“If I Could Harness Pain”
The Migraine Art Competitions, 1980–1987
fig. 9.1).1 Sunlight streams through the windows onto a chaotic scene. Crockery and dirty saucepans pile up around the sink. A kitten plays in the milk spilling from an upturned tumbler by the sink, and a mop lies abandoned on the floor next to the puddle. Vegetables on the counter lie waiting to be chopped. Laundry tumbles out of a washing machine. In the shade of the cupboard, a woman sits on the floor, her head in her hands, apparently overwhelmed by the detritus of daily life. Executed in watercolor, this work of art is vividly evocative of the everyday effects of migraine. Apart from the details of a normal routine gone awry, the diagonal lines of light and shade, the drape of the curtains, and the angle of the open cupboard door all hint at the disorientating zigzag of a migraine aura. “I was seeking to portray the futility and despair of trying to cope,” the artist of this picture later commented. “Attempting to maintain a normal routine for the family with faulty vision, clumsiness, and pain that clouds all coherent and rational thought can only end in one result: chaos.”2
The painting of the woman in her kitchen is one of around nine hundred original artworks submitted by members of the public to four international art competitions, held between 1980 and 1987. The competitions were run by the British Migraine Association (known as Migraine Action since 1997) and sponsored by the pharmaceutical company Boehringer Ingelheim. The collection of nearly six hundred pieces that remains is a unique and remarkable archive.3 Ranging from simple line drawings on cheap file paper to detailed and intricate pieces of art employing diverse techniques—including oil, watercolor, collage, and airbrush—the collection represents the work of around 450 artists, of whom three-quarters were women, and one in ten were children age sixteen and under. The vast majority of these individuals had no artistic background. Together, the pieces form a powerful and, at times, deeply uncomfortable witness to the intense pain and disruption of migraine, an experience beyond the scope of much of the scientific literature. This chapter is about the migraine art collection, the creation of which arose out of a particular constellation of factors. These include an emerging sense of identity and advocacy among migraine patients, increasing pharmaceutical interest in the condition, a recognition of the value of art as a tool for communication and therapy within the physician-patient encounter, and the idea that migraine was part of the identity of a migraineur. The collection reflects the increasing visibility of migraine, and people with migraine, in public discourse, even as it reveals the disjuncture between lived experiences of pain and the priorities of the pharmaceutical industry and medical profession. Finally, the artwork represents the experience of migraine as medical knowledge was on the cusp of a new neurological and pharmaceutical era.
Fig. 9.1. Untitled artwork, submitted to the Third Migraine Art Competition, 1981, image 14. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
The British Migraine Association, the first organization founded to officially represent people with migraine, had been formed in March 1958 by Peter Wilson, an employee of the City Council in Bournemouth, a large town on the southern English coast. He had experienced migraine from the age of twelve. The association had a somewhat modest beginning. Wilson placed an advertisement in the local newspaper, the Bournemouth Evening Echo, inviting anyone with migraine to attend a meeting. Ten people came, and each contributed £10. Within a year, the association had more than a thousand members. An advertisement in the popular magazine Woman’s Own boosted recruitment, and in 1960, a further two thousand people joined. Initially, the association sent its members a single-page newsletter, with details of free migraine clinics at four hospitals, but its founders soon began to envisage a greater role for it and organized the first of what would become biennial research symposia held in London.4 The early success of the British Migraine Association reflected a very real sense that the medical and political establishments were uninterested in migraine and dismissive of its sufferers. Writer Pamela Hansford Johnson, Baroness Snow, who became president of the British Migraine Association in 1961, remembers the response of the people around her when she had her own first attack, at the age of eleven, “in the days when people said that little girls could not have headaches.”5 In her 1959 novel, The Humbler Creation, she had described “a migraine attack in all its repulsiveness.” After the book’s publication, she had been surprised to receive a flood of letters saying “This is me.” Johnson believed her writing had attracted so much interest because she had managed to express “the personal humiliation of the complaint.” This humiliation, she explained, resulted from the continuing influence of psychosomatic theories, which made people feel as if they ought to be able to control their nervous nature, ridding themselves of migraine by an act of sheer will.
In 1960, the British government was asked to urgently investigate the dearth of support available for people with migraine. In a House of Commons debate, a Member of Parliament (MP) for Glasgow, Mr. Jon Rankin, reminded his audience that in 1954, the British government had told people with migraine to “cheer up,” because a lot of research was in progress. Yet in 1960, “nothing appears to be happening.” Referring to the work Neville Leyton was doing with hormonal and allergic therapies at the Putney Clinic, Rankin commented that migraine only seemed to be being cured by “private benevolence,” not “public munificence.” He could not understand why, despite Leyton’s success at Putney, the doctor was not being admitted to the “magic circle” of the National Health Service (NHS). Another MP, Richard Harris, argued that specialist treatment clinics should be established within the NHS. In response, Edith Pitt, Parliamentary Secretary to the Ministry of Health, explained that the government had no authority to tell doctors which treatments to use, nor to advise them on research matters. This was the responsibility of the Medical Research Council. The problem, she tactfully suggested, was that Leyton seemed not to have persuaded the majority of doctors that they should copy his therapeutic approach.6 Apart from illustrating the extent to which hormonal and allergic approaches to migraine remained peripheral to standard prescriptions of sedatives and ergotamine, the debate in the British Parliament illustrates how migraine advocates were seeking to establish services that would address their needs within a new nationalized health system that was still establishing the boundaries of its service. At the same time, there was a palpable sense of limbo, since ongoing research into vascular and sensory mechanisms seemed to have stalled, rather than delivering tangible results to benefit patients.
