She sang in a choir, read poetry, had a weakness for Polish men and possessed the keen eye of an ethnographer. The archive of documents that she amassed over her working life is held at King’s College in London. It’s a quirky treasure trove of the various sides of her personality and interests.
Alongside the fold-out, hand-written charts of her experimental trials with pain relieving drugs there are letters, photographs, prayer diaries, patient interview transcripts and personal observations, both sublime and earthy. “It seemed the pains went with me talking,” one patient remembered; “I’m bored underneath” said another; and one of my favourites—“Sister confiscates ‘Lady Chatterley’s Lover.’”
Cicely Saunders came into my life in the summer of 1992. My mother was able to die at home and without pain because of the home care that was set up for us by St Christopher’s Hospice, which Saunders had established in South East London in 1967. It’s widely believed that this new institution kindled the latter day hospice movement.
I don’t think I’d heard of the word ‘hospice’ at that time, but the impact of the care we received was profound. Imagine week after week, in and out of your local hospital, seeing different doctors, being in different wards, and editing down all your crazy thoughts, fears and questions because you don’t want to take up too much time or get a reputation as ‘one of those’ difficult or pushy relatives.
It’s an out-of-body type experience. Waves of existential shock shadow down-to-earth concerns about where to park, being able to remember what each drug does and when a commode will arrive. The first visit by ‘our’ hospice home care nurse to assess my mum’s needs took place in our front room. The visit lasted for over an hour and a half.
This is how my research into end-of-life care began. Admittedly, it’s been a strange journey for a feminist of colour like me. The worlds of feminist scholarship and activism, and end-of-life care, have often felt poles apart. It’s only more recently that I’ve begun to see the concept of total pain as offering a fleshy companion to feminist discussions of intersectionality that have long informed my thinking. My research on ‘social pain’ and suffering—the pain of social exclusion and the most neglected facet of total pain—has been pivotal in this turning point.
For the legal scholar Kimberlé Crenshaw (writing in the late 1980s), intersectionality provided a means of naming overlapping “patterns of subordination” in the lives of women of colour, especially when the law and community organisations didn’t recognise them. Here’s an example of Crenshaw’s: impoverished migrant women escaping domestic violence in North America were often caught between violent men, the law and women’s refuges, which sometimes excluded them because they didn’t have interpreters. So although refuges were set up to support all women, in practice differences of class, ethnicity, language and citizenship could sever the most vulnerable of women from this lifeline.
How does intersectionality connect to total pain?
To state the obvious, ‘total’ pain is intersectional in that it imagines pain as an intertwining of the physical, the spiritual and psycho-social. What’s more, many of the questions raised about intersectionality also apply to total pain: are its components distinct and additive—piling up on top of one another—or are they always already mixed and kaleidoscopic? Working across these different worlds has made me think about how total pain might apply to the intersectionality of social dispossession and vice versa.
The penny dropped when I began to imagine total pain, less in terms of grids and fractions and more as a yin/yang relationship. While different kinds of pain can appear as distinct, the artful aesthetic of total pain is that it allows for a waxing and waning between various forms of distress. At times, some aspects of pain might be more prominent, while others can be withdrawn, in ways that are similar to the experience of different forms of injustice. Might pain and oppression be like love? A thunderbolt at times, and also something that’s more slow burning?
The matter of time is especially significant. In her observations of people at the end of their lives, Saunders recorded the strange temporalities of social pain, though she never delved into this territory fully. Pain and trauma, she found, could burrow from one time into another—as when she witnessed the experiences of concentration camp survivors returning in hallucinations at the end of their lives. Saunders wrote that dying people “sometimes had recurrent nightmares, reliving traumatic experiences of past lives such as war and internment.”
Literature, psychoanalysis and the humanities have long recognized what Elizabeth Freeman calls ‘temporal drag’—how time is layered, with the past continually intruding into and tugging on the present. The temporal drag of slavery, for example, has been a theme in the novels of writers such as Toni Morrison and Jamaica Kincaid, where pain and grief are simultaneously personal and social, historical and of the moment.
Recent brain science is adding to our knowledge of the anatomical depth and longevity of social pain, and some studies support Saunders’ belief in the intimacy between physical and social pain. Experiments have found that the same part of the brain fires up when you put someone’s thumb in a vice or when you exclude them from a computer-simulated game of catch. In other words, social exclusion hurts.
Studies by Rachel Yehuda of the children of Holocaust survivors explore whether Post Traumatic Stress Disorder, which Saunders seemed to treat as pain, is more than an individual experience and can be passed across generations. More recent research with mice suggests that anxiety, or its unconscious memory, can haunt at least two generations.
In an interview with the BBC, Professor Marcus Pembrey of University College London called the findings of this research “highly relevant to phobias, anxiety and post-traumatic stress disorders.” “It is high time,” he added, that “public health researchers took human trans-generational responses seriously.” Might there be a biological truth to the fiction of Toni Morrison and others who have imagined how social injustices from the past can blight households and communities in the present?
For me, these observations establish a compelling case for how we might think about the intersectionality of pain and injustice as lived through differences of time; and how the intermingling histories of social injustice, some of which we might not even be aware of, can shape our lives, our health and our deaths. Is it possible, for example, that the violence highlighted by #BlackLivesMatter or the refugee crisis in the Mediterranean could afflict future generations? Does the unnecessary suffering that we are witnessing now carry past wrongs?
The value of total pain and intersectionality is that they have the potential to name and legitimise inchoate feelings and experiences. Bringing the two approaches together and thinking about their temporal aspects feels important. Total pain can help us to understand the bodily toll of interlocking injustices, while intersectionality can provide a means to think about the social complexity of an individual’s suffering.
Both concepts offer a means to bring the deep individual and collective pain of social divides into better view—those violations that can be denied or forgotten but will not go away.