Art and Illness Symposium: What does illness feel like?

For the vast majority of us, illness is where life and death meet. It’s a guarantee that even if we ourselves don’t get seriously sick soon one of our loved ones will. Knowing a little of what to expect and trying to imagine that will prepare us and help us be more compassionate if our mother, say, screams random obscenities at us. Or we ourselves might find strength knowing that this indescribable agony is shared with countless others. I know it did for me.

I hope this post may be of some value to even one person who may feel confused or misunderstood right now. The speakers gave so much of their time to the symposium (more here) that I hope to do a little justice to them here.

Illness vs Disease

At the Saturday session, David Alpers gave a hugely extensive overview of the culture and art expressions of illness. The crucial point of his talk was that the experience of the patient must be valued as real, and listened to. He quoted Kleinmann’s definition of illness as the “innately human experiences of symptoms and suffering”. Disease is the medical description, found in text books and without reference to the specific individual. Illness relates to the sick person, how they suffer, the perceptions and reactions of people around them and the view of their culture to that condition…The above diagram takes a cue from Aoife Lowney’s Total Pain. Illness is far more than a collection of symptoms.

The difficulty of imagining illness in the minds of the healthy

Fergus Shanahan, key organiser and Professor of Medicine at UCC in his opening speech described the difficulty that healthy people have in understanding the what it’s like to be ill. That, he says, is the reason why we need art. Alpers quoted William Styron on depression: ‘… incomprehension has usually been due not to a failure of sympathy, but to the basic inability of healthy people to imagine a form of torment so alien to everyday experience’.

From having a life to being a body in pain

‘Pain’ is far more than unpleasant visceral sensations. One’s existence and identity becomes dominated by the body. The poet John F. Deane who spoke on the Friday evening is a widow and father of lupus sufferers
. A line of one of his poems struck me: “…reduce your creatures to a quivering meat”
. Aine Lawlor, opening speaker and Morning Ireland broadcaster, remembered her times with breast cancer. She
 told how she went from being ‘empowered’ to ‘being a body
’. Later she said that just as the best politicians are those who know what failure is like, the best doctors are those who know what pain feels like.

The terror of illness: a state of uncertainty and unpredictability

The trajectory of an illness is devastating in it’s refusal to be project managed. There is pain, and then there is the terror of not-knowing what will happen next. At the roundtable discussion, it was mentioned by one of the consultants that despite knowing more about disease there is a sense of futility.

Time in slow-motion and being in isolation

The velocity of the ill, 
however, is like that of the snail.
Emily Dickinson

Time slows to an unbearable pace. Elisabeth Tova Bailey when bed-bound over decades described how watching a wild snail gave her insights into the passage of time. Isolation is a word that came up repeatedly in the symposium. Tony Judt‘s description of a “prison without parole” really captured the sense of a body trapped and restrained, helpless and disempowered: “Helplessness is humiliating even in a passing crisis…”  A social aspect of isolation was described by Peter Whorwell, a specialist in Irritable Bowel Syndrome. Patients coming to his Wednesday clinics are totally embarrassed and humiliated by the symptoms of their condition. Kay Jamieson touched on the social stigma that surrounds mental health problems.

It is hopelessness even more than pain that crushes the soul.
William Styron

Unbearable Loss

Loss is loss, and nothing is gained by calling it by a nicer name
Tony Judt

It doesn’t take much to imagine how devastating the loss of independence or degraded physical functions are, nevermind the uncertainty around them. Kay Jamieson spoke of the fear of losing the trust of her professional colleagues or clients when disclosing her bi-polar. Those with untreated psychiatric conditions risk losing the trust and friendship of those around them. The depressed lose self-esteem to a crippling extent. Listening to the illness narratives, I realised that loss of hope in a future is a major loss. How can we gather the strength to keep living without that?

