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Guest Blog Post

Through a Shattered Lens

18 Sep, 17 | by amcfarlane

By Rebecca Marshall

Through a Shattered Lens by Rebecca Marshall

How to tell a shattered story?

By slowly becoming everybody.

No.

By slowly becoming everything.

There will always be a line, a phrase; threads of words which hook onto you. For me, it was Arundhati Roy’s words above (in her latest novel, The Ministry of Utmost Happiness) that weaved their grip around a memory of mine. A memory, not unlike one of those beloved novels sitting on your bookshelf, that needs dusting off and revisiting from time to time. Anjum, the central character in the novel is a ‘hijra‘ (Hindu word for a transgender individual), who battles with identity, belonging and physical health; themes which resonated with this particular memory of mine. Just as Roy mystically paints the fragmented narratives of her characters, it was my experience of exploring a patient’s story – the backdrop to their clinical presentation – that laid the foundations for my decision to break away from clinical medicine into medical anthropology. And just as Roy utilises the power the narrative to understand contemporary Indian history, I found a similar magic in the patient’s narrative in terms of uncovering their medical history.

Entering my clinical years as a student in a wholly unfamiliar and daunting environment, my mind was already whirring with theory from my Global Health iBSc. Yet putting this theory into the context of patient cases, enabled me to find a different way of seeing, a different way of knowing.

I was to meet the patient from this particular memory during my fourth year of study (with a fellow medical student), on the Infectious Disease ward inside the towering block of University College Hospital, Central London. Armed with our face masks, a few sterile facts, and an encouraging nod from our Consultant, we set off to clerk our patient. Using our well-ingrained structure, our logical framework, our clear and well-circumscribed lens, we were set the task of The Structured Medical History.

Twenty-Five year-old. Male. Originally from Pakistan. Presented with weight loss, productive cough, haemoptysis. Isolation room. Structured Medical History. Okay?

Walking into an isolation room, a skeletal yet smiling young man greeted us.  As we delved into our framework for taking a history, he seemed to tick off many of the classical symptoms for tuberculosis. He described the many challenges of balancing so many different antibiotics and their side-effects. A gruelling task for most. We changed course to his social history. Alongside his studies, he was working part-time for a food-courier company. Joking together about the quality of hospital food (or lack thereof) seemed to mildly bridge the divide that our masks had created. A shift in dynamic and our patient started to show us photos on his phone of the appalling housing conditions he had been living in. Damp, mould, lack of heating. Yet he was happy in London, living with his boyfriend –it offered him a freedom. As a refugee from Pakistan, uprooted from his home, he faced unbearable levels of stigma and possible criminal prosecution for his sexuality. I sat absorbing, listening to each layer of his shattered narrative unfold.

Later that afternoon in our case tutorial, our teaching consultant summed up the case: ‘A classical presentation of an ancient disease…. with a modern twist.’

But this didn’t capture the history. Not even close. This was a narrative of a young man struggling with his identity, torn between loyalties, across geographic and moral borders. This was not a diagnosis of tuberculosis. This was a diagnosis of stigma, of social injustice, of forced migration. This was a diagnosis of an individual uprooted from his land, his family – his home. A diagnosis shaped by the insidious forces of structural violence, both in Pakistan and the UK. Yet on a human level, this was an individual’s tale of conflict.

From this point onwards, my well-circumscribed lens had been shattered. This wasn’t a disease or case that could be neatly boxed into a category; it couldn’t be narrowed down to a single choice in an MCQ question. It was complex, messy – and honest. For me, this way of looking at illness and health alike, addressed the questions that I wanted to ask. How could a patient’s own narrative shed light on understanding the cause and impact of illness? What were the wider socio-cultural forces that had shaped his disease and suffering? How do these processes in different cultures and in different communities interact? And how do we begin to navigate these differences across amorphous global and ethico-legal boundaries?

As I continued with my clinical studies, it became evident that medicine needs to be viewed itself as a culture: a culture with its own language, traditions and social behaviours.  As a rite of passage, a medical student is taught the structure (almost a formula) for taking a patient’s ‘history’. Through this well-circumscribed lens, we should be able to decipher a patient’s presentation with clarity and focus. During this process, the medical discourse meets the patient’s discourse, an interface – a meeting of cultures. The so called ‘doctor-patient interaction’. It was fascinating, as a student, to observe the myriad of possibilities and interactions that took place across this interface. Some full of hope and alleviation of suffering, others riddled with uncertainty, conflict and miscommunications.

Walking into our patient’s negative-pressure isolation room that day on the Infectious Disease Ward, fully masked and gowned, it was hard not to feel the presence of this interface and the creation of the ‘Other’.  Yet these invisible forces that have such an impact on patient care and on clinical decision making, remain neglected and under-researched.

I wanted to keep looking through the shattered lens, to keep listening, examining the multifaceted influences on the human condition. And for me, medical anthropology and the tools of ethnography handed me the opportunity to pursue this.

The late Oliver Sacks, in his novel An Anthropologist on Mars, echoes the importance of the narrative in understanding the world of medicine – as he states, ‘the study of disease, for the physician, demands the study of identity, the inner worlds that patients, under the spur of illness, create. This very much shadows Foucault’s advice to see the pathological world with the eyes of the patient.

I was movingly reminded of this sentiment in Roy’s words, how to tell a shattered story….by slowly becoming everything’, just as I was when listening to the experiences, socio-cultural and biological forces that had shaped our patient’s diagnosis that day.

Primum Non Nocere: An Artist’s Perspective into the World of Medicine

31 Aug, 17 | by amcfarlane

This guest blog post comes from Emma Barnard, a London based visual artist specialising in lens-based media and interdisciplinary practice and research within Fine Art and Medicine. Her solo retrospective exhibition Primum Non Nocere, focuses on the patient experience. The show has its private viewing on the 15th September 18.00-21.00, and then runs from the 16th September to the 7th October at Berlin’s Blue Art Gallery.

‘Without your medical file you don’t exist within this environment’. I will never forget those words, spoken to me by an ENT Consultant at what was the beginning of several years research as an artist into patient experience. This led me to the writings of French philosopher Michel Foucault and his book The Birth of the Clinic. It is said that Foucault coined the term ‘medical gaze’ to denote the dehumanizing medical separation of the patient’s body from the patient’s person or identity. Already at one of the most vulnerable times in their life, the patient can sometimes be viewed by their consultant as their diagnosis rather than as a person.

