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Abstract
This paper contributes to a growing literature exploring the embodied emotions involved in death studies. It does so through a creative cathartic autobiographical account of living through and on from breast cancer. In presenting this ‘storifying experience’, this UK-based paper has three key aims: first, it attempts to counter the disjuncture between the fleshy and emotional cancer journey I have travelled through and the sometimes abstract, disembodied accounts of cancer circulating in some geographical texts; second, it reveals some geographical insights that are uncovered through the use of creative cathartic methodologies which unsettle commonly held discourses about dying and surviving; and third, it poses some troubling questions for geographers working in this field with respect to the methodologies, politics and emotions of such research. In the paper, I argue that employing a creative cathartic methodology gestures towards ‘an opening into learning’ that provokes emotional enquiries about what it means to be taught by the experience of (traumatised) others. In particular, I advocate for a politicised compassion that both cares for those who are living through, with or living on from life-threatening illnesses and also cares about the complex conditions that shape their experiences, both within and beyond the academy.
Pasar por, vivir con y sobrevivir con el cáncer de mama en el Reino Unido: metodologías catárticas creativas, espacios cancerosos y una política de la compasión
Este trabajo contribuye a una creciente literatura explorando las emociones contenidas que están involucradas en los estudios de mortalidad. Lo hace a través de un relato autobiográfico de catarsis creativa de vivir a través y con el cáncer de mama. Con la presentación de esta ‘experiencia contada’, este trabajo en el Reino Unido tiene tres objetivos principales: en primer lugar, trata de contrarrestar el descoyuntamiento entre el viaje carnoso y emocional del cáncer que he recorrido y las narraciones de cáncer, a veces abstractas e incorpóreas, que circulan en algunos textos geográficos; en segundo lugar, revela algunas ideas geográficas que quedan al descubierto a través de la utilización de metodologías catárticas creativas que desestabilizan a los discursos comunes acerca de la muerte y la supervivencia; y, en tercer lugar, plantea algunas preguntas inquietantes para los geógrafos que trabajan en este campo con respecto a las metodologías, la política y las emociones en este tipo de investigación. En el artículo se sostiene que el empleo de metodologías catárticas creativas indica ‘una apertura dentro del aprendizaje’ que provoca preguntas emocionales sobre lo que significa aprender (o traumatizarse) de la experiencia de otros. En particular, se aboga por una compasión politizada que no solo cuide a aquellos están pasando por, viviendo o sobreviviendo con enfermedades que ponen en riesgo la vida, pero que también se preocupe por las condiciones complejas que dan forma a sus experiencias, tanto dentro como fuera de la academia.
Faire l'expérience du cancer du sein, vivre avec le cancer du sein et survivre au cancer du sein au Royaume-Uni: méthodologies cathartiques, espaces du cancer et politiques de compassion
Cet article s'ajoute à une littérature grandissante qui explore l'incarnation des émotions impliquées dans les études sur la mort. Il fait cela à travers un récit cathartique autobiographique d'un vécu du cancer du sein et de sa survie. En présentant « cette expérience en histoire », cet article du Royaume-Uni a trois objectifs essentiels: premièrement, il essaie de contrer la déconnexion entre l'expérience de la chair et de l'émotion du cancer que j'ai vécue et les récits parfois désincarnés du cancer qui circulent dans certains textes géographiques; deuxièmement, il découvre quelques révélations géographiques faites à travers l'usage de méthodologies créatives cathartiques qui dérangent les propos communément tenus sur la mort et la survie; et troisièmement, il pose quelques questions inquiétantes aux géographes qui travaillent dans ce domaine concernant les méthodologies, politiques et émotions d'une telle recherche. Dans l'article, j'argue que l'emploi de méthodologies créatives cathartiques est un geste vers « une ouverture vers l'apprentissage » qui provoque des questions émotionnelles sur ce que cela signifie d'apprendre à travers l'expérience des autres (ceux qui sont traumatisés). En particulier, je préconise une compassion politisée qui se soucie de ceux qui traversent ou qui ont traversé l'expérience de maladies potentiellement mortelles ou qui vivent avec, mais aussi qui se soucie des conditions complexes qui forment leurs expériences, à la fois internes et au-delà de la recherche académique.
Acknowledgements
I appreciate the generous and insightful comments made by the reviewers. I would also like to thank Avril Maddrell, Olivia Stevenson, Katy Bennett, Parvati Raghuram and Jen Dickinson whose perceptive insights helped to strengthen the paper. Finally, thanks to all my family (R+Sx), friends and colleagues who have steadfastly been ‘beside me’ during my cancer journey. Thanks also to Laura Vann and Kerry Allen for converting the figures to the correct file format.
Disclosure statement
No potential conflict of interest was reported by the author.
Notes
1. Although from the outset it must be acknowledged that this disembodied distancing may precisely be a way of responding to fleshy pain. Also, paradoxically, to a certain extent, I too have employed this disembodied distancing as a (subconscious) ambivalent writing strategy (the text traverses between my embodied presence being known/unknown, being present/absent). In other words, writing autobiographically about the subject of breast cancer feels very risky, very self-exposing. In order to ‘care for my soul’, I have (to a degree) compartmentalised the emotive autobiographical figures and the more disembodied academic account.