In America, Keith Wailoo has also identified this as a time of transition, as earlier high mortality rates from infectious diseases entered “a new era when a host of chronic degenerative ailments became society’s chief burden.” The postwar pharmaceutical industry offered “a powerful new armamentarium” of sedatives and tranquilizers, pain relief for “a rising tide of crippling arthritis pain, migraines, back pain, cancer-related pain, and unspecified subjective pains.”7 On both sides of the Atlantic, the post–World War II period raised urgent questions about the role of government in the delivery of relief, the regulation of research and industry, and the means to determine what constituted true pain, worthy of attention and resources. Wailoo suggests we might see the 1960s and 1970s as being characterized by the “slow expansion of a bureaucracy of relief.”8
By the early 1960s, the implicit compact in Britain, which had seen its citizens accept that government and the medical profession would deliver healthcare on their behalf, was beginning to weaken. Patients began to expect higher standards and greater accountability, and clinicians started to involve their patients more in primary care.9 In 1962, neurologist Macdonald Critchley pleaded for colleagues to establish migraine and headache clinics. He promised that family doctors would welcome places where they could send difficult-to-diagnose patients, who would be “profoundly gratified” to be taken seriously and sympathetically handled. For neurologists, there would also be a payoff. Clinics would create hubs of potential subjects for research, afford a peep into the ecology and natural behavior of this “tantalizing but fascinating disorder,” and present enhanced opportunities for assessing drug therapy.10 The migraine clinic Marcia Wilkinson founded at the Elizabeth Garrett Anderson Hospital took a particularly innovative approach to welcoming patients who were in the throes of an attack. For London’s workers, Wilkinson’s clinic offered a couch, analgesic treatments, and antiemetic tablets, instead of a painful commute home. There was even an ambulance that could collect people and bring them to the clinic.11 In its first four years, eight thousand people were treated, of whom a quarter arrived during an attack. In setting up the clinic, Wilkinson had taken inspiration from Elizabeth Garrett Anderson’s 1870 MD thesis on migraine, which showed a profound understanding of migraine in combination with sound practical advice, emphasizing the well-being of the patient through nutrition, regular meals and habits, rest, “and great quantities of hot tea.”12 While Garrett Anderson’s work had been ignored by her Victorian contemporaries, a century later, Wilkinson’s approach gained great respect from her colleagues. Patrick Humphrey, who, as director of the Glaxo Company’s Division of Pharmacology, would be instrumental in the development of the triptan class of drugs, recalls that it was Wilkinson who had made him realize the need for new, effective migraine medicines.13
By 1967, there were eleven migraine clinics in Britain. Most were in the southeast, including four in London, but patients could also access specialist help in Birmingham, Stoke-on-Trent, Newcastle, and Edinburgh.14 The clinics established in the 1960s and 1970s acted as important hubs, linking patient advocacy and focused treatment with pathological investigation and pharmaceutical development. They offered patients a range of established medications, including methysergide, ergotamine, sedatives, and hormone therapies, but they were also at the forefront of new approaches. Researchers affiliated with the clinics found that the patients who came there were often willing volunteers for double-blind trials to test new drugs and to investigate theories regarding migraine mechanisms. The papers that came out of these settings made public some of the most significant advances in late twentieth-century migraine knowledge, particularly the shift from a vascular to a neurological framework for understanding this disorder. For example, Dr. Edda Hanington’s early reports on tyramine headache in the late 1960s came from interviews with 160 patients at the Elizabeth Garrett Anderson Hospital and demonstrated a clear relationship between diet and migraine attacks.15 The British Migraine Association had aided Hanington’s research by circulating a questionnaire about dietary factors to all subscribers of Migraine News. The responses of 240 members helped confirm Hanington’s ideas about the role of tyramine, which would be so important to the development of the blood platelet theory of migraine in the 1970s.16
Clinics were also opened in other countries. At the Copenhagen Acute Headache Clinic, Jes Olesen and his colleagues researched changes in cerebral blood flow during migraine attacks.17 In Houston, Texas, Ninan T. Mathew’s research with eighty clinic patients led to an early recognition that episodic migraine might transform into more chronic manifestations and daily headaches through factors such as stress, excessive use of medication, hypertension, and adverse life events.18 Publications based on research with patients from specialist clinics included topics as diverse as therapeutic experimentation with drugs (including clonidine and aspirin), the treatment of pain-trigger areas in the scalp and neck, measurements of serotonin levels in and between attacks, psychological aspects, weather, outcomes of pregnancy for women with migraine, prodromal symptoms, and cerebral blood flow.19
This period is also notable for being the moment when the idea of the “migraineur” was at its most prominent, in both academic and popular use. The term seems to date from 1936. In an article on “Allergy as a Factor in Headache,” C. L. Hartsock and F. J. McGurl outlined an intensive dietary regimen for what they called the “true migraineur.” In his 1957 novel, The Last Angry Man, American writer and journalist Gerald Green reflected the dominant psychological theories of the day by making the protagonist, Dr. Sam Abelman, a typical migraineur, who was “bothered by details, worrisome, demanding perfection in yourself, which is understandable, and in others, which is very dangerous.”20 In the mid-1960s, use of this term began to increase, and rapidly did so since the 1970s. Two significant publications help explain this burgeoning sense of migraine as identity. The first was Joan Didion’s 1968 essay, “In Bed,” in which she describes her relationship with an “uninvited friend.” Migraine had been central to Didion’s life from her first experience, at age eight. “Three, four, sometimes five times a month, I spend the day in bed with a migraine headache, insensible to the world around me,” the essay began. Without drugs, Didion could function “perhaps one day in four.” As a teenager, Didion thought she could deny migraine’s existence, ignore