Mis(recognition) CType Photographic Print, 2013

We’ve all heard the stories. As a further education lecturer, I remember after a particular class in which I happened to mention that my work as an artist involved coming into contact with patients, some of whom had been given a cancer diagnosis, a learner approached me and told me that he was diagnosed with cancer several years ago. The diagnosis, he said, was delivered so badly that he was left without hope. On his return home he gathered his family together and prepared them for the worst. When he attended subsequent treatment he was advised that they were hopeful of a recovery. He looked haunted when he told me his story, tormented for years by the delivery of that diagnosis. Another time, a healthcare professional told me that after her diagnosis she walked outside, fell back against the wall, and collapsed sobbing as a result of what she’d just heard. At that point, I was horrified to hear, she told me that she thought that she would rather die than go through with the advised treatment.

I felt led to do my small part as an artist in offering patients a voice. After observing the consultation I invite the patient into another consulting room and discuss how it feels to be them: right here, right now. I’ve now spoken to hundreds of patients from various departments. Every single person has answered that question differently, often surprising the consultant when they are shown the patients’ drawing afterwards. During the consultation process patients’ show little emotion; it’s quite difficult to read how they really feel about the impact of the words spoken during the clinical encounter.

So many different patient stories flood my mind as I write this. The reality of cancer was brought home to me fairly early on as I witnessed a patient who was without their larynx and therefore communicated through writing to ask the doctor how long he had to live, he needed to get ‘his house in order’. It was difficult for me to remain unmoved as I sat and watched this scenario play out in front of his wife and grandchild. I still have that writing as a powerful testament. In our current climate, with the richness of many different languages being spoken and the issues that this situation may pose when there is no one to translate, how much more difficult must it be when a person is unable to use the ‘voice’ that they are born with?

Patients facing life-threatening illnesses are heroic; they have allowed me to witness the brutality of a treatment that is intended to cure them, from surgery, through to radiotherapy, chemotherapy and subsequent complications that may arise from being the recipient of these. I am constantly humbled by their generosity in allowing me an insight into their world, but also their sheer courage when faced with a diagnosis that rocks their very existence.

Out of hundreds of images I choose to show Martin’s. I know he will not mind me mentioning his name as, like many others, he is supportive of the work and keen for its exposure to a bigger audience. His writing cuts to the heart of what many cancer patients face when presented with their diagnosis.

This work has now grown to encompass the surgeon’s view, the patient pathway, the surgeon/patient dynamic, and to include the experience of being a doctor in a busy outpatient clinic. The following images contain snapshots of the doctors’ experience in clinic between patients.

As an artist working collaboratively with doctors I feel privileged to have been given a fascinating insight into the field of medicine and I have a huge amount of respect for them, the work that they do and the immense pressure that they are under. They have incredible workloads, are overbooked in clinic, coping with funding cuts whilst often dealing with potential projections from patients of being ‘miracle workers’ and ‘life-savers’. I’ve seen the exhaustion, the despair, heard about the strikes, and know that currently many doctors are leaving the NHS to go abroad – consequently, there are not enough doctors to cover the workload. In their 2002 presidential address, neurosurgeons Stan and Raina Pelofsky write: 

Martin Heidegger and Jean-Paul Sartre suggested that alienation occurs when we divide the world into two distinct parts: the ‘true’ world of science is on one side, and the ‘flawed’ world of human perception is on the other. It’s as if we try to strip ourselves of human values in order to understand this perfect scientific world, and we begin to substitute science for meaning. But science alone is empty, and it threatens to separate us from our human connections…we neurosurgeons may become separated from our patients through our use of new technologies, by the hassles of our professional lives, or by lack of time. This in turn makes us isolated.

We might think to ourselves: We are the doctors – they are the patients. They are sick – we are healthy. We are objective and scientific; they are objective and emotional. This is a form of alienation and we have to understand it if we are to find ways to soothe it and become connected to our patients and to the essence of medicine.

 

‘Profecta est Tableau Latin – Duo’, 2014, Giclee print on Hahnemühle Pearl

This solo exhibition will allow me an incredible opportunity to showcase the perspectives that I have witnessed over several years as an artist working within medicine. I am selecting from hundreds of never-before-published images taken over the years. Primum Non Nocere will provide an insight into patient experience and the surgeon and patient dynamic, and it will expound on the air of mystery surrounding the surgeon’s practice, the immense pressure that they are under, and the harm that this may cause them.

Primum Non Nocere

Private view: 15th Sept 18.00 – 21.00

Exhibition dates: 16th Sept  –  7th Oct

Reflections on Art, Voicelessness, and the Patient Experience

14 Feb, 17 | by cquigley

 

Emma Barnard MA (RCA)

‘Silence is not Golden’

 

‘For those who live neither with religious consolations about death nor with a sense of death (or of anything else) as natural, death is the obscene mystery, the ultimate, affront, the thing that cannot be controlled. It can only be denied’.

Susan Sontag

 

One time, a healthcare professional completely removed the artwork (that I’d made with patients) from the Patients As People exhibition stating that it depicted death. This puzzled me. I couldn’t work out where the offence had come from; the closest reference to death was a thought bubble of the words “RIP” that a patient had drawn over their portrait. That particular patient’s condition was actually relatively minor and not serious; surely the thought bubble merely reflected something we all think about when we are sitting in a hospital waiting room? Where better to contemplate one’s own mortality? GP Dr Jonathon Tomlinson says, ‘Doctors are tortured by the idea that death represents a failure of medicine and this is worsened by a punitive shame and blame culture and highlighted by mortality league tables.’ Medicine has a great deal to offer, and prolonging life is not the only item on the agenda. To paraphrase William Osler, ‘What’s important is not simply what is the matter with the patient but what matters to the patient’.

How do you respond though when someone asks you if they’re going to die?

As artist in residence within an ENT (Head and Neck) clinical department, I have been collaborating with surgeons to explore the patient experience through art. Part of the work I do involves discussing with patients their experiences immediately after the medical consultation, where they reveal what lies behind the mask that they present to the doctor. Very often, patients are at that point trying to come to terms with their diagnoses. On one occasion, when speaking to a patient who had received a diagnosis of laryngeal cancer, to my amazement they seemed unconcerned that treatment might involve removal of their larynx; their major concern was that ‘didn’t want to die’.

As someone whose work as an artist is dependent on being able to communicate both verbally and visually, I am particularly intrigued by a person’s loss of voice and how that might alter his or her life. People not only have to come to terms with having their larynx removed, using a feeding tube and learning to swallow, but they also become voiceless in the conventional sense, having to relearn how to communicate. As laryngeal cancer survivor Kay Baker states, ‘I felt as if my personality had been taken away from me because I could not express myself anymore’.

