Portal de Periódicos da CAPES

Pharmacopoeia: Illness narratives

2021; Wiley; Volume: 87; Issue: 8 Linguagem: Inglês

10.1111/bcp.14891

1365-2125

Liz Lee, Susie Freeman,

Digital Imaging in Medicine

For over twenty years the art partnership known as Pharmacopoeia has been making art at the heart of which are pharmaceuticals in the form of pills and capsules and their packaging. It is a collaboration between myself a general practitioner and the artist Susie Freeman. Our themes are predominantly medical and frequently based on my work in general practice. Our artworks are unusual, sometimes wearable and often beautiful which makes them accessible to a worldwide audience. In the act of taking pharmaceuticals out of the pharmacy and into the gallery our overarching aim is to encourage people both to look and think about medicine in new and different ways. At the heart of Pharmacopoeia's work is a technique called pocket knitting, which Susie invented as a student at the Royal College of Art in the 1970s. Individual pills and capsules are trapped in pockets of fine nylon mesh to form large flexible fabrics. Similar structures encase larger pill packets and the result, thanks to the great product design of pharmaceutical companies, are beautiful sheets of jewel-like colour and shine. From the outset, our use of active pills caused difficulties that had to be resolved. Firstly, there was the question of legality. Would we be breaking the law? In 1998 we asked the clinical pharmacologist Professor Joe Collier for advice. He thought for a while before replying “There isn't anyone in the country who can give you permission to make this work, there are only people who can say no”. This was not the answer we had been hoping for. After considerable thought we took the decision to ask no-one for permission but to take full responsibility for both ensuring the work was safely stored and safely exhibited. We also decided never to use controlled drugs. In the last ten years, as health and safety legislation has been tightened, we have altered our practice and as a consequence recent works, such as “What Once Was Imagined” and “Sonia”, are increasingly made of empty packaging rather than active pills. The second question was how could we source the pills? This was answered by local pharmacists who have always supported the project. They advised on our choice of pills, recommended interesting shapes and colours and collected empty packaging for us. Most importantly, in the early years they were prepared to dispense huge quantities of medication ordered on private prescription. Without them nothing would have been possible, particularly “Cradle to Grave”, our signature installation. In the year 2001 the British Museum commissioned Pharmacopoeia to create an artwork to represent scientific biomedicine within their new ethnographic gallery display “Living and Dying”. The project was approved by the newly appointed director of the museum, Neil MacGregor, himself the son of two doctors. Over the next two years, in collaboration with the artist David Critchley, we made Cradle to Grave. Cradle to Grave is an installation that tells the stories of a man and a woman through the medication they have taken during their life. Central to the work are active pharmaceuticals, arranged in transparent knitted pockets in the exact order daily pills would be taken. These two giant lengths of pill fabric are accompanied by photographs, documents and objects within a 13-metre glass case. It is a peculiar feeling to witness an overview of an entire life course, from entering the world to leaving it again, all in one glance. The many photos from various family albums depicting major events and intimate moments emphasise this feeling of grasping life in toto as we know it and recognise it. At the same time, the thousands of pills expose and recount every single day in a life. They remind the visitor of the repeated daily routines that usually never come to mind when looking at the course of a life, but which nevertheless fill the days. The pills create a kind of “biographical proximity”, which offers another view of the life course that we usually do not see. Instead of looking at life from the outside, distanced, as a linear process in time, the installation makes us “enter” the life course … Cradle to Grave is one of four pieces by Pharmacopoeia in which we develop fictionalised characters. “Wieg tot Graf”, made in 2009, is a Dutch version commissioned to tour in Europe which is now in the collection of CBG Medicines Evaluation Board in Utrecht. “A.N.Other” and “Dose” were created for the chapels at Pentonville and Holloway prisons in London and are the narratives of a male and a female prisoner. All act as vehicles through which we explore the relationship between modern medicine and human experience. There is an emphasis on the pharmaceutical, but from that emerges a narrative that is more widely resonant. Our initial research focused on national prescribing statistics and morbidity and mortality data. We started with death and worked backwards, noting the average age of a man and woman in the UK at the time of their death. Having established the commonest causes of illness and death in the population, we looked at national prescribing figures to ascertain the number of total prescriptions issued a year. We examined certain classes of drug in more detail and so, for example, discovered the number of antibiotic prescriptions, antidepressants, contraceptive pills and indigestion tablets issued each year