Category Archives: aura

Making the Migraine Art Collection Public

Migraine Action is the national advisory and support charity for people affected by migraine, and is based just down the road from me in Leicester, UK. It provides support to individuals, families, businesses, medical professionals and support workers, with the aim to help sufferers to take control of their migraine and reduce its impact in their home life and in the workplace.

Migraine Action also holds a remarkable archive of around 550 original pieces of artwork which were produced by members of the public for four Migraine Art Competitions held between 1980 and 1987. Entrants were invited to illustrate their own impressions of visual disturbance or the effect migraine has on their everyday lives. The collection represents the work of around 450 artists, of whom three-quarters were women, and one in ten were children aged 16 and under.

Child detail

Detail of a Child’s Drawing. Reproduced with permission of Migraine Action.

Since the beginning of my project, I have wanted to include the art collection as a chapter in my book. While neurologists have considered the depictions of aura in these works to be useful in understanding something about the mechanisms of migraine, they have also dismissed the significance of the depictions of pain and lived experience. This seems wrong to me. Individually and collectively the artworks in the collection provide a vivid insight into life with pain and illness. Aesthetically many pieces of work – the hairstyles, the airbrushing, the net curtains, the cultural references – are very much a product of the 1980s, but the concerns represented by these artists often appear to be timeless. Depictions of daggers, hammers, flashing lights, pulsing veins, flames, social isolation, are as relevant now, as they were to the people who talked of migraine in the fifteenth or seventeenth centuries. But it is the images by children that I found most moving, and difficult to look at. I often wonder how a parent must have felt, after urging their child to draw a picture for the competition, but then having to see the results – their child’s view of pain, isolation and unhappiness.

As I have been working in the Migraine Action offices on my research, we have often wondered about how we could make this important collection more accessible to the public. The opportunity came earlier this year, when we successfully bid for funding from the University of Leicester REF Impact Development Fund, which aims to help researchers develop the public impact of their work.

The grant we were awarded has enabled us to employ a Research Assistant to catalogue and scan the collection, and to commission the Leicester-based social-enterprise design and communications agency We Are Epic to create a website which will give free public access to the entire collection.

The project began in earnest in early March, and the first task for Dr Steve Ling, our ReseAura detail 2Aura detail 3arch Associate, was to catalogue the entire collection. One of the most important aspects of this cataloguing has been the ‘tagging’ of images with keywords that will transfer to the website as search terms. Steve is now well into the high-resolution scanning. Seeing these images at such a large scale on the screen is wonderful, revealing the detail of every brushstroke and pen line.

Migraine detailMeanwhile, We Are Epic have been working hard on the website design. I am so excited about the ways that people will be able to search for images by theme and keyword. The website will be completed over the summer, and we hope to launch during Migraine Awareness week in September.

The historian’s research process is a long one, and it can be years before our results appear in print. This project has happened fast. It’s been so exciting to work with such an enthusiastic team on something that has such a clear and simple purpose. I can’t wait to share it with you all. More soon!

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Filed under archives, art collection, aura, digitisation, history, patients, people

Oliver Sacks and Migraine’s ‘Strange and Riddling Landscapes’

We learnt earlier in the week of the death of the neurologist and prolific author Oliver Sacks. In February Sacks had announced that nine years after being diagnosed with an ocular melanoma, the tumour had spread, and that he now faced death.

There have been many heartfelt tributes to Sacks, who had a rare gift of writing about neurology in a way that appealed to millions. In studies on music, hallucinations, deafness, sleeping sickness, and migraine he mingled history, personal memoir and medical science to ponder the mysteries and marvels of the human brain.

I have only come to Sacks’ work relatively recently. No-one can spend much time on migraine without reading his seminal account, first published in 1970, and revised a number of times since. For Sacks, migraine was a disorder which struck particularly close to home. In 2008, in a blog for the New York Times Sacks talked of how he had experienced migraines, and particularly migraine auras, for most of his life. After experiencing his first aura at the age of 3 or 4, the young Oliver was reassured by his mother, a doctor, who shared her own experiences with her son. Years later, he went on to work in a migraine clinic, where he discovered more people who saw the same patterns that he did. Sacks mused that  perhaps “the geometrical hallucinations of migraine allow us to experience in ourselves not only a universal of neural functioning, but a universal of nature itself”. Such a comment reflected his fascination with the cultural importance – in art, folklore and religion – of neurological quirks, and the creative potential of ‘defects, disorders and disease’.