It is not the words spoken by the voice that are of importance, but what it tells us of the speaker. Its tone comes to be more important than what it tells. “Speak, in order that I may see you,” said Socrates. (1)

(Reik, 1956, p.136)

The voice is one of the most important means by which we communicate. In the words of Alice Lagaay, an academic philosopher from Bremen University:

 ‘A voice is both individual and communal: On the one hand, every human voice is unique, no two voices are ever quite the same. In this sense every voice is the signature of an individual’. (2)

 

 

Portrait photographs (which contain their drawings) of people who attend the Talking Heads group held at St Josephs’ Hospice which supports people who have had experience with laryngeal cancer.

 

The building was warm, friendly and welcoming. But in fairly familiar community-type surroundings, the sounds that I heard were not. I had been invited to present my work on patient experience to the group ‘Talking Heads,’ a support group for people who have dealt with laryngeal cancer; more often than not they are without a regular ‘voice’. Denise Redmond, having worked as a Macmillan nurse for some time facilitating the support group for laryngectomy patients, reflected: ‘If you removed the gearbox in a car then the car would have no useful function and be scrapped. Patients with laryngectomies really humble me in their ability to overcome not only a cancer diagnosis but to survive and live beyond their cancer treatment with a significant impact of treatment.  There is always a trade off with cancer treatment especially when the aim is to cure somebody. Removing the organ that lets the patient communicate, speak, sing, breathe and eat and drink which are normal basic functions to sustain life is debilitating holistically. It is a life-changing event’. 

‘That’s great, it looks lovely and clear now’, said the surgeon. Physically, everything looked good and how much easier it would be if illness was just about an individual’s physicality. That’s not the case, of course, the mental scars remain, exacerbated by lack of understanding from family, friends, and others, too often scared of the change in you as you speak in a way that they do not understand. Denise: ‘There are many misconceptions about “neck breathers” and they can be very isolated. I know doctors and nurses who are afraid to look after patients that have laryngectomies as they perceive the laryngectomy as difficult and complex when the patients themselves are masters of their own care’. 

Mike Papesch FRACS, an ENT Head and Neck consultant surgeon explains his viewpoint: ‘From a surgical point of view, it is very clinical…with the end goal being survival and with recognised significant social, psychological and personal impact. It is impact that may be underestimated by the patient, but it is not underestimated by the medical team looking after them. And indeed, the doctor understands the difficult choices that patients have in undergoing these treatments. Perhaps it is that the patient, in reality, has no choice as to the treatment and its impact, if they do not wish to die of the disease. The reality they face truly is this harsh. And the patient will never fully understand what it means to have head and neck surgery, until after the process. This process can take place over several months. People do make some recovery, but never return to their pre illness performance status. I would not wish this surgery on anyone, but if they needed it, I would embrace it, advise it, and undertake it willingly, knowing full well it was done as a lifesaving, albeit life changing, intervention’.

Illness isn’t something you wave goodbye to in the consultation room after your appointment or in the theatre after a surgical operation. It follows you home, it is with you while you sleep and haunts you in your waking moments. In the words of Susan Sontag ‘Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick’. Days, weeks, years, and it is still there, refusing to let go. Unlike other cancers, which to a certain degree, are invisible, this one remains in full view for all to see and because there seems to be so little knowledge on the after effects, responding to someone who has had this disease can be uncomfortable for the onlooker.

 

Of the legacy that is laryngeal cancer, two years on Kay Baker writes:

No airway

No smell

Not much taste

Eating and drinking very slow

Have to be very careful in the bath – cannot get water down my stoma

Never go swimming (would drown)

More difficult to breathe especially in very hot, cold and windy weather

My life is so different now and there have been times when I have had bad thoughts – why this cancer, why me? Not wanting to live.

 

What I don’t like is people thinking there is not a PROBLEM.

No escape – there is a constant reminder every minute of the day – as soon as I wake up, unlike other cancers.

There is no hiding place.

Silence is not GOLDEN as the song goes!

 

‘Silence remains inescapably a form of speech’. Susan Sontag

 

References

1 Reik, T. (1946) The Ritual: Psychoanalytic Studies, Bryan, D. (trans). New York: International University Press.

2 Lagaay A 2008 Between Sound and Silence: Voice in the History of Psychoanalysis Freie Universität BerlinVolume 1 (1), ISSN 1756-8226

Quotes from: http://research.ncl.ac.uk/e-pisteme/issues/issue01/contents/e-pisteme%20Vol.%201(1)%20-%20Alice%20Lagaay%20(Full%20Text).pdf

Emma Barnard MA (RCA)

Bio

Emma Barnard is a visual artist, specialising in lens-based media and sound installations. Her work deals with social commentary, seeking to highlight contemporary issues and encourage debate surrounding them. The experience Emma has gained through several years of working with consultant surgeons and their patients from various disciplines, including ENT and Psychodermatology, is now influencing the field of medical education. Her “Patient as Paper” project (co-founded with Mr Mike Papesch FRACS, ENT consultant surgeon) artwork is currently being exhibited widely in galleries, universities and hospitals in England and internationally. It has been presented at several conferences within the medical and medical humanities fields, and most recently at University College London, Medical School and in a series of presentations at Surrey University for the Department of Health Sciences. At King’s Medical School in London Emma has led a highly successful pilot project to introduce art into medical education, undertaken in conjunction with a critical care consultant and a fourth-year medical student. An exhibition of this work is planned for later this year.

@PatientAsPaper

Exhibitions:

‘Patients As People’ (work created alongside patients) – currently installed within the Department of Health Sciences, Surrey University, Guildford

More information:

https://www.facebook.com/PatientAsPaper/?ref=aymt_homepage_panel

‘A Stitch in Time’ series of works to be shown at The Lawson Practice, London at the invitation of GP Jonathon Tomlinson during February/March.

Artist page – BerlinBlue Art: http://www.berlinblueart.com/emma-barnard

 

 

Politics and Medicine

9 Dec, 16 | by cquigley

Clinicians should understand how they can use the ballot box to advance their patients’ health interests.

Jacob King, Deniz Kaya

Medical Students, Peninsula College of Medicine and Dentistry

 

As a health professional working in a sterile environment one might easily find themselves feeling disparately removed from the slimy world of politics. But sadly we believe that this separation of clinic and state denies the measurable effects they have upon each other. Environmental public health acts, improving access to medical coverage, and taxes on ‘bad behaviours’ have all been platforms for political campaigns, each subsequently having shown powerful health benefits.

