HOW TO GET AROUND THIS SITE.
The About section describes the project, its aims hopes and potential outcomes. You are here now.
The Home page is where you’ll find my daily data stream. If you find that a bit much to cope with, I also post a monthly summary with charts and some more reflective description here: “Monthly data 2013“.
Under Data Methods, you’ll find the parameters for the data indexes I am using and also a description of the different types of data I am collecting and publishing.
The Affect Data, Hat Data, and Medical Data menus provide access to archives of posts reflecting these data types.
I found out I had cancer (multiple myeloma) in 2012 after suffering pain in my shoulder. I had never been seriously ill before and my only previous contact with hospitals of any kind was as a visitor. The moment of diagnosis is fearful, vertiginous and sobering as your immediate horizons shrink from ‘four score years and ten’ to what could be a handful of months punctuated by unpleasant medical treatments. As an artist my immediate response was to explore my illness as a problem that could be examined from different perspectives, reflected upon, and ultimately captured in some form. How do can you represent such a thing? Where do you begin when faced with an excess of feeling and disorientation?
‘Stoicism: Grin and Bear it = 7’
‘Control: A Little Control = 4’
‘White blood cells: 3.84’
‘All at Sea: Nonplussed = 3’
‘Hat: Striped Beenie’
As a new patient you are introduced to a world of tests and results, ‘gridded-up’, pricked, measured, scanned and cut; someone will literally ‘take the piss’. These testing regimes are of course vitally important as diagnostic and predictive processes but as a result you become an administrator of your own illness, being ill is a full-time job and the time you spend dutifully recording your results liaising with hospital staff and medics is significant. In my world, these daily, weekly and in some instance hourly processes of data extraction, took on a significance beyond the statistical or diagnostic, akin to something fetishistic, magical, and symbolic of wider bureaucratic and pathological forces at the limits of my comprehension. They could also generate moments of humor and enabled points of connection with other staff, patients and family members.
‘All at Sea: Bewildered = 5’
‘Mood: Felt Subdued = 5’
‘Pain: Moderate = 3’
‘Hat: Blue Trilby’
What these data regimes are, how they enable connection and communication, and how they can be turned to narrate and document the lived experience of a traumatic event are at the heart of this project. Following diagnosis I designed a range of methods to track and measure my illness. Alongside my normal blood, pain and other bio markers, I invented or adapted a range of other data indexes through which I could keep track of and communicate my experiences including: ‘stoicism trackers’; the ‘all at sea index’; ‘control’, and ‘mood’ amongst others. Each of these produced a numeric score which was output in graph or other visual form and published regularly on a project website (bloodandbones.org). I also kept a running total of the drugs I was consuming and their costs derived from an NHS procurement database. Finally, I formulated a ‘sartorial tracker’ that captured my daily change of headwear as I had begun to wear hats as a result of chemotherapy side-effects.
This way of combing personal, psychological, medical and financial data enabled me to triangulate the complex sets of feelings, experiences, emotions and moments which people experience when undergoing treatment into a 360° view, a process that also enabled a daily practice to help me structure and make sense of my days. Beyond this therapeutic conceit lay a more ambitious objective to contribute new languages and expressions of illness from the perspective of an ‘artist-patient’. I hoped some of the approaches I developed, which I called ‘data documentary’, would be helpful and re-usable by others and published all my data and methods on the project website.
‘Stoicism: Grin and Bear it = 5’
‘Hat: Blue Beat Mod’
‘Serum Electrophoresis: No Paraprotein Detected’
There has been some very good work by other ‘artist-patients’ exploring their cancer, notably by Jo Spence who in the 1980s documented her breast cancer using photographic practice to interrogate power imbalances in relationships between medical institutions and patients, and Kathrin Spielvogel who in the 2000s used film montage techniques to image her feelings of disjuncture whilst under treatment. Much has also been written on the subject, and after diagnosis I returned to Susan Sontag’s Illness as Metaphor (1978) in which she proposes that cultural renderings of the disease can be as damaging as the pathologies they represent. Metaphors, Sontag argues, introduce an obscuring layer to our understanding of cancer at the expense of more measured accounts and understandings of the social and medical reality of treatment. These arguments are insightful, but as argued by George Lakoff and Mark Johnson in their book Metaphors We Live By, it is difficult to escape metaphor as it is structurally embedded in our language (‘structurally embedded’ is itself a metaphor). Their approach, sought a way to respond to Sontag’s requirements for more nuanced accounts of disease but which also gave free rein to include the personal and emotive voice of lived experience. In this work the arrangements of data, number, image and object develops a deliberatively terse visual and informational grammar that seeks to capture both the bureaucratic mundanity of coping with serious illness and the excess of feeling such situations produce.
Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors, London: Penguin, 2009
George Lakoff and Mark Johnson, Metaphors We Live By, Chicago: The University of Chicago Press, 1980.
For more about Myeloma please go here:
The NHS is providing me with the data that my illness is producing. At present I’m tracking this in a number of ways including medical, affective (how I feel, seem etc.) and financial. More details of this data and how I’ve parameterized it are available under the data methods menu.
The basic choice of methods is determined by a project aim to make the data and my illness as public as possible, and following that enabling creative, cranky, clever and open uses of it. For me, but also for others who may be interested. Humour is also a part of this. Humour is important. Rigor and intellectual enquiry are also central to the project.
This data will be sliced and diced in a number of ways, some of which I have yet to determine but will include visualisations, installations, paintings and drawings.
All work is licensed for use under the following Creative Commons license. You are free to use/reuse it as long as you contact me first to say how, and use appropriate attribution.
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License.