it, fight it, and it would go away. Spending one or two days a week in bed, “unconscious with pain,” when there was nothing wrong with her, had seemed “a shameful secret, evidence not merely of some chemical inferiority but of all my bad attitudes, unpleasant tempers, wrongthink.” Everyone knew, she explains—in a reference to the psychological paradigms that dominated medical and popular understandings at the time—that migraine headaches were either imaginary or self-inflicted. So she persisted, wishing “only for a neurosurgeon who would do a lobotomy on house call.”21 If Didion’s work highlighted the effects of migraine on everyday life, Oliver Sacks’s Migraine made the idea of the migraineur into a best seller. Sacks reflected on the romantic view of the characteristics of male and female migraineurs in the work of writers such as Walter Alvarez (and the contrast with how people with epilepsy were seen in terms of having a hereditary taint, or a constitutional stigmata). A migraineur, then, was not just someone who experienced migraine, but a person whose physical appearance, comportment, social interactions, and intelligence were all shaped by, even defined by, their neurological makeup.22 Quoting both Didion and Sacks in an article for the Washington Post in 1986, Pamela Margoshes asked for an end to prevailing stereotypes of migraine sufferers as “weak, perennially petulant, hyperventilating, overwrought nellies whose blood vessels dilate at the drop of a hat. Because the old myths are simply not true. Migraine is not a personality disorder. It’s a neurological tornado, a force of nature.”23
Finally, it is important to note the significance of art therapy and “outsider art.” In institutional settings, health professionals saw the allocation of time to creative activities as a way to occupy patients, but further interpretation of this artwork offered an opportunity to gain access into the minds of those patients. Alexander Weatherson, chair of the British Association of Art Therapists, described how art therapy could give patients a voice by allowing them to express their fears and struggles, as well as being a creative way to appeal for help, understanding, and sympathy.24 By the early 1970s, some researchers were also becoming interested in art as an insight into the more subjective, lived experience of migraine, particularly when the patients were children. A study published in the journal Neurology in 1973 reported the results of encouraging children to draw what they saw or felt during a migraine attack. As well as representing their experiences of scotoma and other visual phenomena, one child depicted how other people appeared unusually small, while another drew a room, with her mother being upside down. A girl created an image of herself lying on a railroad track as the train passed over her. For the article’s authors, this variety of experiences was the most remarkable aspect of their experiment.25
The idea of outsider art was closely related to the art therapy movement. First used in 1972, the term describes art created by self-taught artists, including patients with mental illness and autism, as well as art that was simply unconventional and idiosyncratic, ignoring tradition or cultural influences. One of the originators of the term, Roger Cardinal, proposes that outsider art “offers its audience a thrilling visual experience . . . an art of unexpected and often bewildering distinctiveness” that reveals “private worlds . . . so remote from our normal experience as to appear alien and rebarbative.” Discussing drawings by artists with autism, Cardinal is less interested in the images as scientific documents revealing signs of disease or psychic distortion than in simply accepting, and respecting, these creative outputs as art in and of itself.26
By the 1970s, art had become widely accepted as a legitimate, and often revealing, expression of the experiences and effects of illness on ordinary people’s lives.27 Migraine researchers’ belief that art could provide a view into the (mal)functioning of the brain itself echoed the discussions of a century earlier, when men of science extolled the virtues of Hubert Airy’s veritable photograph of a morbid process in the brain. While earlier discussions had excluded anyone who could not be relied on to represent their aura objectively, unsullied by the inconvenient intrusion of pain, by the late twentieth century, patients were more often being seen as active participants who could make an effective contribution to migraine understanding. This emerging context of cooperation, awareness of (and interest in) the effects of migraine on patients’ lives, and a knowledge exchange between patients, charities, clinical researchers, and pharmaceutical companies was important in improving research, but it also lay behind the idea for the art competition and helps explain its success.
In 1973, Derek Robinson, a marketing executive from the pharmaceutical company Boehringer Ingelheim, had been searching for images for educational and advertising material to help promote a new clonidine drug for migraine, called Dixarit.28 Robinson met Kenneth Hay, a general practitioner from Birmingham, England, whose patient, an art teacher, had explained her migraines to him through sketches.29 Inspired by the idea that more people might make migraine art as a way to communicate their experiences, Dr. Hay introduced Jean Butter to Robinson, who saw the potential her images had for marketing his company’s products. In 1979, the British Migraine Association agreed to cosponsor a public art competition, and the first call for entries was sent out in the charity organization’s Migraine Newsletter in August 1980.30
The instructions to entrants for the first competition were very specific: they must be migraine sufferers themselves and should draw or paint either their own impressions of one of the forms of visual disturbance that heralded a classical migraine attack or illustrate the effect of migraine on their lives. Pain was not mentioned. Peter Wilson, representing the aims of the British Migraine Association, hoped to attract entrants with artistic skills, as well as welcoming “natural, even primitive” depictions of the most dramatic aspects of migraine, in order to emphasize its separation from common headaches.31 The competition was a huge success, attracting more than three hundred entries over the nine months when it was advertised. A panel of judges—including, Dr. Nat Blau (secretary to the Medical Advisory Panel of the Migraine Trust and joint honorary director of the City of London Migraine Clinic), Jon Liddell (British Migraine Association), Richard Calvocoressi (modern art curator at the Tate Gallery)—were charged with awarding the prizes. Marcia Wilkinson’s City of London Migraine Clinic hosted the exhibition from the first competition, with prizes awarded by Dame Vera Lynn.