We have a duty to patient wellbeing, and some argue that this extends to advising or lobbying government. But in light of recent major democratic exercises, including the EU referendum and junior doctors’ contract votes here in the UK, and the upcoming Trump presidency, the ballot box can frequently become a vessel for enacting changes for patient health. Unfortunately, we fear that health professionals are missing out on this key opportunity to address their patient’s wellbeing from an entirely new angle, one normally out of reach for the individual clinician. In the only study of its kind Grande et al. show that US physicians were significantly less likely to vote than the general public [1]. They suggest that medical training may lead physicians to perceive voting as in conflict with their professional duties. Anecdotally, among our colleagues, we also find disillusionment with the political system, limited understanding of legislative processes and little appreciation of health and social policy impact. The GMC’s ‘Tomorrow’s Doctors’ sets the framework of a medical school curriculum, and simply requires students to “discuss the principles underlying the development of health and health service policy” [2]. This limited criterion for health policy teaching, we believe, fails to adequately prepare health professionals. It follows that if greater awareness was fostered toward the impact and variety of health policy options, health professionals could more readily be able to advance patient health by means of their vote. Supplementary teaching of political systems and health policy could be incorporated into a medical curriculum which recognizes the importance of political decision in healthcare. Initially teaching politics effectively may seem implausible. Yet we have experience of teaching, and being taught medical ethics quite successfully without running into contentious arguments, cries of bias or questioning of practical use. We see no reason why politics should be any different.

There is a broader point here, however. Just as this blog routinely demonstrates, the role that accepting humanities topics (sociology, art, music, anthropology, religious and cultural studies et cetera) into medicine has progresses hidden and tangible clinical benefits – we claim that political science possesses similar potential. “A physician is obligated to consider more than a diseased organ, more even than the whole man, he must view the man in his world.” (-Dr Harvey Cushing). Small “p” politics by any definition must also fall into the category of humanities, concerned with forms of individual thought and behaviour, power structures, interpersonal relations, as a cousin of sociology, psychology and anthropology. But while earlier we suggested that at least some measure of political science education for health professionals might theoretically improve our voting rates, fuel broader discussion of health and social policy or directly lead to effective health outcomes via the ballot box, the hidden side of recognising political belief in oneself and our patients may also (akin to its humanities cousins) result in a greater appreciation of the man in his world.

In this light we wish to make the case that political awareness will on one hand prime clinicians to appreciate on a different level the background and health beliefs of their patients, and on the other, confer a greater idea how voting one way or another may play a role in improving health and wellbeing.

Whether one ultimately does vote in what they deem to be in their patient’s best interests is a personal matter. Individuals of course have other motivations on which to base their decisions. However we reasonably believe that health professionals should have the opportunity, foundation knowledge and confidence to enact change via the ballot if they wish to do so.

 

References

  1. Grande D, Asch DA, Armstrong K. Do doctors vote? J Gen Intern Med, 2007;22(5): 585–589.
  1. General Medical Council. Tomorrow’s Doctors: Outcomes and standards for undergraduate medical education. 2009.

 

First impressions only happen once

7 Jun, 16 | by cquigley

 

Fergus Shanahan

 

Eyes smiling, face beaming, the porter rose from his stool to greet arrivals at the cancer centre, each nervously hesitant, staying close to a supporting loved one. With the confidence of a man who enjoyed being good at his job, he paused for those needing directions, reassured us that we were in the right place for our appointment, and then boomed: “Welcome everyone, and good luck to you all today.”

Good start. After that, we didn’t mind inconveniences like waiting for the single working elevator and felt better about whatever unknowns were ahead. The moment was still fresh when we got to the sixth floor. There, we faced a receptionist unable to switch her gaze from a computer to address us. Detached with jaded eyes fixed elsewhere, her outstretched arm dispatched us to an adjacent touch screen to register. We obeyed but the system insisted on a five-digit address code. Bad enough to be labelled ‘international’ as code for not having acceptable insurance, but not having a zip code was a new stigma. Before we could explain, Miss No-Eye-Contact was on the phone staring at some distant point behind us, then back to her screen with a facial expression that said: “Can’t you see! I’m busy.” Bristling a little, I blurted out my son’s details to demand attention. Without the slightest shift in posture, she confirmed our existence in the system with a few flicks of her keyboard. Progress. Then she left us with the unsettling comment: “Hmm, that’s interesting…take a seat and wait while I check with Accounts.” This is not what patients want to hear as they contemplate the prospect of major surgery. No one wants to be that kind of interesting.

Joe shot a warning glance at me “Dad…don’t be rude with this lady. Don’t lose it!”

Lose it! After 8 months of continual worry and stress trying to steer my son through the complexities and decision-making of a young man’s cancer treatment, I was determined not to ‘lose it’. We were overseas in a different healthcare system for a high stakes operation. They were now in charge and I would just have to play it their way. After all, I wasn’t the patient. I was supposed to be the support. So I stayed quiet. Then, the silence was broken, delightfully so, it seemed to me, when an old woman behind us flatly refused to have anything to do with self-registration. Dismissing the technology with an impatient wave of her hand, she snapped at no one in particular in a brash accent: “I’m not gonna do it, I can’t be bothered with that.”

Miss No-Eye-Contact receptionist had met her match.

While waiting, I imagined myself telling anyone seeking my opinion that professional staff within medical offices and hospitals should heed the little things that comfort patients. I would tell them that little things are important. Staff should know that routine for them is crisis for the patient. I would remind them that there is only one opportunity to make a first impression. First impressions are made up of little things. Little things can make a big impression. If the front office experience is poor, anxiety increases and confidence in the rest of the enterprise becomes more doubtful. In other words, if the dentist’s receptionist is a barracuda, don’t expect much pain relief when you get to the back office.

Then, we heard our name called out and we were on our way into the back office.

The interview with the surgeon was probably over within minutes but it seemed much longer. He began with a firm handshake. Then, sitting beside us not across a table, he spoke confidently in clear, crisp, explanatory sentences. These, he must have repeated on hundreds of previous occasions but it didn’t seem that way. He anticipated our questions and acknowledged our sense of urgency.

In the end, the professionalism of the porter that morning and his memorable welcome was the bellwether for what followed. The surgeon’s skill and experienced team determined what was to be a favourable outcome. But something else made a difference and a lasting impression. To borrow from the poet Maya Angelou:  “…people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

 

Fergus Shanahan, MD, DSc

Professor and Chair,

Department of Medicine,

Director, APC Microbiome Institute

University College Cork,

National University of Ireland

Tel +353-(0)21-4901226  also cell phone 086 280 4881

FAX +353-(0)21-4345300

Difficult Histories by Niamh NicGabhann

28 Aug, 15 | by BMJ

image

I was recently involved in a project which explored the histories and memories of St. Davnet’s Hospital, Monaghan. St. Davnet’s was founded as the Cavan and Monaghan District Lunatic Asylum in 1869, and its name changed to ‘Monaghan Mental Hospital’ in the late 1920s, and later to ‘St. Davnet’s Hospital’ in the 1950s. I was involved in this project through my engagement with Stair: an Irish Public History Company Ltd. This was a company which I co-founded with colleagues from the UCD School of History and Archives, with the support of Nova UCD. We saw the project advertised on etenders.gov.ie and put a bid together. The final project involved a number of strands, including an archives scoping exercise, the production of a book on the history of the site based on the archives, an oral history project, a community engagement project and primary schools programme, and the development of an exhibition on the history of the site at Monaghan County Museum. We were extremely lucky to have Monaghan County Museum as partners on this project, as they shared essential expertise, as well as part of their collection for the exhibition. Preparing an exhibition on the subject of mental health and mental illness, and on the history of one particular institution within the local town was not without challenges and difficulties. I wanted to write about the decisions that we made in selecting objects and stories for the exhibition, and in how we structured the overall narrative of the exhibition. Some further information on the project can be found here, in a site created by project manager and oral history lead researcher Fiona Byrne.

