Research

“Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in significance…” (Sontag, 1978)

 

‘Idioholism’ is my doctoral project, where I developed transferrable wellbeing methodologies initially to usurp Chronic Fatigue Syndrome – but with implications for anyone who is incarcerated. So in the first instance house-bound sufferers of CFS-ME were my (autoethenographic) study group, but the project has expanded to include prisoners and other types of incarceration.

Wherever medicine has discarded its caring role, or simply has no available cure, sufferers of chronic illnesses frequently turn to experimental and experiential strategies. Such strategies can seem an outlandish or surreal response to illness; for example, working closely with an abandoned and decrepit harmonium in the Scottish borders or forging Twitter-length statements about the universe may not be on the medical map, but to artists like myself, these processes are a way of life.

Given that many artists are intimate with their processes, what implications does this ‘intimacy’ have in the life of the sick artist? Moreover, if artists are supposed to be ‘sensitive’ (as the cliché goes) or at least receptive, instead of such ‘sensitivity’ being a derogatory slur, can it be a gateway into self-directed coping mechanisms? Also, what role does ‘predicament’ have in co-authoring the work? Is predicament (and disability) always something to be overcome – or does it help sculpt the work by ruling out vast swathes of previously available opportunities prior to illness? Can predicament itself ‘co-design’ projects like this? Does ‘predicament’ help with an agony of choice that may disadvantage those with multiple opportunities and greater free will?

(Above) The Idioholism Vinyl Trilogy
Artwork (c) Chris Dooks / Rutger Zuydervelt

The idioholism project is a conclusion to a PhD process which began in 2009 and was completed during 2015. Etymologically, idioholism is simply a fusion of ‘holism’ with ‘idiosyncrasy’ – and my ‘idioholism’ – or process of ‘holistic idiosyncrasy’ produced a package of red, blue and yellow 12-inch records – containers of a series of audio/visual/textural arts-lab experiments, including many analogue and digital assets. Expansive download packages accompany the works as does an accessible academic exegesis. But it is the augmented and adapted creative process (which the records have hopefully captured), which is the core of the project, but framed as neatly as possible by three records (and further documentation).

This autoethnographic experiment touches on improving the life of ‘the whole person’ with CFS-ME (which I have had since 1998). It attempts to forge a broad path of discovery via artistic practice/research and first-person experience. Practiced reflexively, my aim was to construct and test low-energy interventions of CFS-ME through (in the main) accessible sound-art practice, and to collate these trials into three themes. The aim then, was to examine if a ‘dynamic’ arose in the space between the themes. Put another way – I was ‘triangulating’ the themes, and identifying any cross-overs – but also reflecting on what areas of my own life became more fulfilling through the process.

As mentioned, the physical shape these resulting inter-reliant art projects took, were housed as three expansive coloured vinyl records. I referred to them as ‘fragmented films’. It took five years, and the process was designed so that it did not aggrevate my condition. I was not always successful in the latter, but the records began as hypotheses and ended up as sellable objects, sets of which were sold from £25-£100 each depending on the package.

In the illustration above we can see the harmonium record (red) and the cosmology piece (blue) menioned at the beginning of this page. But there is also a third, (yellow) LP which explores the benefits of recording cicadas courting in Provence (below). Seen apart, these records appear quirky, but used together they illustrate one person’s approach to transforming multiple facets of life afflicted by illness (and explored in the sleevenotes of each record). Each colour represents a particular faculty of life that the illness is retarding. A laser-cut wooden box houses the set.

An artist’s take on his or her own illness is a tactic that is gaining academic interest. In the absence of panaceas, many idiosyncratic routes arise from the deficit of understanding in illnesses of ‘murky causality’. First-person, artist-led projects are part of this phenomena. This particular project has arisen out of a sober need for treatment that is not being met medically. The only choice for myself and perhaps others in a similar position is a creative response to CFS/ME/CFIDS et al.

The significance of CFS-ME lies in both its invisibility and the breadth of the life-strata it retards. Questions arise. Under these conditions, is it that an artist-devised project may claw back at least some ability to experience a fuller life? What are the adaptations the practitioner must adopt in order to outmaneuver aggressive illnesses (like CFS-ME) which affect the whole person?

Solutions to illnesses like CFS-ME are likely to be bespoke when the cause still remains speculative. Additionally, there exist historical issues surrounding the nomenclature of the illness. While all of this is being thrashed out and fought, time drags along. One way of providing a sense of ownership over the illness is for sufferers to become authors of their own self-initiated health programme – and in my case, artistic intervention is chosen as the route to a better life in the absence of a formal, medical process.

Can artists, who already come from a tradition of ‘mining the self’ in their artistic practice, be better creatively equipped in coping with their chronic illnesses or does it make them worse? indifferent? Moreover, to what extent would such methods be transferable or practical for non-artists? If sufferers cannot cure themselves of the illness, can they at least have a better relationship towards the illness?

In order to investigate this perspective, this project operates subjectively but reflexively as a kind of arts-laboratory with much of the project in the first-person. My personal route to improved wellbeing (but not a cure) lay in tweaking the way I worked in audio arts and photography. I had to devise a working title/term for the process that may have made a difference over my ‘whole’ life: ‘idioholism’. This word is both a container for the principles I explore in my methodology – but it becomes a potentially transferrable term if other sufferers are interested enough to dive in to the process explored in depth, in the exegesis (available here soon).

I was a film-maker before I became too sick to make films and TV documentaries. Today I term myself a ‘fragmented film-maker’. However, another creative practitioner, from an utterly different background may devise their own bespoke route to a fuller life and if my framework was transferrable, that practitioner would still be pursuing ‘an idioholism‘. What this project attempts, is to create blueprints or a conceptual template that can be changed and tailored to the backgrounds of other creatives (and perhaps ultimately, to those who believe they are not ‘creative’).

This first-person adaptation to CFS-ME is a small step towards augmenting an unsatisfactory relationship with one’s energy problems. In my case, this has led to my slowly devising a trilogy of conceptual vinyl records, deliberately across seemingly unrelated areas as containers for a number of audio-visual and semi-autobiographical strategies to my illness.

The idioholism project serves as a kind of ‘proto-syllabus’ of ‘exhaustion ursurpation’. In this ‘syllabus’, seemingly unrelated modules (the tracks on the records) appear individualistic and separate – but each record is themed, and when triangulated together with two other themes they hopefully form more than the sum of their parts resulting in a sense of something ‘holistic’ in the broadest sense of the word for the practitioner – but also for the person who is listening to (and reading/looking at) the objects.

This project is located within the growing tradition of contemporary artists working with health problems at a doctoral level. One may place the project within the space between the fringes of medical humanities – and artistic practice as research. In the latter, a bias towards unconventional interventions or experimental practice is part of the modus operandi of artists who take this route – pursuing a kind of activism toward their illness – that is the terrain of this project.

In my case, because medical advisory committees continue to argue over the causality and significance of CFS-ME, and because of the ineffectual treatment (if any) offered, it comes as no surprise that sufferers like myself take matters into their own hands. As a result, experiments like this multimedia project attempt to clear part of a path, providing a degree of control over a life that might otherwise become meaningless and filled with a greater volume of suffering.

By further attaching the practice within the academic fields of autoethnography and phenomenology, it may be possible to cement this investigation, without losing the experimental and practical philosophy of this so-called ‘idioholism’ – and ultimately evaluating the potential for replicability.

Another research strand…