Spiritual distress: Re-evaluation of one’s former life and identity

Aoife Lowney spoke of her experience working in a hospice with a young man who had a brain tumour. She listed the
 spiritual distress features as
 anger, resentment, depression, apathy, guilt, confusion, anxiety and powerlessness and explained that for those with terminal diseases there is no “future” as we normally take for granted. The totality of a personal narrative is now in the past. Facing the reality of death, the patient may want to leave something of themselves behind. There is often a re-evaluation of time and of the future. Aine Lawlor mentioned that as she is in permanent remission, time for her is measured differently: “How many Christmasses do I have?” It takes on a new quality and is more precious. Iarla O’Lionard performed on Friday and described how music’s “fabric is time… to listen to music is to understand time… ” Music helps our “capacity to deal with change” – I guess illness is the most forceful kind of change.

Summary

The main characteristics of illness experience I found from the symposium were:

• Pain
• Reduction of self to a body
• Uncertainty and unpredictability
• Changed perceptions of time
• Isolation
• Loss
• Spiritual distress
• Re-evaluation of life

Sources at the symposium for this article

1. David H. Alpers gave a wide and detailed overview of the culture, experience and expression of illness. Amoung many sources were three illness narratives in literature: William Styron’s Depression in Darkness Visible, Elizabeth Tova Bailey’s ME in The Sound of a Wild Snail Eating, and Tony Judt’s ALS in Night.
2. Aine Lawlor, broadcaster of Morning Ireland gave the opening speech and gave the story of her breast cancer.
3. Dr. Peter Whorwell related the experiences of those with Irritable Bowel Syndrome.
4. Bi-polar was vividly portrayed by Kay Jamieson, professor of psychiatry at John Hopkin’s and in her book Touched by Fire.
5. Aoife Lowney described the story of how a brain tumour patient coped by using web 2.0 to build narratives and leave a personal legacy.

Other sources of interest

• Virginia Woolf’s 1930 essay On Being Ill
• Susan Sontag’s Illness as a Metaphor
• Lisa Appignanesi’s Mad, Bad And Sad:A History of Women and the Mind Doctors from 1800
• Bronnie Ware’s Top 5 Regrets of the Dying

Please comment!
You are warmly welcome to add further characteristics I have missed, and any comments to clarify or questions are also invited.

Next post
How can illness be communicated in the arts and humanities?

 

What I learned from ‘The Experience of Illness: Learning from the Arts – a Symposium’ at University College Cork, 2012.

The reductionist methods of science, so well taught to physicians, need to be linked with an imaginative investigation of our patients’ experience.– David H Alpers

Roundtable Discussion

Without exception, everyone’s lives are somehow or other effected by illness. It is a pressing concern to develop understanding of, and therefore empathy for the ill, which leads to better care. Empathy involves being able to put oneself in another’s shoes and to actively imagine their experience. To do so we must understand the experience in detail. However, the ill have greatly reduced verbal capacities and verbal language cannot fully describe pain and experience. So communication methods must go beyond words to better describe experience.

The Experience of Illness: Learning from the Arts was an international symposium held at University College Cork, Ireland on November 30th and December 1st, 2012. It was organised by the APC (Alimentary Pharmabiotic Centre) and the Glucksman Gallery. There is also an ongoing art exhibition Living / Loss: The Experience of Illness in Art at the Glucksman which continues through to March 10th, 2013. It’s definitely worth checking out.

The aim of this symposium was to explore how arts and humanities can contribute to medical practice and education, leading to better care for patients. As the flier said: “Kindness, compassion and concern for the dignity of those who suffer do not come naturally and need fostering. This is best achieved with some understanding of the human experience of illness.” The event was open to all “who care about the human experience of illness”.

There will be a set of blogposts to follow here that will ask these questions:–

• What experiences of illness were described?
• How is illness experience communicated by art?
• How do arts and humanities contribute to medical practice and education?
• 
What specific methods were outlined over the course of the symposium?

This is by no means a full report of the symposium, as it will not review all the speakers. It will be a categorically arranged response to the four questions that interest me. My background is in design and communication, and as such, to write a series of posts is the most ambitious endeavour for this weblog so far.

By the end of this set of posts, I would like to have touched on how this particular symposium explored the relationships between arts, communication, culture, medicine, and cognitive and affective imagination.

Your views are very welcome as it would be useful to broaden the response and dialogue.

