My name is Tom Corby, I’m an artist, academic and sometime writer. Blood and Bones keeps track of my Multiple Myeloma. Helping me with this project is Gavin Baily my old friend and collaborator from: http://www.reconnoitre.net and Lanfranco Aceti artist, curator and writer.
I can be contacted on: firstname.lastname@example.org
For more information on this form of blood cancer go here:
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.
The use of blogging to discuss illness is relatively commonplace, providing an important adjunct to treatment for many. Much of this work understandably takes the form of personal narratives which by turn can be moving, funny, informative and therapeutic for both the author and reader. I don’t wish to replicate that here, but rather take a slightly different approach that applies methods from the arts and data disciplines (science and what might be loosely termed ‘digital culture’). This work has partly been framed by the work by other people interested in the uses of personal data including Lucy Kimbell’s social and political indexes, Nicholas Feltron’s obsessive tracking of mundane data and Martin John Callanans daily ‘I’m ok’ updates amongst others. My friend Jane Rendell from the Bartlett School of Architecture also reminded me of the wonderful work of Jo Spence, Helen Chadwick and Kathy Prendergast. I loved Helen Chadwick’s work and Prendergast produces the most fantastic drawings.
Recently I came across a project by Salvatore Iaconesi whose The Cure website has open sourced all the clinical data from his brain tumour with the aim increasing his chances of survival and contributing data to the international research community. It’s a magnificent project that has already had an impact on debates around the role of the patient and data in cancer treatment. I very much see blood and bones as connected to this vision in terms of putting the patient in control of their data and enabling wider uses of it. There are divergences of approach, my project is less resolutely about open-source politics, I don’t think it will contribute to a cure, although it may contribute understanding to the ecologies of treatment that patients, diseases and medics are entangled in. I also feel blood and bones is a more traditional (if I can use that work) aesthetic project concerned with the collision of the bureaucratic and the personal, the material and the informational, in a way that draws upon conceptual traditions in the arts and wider digital culture.
The overall aim for Blood and Bones is develop a platform for the publication of data produced by my illness through time. A laying bare (see Viktor Shklovsky) of it’s devices, processes and their impacts on me as registered through a series of indexes that combine both medical and personal data.
A performance through time Blood and Bones is part personal diary and part art and research project (whose more detailed rationale is given below). I intend to track and share as much data as my body produces. If I’m going to have to be ill, I may as well do something interesting with it.
Beyond an ‘in the moment’ stream of data publishing, the work also seeks new formulations, and modes of expression for this material which will be visualised (indeed some of it already has), turned into drawings, paintings, and animations. At some point I want to connect some of this work to ideas around ecology, networks and debates around materiality. There are some interesting discussions to be had about the relationship of between the efflux of data enabled by my body and the material processes and environments underpin that production.
The data files and commentaries can be seen in the menus running across the top of the blog. This is the material that will be updated regularly.
The project has a basic hypothesis.
The patient does not merely produce data, they produce an individuated experience of pathology which can be captured in data.
The patient can bring speciality insights to this process, which in my case is cultural and communication knowledge. Or what used to be called Art.
Some questions that the project hopes to attend to:
If the patients body is producing data, how to use this process for both better personal understanding and wider cultural applications?
How to make this data public, how to do interesting things with it. What forms, modes and processes are appropriate?
How through this process ‘living with disease’ can be rethought as a process of engagement rather than something that ‘happens to you’?
How and when the patient operates as a collaborator with the medic, within and throughout treatment? Consequences, pros and cons.
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.