The winning image, by a professional artist, depicted a rural scene of lush green fields and a dirt road leading to farm buildings on the horizon (fig. 9.2). The impressionistic brushstrokes of the background scene are in stark contrast to the precision of a C-shaped scintillating scotoma that overlays and partially obscures the background, its edges appearing to shimmer and pulsate outward. The artist later explained that his aura began with a small blue dot in the center of his vision, around which would appear a “thin glittering bracelet.” Over a twenty-minute period, it would usually break on the left before enlarging away to the right.32
With its jagged zigzags, straight lines, and details of blue, red, and yellow, the image closely followed the convention of depicting the type of aura known as scintillating scotoma in a particular way, one that had been established by nineteenth-century men of science and epitomized by Hubert Airy’s diagrams. While the detail of the aura is certainly beautiful, it is important to acknowledge the very particular aesthetic tradition continued by this image. The value accorded to the entry (notably, by an all-male judging panel) reflected a century-long tendency to accord the highest status to “accurate,” authentic renderings by men of the appearance of stereotypical migraine aura. This was a very narrow and restricted visual language of aura that detached migraine from the failings of the body. The image was scientific, and supposedly objective. We can almost imagine John Herschel and William Gowers nodding their approval.
Fig. 9.2. Untitled artwork, submitted to the First Migraine Art Competition (awarded first prize), 1981, image 463. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
As he planned the first migraine art competition in 1980, Peter Wilson had hoped the entries would help highlight the “astronomical human suffering” migraine causes. It seems surprising, therefore, that the organizers of the first competition did not initially anticipate the extent to which entrants would produce pieces of work that not only portrayed aura and the effects of migraine on their lives, but vividly and often brutally represented experiences of extreme pain. Andrew Levy is right when he comments that the most profound impression gained from viewing galleries of migraine art is the repeated violence being done to the head.33 Even physicians used to dealing with migraine patients every day admitted to finding the migraine artwork difficult to look at. Nat Blau thought the collection was marvelous, but he also added that some images were “like a nail boring through the head.”34
Fig. 9.3. Untitled artwork, submitted to the Second Migraine Art Competition, 1982, image 302. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
For me, there is one picture that encapsulates the significance of the Migraine Art Collection as a witness to pain (fig. 9.3). Submitted to the second competition in 1982, it is a visceral glimpse inside the body and life of a migraine sufferer. The figure of the woman takes up the right-hand side of the picture. Vigorous brushstrokes in a dark crimson spurt out of the head, arrows bore into the skull, and a spear enters the bloody right eye, while tears fall from the left one. Vomit spills from the mouth, while, inside the body, the stomach and esophagus are picked out in hot, painful red. To the left, a series of crossed-out shapes—bottles (of perfume, or perhaps alcohol), the sun, television, a trip to the theatre—reveal the aspects of normal life she must avoid. The piece might be seen (as can many of the artworks in the Migraine Art Collection) as reflecting and contributing to a genre in which artists, particularly women, have represented their pain, their difficult relationship with medicine, and their feelings about their own damaged, scarred, or deteriorating bodies in often quite shocking and revealing ways.
There are certainly echoes of Frida Kahlo’s Broken Column (1944) here, a self-portrait in which Kahlo depicted the suffering she endured after a tram accident that left her with multiple fractures of her spine, pelvis, leg, and foot. In Broken Column, Kahlo is split open from neck to pelvis, revealing a broken and disintegrating doric column within, her body held together by white straps, representing the steel corset she was forced to wear. The skin of her face and body is impaled by nails, her eyes weeping tears.35 Art historians have interpreted Kahlo’s nails as referencing the Christian iconography of martyrdom, but it seems likely that the many artists who depicted arrows, nails, and drills attacking their heads in their entries to the migraine art competitions were making a much more literal point about the sensation and location of their pain.36 As I have looked at this piece of migraine art in the context of a wider tradition of self-portraiture, I have been struck by a comment that Ludmilla Jordanova has made in her essay about artist Beth Fisher, who documents the effects of mental illness, cancer, and aging on herself and her family. Jordanova asks us “to look hard at the work itself . . . to perceive its rawness, its fierce, unsettled emotions, its scale, its darkness, its lack of closure, to meditate upon it, but never to lose sight of it as a woman’s labour.”37 We should accord the pieces submitted to the Migraine Art Competitions a similar level of respect and dwell on how this body of work provides a profound insight into lives lived with pain, disruption, and the constant presence of an unwelcome force.
