‘A true tale of love, death and DNA’
I saw this affecting work last night at Jackson’s Lane Theatre, North London. The Penny Dreadful production is currently on a UK National tour. The play is a profoundly thought-provoking piece, which directly challenges us to consider issues around mortality, immortality, and the ultimate question of what happens to us when we die.
Do we cease to be at that point?
The Henrietta Lack story encourages a consideration of this question. Lacks died as a result of cervical cancer in 1951, at the age of 31. However, the cells from her aggressive cancer, known as HeLa and which contain all the DNA that constituted Lack’s genetic make-up, continue to survive and to replicate in laboratory conditions, producing the first ever ‘immortal cell line’. Despite the dubious ethical issues that surround the original procurement of Lack’s cells (her children were never told, and Lack’s cells were public property until 2013), research based on HeLa has been directly responsible for the development of treatments for conditions such as AIDs, cancer, cystic fibrosis and vaccines, and many more. HeLa cells have also provided the foundation for mapping the human genome.
How To Be Immortal interweaves three true stories: Henrietta Lack’s own story and that of Dr Gey and his wife who ‘discovered’ HeLa in 1951, the story that Lack’s daughter Deborah (1996) was born into (she was a baby when her mother died) but only discovered later in life, and the contemporary narrative of Rosa and Mick. Mick, similar Lack, also has a rare and aggressive type of cancer, from which he dies. The issue of research, using cells from his tumour – this time with consent – is presented to the distraught Rosa. She agrees, and the outcome leads to a healing of sorts. Deborah also seems to experience a coming-to-terms with her mother’s death, and with its aftermath
I applaud the blend of science and of the essence of humanness, particularly its essential vulnerability, that How To Be Immortal successfully balances to create a living performance that raises questions it does not necessarily set out to answer. It is our job, the audience, to consider what has been presented to us:
Who and what are we, and does our ‘make-up’ extend beyond our DNA?
When we die, what do we leave behind? A contribution to some genetic pool, or memories, that may only remain until the death of the last remembering person?
Unanswerable questions, perhaps, but worthy of reflection…
…which is a quote from Anna Quindlen, the Pulitzer Prize winning journalist, novelist and essayist.
But her question does not in any way relate to her hugely impressive CV and achievements. Rather, it stems from her encounters with healthcare professionals, which has prompted her reflections on the extent to which she was seen as an individual in that context, as a person rather than as ‘just another patient’.
The writer was recently invited to deliver the Humanism in Medicine lecture at the Association of American Medical Colleges (AAMC) annual meeting (http://humanizingmedicine.org/anna-quindlen-advises-physicians/).
Quindlen’s question – “Do you know who I am?” – arose from her experience of two separate medical encounters, both involving anaesthesiologists. The first was patronising (my judgement call), and left her doubtful as to whether he knew anything about her or about her previous history.
The second encounter was a positive one:
“Only a short interchange, yet in some fashion she knew who I was.”
Quindlen continues:
“And I assume she was at least as busy as her male colleagues.”
But gender distinctions are not the point. Instead, what Quindlen wants to get across is that she felt ‘seen’ by one professional, and not by the other.
“She was professional, and she was kind. Oh, what a combination that is in what often seems like a cold and inhuman world.”
Quindlen sees the problems in health care – patients feeling ignored, isolated, patronised – as part of a larger societal problem. Power relationships wherever they occur, and which too often underlie the doctor-patient encounter, ‘foment fear and mistrust and alienation’. She speaks of the ‘MDeity’, doctors as little gods, and is surprised how pervasive this remains, despite huge technological and other advances.
Quindlen’s conclusion is that in the end, the person – the patient, the sufferer – seeks and needs ‘the human touch’, to be seen as an individual, and to be considered as such.
She ends with advice for the doctors she addresses:
CQ
The poster for this conference epitomises the creativity and richly imaginative content that defined the event itself.
I have attended many ‘Medical Humanities’, ‘Health and Humanities’, ‘Medical Narrative’ and such like conferences in the past. Medicine Unboxed 2013 – with this year’s theme of Voice – stands alone as something uniquely innovative and stimulating, as well as both emotionally and intellectually challenging.
The twitter (#MU13VOICE) and facebook feeds are excellent and will give you a real sense of the diversity and substance of the content. Although I could only attend the first day, I was so very pleased to have been physically present for even 50% of the entire programme.
‘Voice’ (full programme – http://www.medicineunboxed.com/2013-voice/) was presented and discussed as the poetic voice (Jo Shapcott and Andrew Motion), the patient (Rhys Morgan), the captured voice (Fi Glover, The Listening Project), the singing voice (Birmingham Medical School Choir, Melanie and Rebecca Askew), the performed voice (Bobby Baker), and the sung voice (in terms of composition and phonetics, and music as therapy, and as an end in itself).
It is difficult to pinpoint exact reasons why I found the conference so refreshing and stimulating. The absence of medical-type presentations contributed, and Sam Guglani et al.’s creative approach to all possible aspects of ‘Voice’ in terms of health and medicine was hugely impressive.
I wonder whether the audience consisted of many non-medical/non-health-care professionals. One thing that irked me was the repeated use of the word ‘patient’. It grated. Perhaps this is because I no longer work in clinical medicine. As an ‘outsider’, ‘patient’ feels like a label that attaches an otherness to those who are ill, whereas in fact, as identified by Susan Sontag, the gap between ‘them’ and ‘us’ is very narrow…
My experience of sitting outside clinical medicine left me much to consider also following the session on the ‘Medical Voice’, in which Iona Heath, Deborah Bowman, Julian Baggini and Charlotte Blease participated. A ‘crisis in empathy’ amongst doctors was highlighted here, and there was much discussion on how medical training could be improved to address this.