image

Nuts and bolts: We had a modest budget for the exhibition, which largely went towards the printing and production of panels for the exhibition, the creation of replica outfits and uniforms, and design and print of the catalogue, and other display-related costs (such as the glass heads for displaying nursing caps, above). We were lucky to be able to use the display cases, space and lighting at the museum, which cut down costs considerably. Some of these costs were also shared with the museum, which will be hosting the exhibition for a year. Installation and conservation of some objects brought from the hospital campus were taken care of by museum staff. As objects in the exhibition came from the hospital campus, from the museum collection and from private family donations, we needed to carefully document the provenance to avoid confusion at the end of the process.

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Putting the collection together: As with many exhibitions, the final selection of objects reflect a series of compromises between what we wanted to include, what we had access to, what we felt was appropriate to include, and what we could physically deal with in the exhibition space. Interestingly, our own process of creating the exhibition reflects that described by several of the contributors to the volume of essays Exhibiting Madness in the Museum: Remembering Psychiatry, edited by Catharine Colebourne and Dolly McKinnon. As in many of the cases outlined by Colebourne and McKinnon, we found that the history project commissioned by the HSE was precipitated by institutional change, with the hospital closing for admissions in 2012. The large site is now mostly used for administrative and community care purposes, with some long-stay patients still living in one ward. The ‘collection’ of the hospital was largely put together and defined in the process of creating the exhibition – again reflecting several of the examples mentioned by Colebourne and McKinnon. Throughout the process of talking with former and current members of staff, certain objects and spaces were marked as significant and important carriers of memory, and were included in the site. These included, for example, the Monaghan Mental Hospital fire helmet, the brown straitjacket and the large wooden table in the laundry building. Other objects were selected as part of our own investigation into the site, for example, drama trophies that had been presented to the St. Davnet’s Players and the Belfast sinks from the laundry. Some objects, such as the staff ration box from the early twentieth century, or nursing certificates and medals, were donated by former staff members living locally, who were extremely interested in the history of the site and who were very involved in the exhibition. Several items in the exhibition had already been collected by the museum – these included the chalice and paten from the asylum, an early wooden ECT machine, examples of modified knives and forks for patient safety, and a staff white coat from the 1960s.

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The archiving process in place at the hospital also created something of its own collection – while this largely involves highly confidential hospital records, which will be archived, stored and managed by the National Archives, it also included architectural maps, plans and drawings, and a collection of personal effects, such as hair pins, pocket watches, rings, glasses and religious medals. These objects were removed from patients on entering the asylum or hospital – in many cases, they were returned, or returned to family members following the death of a patient. The personal effects that remain, therefore, are likely to have belonged to people who had been patients in the asylum or hospital, and who died there without relatives to claim their possessions. These items provide a very personal connection to the lives of those who experienced life within the walls of St. Davnet’s. The idea of personal effects has also been explored by artist Alan Counihan in his exhibition at the Grangegorman campus, another of Ireland’s large-scale Victorian asylum buildings. The use of personal items representing the transition between everyday life and the life of the asylum or hospital can also be seen in the exhibition ‘The lives they left behind: suitcases from a state hospital attic’, based on the suitcases of personal effects found at the former Willard Psychiatric Centre in New York State. Important items within the archive at St. Davnet’s also include the first admissions register and the first minute books of the asylum – the admissions register was included in the exhibition, but it was closed and locked to protect the privacy of those named.

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The ‘World Within Walls’ project involved communication with members of the local community, former staff members, and former and current service users – reflected in the oral histories which were available via listening posts throughout the exhibition. An important part of the collection came from the items which had been kept by the families of former staff as important mementos of their time there. These will return to the owners at the end of the exhibition, but form an essential part of the overall collection represented in the museum. These items included very personal items, such a teapot given by a patient to a member of staff by patients and staff at the hospital on the occasion of her marriage, and a lace collar which had been given to the mother of the same staff member, made by a patient. Other items included official items, such as a key book which would have been held by the gatekeeper, recording each key being checked in and out, nursing exam slips, prizegiving booklets, photographs of sports teams and drama groups, nursing pins and certificates in both English and Irish. This brief description gives some sense of the variety of objects which were included in the exhibition collection, and the different processes by which they were collected.

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Creating a narrative: One of the challenges in putting an exhibition like this together was to find a way to create a narrative which was both historically informed, and which presented information in a clear and valid way to visitors, without avoiding or over-emphasizing judgements on past practices in mental health care in Ireland. It is very clear that, from our contemporary position, many of the practices in mental health care were unacceptable, and many of those who were committed to institutional care could and should have been cared for at home. Indeed, many of those committed should never have been committed in the first place, while it is clear that others did need institutional care. The history of asylums and mental hospitals are inextricably linked to broader social histories of families, of sexuality and ideas of sexual morality in the country, and ideas about mental health and illness. We needed to find a way of presenting histories within their historical context, providing as much information as possible about the broad social context and contemporary ideas about mental health care in order to allow visitors to make up their own minds. This was absolutely essential as visitors to the exhibition, located in a local authority museum, would almost certainly include former staff members, former service users, current service users, and family members of both groups. Ideas of appropriate mental health care have changed radically, and we wanted to present information as accurately, sensitively and appropriately as possible. While certain groups – particularly former staff members – often had very positive memories of working on the site, where they formed strong friendships and often met their life partners, this had to be balanced with the (harder to source) memories of patients and service users, which were often more mixed, and could be negative. In presenting these differing views on such a recent, and profoundly local history, we wanted to make sure that each view was adequately represented equally, allowing people to explore them and to make up their own minds about the histories and memories being presented.