These works of migraine art are not easy to look at, and they took courage to make. In his writing on illness narratives, Arthur Frank talks of moral “acts of witness, telling truths that are too often silenced because they speak of what any sane person would rather ignore among life’s possible outcomes.” Frank has also explained that sick people “must consider it appropriate for private experiences to be represented as public events.”38 These points about appropriateness are highly relevant in this context. Artist John Joseph Brennan (who won the fourth migraine competition with Migraine Man), experienced migraine from childhood, and he reflected on how important this sense of legitimacy was for his inclusion of migraine experience in his own creative processes. In art school, he didn’t see taking influences from his migraine “as a legitimate means to do good art.” Over time, however, it became “a reference, like a support,” to which he felt privileged to have access. The clouds, zigzags, and other imagery derived from his migraine experience became part of his own personal visual vocabulary.39 We shouldn’t underestimate how important this validation must have been for entrants unused to publicly expressing their experiences. Many noted on their entry forms or on the back of their pictures that they weren’t artists. As Kathy Charmaz argues in her study of chronic illness, “telling anything about illness can mean revealing potentially discrediting information about self.” The act of telling (or, in the case of art, showing) strains relationships, risks a loss of control, and raises the potential to be ignored, rejected, or stigmatized.40
“Let a sufferer try to describe a pain in his head to a doctor,” Virginia Woolf famously suggested, “and language at once runs dry.”41 Yet there is quite definitely a language of pain, and one way (the only way, according to David Biro) to convey experiences that resist literal expression is through metaphor.42 Joanna Bourke has argued that historically, there have been “a set of figurative languages” for representing pain through metaphor. This often includes pain as a monster, companion, or loiterer; a force that cuts, rips, shatters, and burns; an object that hammers, cuts, and squeezes; or, more abstractly, as heat, weight, or color.43 The Migraine Art Collection is replete with analogies such as these. The artworks depict objects like weights, chains, lightning, flames, drills, hammers, blades on knives, saws, and axes. Again and again, migraine artists have found ways to communicate the sensations they feel in their heads, eyes, necks, and stomachs, such as a nail driven into the side of a head in a flash of jagged white lightning, showing how the “sharp, penetrating . . . pain felt fixed and embedded.”44 One of the most compelling motifs, appearing repeatedly in the collection, is the notion of migraine as an attack by either little people or devils, who often hold pins, hammers, axes, and screws. These attacks could be both physical and sensory. In one image, a little devil drills into the skull, creating a crack through the forehead and over an eye, while his friends lift weights, ring bells, and shine a torch into the woman’s eye (fig. 9.4).45 Devils are featured again in a self-portrait, where they hammer nails into a woman’s forehead, eyelids, and temples while she holds her head, shouting in pain.46 A flock of black, bat-winged characters flit around another head, some turning a screw attached to a clamplike apparatus enclosing the skull, and others using pins, hammers, and knives to inflict a variety of pains on the skull.47 “It’s always waiting,” one woman wrote of the flaming monster reaching out with its right hand to grab her throat while holding a dagger in its left.48
In 1991, ninety images from the Migraine Art Collection were exhibited in San Francisco in a display entitled Mosaic Art. There, the works were viewed by neurologist Oliver Sacks, who incorporated the insights he gained from seeing the archive into the revised edition of his best-selling book, Migraine. Sacks had been particularly struck by the pieces showing cobwebs or nets pinning bodies down, interpreting these as evidence not only of visual, but also of sensory disturbances.49 It is also true to say that a web can be a powerful metaphor for a sense of isolation and entrapment, particularly when combined with an incessantly ringing telephone,50 a carving knife and forks taking huge slices from the side of the head (fig. 9.5), or punching hands. Another artist used the idea of being caught in a glass box to indicate how migraine cut her off from normal society (fig. 9.6). “It was a symbol of my reduced world, the restrictions confining me because of my migraine” she explained.51
Fig. 9.4. Untitled artwork, submitted to one of the Migraine Art competitions, undated, image 484. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
Fig. 9.5. Untitled artwork, submitted to the Second Migraine Art Competition, 1983, image 388. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY.
Fig. 9.6. Untitled artwork, submitted to the Second Migraine Art Competition, 1983, image 317. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
In many of the images, the straightforward bluntness of the metaphors is shocking, particularly in the pictures submitted by children, which are some of the most moving, as well as the most difficult to look at. As I’ve explored this collection, I have often wondered how parents must have felt, after urging their son or daughter to create a picture for the competition, to see the effects of pain, isolation, and unhappiness portrayed through their child’s eyes. There is the matter-of-fact brutality with which an eleven-year-old boy depicted a power drill connecting his brain to his eye (fig. 9.7). Children drew themselves being attacked, in one case by a man in a military uniform. A twelve-year-old girl wrote a poignant comment alongside the image of a hammer hitting her skull: “When I have a migran [sic] I am continually being sick I never know what to do with myself. Sometimes I feel like killing myself.”52 Loneliness dominates the children’s images, showing how acutely aware they are of the life they are already missing. An eight-year-old girl lies on a sofa, hands over her eyes, surrounded by the repeating motif of a clock face.53 In one picture, awarded first prize in the “under-16” category for the third competition, the chair at the head of the birthday party table is empty, the balloons, presents, and characters in fancy dress waiting for the child who lies in bed. “Please Be Quiet. Do Not Disturb,” a flap folded over the image of the sleeping girl requests.54 In another piece, the same child drew herself looking out from behind the bars of a prison cell, alone except for the spiders, and crying. “If I could harness pain, I could conquer the world,” one fifteen-year-old girl wrote on the back of a dark image illustrating her visual disturbance (fig. 9.8). Discos, swimming, school, food, and outdoor activities are all missed because of migraine. The artist who created Programmed In! (fig. 1.1), the first image in this book’s introduction, submitted another entry, depicting her memories of missing out on maypole dancing as a child, with the zigzag aura above her head drawing our attention to the girl left alone on the grass while her friends played. There is no sentimentality or romanticization of migraine pain in these images. They show that from a young age, people have a shared repertoire of motifs with which to express their experiences of migraine. Metaphors of pain as a weapon, a companion, or an unwanted visitor, or of the body as trapped, split, or disintegrating from the inside out, situate these representations of migraine within a broader body of art and literature that tries to make sense of pain in myriad forms. As we have seen in previous chapters, some of the essential elements of the visual and linguistic repertoire with respect to migraine—boring, hammering, light, noise, fire, and attack—stretch back hundreds, if not thousands of years. Yet the collection also provides important evidence of how experiences of migraine aura and pain are shaped by the social, cultural, and medical contexts of the time in which they were produced.
