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The art of people with chronic diseases, such as epilepsy, can enhance our understanding of living with illness
Let’s begin with an ending: “The art of persons with epilepsy helps us understand what it means to have epilepsy, providing windows into its complexity and comorbidities.” That is Steven C Schacter’s conclusion to his exploration of “Epilepsy and Art …” in Epilepsy and Behaviour (2016, 57: 265–269). The art of individuals with epilepsy, says Schacter, helps doctors, scientists, and lay people develop an enriched understanding of the daily challenges facing those with the condition. Further, he speculates that research might reveal whether aspects of such art “correlate with side and location of the seizure focus/neural network, age of epilepsy onset, or cognitive and affective aspects”.
Schacter’s paper adds to the burgeoning evidence base supporting the role of art in medicine and one might wonder whether there is an ethics of aesthetics that dares to assert itself in the face of an increasingly science-based approach to medicine. In an Irish context it’s a question that should be asked… and answered in the bricks and mortar of the forthcoming All-Ireland Epilepsy Care and Research Centre. The centre – deserving the support of the medical and wider community – will “provide assessment, care, respite and education/training for individuals with epilepsy and related disorders, and for family and carers, on the whole island of Ireland…”. I learned this from the Epilepsy Care Foundation Ireland, which in April 2019 bought 23 acres of land in north County Dublin. I also learned that Ireland is the only European country that does not have an epilepsy centre, so one might reasonably hope that once the centre is underway space will be made available to accommodate the artistic expression of those with epilepsy and related disorders.
Today, according to the charity Epilepsy Ireland’s Annual Report 2019, there are almost 40,000 people in the country living with the condition. And it is heartening to read on Epilepsy Ireland’s website that, “[m]ost people with epilepsy can live a full and active life working, playing sport, socialising, travelling, and taking up hobbies.” This is in stark contrast to the mood of grim portent evoked by the writer Graham Greene (1904–1991) who, in his first volume of autobiography A Sort of Life (1971), observed: “Epilepsy, cancer, and leprosy – these are the three medical terms which rouse the greatest fear in the untutored.…”
Another possible fear is that “the untutored” of today might include some of those who favour the headlong pursuit of evidence-based medicine at the possible expense of ignoring “The relationship between the arts and medicine”. That is the title of a paper by Dr P Anne Scott in the Journal of Medical Ethics: Medical Humanities (2000, 26:3–8) in which she suggests not only that the arts may stimulate insight into shared human experiences and individual difference, but might also serve to enrich “the language and thought of the practitioner”.
Two examples illustrate the invaluable role that the arts can play among individuals with epilepsy and other conditions. First, Spagno et al, writing in Epilepsy and Behaviour (2019, 93: 60–64), describe their work with adult patients to devise a contemporary dance based on a “qualitative study with patients with epilepsy, their families, and health professionals, called ‘Dialogue with Emotions’ to overcome barriers and to improve quality-of-life in epilepsy”. Second, the importance of the arts to children who are unwell is embodied by organisations such as Helium Arts, whose five-year plan (2017–2021) underlines their conviction that “the arts in healthcare make the strongest impact when a real and identified need is addressed through creative and artistic processes”, hence its aim to “grow the organisation through striving to serve the 160,000 children living in Ireland with a chronic or serious illness”, such as epilepsy.
Interestingly, the arts can nourish both patient and physician. For example, the abstract art of distinguished neurologist Dr John Laidlaw (1920–2009) – who highlighted the “need for a multidisciplinary approach to the care of people with epilepsy” (https://www.rcpe.ac.uk/obituary/dr-john-patrick-laidlaw-frcp-edin) – has recently been brought to a wider audience by award-winning photographer Graham Riddell (https://www.grahamriddellphotography.co.uk/blog/2020/3/dr-john-laidlaw-frcp-artist), who was asked by Laidlaw to help archive his paintings, which can be viewed on Riddell’s blog.
Noting that Laidlaw held his first exhibition in the Scottish Borders town of Peebles at the age of 87, Riddell comments: “It is interesting that he chose to specialise in epilepsy and one wonders what kind of brain he possessed to create such imaginative and beautifully colourful abstracts.”
With today’s global multiplicity of sameness threatening to deaden the senses, the importance of the arts in sparking the flame of creativity cannot be exaggerated, and there is no reason why those who are unwell should be denied access to opportunities to flourish in this way. However, this moral imperative can more easily be asserted within a healthy financial context. In which case it is timely to note the imminent arrival of Epilepsy Ireland’s fundraising Rose Week from 12 to 19 October (https://www.epilepsy.ie/content/rose-week-2020). Whether we acknowledge it or not, we all have a need to express ourselves, and perhaps those who are unwell harbour a greater need than most.