Category Archives: patients

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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How migraine lost its legitimacy

In May 1782, a flamboyant character graced the King’s Theatre Masquerade in London. Gliding his way past the Venetian sailor, the gentleman in a coat of two different colours, and the usual unremarkable costumes of some eight hundred attendees, the High German Doctor cut a dashing figure. He introduced himself to the gathering as ‘Le Sieur Francois de Migraine, Docteur en Medicine’. Continue reading

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A fifteenth-century poem

I recently received a message from Jenni Nuttall, a Lecturer in English at Oxford University, asking whether I had come across a migraine poem by the fifteenth-century Scottish poet William Dunbar that she had written about on her own blog.

The first verse of the poem reads as follows:

On his heid-ake

My heid did yak yester nicht,
This day to mak that I na micht.
So sair the magryme dois me menyie,
Perseing my brow as ony ganyie,
That scant I luik may on the licht.

Here is the translation from Middle Scots into English (with thanks to Jenni for allowing me to use this):

My head did ache last night,
so much that I cannot  write poetry today.
So painfully the migraine does disable me,
piercing my brow just like any arrow,
that I can scarcely look at the light.

There are two more verses of the poem  in which Dunbar describes the physical pain of looking at the light and, as Nuttall observes, he also beautifully captures a sense of the migraine aftermath, or ‘postdrome’ – although Dunbar would get up the following morning, his spirit remained asleep, unable to waken for mirth or minstrelcy, revelry or dancing.

Vein man

Miniature of vein man, or a phlebotomy(blood-letting) chart, inscribed ‘Homo venorum’. British Library Egerton MS 2572 f. 50.

There is actually a suprising amount of evidence of how medieval people dealt with migraine. Images of homo venorum often included instructions for bleeding, such as this one in a fifteenth-century guild book of the York Company of Barber Surgeons.  The circle in the bottom left hand corner refers to the point between the thumb and first finger of the man’s right hand, and contains instructions in Middle English for treating ‘migram’ by opening the vein between the fingers and the thumb. The literature and imagery of phlebotomy offers some of the earliest evidence in a long history of migraine management in everyday medical practice. Other medieval treatments include a cap made of aloe, myrrh, wheat flour and poppy oil in the thirteenth-century manuscript of Causae et Curae, attributed to Hildegard of Bingen. In eleventh-century Chartres, a patient might have been told to stroke peony root over the site of pain, while a thirteenth-century Welsh text recommends eating a baked or roasted hare’s brain stuffed with rosemary flowers, followed by sleep to treat the ‘migran’. So there is evidence of medieval descriptions of migraine and of treatments, but what is so important about Dunbar’s poem is its expression of something much less tangible, of what people thought a migraine felt like in the fifteenth century.

I was delighted to finally learn of this poem, and yet Dunbar is hardly obscure: he was employed by James IV, and his migraine poem has been discussed a number of times. To my knowledge he has yet to be noticed by historians of medicine. This is a wonderful poem – in many ways it seems a staggeringly modern evocation of a migraine – and it certainly deserves to be included in our sources.

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Migraine Marketplaces: Of Ideas and Hope

In her recent memoir, All in My Head, about dealing with the chronic pain of continuous headache, Paula Kamen talks of the long and circuitous journey she took to find effective medication, and of the turn to alternative treatments that followed the constant failures. Alternative medicine, she writes, “appealed precisely because it was not Western medicine, which I had grown to revile and fear” (p.114). I’ve been thinking about Kamen’s search for relief over the past week, as I’ve been researching the treatments available to people with migraine in the very early years of the eighteenth century. Historians of medicine are used to talking about the ‘medical marketplace’ but Kamen uses a different phrase to describe this world: as the ‘marketplace of ideas’ (p.115). Continue reading

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