Fig. 9.7. Untitled artwork, submitted to the First Migraine Art Competition (under-16 category), 1981, image 427. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY.
Fig. 9.8. The Power of Pain, submitted to the Third Migraine Art Competition (under-16 category), 1985, image 502. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
Pneumatic drills, ruined shopping trips, the disorientation of navigating in busy public areas, traffic jams, typewriters, and lightbulbs all suggest an amplification of migraine experience in a technologically driven postindustrial society. They provide important evidence of migraine’s twentieth-century social history and remind us that however timeless some metaphors might appear to be, the experience of illness is shaped by the conditions of each historical moment. Telephones and televisions are notably recurring themes in the migraine art collection. In Cause and Effect, the telephone symbolizes the social and professional pressures that can produce a migraine attack. At the same time as it causes the woman’s life to telescope in on itself, it also is the medium through which to communicate apologies for missing work and meetings, cancelled outings, and social absences.55 The noise of the telephone is central to other images too, such as a phone that rings incessantly while a woman pleads “go away, go away, go away.” In another piece by the same artist, the phone is off the hook, a denial or refusal of contact with the world outside. Cancelled appointments are a prominent theme, particularly in terms of the isolation and loneliness that come with missing parties and days at the seaside.
“How can you drive when the road looks like this?,” one artist asked, depicting a uniform stretch of grey obscuring the lower three-quarters of a circular field of vision.56 Several of the images hint at the frightening experience of driving as an aura develops. In The Onset of Migraine (fig. 9.9), a storyboard takes the viewer through six stages of the aura, beginning with a small white star in the middle of the visual field that gives the first warning of an attack’s approach. Within six minutes, the flashing, spiky, C-shaped scotoma dominates the left-hand side, as blurred vision creeps in from the right. Once sight is entirely blurred, there is a brief sense of relief—”normal in three minutes”—until a violent headache follows. One artist simply drew a large cross next to her car, indicating one of the many aspects of her life, including wine, computers, and cheese, that migraine placed off limits. The judges for the third art competition were particularly impressed by one driving-themed entry. Stuck in a traffic jam, hands clenching the wheel, the artist looks out through the windshield, with a jagged aura cleaving across the traffic ahead and the cars on the other side of the road disorientatingly stacked on top each of each other.57
Fig. 9.9. The Onset of Migraine, submitted to the Third Migraine Art Competition, 1985, image 337. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
A number of the images from the Migraine Art Collection make contemporary cultural and social analogies to describe the migraine experience. I began this book by discussing Programmed In!, a self-portrait depicting Hubert Airy’s drawing of a C-shaped scotoma as the Pac-Man character in a video arcade game. Neurologist Nat Blau was particularly struck by one child who had drawn herself lying in bed, unable to go to school, and who had described migraine as being “like Star Wars.”58 One of the most striking cultural references is in a piece submitted to the third competition, in 1985, in which a woman’s hand reaches out against a black background. From her forefinger, a glass bauble labeled “migraine” dangles over the outstretched hand of a young child (fig. 9.10). While it is not clear whether the artist is the recipient or the giver of the bauble (quite possibly she is both), the painting is a simple but moving meditation on the hereditary nature of migraine. The two hands reaching toward each other clearly reference The Creation of Adam, part of Michelangelo’s extensive sixteenth-century masterpiece (1508–1512) painted on the ceiling of the Sistine Chapel in the Vatican. This element of the famous fresco has also inspired some of the most resonant cultural images of the late 1970s and early 1980s. On 31 July 1978, Time magazine marked the arrival of the world’s first test tube baby, a pivotal moment in the history of reproductive medicine, with a cover design showing a test tube containing a glowing fertilized egg between the two reaching hands. If the Time cover was a suggestive link to the genetic theme conveyed in the migraine picture, the immediate inspiration for this particular competition entry seems to have been even more recent. In 1982, cinema audiences around the world had been captivated by the story of the extraterrestrial who simply wanted to go home. The poster for E.T. had the same blue light against a black background, and a child’s hand reaching out. The artist who painted migraine as a bauble to be passed down between generations tapped into a tradition where a very simple motif—two hands reaching toward each other—encapsulated a range of ideas about life, hope, family, and belonging.59
Fig. 9.10. Untitled artwork, submitted to the Third Migraine Art Competition, 1985, image 313. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
Fig. 9.11. Untitled artwork, submitted to the Third Migraine Art Competition, 1985, image 316. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
Writer Joan Didion knew her migraine never occurred when she was “in real trouble,” but instead when she was fighting “a guerrilla war” with her own life, “during weeks of small household confusions, lost laundry, unhappy help, canceled appointments, on days when the telephone rings too much and I get no work done and the wind is coming up.” It was at times like these when Didion’s “friend” came “uninvited.”60 Her description of the daily battle with migraine is vividly portrayed by pieces from the art collection depicting the overwhelming minutiae of domestic responsibilities. With bound eyes and forehead, and a hot water bottle on her neck, a shaking, nauseous woman holds her mouth as she cooks breakfast (fig. 9.11). Smoke billows from burning tomatoes and sausages, a saucepan boils over, the trashcan and laundry basket overflow, and the dishes pile up. Surrounded by the chaos of things she needs to do, pieces of paper taped to the walls also remind her of all the things she must not do. Don’t get tired, excited, or angry. “Don’t enjoy yourself, don’t live,” the note above the stove orders, while other notes ban chocolate, yogurt, cheese, onions, oranges, dairy produce, and booze. The shelf above her is crowded by a multitude of pill boxes and medicine bottles, while a potted feverfew plant wilts on the countertop. The artist described how her migraine attacks resulted in a “sense of failure as a wife and mother.”61