2. Throughout the paper, I use illness to refer to the emotional and corporeal response to the disease of cancer.
3. Indeed, there are an estimated 2 million ‘cancer survivors’ in the UK (predicted to grow to over 3 million by 2030) (NCSI, Citation2013, p. 5), while many women (and some men) in the UK are also currently living with a secondary (metastatic) breast cancer diagnosis: NCSI (Citation2013, p. 21) estimates that 24,000 people live with the progressive illness of breast cancer and 12,000 are in end-of-life care. It must also be acknowledged that 32% of people in the UK with a cancer diagnosis die within one year of diagnosis, many are diagnosed too late, are shown a lack of compassion or denied a ‘good’ death (MacMillan Cancer Support, Citation2014), so living on from cancer should not be over-valorised. Cancer is a horrible, destructive and painful disease.
4. These long-term impacts of a cancer diagnosis are recognised by the medical profession in the UK with an automatic life-long registration of a disability once diagnosed with cancer.
5. Autobiography has also been employed elsewhere in Geography (Longhurst, Citation2012; Moss, Citation2001; Tamas, Citation2014b, and see Butz (Citation2010) for a review and a discussion of the auto-ethnographic sensibility).
6. I choose to call these poems; others might not (see Madge, Citation2014).
7. The use of livingdying is a deliberate textual strategy to try and capture the reiterative and continuously morphing character of the relationship between the living and dying (see also Maddrell Citation2013 on the absence–presence relationship of the living with the deceased).
8. This particular emotional response is not assumed, of course. Some might be uninterested or unmoved, for it cannot be predicted how the paper might be read nor how its meaning might unfold because the text is ‘a contextualized and always emerging geographical event’ (Hones, Citation2008, p. 1301).
9. This paper was written at a particular moment in my cancer journey, as I emerged back into the academy and life after cancer treatment. Everything seemed so vibrant, with different ideas sparking in all directions. The paper is consequently a rather undisciplined piece of writing in terms of its form/style, traversing between methodology, substantive geographical content and political intentions. These different directions of the paper reflect the untrammeled feelings of creativity I was having as I was writing myself ‘back into (academic) being’ (c.f. Philo, Citation2014). Moreover, one of the underlying rationales of the paper is to investigate autobiography as a method in order to explore how it might expose different understandings of geographies of death and dying and to examine what ‘openings into learning’ this might generate. In other words, the linkage between methodology, geography and politics is a key feature of this paper, so it is inevitably broad in focus.
10. Although free on delivery, the National Health Service in the UK is funded through taxation.
11. This insecurity is the position of billions of people the world over, now and in the past, for life certainty/security is the luxury of the socially, geographically and healthily privileged.
12. It must also be acknowledged, however, that these three poems do have a symbolic representation of a linear trilogy of a past, a present and a future, a tripartite world vision, hinting at the difficulty of developing writing strategies that are unencumbered by a legacy of linear sensibility, that can ‘disobey epistemic rules’ and that can move towards a position of unlearning ‘global linear thinking’ (Mignolo, Citation2011) to relearn other ways of being. Moreover, while the static nature of the photographic images might be seen to raise further problems by ‘freezing’ my cancer journey at a specific moment in time, here I am using the images as a rhetorical devise, to tell a story, to act as a site of transformation rather than simply depicting an event (Tamas, Citation2014a, p. 91).
13. Hope is rarely guaranteed but has to be actively worked towards. Moreover, it is a particular emotional response, or way of being in the world, that may well be socially and spatially specific: hopefulness necessitates an understanding or belief in a secure future orientation which may well not be the case for many cancer ‘survivors’ (and others) in many parts of the world/nation.
14. Although in other situations there may be (distressing, painful, traumatic) corporeal finality associated with cellular death.
15. Thanks to Katy Bennett for this particular phrasing.
16. I take on board Bondi's (Citation2014b) point that qualitative research practice often already uses psychoanalytical techniques, such as the receptive unconscious in the establishment of rapport. I would, however, also endorse her view that use of such techniques might require professional support (see also Bennett, Citation2009).
17. This is evidenced by the successful campaigning in the UK to protect cancer patients from welfare changes with respect to Employment and Support Allowance and by recent calls by Macmillan Cancer Support (http://www.macmillan.org.uk/Aboutus/News/Latest_News/UKcancercarecrisislooming,warnsnewreport.aspx) for all political parties to prioritise cancer in their manifestos with respect to delivering cancer outcomes that match the best in Europe, ensuring cancer patients are treated with the highest levels of respect and dignity and improving end of life care.
18. Here I am thinking of practices such as continued long-term sick pay, graduated returns to work, reasonable adjustments to teaching obligations, attention to timetabling, reduction in REF outputs without long-term career damage, etc., all of which have resource implications and make demands on everyone involved.