I have often been critical of the lack of empathy and compassion that those who are ill have experienced during the medical consultation. I left clinical medicine a few years ago, to explore medical humanities/health and humanities (not quite sure what to call it anymore), and now work as an editor for an organisation that creates books on health and illness for children. We recently advertised for a junior doctor for the role of a medical writer. I was overwhelmed by the quantity (and quality) of the applicants – over 20 junior doctors, all disillusioned by their first years in clinical medicine. Most had no intention of ever returning to the field.
I found this sad, that the system (‘medicine’, the NHS…) had somehow failed them to the extent that just a few years working as clinical doctors made them want to walk away. We are quick to criticise doctors and how they behave, which is sometimes, but not always, justifiable. Yesterday, I found myself in the unusual position of wanting to make a plea for the ‘Medical Voice’, that it might be heard and witnessed too…
My view has inevitably been tempered by my distancing. For a perspective from a doctor within clinical medicine, do check out Jonathon Tomlinson’s response to Medicine Unboxed 2013, which truly reflects a ‘Medical Voice’ that needs to be heard: http://abetternhs.wordpress.com/2013/11/23/burden/
CQ
I first came across the writer and medic Gabriel Weston when I read her debut book and memoir Direct Red (2009), which won the PEN/Ackerly Prize for Autobiography. I liked it. Weston’s personal account of the challenges of balancing clinical committment in a morally ambiguous (male) world resonated strongly for me.
Weston’s current book is also her first work of fiction. However, with the scenario remaining firmly within the world of medicine, the workings of a medical mind behind the pen of Dirty Work were apparent throughout. Clinical moral dilemmas remain pervasive in the novel, specifically in this case that of doctors performing abortions.
I enjoyed the experience of reading Dirty Work, particularly when Weston’s medical background facilitates thought-provoking reflections:
‘A good doctor needs to know how to spin a yarn. That’s what they teach you at medical school, though no one ever says it in so many words… They call it history-taking, this supposedly neutral process in which a patient and doctor collaborate to weave a shape out of what’s gone wrong. They make it sound straightforward.’
Weston continues to consider how, as doctors ‘take the history’, they encourage patients to dwell specifically and exclusively on symptoms, ‘ignoring the white noise of emotion’.
‘The doctor is rewriting the patient’s story while seeming only to bear witness to it.’
A mistake, a clinical error, results in suspension for the female medical protagonist, who is subsequently investigated by the hospital Fitness-To-Practise committee. The novel follows her throughout the three week questioning period, and witnesses her change of attitude towards medicine in general, as well as the part she herself plays within the field.
She learns much about herself throughout this process, and concludes:
‘I have done much worse than not articulating the particularities of my own experience. I have been deaf to those of my patients.’
‘What a doctor needs…is a quiet appetite for truth.’
I enjoyed the experience of reading this book (an experience that reminded me of Louise Doughty’s Apple Tree Yard, perhaps the not dissimilar themes of female protagonist, career woman, moral dilemma, ‘perfect’ life going astray…).
The plot went a little off track for me towards the end. The ending itself left me dissatisfied, and brought to mind something I heard the film director Mike Figgis say recently. Figgis deliberately chooses open-endedness in his films, this sense of not being finished or closed allowing viewers to create their own conclusions. Whenever he reads a book, he stops 20 pages or so before the end, as most imposed closures ultimately disappoint. I can relate to this. The ending in Dirty Work was not a ‘bad’ one. It just left me a little disappointed, and flat.
It will be interesting to see where Weston’s writing heads from here. To date, her medical background informs the content of her books. Whether she will stick to this theme or whether she will explore other literary terrains, remains to be seen.
CQ
I saw this tonight, and really enjoyed it. Even though the subject matter – illness, death, difficult relationships, loss – may appear ‘heavy’, I am glad I experienced it.
Melanie Spencer’s play is not perfect – it felt slightly too long and would have benefitted from deleting some scenes – but it effectively deals with very tricky life events imaginatively, sensitively, and with an appropriate, and important, dose of humour.
Daisy is almost 16. She is off school in her GCSE year, as she has recently been diagnosed with the autoimmune disease lupus (systemic lupus erythematosus). She lives with her dad, Peter. Her mum died from cancer just 18 months earlier.
Much of the play focuses on the relationship between Daisy and her dad, which is mostly fractious and involves much shouting (and non-listening) and storming out scenes. Peter still grieves for his wife. Daisy feels not understood by her dad.
Daisy’s best friend Alice loyally visits her pal regularly at home, updating her on school work and on school gossip. Theirs is an affecting and touching relationship, which holds much that feels real and raw, and full of teenage-appropriate angst.
As Daisy embarks on a course of low dose chemotherapy treatment, her dad calls on his wife’s sister Diana for help. Struggling to make ends meet, he cannot take the time off from work to accompany Daisy on her hospital visits. Diana, who appears to have had some mental health issues, is initially reluctant, but rises to the occasion, and ultimately thrives on this new challenge, and purpose, in her life.
There are many issues here, including serious illness, death of a parent/spouse, grieving, loss, mental illness, and not least, the challenges that teenagers face, which are so greatly enhanced by the arrival of serious illness.
I particularly loved the ending. It was open-ended enough to allow you to consider and to personally reflect on much of the stuff you had experienced, but also poignant and touching, and importantly spotlighted on teenagers, whose story it ultimately is…
CQ
Living through the Arts 