Fig. 9.12. The Five Ages of My Migraine, submitted to the First Migraine Art Competition, 1981, image 319. Courtesy of Migraine Action via the Wellcome Collection, licensed under CC-BY
One artist in his seventies entitled his piece To Fit Again and reflected on a life avoiding, among others, town centers, shopping trips, sports events, theatres and cinemas, dances, dinners, and receptions.62 Two images stand out for the detail with which they depict the effects of migraine over the course of an entire life. In The Five Ages of My Migraine, the annotated scenes depict important periods in a woman’s life (fig. 9.12), from her earliest childhood memories of having vinegar-soaked rags wrapped around her head at the age of three in 1916 through charity work during widowhood in the 1970s. Each small tableau contains a self-portrait of the artist, with arrows running down one side of her face to signify the pain. In each image, apart from the one of her as a child, a zigzag aura partially obscures some of the most important moments in life, affecting her ability to write in school and intruding on her daughter’s wedding in 1967. During the “caravan rallies” she and her husband attended between 1956 and 1972, she lies on her bed while, through the window, the fun can be seen continuing outside. Her Five Ages of My Migraine was the first of four drawings this artist submitted, one for each competition. Together, they produce a powerful commentary about the effects of migraine on life and work. Migraine at the Gala Concert, submitted to the second competition in 1983, shows a vaporous grey visual aura obscuring the choir, almost as if it was the music wafting its way through the concert hall.63 In The Migraine Life, submitted to the third competition in 1985, the aura appears as if it is lightning striking from a cloud that darkens the sky over St. Paul’s Cathedral in central London. As the caption running down the left-hand side of the picture explains, “On the Brightest Day: the Happiest shopping spree, the dreaded MIG may strike, like a thunder storm and ruin everything.”64 In Sorry Closed for Migraine, the artist looks out from her shop door as she places a “closed” sign in the window with one hand while covering her left eye and temple with the other. The shop’s sign, above the glass, reads “Focal Display,” a reference to the visual effects that have forced the lone shopkeeper to close her business.65 The Five Ages of My Migraine made no suggestion that the artist had found any medical relief during a lifetime in which migraine appears as a constant threat, disrupting school, work, important days, significant evenings, and holidays.
A photograph of a young woman in underwear, cut from a magazine, forms the centerpiece of a collage. With ballpoint pen scribbles, the artist identified the areas of her body most affected by migraine: the head that feels “like lead,” the sinking feeling in the stomach, the shaky legs, a speech bubble explaining “I love Mars Bars,” denoting either a craving or a forbidden luxury. A pair of sunglasses is “a very useful essential.” At the bottom of the image, an outline figure of a person, drawn in red ballpoint pen, lies on a cutout photo of a sofa, with the underlined request “PLEASE DO NOT DISTURB.” Written notes about the artist’s migraine experience fill the margins on the rest of the page, describing in detail its effects on her life. Unusually, the image describes the benefits that pharmaceutical advances had brought to her life. Her migraines began in 1911, “with so-called sick headache,” which she battled weekly until 1942. When her doctor prescribed Migril, it “opened out a new world, I could get [up] from my bed and prepare some sort of a meal for my family.” In 1976, when she again “was not doing very well,” a hospital consultant prescribed the antidepressant drug Nardil, which proved to be another transformation. She would take two Nardil and two Dixarit a day. Now, at age 78, “I have lots of energy. Ride a bicycle[,] garden etc.” But this freedom from pain also required discipline: “[I] know when to stop. All this is accomplished by observing a diet.” The right-hand side of the page emphasized further the sacrifices required to avoid attacks: “no to cheese chocolate jelly ice-cream milk bananas . . . no to TV sessions of more than thirty mins no knitting as I pass out, like the final stages of coming out of a fit.”66
The discipline required to manage migraine is a recurring theme. “I take tablets as prescribed by my doctor. Eat at regular times,” one artist wrote.67 Other therapeutic strategies are more subtle: closed curtains in darkened rooms, quiet isolation, bed rest, sunglasses, ice packs. But the majority of artists who commented on their relationship with medication did so negatively. In Absolutely Fed-Up with Pills, the person was transformed into a vessel to be filled with tablets, one of a number of artworks giving a sense of how dependent on medication some entrants felt themselves to be. One artist found solace in her family and Christianity, and she included drugs among the list of other things—despair, loneliness, depression, fear, pain, and vomiting—that threatened a fragile sense of hope. In another image, a monstrous, scaly hand holds out a bottle of pills “to be taken twice a day” to a young woman surrounded by stars and flames.68 One self-portrait depicts a woman sitting at a table, staring into a small freestanding mirror on the checkered tablecloth, an open bottle of pills on the flat surface in front of her, as if debating whether the benefits of the two tablets that awaited her outweighed their side effects.