Sacks’ writings were united by his empathy for patient selfhood, his eye for a good story, and his ability to take meaning and wonder from the real-world lives of the people he encountered during his practice, lives so often assumed to be marred by loss, deficit and inadequacy.

In the revised version of Migraine Sacks added an epilogue in which he wrote:

“For every patient with migraine there is A Long Road, and a Short Cut. The Short Cut is a diagnosis, a pill, a pat on the head. It takes all of five minutes. There is nothing wrong with this. The only thing is – it doesn’t usually work. Hence the necessity, for many patients, to take the Long Road. The Long Road is the road of understanding – an understanding of the heart no less than the mind.”

Sacks certainly received criticism – from other neurologists and disabled people – for his ‘popular’ approach, and for the way he transformed medicine into literature. But the centrality of Sacks’ patients to his writing (Migraine, alone, contains over 80 case histories), and his appreciation for their journeys, sticks with me. As I continue to make my own way through the history of what Sacks’ called migraine’s ‘strange and riddling landscapes’ it is patient stories that I, too, hope will be at the centre of my work.

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Filed under aura, commemoration, history, legitimacy, patients, people

When bodies appear.

‘The head suffers from a certain internal pain which the physicians call migraine…It feels as if there is hammering and pounding in the head. Sound or talking is unbearable, as is light or glare’.

                        – thirteenth-century description of migraine from Bartholomaeus Anglicus, De Proprietatibus Rerum (On The Properties of Things) c.1245. Source: Faith Wallis, Medieval Medicine: A Reader (2010), p. 250.

I was reminded last week of one of my favourite books about bodies and illness. In The Absent Body Drew Leder asks a simple question: why, ‘if human experience is so rooted in the bodily, is the body so often absent from experience?’ (p.69-70).

Pain, Leder observes, makes our bodies appear to use, it reminds us of their presence. Pain ‘reorganizes our lived space and time, our relations with others and with ourselves’. Bodies that are normally silent, that we take for granted, seize our awareness at times of disturbance. Chronic pain, in particular, forces people into a constant dialogue (so often described in terms of battle) with their bodies. In the case of migraine this seizure is a deeply private one, invisible to those looking on. Leder’s book was one of the main reasons that I decided to look seriously into migraine’s history, to ask how, in different times and places, people have made sense of this often unfathomably painful intrusion of the body into their lives.

I first came across phenomenology several years ago. I am certainly no philosopher, but this way of thinking appealed because it is concerned above all with individuals’ relationships and interactions with their own surroundings. Phenomenologists recognise that people do not live in the world of rules and reasons conceived of by science, but in a much messier, more unpredictable world – the ‘lifeworld’. In his foundational book Phenomenology of Perception (1945), Maurice Merleau-Ponty described phenomenology as paying attention to “a general setting in which my body can co-exist with the world” (p.250). In another important text, The Poetics of Space (1958), Gaston Bachelard proposed analysing how people take root, day after day, in a “corner of the world” (p.4). The idea of the ‘lifeworld’ was not a new one. In 1934 Jacob von Uexküll had used the concept to explain how an animal’s existence is experienced through “meaning carriers”. These carriers of significance might include a sensitivity towards heat, or sound. Experience can also be affected by orientation, memories, preconceptions, fears and suspicions.

Pre-migraine

Debbie Ayles, ‘Pre-Migraine’. Credit: Debbie Ayles, Wellcome Images.

It is this emphasis on significance that I find most useful for thinking about the history of an illness such as migraine. This is not ‘environmental health’ in the way that we normally consider it, i.e. in terms of pollution and waste, but a much more personal and less tangible kind of relationship – in which noise, smells, light, changes in air-pressure or the phases of the moon are taken seriously.

One example of this that has stayed with me is a response to a Youtube animation of migraine aura (WARNING: this video contains black and white flashing images). In the comments posted below the video one woman described a time when she had experienced an aura while driving:

seeing multiple images such as repetitive road signs, lights from other cars coming at me while I was dizzy and not knowing if they were in my lane or not, and rays of colors shooting towards me all at the same time. Yes, I pulled over ASAP on a long, dark country road, scared to death and crying’.

People with migraine gain an acute awareness of their surroundings, As can be seen from this quote, and the excerpt I began this post with  this kind of environmental awareness has a very long history.

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Filed under aura, history, illness history, people, philosophy