The sun has arrived. Its beams flood the kitchen, bringing the gleam of spring and coating the washing up left over from last night with a layer of charm. For the moment the room, that has become increasingly oppressive with work towering over me like a half played Jenga, yawns and stretches, reaching into spaces unseen and unthought of to wake imagination, and illuminate the potential of things.
This energising of the room brings me to reflect on the experience of being part of a drugs trial. Being part of a trial was initially something I was apprehensive of, but became an experience that I found empowering, and a stimulus to my own form of research in creating Diabetes: Year One. Soon into my diagnosis I was offered the opportunity to be a part of a trial – I had to move fast as the time from diagnosis to acceptance had to be quick. I said yes – partly intrigued, and partly wanting to do something pro-active in reaction to the passivity of diagnosis.
Once accepted my experience was unorthodox, I was moving across the country from Newcastle to Manchester, so I had to agree to periodic journeys back. They worked with me, so that some of the appointments could be done over the phone, but there were still days of traveling. My trial included regular injections, and periodic infusions – designed to prolong any residue insulin production with the idea that it might have long term health benefits, all tested through a meal tolerance test (drinking a sweet malty milkshake and seeing how my blood glucose fluctuated as a result through regular blood samples). I don’t know the results, and probably won’t, but for me that wasn’t the point. I ultimately choose to continue based on research that suggests that keeping blood sugar levels in range soon after diagnosis has benefits in itself. This could be for many reasons – behavioural, physiological etc; but for me the benefits were psychological and authoritative. By this I mean I was able to ask many, many questions to experts, which gave me confidence to ask more questions, to ask stupid questions, and through this to gain a better understanding of how my body works – to see the complexity of connections that could be involved in making decisions.
Being part of the trial for me was, I imagine, like being the car in a formula one team (I hope - full disclosure, I know nothing about cars!), that is, an essential and complicated part of the team, though not necessarily the one in control. My pages on the drugs trial move from the introspective, to the holistic – from dwelling on my own feelings [fig.1], to seeing myself as part of a wider community, and a part of society [fig.2 &3].
A journey that is reflected in the variations in layout, the juxtaposition of the realistic and the cartoon, and a move from sombre to expressive colours. The layout begins by expressing the puzzle of identity that the new diagnosis presents, then considers the nitty-gritty details of the trial, before exploding into the speculation and potential of medical research. Research, that though I don’t presume to be an expert in, I now feel I am an informed observer of, and so able to consider, engage with, and draw. The mix of realistic and cartoon, or surreal aspects reflects the way in which the imagination is stimulated by the process of the experience.
Whilst some drugs trial may be problematic and need research and discussion before making your choice to participate; medical research in many forms is available, and some are as simple as questionnaires and surveys. Without my participation I’m not sure I would’ve found the confidence to express my own experience, to have the presumption that my experience could be of use to others.