When an entrant who had sent her artwork to the migraine art competition as a child was interviewed some years later by Klaus Podoll and Derek Robinson, she recalled:
I remember never taking the name of “migraine” in vain. When trying perhaps to get a day off school because I didn’t feel well, I never once tried to con my mother that I was having an attack. You wouldn’t dare treat them with disrespect, mainly as you felt you might be punished with the worst attack of your life; besides it would have been impossible to fake the effects—no one could act that convincingly unless they were truly in pain. . . . There is that feeling that it is taking over your body from within, slowly engulfing you and making you very small, frightened, and powerless.
Her drawing was dominated by an eye, within which a girl sat on the floor.69 Looking back, from the perspective of someone who no longer considered herself a migraine sufferer, she remembered the profound sense of loneliness she felt during her childhood attacks: “There was never anything anyone could do to make me feel better. . . . You would have to ride out the experience on your own inside your head.” Tellingly, this artist was one of many who responded in the past tense to Podoll and Robinson’s questions about how migraine had inspired their art. The artist who had drawn herself cooking breakfast stated: “I had no pleasure and seemed to be punished if I veered from the narrow control I had to impose on myself.” Another commented on how even the 1980s seemed to represent different expectations, particularly for women: “It seems a bit outdated now. She would be expected to manage a career, job, or study as well as the children and the housework, plus the migraine, nowadays.” For her, the more positive viewpoint she could take in hindsight was as much a reflection on the quieter lifestyle, and the knowledge of personal limits, that came with maturity.
In 1991, just three years after the last of the four Migraine Art competitions, Glaxo released sumatriptan, a drug that revolutionized migraine treatment for millions of people around the world affected by this condition.70 For the first time, many found that a migraine could be aborted at the first sign of an attack. The significance of this change is hinted at by the responses to another series of migraine art competitions, this time in the United States. Between 1989 and 2003, the National Headache Foundation sponsored four of them. Entrants to the first American contest were expressly instructed to create a “vivid interpretation” of pain, a theme that attracted four hundred entries. The second contest, held in 1998, was the first to be held in the post-triptan era, and only 150 submissions were received. There are two explanations for this precipitous drop in the number of entries. The first is that the success of triptans had radically reduced the number of people experiencing severe migraine, and thus cut down on the pool of possible entrants. In addition, the call for submissions to the next contest asked for artworks that would “educate others about the benefits of migraine prevention.” Thus a second explanation for why this competition received much less interest is that people with migraine still simply did not feel able to produce creative responses on such a positive theme. By the fourth competition, entitled My Life with Migraine, entries again reached four hundred—suggesting that a theme acknowledging the realities of migraine pain, and the often fraught relationship with medication, even after triptans were available, was a crucial factor in attracting interest.71
In recent years, professional artists have also drawn directly on experiences of migraine to inspire their art. Visual artist Blythe Smith describes making art while coping with chronic migraine as “my way of breathing.”72 In 2016, Welsh artist Fran Kelly, a sufferer from hemiplegic migraines, created “Maison Migraine,” an installation that invited visitors to immerse themselves in the experience of migraine, with distorted everyday objects, uncomfortable audio effects, a disorientatingly uneven floor, and rotten-tasting candies.73 Kelly uses her art to try and raise awareness about migraine, as well as to communicate its effects. Another British artist, Debbie Ayles, produces bold paintings in acrylic to reflect not only her experiences of aura, but also as an experiment to see how the process of creating the works might provoke migraine. View of a Lounge during a Migraine is deliberately intended to express a feeling of claustrophobia, while the psychedelic Interior with Clock—Inducing a Migraine was painted “to see if the bright colours would induce a migraine.” Although Ayles comments that the early stages of planning the piece were enjoyable, she suffered migraine attacks as the colors covered the canvas. Her attempts to ease the discomfort with white paper placed over certain areas failed, and “it got too painful and someone else was directed to complete the painting.” Working on another piece, Greenacres Barn, Ayles discovered that it was not necessarily bright colors that caused visual disturbance, but the way that the tones and colors were distributed.74
Since the turn of the new century, online communities for knowledge exchange, support, validation, and censure have emerged. The advent of the internet has radically expanded opportunities for people to share their experiences and creative interpretations of illnesses such as migraine. These include galleries of artwork on Flickr; animations of migraine aura on YouTube; and Facebook, Twitter, and Instagram accounts. YouTube, which hosts a number of video animations of migraine aura, the most popular of which have been viewed hundreds of thousands of times, appears to be a particularly important online space in which men feel comfortable narrating their experiences of migraine in public.75
Since 2016, the original Migraine Art Collection has reached a new audience after being digitized and put online in a gallery allowing anyone to download and share any piece from the collection. For the charity Migraine Action, putting the artwork online was a way to raise awareness of migraine generally, as well as start conversations about particular themes or issues facing people with migraine, such as common triggers or the fear of another attack. The aspects of life with migraine portrayed by artists in the 1980s continue to resonate. Migraine has by no means gone away.
The Migraine Art competitions in the 1980s were an important opportunity for ordinary people to depict their experiences with this extremely common disorder. The body of work that was submitted to the contests over nearly a decade is a unique witness to the sensations of migraine in the body and its devastating effects on lives, even at a very early age. While some of the metaphors and experiences seem to reflect ongoing themes that echo across the centuries, there is also much that is very modern in these pieces. The collection is a vivid visual confirmation of how inadequate our treatments of migraine have been, culturally, socially, phenomenologically, and medically.