in the UK. This enabled us to calculate the average number each one of us might take during our lifetime, and we calculated that this equated to approximately 14 000 pills. Having studied the data, we were able to imaginatively invent the disease narrative of ‘everyman’ and ‘everywoman’. We considered their childhood illnesses, their teenage and young adult years. Even this simple, apparently prosaic process was revealing. For example, the medical burden of menstruation, fertility and pregnancy meant that by the age of 40, everywoman has taken more than twice as many pills as everyman. During their reproductive years, women experience far more illness than men and are four more times more likely to visit a doctor. Later, however, this balance is redressed when everyman develops hypertension and starts to take a tablet every day. Further on, he has a heart attack and dies of a stroke aged 76, while everywoman continues with treatment for arthritis and diabetes into her early eighties. Deciding on a rough outline of these two individuals' medical history that broadly coincided with the national statistics, we then took our invented narratives and matched them with real patients' medical records. This was not straightforward. We could not simply use the notes of a 76-year-old man and 82-year-old woman because they were born before the invention of most modern drugs such as antibiotics or contraceptive pills. In order to reflect contemporary prescribing, we choose four different individuals to provide the actual prescribing records for each of our two fictional characters. The first, a child from birth to 20 years; the second a young adult from 21 to 40-years-old; then a 41–60-year-old; and finally a man from age 61 who died aged 76 of a stroke, and a woman with arthritis and diabetes who survived breast cancer to live into her eighties. From this data we were able to create two complete prescribing records. As well as including the major diseases we had selected, the real medical notes also revealed episodes of illness that we had not anticipated—for example, treatment for shingles or a bout of constipation caused by taking codeine-based analgesia for the pain of a broken leg. As we make the work, we move backwards and forwards between the raw data and the gradually emerging imagined person, shaping minor details within each narrative to make a more coherent whole. For example, the man has made several attempts to give up smoking, indicated by the inclusion of Nicorette gum for three periods of 1–5 weeks. He then gets increasingly frequent chest infections in his sixties and, after a double course of antibiotics for a severe chest infection, he finally gives up. The woman similarly takes slimming tablets in her fifties and from this we gather that she is overweight. Later she develops arthritis of her knees and diabetes. These are both conditions associated with obesity and give a continuity and validity to her narrative. Some way into this iterative process, our everyman and everywoman came alive for us as artists. We began by talking about a set of statistics and ended up discussing two individuals. Although we never gave names to our characters, we talked about them as human beings. For example, we might speculate “when she has a mammogram and is diagnosed with breast cancer, do you think she is likely to get depressed?” In Cradle to Grave we decided she is frightened and distressed by her cancer but not depressed. However, in Wieg tot Graf we have created a patient with a similar medical narrative but for us she developed a different personality. This difference in her personality was in part generated by social differences in her environment. Because more tranquilisers are taken in the Netherlands than in the UK, we decided that she would have an episode of generalised anxiety at the time of her diagnosis for which she took treatment. The paucity of information about an individual that can be conveyed by their pill narrative alone was something that needed addressing in the piece. Our starting point for making the work was a chronological list of diseases that would take each patient through from birth to the end of their lives. Disease is a descriptive term for a cluster of signs and symptoms defined and named according to the rules of biomedical science. The notion of disease describes events from the perspective of what Foucault called the “clinical gaze”.2 by invoking the term illness I mean to conjure up the innately human experience of symptoms and suffering. Illness refers to how the sick person and the members of the family or wider social network perceive, live with and respond to symptoms and disability. In Cradle to Grave, the pill diaries provide only one part of this narrative. In order for the fiction to become meaningful in Kleinman's sense, and the piece to become powerful, the viewer has to make the journey from the stark “pill narrative” through a “disease narrative” and ultimately to an “illness narrative”. We contextualise the raw medical and pharmacological detail by including two other narrative strands. Running on either side of the pill diaries are personal objects, documents and medical artefacts that relate to daily life. Interspersing these are groups of photographs with captions written by their owners, tracing typical moments in real people's lives. The photographs are drawn from the albums of family, friends and colleagues. We invited a wide spectrum of people to submit photographs that they felt particularly illustrated their own personal