Here’s a little illustration of a colourful routine… incidental aesthetics which you have more time to notice when you’re ‘un-busy’ recuperating. But they also make you feel stimulated and eager to get out into the world. I tried to capture it here. The ticking clock can be interpreted in any way: for me, significance in the tick of a clock varies.
You find yourself with endless time to observe when you’re resting for weeks or months… or years. I really noticed this accumulating over time as experiences of chemotherapy regimes, surgeries and long-term side-effects evolved. My first experience of bed-bound followed by semi-bed-bound time lasted for 18 months due to a large surgery and high-dose intensive chemotherapy…. so that was a strong starting point to build on this sensation, although not typical of the general perception of teenage and young-adult life. My first obsession which grew from this was probably flowers but there have been several. With that level of chemotherapy the fatigue was so intense and long-lasting that I would spend plenty of time where looking at flowers by my bed was the only pleasurable thing I did all day, especially as eating was so often impossible and I was unable to have any real physical contact, read, wash myself, watch a screen or sit up. While infuriating, in other ways these aspects of illness can also develop positive impacts. I have been reminded of this in every period of illness and after my most recent operation I became more interested in colour and photography. For many people, but perhaps especially a young person with a chronic illness, this could really influence your life and career choices.
For me it really gave me the drive to pursue writing and other things such as playing the piano therapeutically and experimenting with photography, film and gardening. I love to imagine I would have done these things anyway, but having become ill at 18, it isn’t possible to judge the impact these processes had on my perception and priorities as an adult. They were there with everything else in the shift from adolescence. I wouldn’t ever choose this path, but I can’t imagine my life any differently now. It’s not realistic or appropriate to say chronic and life-threatening illnesses are a gift: I have seen their worst effects on others and on my own life. But I do feel it has paradoxically created various sorts of freedom, growing amongst the many different physical and personal freedoms it takes away. I found that even at the worst times; when facing the prospect of no known cure and experimental life-threatening treatment, this in strange ways created a feeling of the pain and the antidote at the same time.
For example: while I was devastated by the realisation of fear caused by the sudden prospect of leaving my family, friends and the beautiful world behind, I experienced freedom in the overwhelming sensation that love and time with those I love, is the only thing which matters to me. This is a strange paradox of sadness and joy. The second great freedom came in the fear of losing consciousness forever. This created a powerful awareness of my own consciousness and how astonishing it is to experience it, for every second that I do. I felt an electrifying excitement in being conscious, feeling it’s inconceivably astonishing that consciousness evolved, that I’m so lucky to have it and could appreciate it in so many ways in all the time I might have in life. I began to form the idea that we exist like tiny scraps of the universe which have come together over milennia and now we are the universe looking back in on itself, which was quite an amazing feeling. We are not only ‘human’ but also parts of the universe itself – like planets and particles and electrons. At times on some deeper level, this made pain, sadness and fear more intelligible, as everything in nature and in the universe is riven with disorder and brutality; but at times even this was made irrelevant by emotion good and bad. For example when my greatest ‘cancer-buddy’ died, in the most extreme moments of physical pain, or in stark contrast when I met my boyfriend for the first time.
Perhaps you know the feeling… it can happen any day: if you have a peaceful moment, resting after a virus watching leaves turn outside an open window or drinking tea on a Sunday morning after a night out. I remember sitting on the roof outside my friend Katy’s room in the rain one Sunday morning, a bit hungover and tired, and even the rain-drops hitting our heads seemed pretty.
So in summary: I do recommend sitting in the rain, with or without clothes or even underwear (avoid being arrested if possible). I also suggest looking up at the colours of the leaves and the sky whenever you’re walking around and struck with stress or pain. It doesn’t always make it go away, but the images often leave a pleasing imprint in your mind. And if you are by any chance interested… the nail varnish used in this clip was Bourjois Fuschia Hype
Thanks for reading!