Cultural Depictions of Meloncholy

Check out this BBC Radio 4 programme about Robert Burton’s sprawling encyclopedic analysis of the ‘epidemic of the time’. Written in the seventeenth century, The Anatomy Of Meloncholia draws on the classics, literature, medicine and a multitude of quotes to delve into the area of what we now refer to as depression. Here’s an article in the Lancet Meloncholy, Medicine and the Arts. Below is the frontispiece to the original edition, and at the end is that famous print entitled Meloncholia by Albrecht Dürer.

BBC and Lancet links via Morbid Anatomy

Generative Art – A Primer

Other introductions from PBS here:

Arterial Plumbing: Data visualisation and diagnosing heart disease

It’s encouraging to learn of scientists actively researching and highlighting the importance of data visualisation in life-saving areas.
Two aspects of data-viz principles have been demonstrated by Professor Hanspeter Pfister and Michelle Borkin, at the Harvard School of Engineering and Applied Sciences, from a study on diagnosing heart disease.

Our goal was to design a visual representation of the data that was as accurate and efficient for patient diagnosis as possible,” says lead author Michelle Borkin, “What we found is that the prettiest, most popular visualization is not always the most effective.

Credit: Michelle Borkin

Traditional visualisation builds a 3D model of the arteries: but a relational 2D model proved more helpful. The circumference of each artery and their proportionate lengths are outlines, as well as the branching points. The result is a network diagram.

Typical scientific colour schemes for data are of the rainbow variety. The Harvard researchers showed that using black to red instead improved the quality of diagnoses for heart disease.

With the new visualization, an arterial system that would previously have been reconstructed in 3-D (left) is instead deconstructed and shown with each branch separated from the main vessel. Arteries are then represented as 2-D branches (bottom right) whose dimensions are proportional to the circumference and length of the corresponding artery. Branching points and relationships between branches are also displayed.

Full article on PhysOrg.com here

How many steps to happiness?

Since 1970, the UK’s GDP has doubled, but people’s satisfaction with life has hardly changed. (NEF)   Evidence-based approaches to well-being are emerging and there are a plethora of initiatives and groups transforming those insights into policy and public health campaigns. Recently the Action for Happiness campaign was launched. With a manifesto in the Guardian by one of the directors, Mark Williamson and a smashing website by Public Zone, yet another positive trumpet call has been sent to take care of our well-being. So, what are the suggested means to that end? Below is a rapid countdown from ten of some tactics to gain happiness from current to ancient thinking. Each suggestion is the outcome of volumes of research and wisdom….

10 –  Action for Happiness   – keys to happier living:
With the handy mneumonic “GREAT DREAM”: We have Giving, Relating, Exercising, Appreciating, Trying Out; Direction, Resilience, Emotion, Acceptance, Meaning. Image below. Read more about these here.

5 – New Economics Foundation – ways to well-being
Check out this report on evidence-based approaches to well-being by the  New Economics Foundation published in 2008. There’a wealth of evidence-based reports on that site. They have distilled a huge amount of research into the following:
Connect, Be active, Take notice, Keep Learning, Give

3 – A summary of the Dharma
Or maybe the summary of all the teachings of the Buddhas might be easier to remember:
Commit not a single unwholesome action,
Cultivate a wealth of virtue,
To tame this mind of ours,
This is the teaching of all the buddhas.

1 – The Golden Rule
As Karen Armstrong explains in her TED talk, the emotion of compassion is the vital central point of all the great terditions:
Do unto others as you would have others do unto you.

<1 – Richard Wiseman’s 59 seconds
If you’d rather have a time-based approach check out the book 59 Seconds by Richard Wiseman, which seeks to expose self-help myths by presenting scientifically proven techniques to help you in less than a minute.

It’s a great disservice to list these without detailing each in better depth. I hope to expand on this in future entries.

Are lists and bullet points helpful at all do you think? What other lists are there out there? Schlep your ideas into a comment below.

RSS Compassion Feed

Love this project by the Design Interaction Team in Goldsmiths, London is so simple but followed months of ethnographic research. Those Poor Clare nuns aren’t allowed whizzy gadgets, only the basics of life. So they verge on being cut off from life, and thus, their prayers following a similar fate. This cross shaped device fits aesthetically into the world of the convent, but also distills the news into a stream of basic messages, on which to contemplate and connect (I presume). Maybe we could all do with a little action-based tweet reading?