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We were also mindful of the advice given by curator Nurin Veis in Colebourne and McKinnon’s book, mentioned above. According to Veis, ‘in presenting narratives of psychiatric history a curator must examine and determine whether one particular story is being emphasized at the expense of another. There is sometimes a tendency in museum displays to perpetuate the concept of past gruesome medical horrors in order to venerate the successes of modern psychiatric medicine’. We absolutely did not want to fall into the trap of emphasising the most negative aspects of the history of the site. It was overwhelming clear to us throughout the research process that a lot of genuine care existed within what could be a very harsh system. We found that there was sometimes an expectation that the very worst would be emphasised – that the history of this institution would be similar to the absolutely horrific institutional histories being uncovered with regard to the Mother and Baby Homes and the Magdalene Laundries, for example. While there were, undoubtedly, many examples of unjust and sometimes horrific treatment within institutions of mental care, these must be balanced with a representation of daily reality. At the end of the process, it felt to me that the greatest injustice was the boredom, monotony and loss of liberty and self-determination suffered by many patients, particularly up to the 1960s. We wanted to present this history fairly and honestly. In trying to understand these systems, it can be difficult for people to accept that there was no one driving force, no one figure or institution that can be vilified and perhaps punished, but rather a whole range of social forces that contributed to the situation. At some of the public events where we presented our ideas for the exhibition, we sometimes felt under pressure to fit this history into a larger story of institutional abuse in Ireland – whereas there are some points of connection, it is a very different history, and must be engaged with on its own terms. The local context for the exhibition was also in our minds in creating these narratives – together with the advice given by Veis, we were loath to perpetuate stereotypes about what happened ‘inside’, risking reinforcing stigma around mental illness and mental health care. The balance between providing accurate and accessible information about life within the asylum and the hospital without falling into potentially damaging stereotypes was certainly a challenge for the exhibition team (myself, Fiona and Liam Bradley, curator at Monaghan County Museum, supported by the staff there and the steering committee of overall project led by the HSE).

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In the end, we decided to focus on the shared life experiences ‘within the wall’s of St. Davnet’s through a number of key themes, rather than trying to deal with patient and staff life separately. This emphasis on the lives and experiences of those who spent so much of their lives within the walls of the hospital was signalled by the first object encountered by visitors – a replica of a female patient uniform (made by a local dressmaker using early 20th century photographs as a guide, as no originals remain). This decision reflects the fact that patients, on first entering the asylum or hospital, would have had their clothing and personal belongings removed, been given a hot bath, and the serviceable but anonymous uniform of the hospital. The themes chosen were ‘Building St. Davnet’s (maps and plans, an overview of the site, a timeline with major events within the hospital, put in context by major national or world historical events, a video walk-through of the site which provided an overview of the buildings and campus as it exists, an interactive map which people could use to orient themselves around the campus, and an 18th century book of maps which showed the site in relation to Monaghan town before the asylum was constructed). If you are interested in this aspect of the history, you can read my essay from the book on the asylum and hospital architecture here. The next section focused on the World of Work, and explored the kinds of work carried out by both patients and staff on the hospital grounds. The objects chosen for this part of the exhibition included sinks, a large wooden table and a fabric brand used in the hospital laundry, a place where many female patients would have spent long hours working, a fire helmet from the hospital fire brigade, a whistle used in reporting escaped patients, as well as images of staff in uniform, reflecting changes throughout the years. Information from the archives on staff and patient work (including when patients started to get paid for their work) was on the panels – we did not include any photographs of identifiable patients or service users in order to protect anonymity, but aimed to represent their experiences as fully as possible from the archives. The oral histories were an important part of this section, reflecting memories of work on site in the farms and on the wards. We also included a section on the well-known ‘Soviet’ or strike at St. Davnet’s in 1919, led by Peadar O’Donnell, and a section on nursing, including information on training, exams and everyday patterns of life as a nurse on the wards.

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The next section was based on ideas of illness and recovery, and included a bed from the hospital, an early ECT machine and handbook on nursing and mental illness, as well as key information on reasons for committal, types of treatments used (including highly controversial treatments such as insulin comas), and experiences of illness that crossed the boundary between staff and patient, such as the Spanish Flu and the TB epidemic in Ireland, when part of the new buildings were used as a TB hospital for a period of time. We used doors from the hospital as dividers between the exhibition sections – many of the visitors to the site itself during a Heritage Week tour in August 2014 remarked on the sense of repetition and monotony produced by the endless wards and doors throughout the vast complex of buildings – while we could not replicate this within the temporary exhibition space at the museum, we tried to give a sense of the internal environment by using these doors, and also through the video walk-through, the use of hospital screens from the campus, a commissioned soundscape which gave an idea of the aural environments on site, and a video of a sports day on campus from the 1930s (which doesn’t show any patient faces clearly), displayed at the back of the exhibition).

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The final section was based on the idea of everyday life within the asylum and hospital.  This, in some ways, was one of the most poignant aspects of the exhibition, reflecting the lives spent, often isolated and removed from the wider world, within the walls of the hospital. Oral histories which told of patients missing the moon landing on television as their routine meant that they had to go to bed – this is a microcosm of the world of routine and structure experienced by many, where they lacked self-determination and autonomy. A section on the development of mental health care policies included at the end of the exhibition, and prepared by the HSE, gave an overview of how new policies from the 1970s aim to change this, with a more patient-centred approach. Some of the objects from this section of the exhibition are listed above, but also included the removable taps from the baths (for patient safety), the keys allowing access to either the male or female wards, but not both (patients were segregated by gender to the latter years of the 20th century), the modified knives and forks used by patients, and also the chalice and paten from the asylum, marked as such, reflecting the role that religion played for patients – there is a Catholic and a Church of Ireland chapel on campus, as well as a graveyard, where some patients who died in the asylum or hospital were buried.

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Finally, the last section of the exhibition included a panel on mental health and language, explaining the different terms used throughout the exhibition (including some terms that would be offensive today such as ‘lunatic’ and ‘imbecile’), and a panel on current mental health care directions provided by the HSE. The desk of the Resident Medical Superintendent was included here, and visitors could sit down, and write their own thoughts and reflections on the exhibition, to be hung on a clothes line with wooden pegs behind the desk. Further reading material on the history of the site was provided here, as well as information on mental health care services in the area, and contact numbers for people to use if they were impacted by any of the issues raised by the exhibition. We thought long and hard about including trigger warnings, but in the end, felt that the initial exhibition materials outside the room provided adequate information about its content, without sensationalising the subject matter. A final note – the exhibition was produced in association with the HSE, and therefore does reflect their views on current mental health care policies. We retained as much curatorial and scholarly freedom as possible throughout the presentation of historical material, and based this on best practice developed by curators and scholars on the subject internationally. There is a lot more that I could write about this subject, but I wanted to quickly put together a blog post before I forgot some of the discussions and debates that we had in putting it together. We would have been happier to have the strait jacket at the back of the space, rather than having it front and centre, but this was the only place that this exhibition cabinet could be placed due to the need to use the space for education workshops throughout the run of the exhibition, so some compromises had to be made. The exhibition will run until Feb 2016, and will then be available to tour to other venues.

