by Dr Anne Grinyer, Faculty of Health and Medicine, Lancaster University, UK
The Fault in Our Stars by John Green (2012) is the fictional account of the love story of two teenagers, Hazel and Gus, both living with terminal cancer. The book is a bestseller and the film topped the box office on its opening weekend. Having been involved in researching the life stage impact of Adolescent and Young Adult (AYA) cancer for the last 15 years, I read the book and watched the film, interested in how issues I had discovered in my research might be addressed in popular culture. However, for many readers and audiences, it will be the first time they have encountered a story about cancer in this age group; if the audience at the screening I attended was typical, many tears are being shed. However, I had been determined not to be moved to tears by what mixed reviews described as a film: ‘sink[ing] slowly into gooey mawkishness’ and a ‘manipulative, lachrymose melodrama’ (The Independent); ‘an effective (and affecting) weepie’ (The Guardian); ‘an emotionally draining movie’ (Natalie Stendall) and the Telegraph review – which after suggesting that the film draws on moral equivalences that are ‘actively repulsive’ – says ‘there’s fine work here’.
For me the ‘fine work’ was to throw into sharp relief some of the life stage issues that adolescents and young adults face when they have cancer. John Green, a former student chaplain in a children’s hospital, presumably drew on his first hand observations of just such situations and many of the threads woven in to the story resonated with my own research findings.
For example, the interruption to the life trajectory at a crucial stage of transition between childhood and adulthood; young lives that are constrained by illness at a time when independence and freedom is being celebrated by peers; the over protectiveness of heartbroken, loving parents who tread a fine line between wanting their son or daughter to make the most of the remainder of their lives while trying also to keep them safe; the conflict that can erupt in a loving family. The difficulty of having ‘end of life’ conversations, parents trying to shield their son or daughter from harsh realities and the son or daughter trying to do the same– as Hazel’s mother says towards the end of the book and the film “Even if you die,” and for the first time Hazel responds with “When” [not if]. It also seemed significant that when Hazel was dangerously ill in hospital Gus was not allowed to see her as it was ‘family only’. The same happened to Hazel when Gus was close to death; as she is sitting in the hospital waiting room Gus’s mother tells her it’s ‘family only’. The role confusion for parents and their son or daughter’s partner is complex at this age and can also be difficult for health professionals to manage.
Some issues emerged to a greater extent in the book – Hazel and Gus’s insecurity about the impact of the illness and treatment on their bodies – her ‘fat chipmunked cheeks’, his amputation, and the threat these manifestations of cancer posed to their sexual attractiveness – in the film there is little evidence of diminished attractiveness. Being marginalised from peer group activities is evidenced in the book by Hazel’s attempt to shop with her friend Kaitlyn in the mall, but this was omitted in the film. In the book Hazel sat and watched Kaitlyn look for shoes, she occasionally circled back to show them to Hazel who was too tired to do anything but sit and watch. Despite her fatigue, Hazel chose not to go home at the end of the shopping trip as Kaitlyn marched off with ‘swishing hips’. Instead she wanted two hours to herself to escape her mother’s ‘perpetual nearness’.
There is little mention in either book or film of the appropriateness of the care setting – Hazel had been treated in a Children’s Hospital, Gus in an Adult Hospital, neither of which may be an ideal environment for this age group who feel out of place and isolated surrounded by children or much older adults. The experience of ‘incongruent intimacy’ that both parents and young people may feel when personal, physical care is needed in the home was skilfully avoided. There was also no mention of the threat to fertility as a result of the treatment – a significant concern for those who survive AYA cancer – and we should not allow the film to let us overlook the fact that the majority of young people do survive. While a focus on terminal cancers may make for more powerful drama, this can be alarming for those going through the illness.
On balance I think addressing the issue of cancer in this age group in popular culture is beneficial. Many young people undergoing treatment can feel as though they are the only teenagers ever to have what is perceived to be an illness of older age, but this exposure brings the issue into the public domain in a very accessible way and may increase awareness that, while relatively rare, cancer is a disease of the age group. Thus there may be a beneficial effect on delayed diagnosis caused by young people being unaware that symptoms could be serious; peers may understand better the importance of maintaining contact and continued inclusion in friendship groups; parents may be reassured that the struggle they experience to ‘get it right’ is not situated in any failure on their part but is almost inevitable under such circumstances.
So did I manage to resist weeping at this movie? No I did not. While moved deeply by what I heard and saw during my years of research, I had managed to sit dry eyed at the hospital bedsides of seriously ill teenagers, some of whom were dying, and in the homes of bereaved parents. Yet as the film unleashed memories of these young people and their families, I was overwhelmed with a sense of the pain, loss and grief I had witnessed. Perhaps watching such a movie is cathartic for professionals who need to maintain boundaries and who cannot break down emotionally in front of their patients or participants. We can, however, do it under cover of dark, in a movie theatre.
Green, J. (2012) The Fault in Our Stars, Penguin, London.
The Fault in Our Stars (released 6.6.14) 20th Century Fox.
URLs for the movie reviews
Dr Anne Grinyer is a medical sociologist and Senior Lecturer in the Faculty of Health and Medicine at Lancaster University, UK. Since 1999 Dr. Grinyer’s research, supported by the George Easton Memorial Trust, has focused on the effect of life stage in adolescents and young adults (AYAs) with cancer, and covers four main phases. The first phase focused on the impact a cancer diagnosis at this age has on family dynamics particularly in terms of the life stage of the AYAs. The second phase was based on interviews with young adults with cancer in order to understand the life stage issues from their perspective with a particular focus on the setting of care. The third phase examined long term survivorship and the ongoing impact of life stage at diagnosis. The fourth phase addressed palliative and end of life care for the age group and the challenge of providing age appropriate care. Each phase of the research has resulted in a number of publications including books based on the qualitative data collected from participants. The books are:
Grinyer, A. (2002) Cancer in Young Adults: Through Parents’ Eyes, Buckingham, Open University Press.
Grinyer A. (2007) Young People Living with Cancer: Implications for Policy and Practice, Buckingham, Open University Press.
Grinyer, A. (2009) Life after Cancer In Adolescence and Young Adulthood: Late Effects and Long Term Survivorship, Oxford, Routledge.
Grinyer A. (2012) Palliative & End of Life Care for Children & Young People: home, hospice and hospital, Oxford, Wiley Blackwell.
Anne also has an interest in the ethics of health research and in research design and has published a number of papers on this topic.