experience of health and ill health. The response we got demonstrated very clearly that maintaining a sense of wellbeing is much more complex than just treating periods of illness. Among other things the photos reveal that it is about family and community, work, weddings and funerals. It is about eating and drinking and smoking and dancing. It is about our relationship with nature. It includes sadness and suffering and loss. The objects are more diverse still. They were selected in order to reflect the complexity of our thinking and actions. They include choices we can make about healthy living as opposed to risk-taking behaviour. An apple to illustrate healthy diet, condoms for protection against sexually transmitted disease, a glass of red wine which is protective against heart disease but in excess can damage our social and physical functioning. Conflicting feelings about “healthy behaviours” are addressed by the inclusion of a full ashtray, suggesting the dangers of smoking, while the photographs acknowledge the pleasure and sociability associated with smoking. Medical artefacts fill the gap created by our tight focus on medication. The contribution technology and science has made to health is represented by X-rays, a pregnancy scan, a mammogram showing breast cancer and a prosthetic hip joint. An installation which focuses on the appearance of objects and their substantial qualities, as opposed to presenting them as realisations of an underlying culture, is something rarely seen at cultural history museums.1 Our aim from the outset was to start with scientific facts and statistics and from these create a fictional life which we could engage with and which we could use as a vehicle for reflecting upon our own illness narratives. This mirrors the normal human response to illness. We need to give meaning to our illnesses. There is a growing anthropological and medical literature that considers the role of storytelling within medical narratives. In The Wounded Storyteller, Arthur Frank4 explores his need to make sense of his own illness. He was a fit middle-aged academic and quite unexpectedly developed first a cancer and then a heart attack. The illness became embodied in his life story. Not only did his illness have cultural significance for him, he was seen as wounded; less vital than heretofore, but ultimately a survivor. More profoundly, he also imbued the illness itself with deep and personal meaning that arose directly from the wider complexity of his own life story. Such resonances are to be found within Cradle to Grave. They inhabit the space between the layers of meaning woven into the piece. Personal illness experience gives us direct access to complex illness narratives. Everywoman has breast cancer; she takes the treatment and she lives another 20 years. In common parlance she is a cancer survivor, not a cancer victim. Although the simple survivor/victim dichotomy generally dissolves in the face of first-hand personal experience, its resonance remains powerful and invokes deeply personal and often painful feelings. Everyman suffers a heart attack in his mid-seventies which, according to medical science, will have in part been caused by his long history of smoking and hypertension. His pill narrative shows he had made several failed attempts to stop smoking in his middle years. This detail allows us to contemplate questions such as guilt, weakness and recklessness. Did his illness narrative include any of these? Was he what the anthropologist Gay Becker described as a “lonesome cowboy”5; a romantic but elusive figure who lived from day to day, careless of his future, smoking and risk taking along the way? Or was his story a more prosaic one of dependence and failure? Twelve years after making Cradle to Grave, Pharmacopoeia were invited to make a site-specific work for a major exhibition in Brazil. “Invento—the revolutions that invented us” made conceptual links between some of the most important “revolutions” that have shaped the modern world and responses to them by contemporary artists. Unsurprisingly our subject was the pharmaceutical revolution that in the last two centuries has reshaped all our lives. By being exhibited in an art, rather than a museum, context and contextualised as an aesthetic experience showing with seminal works by Andy Warhol, Man Ray, Olafur Eliasson and Pedro Reyes, the work can be seen to demonstrate a formal handling of the visual as a language and as a means of engaging with a public, both a general audience and a specialist contemporary art audience. This work has been described alternatively as carnivalesque, joyful and celebratory. Pharmacopoeia's work may have changed and developed over two decades but it continues to celebrate the transformative effect of modern pharmacology on all our lives. It has been the subject of serious academic study but equally schoolchildren visiting the British Museum are to be seen draped over the case of “Cradle to Grave”, just as interested in the photographs and objects as they are in the beautiful pill patterns. We hope the work also raises uncomfortable questions, for example about the overmedicalisation of everyday life. We may feel some ambivalence about these things, but our guiding principle is not to judge. We want to show but not tell, and hope that through seeing this work, so full of colour and vitality, our audience will leave thinking more deeply about their own relationship with modern medicine. www.pharmacopoeia-art.net The authors have no conflict of interests to declare.