For more information on the history of mental health in Ireland – Centre for the History of Medicine in Ireland (CHOMI) at UCD, as well as the publication of several recent books and collections of essays on the subject of psychiatric history by scholars such as Catherine Cox, Lindsay Earner-Byrne, Brendan Kelly and Pauline Prior, adding to the work carried out by those such as Mark Finnane on mental illness in Ireland after the Famine, and Joseph Reynolds on Grangegorman asylum.

Correspondence:

Dr. Niamh NicGhabhann,University of Limerick
niamh.nicghabhann@ul.ie

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Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.

 

From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.

 

Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’

 

Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.

 

However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).

 

During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.

 

There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.

 

This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.

 

Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.

Reference:

  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information: http://markmaking.arts.ac.uk

Correspondence:

Dr Hannah Zeilig

University of the Arts, London

h.zeilig@fashion.arts.ac.uk

 

 

 

The Forgiveness Project: Stories for a Vengeful Age

26 Apr, 15 | by Deborah Bowman

Images of Eva Kor embracing former SS guard, Oskar Groening, at his trial in Lueneberg this week have been shared on social media and in newspapers worldwide. These images, and the responses to them, reveal much about the complex, surprising, inspiring and challenging, sometimes even threatening, nature of forgiveness. Our relationship with forgiveness, collective and individual, is always nuanced and often ambivalent. It is a slippery, shape-shifting concept that rarely exists without an undercurrent of emotion. Forgiveness can be experienced as both restorative and undermining. It may be perceived as noble and a betrayal. We may aspire to it even as we fear it. Forgiveness is a force that may be resisted or harnessed or, perhaps more often than we acknowledge, both.

 

Few have thought more about forgiveness than Maina Cantacuzino. Ten years ago she founded The Forgiveness Project. Last year, saw a series of outstanding events to celebrate a decade of its work culminating in the publication of a book – The Forgiveness Project: Stories for a Vengeful Age. It is a remarkable text that manages in a slim volume to capture the significance and unique approach of The Forgiveness Project and, in doing so, captures why its work matters more than ever.

 

Central to the book and to the work of The Forgiveness Project are stories. Those stories offer an unmediated insight into this demanding, elusive, inspiring and troubling thing we call ‘forgiveness’. It provides space, without judgement or commentary, for people to reflect on and to share what forgiveness means for them.

 

It is these narratives that form the basis of the book, although Marina Cantacuzino’s introductory essay – “As Mysterious as Love” – is an outstandingly thoughtful, and thought-provoking, exploration of forgiveness and her own personal and professional relationship with it. The book also carries two rich and insightful forewords from Desmond Tutu and Alexander McCall Smith. Yet, it is the forty individual stories that follow the introduction and forewords that form the essence of this unique work.

 

Some of those who come to The Forgiveness Project are well-known people whose capacity for compassion and empathy towards those who have caused devastation has prompted fascinated media attention across the world. Others are less familiar names but their stories are equally urgent and compelling. There is neither formula nor any sentimentality to be found. Anyone seeking sentimental salve will be disappointed. Nor do tropes of heroism or survival occur often. What is offered instead is much harder and ultimately more rewarding. These are accounts that are authentic, sometimes painful, often surprising and always affecting.

 

It is not merely the content of these stories that is noteworthy. The form reflects the discomforting and urgent nature of the tales told. All the individual contributions are short, few extend beyond five pages and the language is direct, plain and unflinching. There is force in the form. It propels the narrative, unadorned and untamed, searing each account in our memories and unsettling our own perceptions of forgiveness. The stories are presented with little in the way of preamble and often begin at points of loss, crisis and despair. The ways in which each of these accounts breaches the reader’s consciousness reflects the nature of the experiences described. These stories, like the events they relate, arrive unbidden and unexpectedly, without warning or invitation. They interrupt and disrupt. The language is spare, sometimes even brutal, and simple belying their daunting legacies. These are collisions with strangers that can change the direction of a life, or at the least, the beliefs one holds about a life.

 

These stories reveal that the force of forgiveness is often experienced viscerally. Its charge is both negative and positive. Within the book, there are no homilies or sermons about its normative value or otherwise. It is simply there: unfiltered and demanding our attention. Whether it is resisted, embraced, explored or ignored, its force cannot be avoided. A number of contributors note that it may be easier to define forgiveness by what it is not and, in so doing, they challenge much of the received wisdom about what constitutes forgiveness and why it matters. Others are less interested in definitions and the boundaries of the concept. All those who have contributed to the book attend to meaning in all its infinite variety. These are fluid explorations for alongside the meditations on forgiveness, are reflections on what it means to have hope, to be loyal, to restore dignity and ultimately to be human. That these ideas emerge from the rubble of lives shattered by loss, cruelty and destruction is not only intensely moving, but serves as testament to Marina Cantacuzino’s transformative work both in creating this book and leading The Forgiveness Project.

Prof. Deborah Bowman

Editor, Medical Humanities

St George’s, University of London

Email: dbowman@sgul.ac.uk

Twitter: @deborahbowman

 

Art in Arthritis by Nancy Merridew

22 Mar, 15 | by BMJ

 

 

I called Marco from the waiting room.

 

Everyone looked waxen under the fluorescent lights of Rheumatology Clinic. His olive skin looked grey. He rose like a grapevine on the trellis – thickset but gnarled through the seasons.

 

Marco helped his wife with her handbag and they walked together. Her gait was robust; his was antalgic and unhurried, though slower than he’d have liked.

 

In the consulting room we shared our introductions. I explained that I was aware of his medical history and asked “what are your biggest joint troubles today?”

 

Marco’s molten voice was rounded with a beautiful Italian accent and 80 years of life.

 

Apologising in fluent English Marco said that he didn’t speak English well and that it’s important to “talk the talk” of the doctors.

 

He looked down, reached into a shopping bag, and handed me three sheets of drawings.

 

I was stunned by beauty, utility, and clarity.

 

Brown ink outlined each picture, backfilled with camel watercolour. One image revealed the face of a younger man and the muscular shoulders of youth – his mind’s eye self-portrait.

 

Marco nodded to confirm that he had drawn them all.

 

Each drawing was anatomically correct and swelled from the parchment like parts of an amputee ghost. In some, his bones were bare. In others Marco had blended superficial features of skin with deeper structures of the appendicular skeleton.

 

A left hand floated on one page, like Adam’s in his Creation on the Sistine Chapel ceiling. Words – “Pain here” and “Here too” – were anchored by lines drawn to the hand, portraying metacarpophalangeal and proximal interphalangeal pain.

 

Figure.1_Hand.Shoulder_BMJ

Figure 1. Annotated drawings of right shoulder, face, and left hand:

  • “Pain here” [SHOULDER]
  • “Pain here” [5th METACARPOPHALANGEAL JOINT]
  • “Here too” [2nd METACARPOPHALANGEAL JOINT]
  • “Pain here” [FINGER]

 

Six weeks earlier a rheumatologist had diagnosed Marco with recurrence of polymyalgia rheumatica, with shoulder and small joint features, and with a possible component of new onset rheumatoid arthritis. Recurrent carpal tunnel syndrome was diagnosed in his right hand.

 

On the other pages Marco had drawn his hips, knees, and feet, and annotated their aches with cursive writing.

 

These bones it seems that they are coming apart. When I walk for about ¾ of an hour then it start to give pain. Swells up and gets quite hot. The knee.

 

Figure.2_Knee.Foot_BMJ

Figure 2. Annotated drawings of foot and knee:

  • “Pain here especially at night.” [KNEE]
  • “These bones it seems that they are comming (sic) apart. When I walk for about ¾ of an hour then it start (sic) to give pain. Swells up and gets quite hot. The knee.” [KNEE; TIBIOFIBULAR JOINT]
  • “Pain here last for days on both feet. Not all the time” [TALUS]

 

Marco was seen in the hospital’s Orthopaedic Clinic for severe osteoarthritis of his knees.

 

A carpenter, who still bent those knees to work, Marco explained that he once did a Fine Arts degree to support his business. Beyond that expertise, his careful handling of the autographed pictures revealed an artist.

 

The edge of one page cut through the word “foot” at “foo” which perhaps reflected Marco’s life.

 

Born during the Great Depression he was of the frugal generation – practical, resourceful, industrious. I wondered if Marco had ever rationed paper as a luxury, each sheet precious and saved for handsome cabinet designs.

 

Perhaps as an artist, unwilling to share flaws, he had cropped a larger page of sketches.

 

Figure.3_Hip.Foot_BMJ

Figure 3. Annotated drawings of right foot, pelvis and right lower limb:

  • “Both feet hurt at times” [FOOT]
  • “Pain in here sometimes not all the time” [HIP JOINTS BILATERALLY]
  • “Right leg. Pain here” [FEMORAL HEAD, TIBIAL PLATEAU]

 

I was enthralled.

 

Marco’s eyes danced like bubbles from the surface of Prosecco – the muted pleasure of artistic pride.

 

Already he had offered his pictures to me three times as a gift.

 

Yet I had declined as it seemed too generous. I thanked Marco and encouraged him to keep bringing the drawings to appointments given their clinical value.

 

I completed the history.

 

Marco’s main concerns were steroid-related weight gain, although his arthralgia had improved.

 

As he talked I noticed subdued hand gestures. Given his Italian heritage, perhaps Marco suffered a cultural version of locked-in syndrome from the pain that restricted his upper limbs.

 

After completing the physical examination, I liaised with my registrar about Marco’s clinical plan. In a makeshift gallery behind the consulting suites I showed his artworks to the rheumatologists.

 

They advised that I could keep the pictures, and to take photocopies for the medical record. I made an extra copy either for me or for his art portfolio.

 

I returned to the clinic room. Marco’s wife, who had been silent, was keen to hear the consultants’ opinions of his drawings.

 

She beamed on learning that they were unanimously said to be “the most beautiful ever seen in clinic”, and particularly enjoyed by the Head Professor of Rheumatology.

 

Again Marco offered his pictures and this time I accepted with delight.

 

Smiling, he received his own copies as I explained his treatment changes and follow-up plan. We shook hands. Those aching hands created beauty and conveyed exceptional insights.

 

I watched as he left with his wife and wondered about their lives, leaving Italy to bring their charisma to Melbourne.

 

Two days later I framed the drawings – an exquisite medical document and gift. They hang in my home and evoke Marco’s grace, eloquence, and vitality.

 

* * *

 

Acknowledgements and Postscript

 

Marco, a pseudonym, has consented to the release of his artworks for the purposes of this article. See Figures 1, 2, and 3. Sincere thanks to the patient for his generosity and insights.

 

Thanks to Dr Thomas Lawson Haskell BMBS for his excellent photography of the drawings.

 

Correspondence: Dr Nancy Louisa Gwen Merridew BA BSc MBBS DTMH

Basic Physician Trainee, Launceston General Hospital

PO Box 1328, Launceston, Tasmania, Australia 7250

Nancy.Merridew@gmail.com

The Man in Bed Five by Jack Garnham

28 Jan, 15 | by BMJ

I go to see the man in bed five.

 

He winks at me. Cracked lips separate to reveal an imperfect set of yellow teeth as a wry smile spreads slowly across his face. It comes with an enormous effort. He looks worse; the burden of disease seems to weigh heavier with each passing hour. Sickness has slowly reshaped him, like an obsessive sculptor continually revising his creation. His wife fiddles nervously with her plain wedding band; I feel his decline, but for her each step in the inexorable march of his illness is devastation. She looks at me, and in her eyes I see a deep love and a profound fear. They have been married for forty years. He tells me about his two children. He loves them. His daughter lives in Australia. He has a dog that he takes for walks on the common. He waves a frail arm towards the trees outside the window and tells me that he is looking forward to going home. In our short time together he has granted me open access to his private world, to the countless unique experiences that conspire to create an individual. I will miss him when he is gone, the man in bed five.

 

This once vibrant character is dulled by his sterile surroundings: the bland hospital gown robs him of his humanity; the peeling walls and filthy windows drain him; plastic tubes run into and out of his body. For a moment the hospital is a colossal parasite, nourished by this wasted figure; it breathes in around me and exhales a fetid breath, content at having shelled the man in bed five.

 

I am protected. My fraying badge and cheap stethoscope defend me. The flimsy chart I hold is my shield. I am part of the profession, this most noble profession, and to hurt is weakness, to feel is fragility. He is his disease; he is a hospital number, a set of laboratory results, a trace on a machine, a faint bleep heard from the nursing station. To watch him break I must stand on the other side of the glass. I bid a clinical farewell to the peculiar collection of observations that was once the man in bed five.

 

One day the faint bleep fades. The rush of clinical medicine devours the mourning period; a different set of observations arrives to occupy the bed, and there are pressing results to chase and urgent investigations to order. He remains in my mind as the hours pass. Is it appropriate to grieve? Would it be easier to succumb to indifference? These were the questions asked of me by the man in bed five. Can you balance compassion with detachment? Can you manage the intolerable pain of regular loss? Can you walk the fine line? I bury these thoughts and continue to work.

 

As finals draw closer I find myself more frequently troubled by these questions.

 

I still have no answers.

 

Correspondence: Jack Garnham, Imperial College, London (jack.garnham09@imperial.ac.uk)

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