There is a photograph of me aged 2½ holding my newborn baby sister. I am apparently delighted, and smiling for the camera. What you cannot see is me weeing on that sofa. Oh yes! A small, silent act of defiance in the face of the arrival of this tiny impostor who has turned my world upside down.
There is a trend, in some circles, for choosing, at the start of a new year, a word to shape you and your year, to carry with you, and be encouraged or challenged by. It is the kind of thing I instinctively rebel against: afraid of being limited, rather than liberated by one word; afraid also, I suspect, that, based on past experiences, any hopes, dreams or vision I may have for my life are likely to be derailed and disappointed. Looking ahead is too uncertain. Life works best when I live in the now and try to make today the best it can possibly be. However, for the last few weeks a phrase has stuck with me: small acts of defiance.
For all of my adult life I have been limited by a severe neuroimmune illness (ME – Myalgic Encephalomyelitis). There is no fighting, in any conventional sense of the word, an illness whose defining feature – and this is now backed up by research – is that it is made worse by exertion and activity. Following advice to ‘fight it’ (ignore symptoms, keep active, and push through the pain) for the first 4½ years resulted in me becoming housebound, practically bedridden, and a wheelchair-user, and is almost certainly the reason why, 34 years on, I am still severely affected.
The popular narrative of heroic and inspiring sick and disabled people defying the odds and undertaking amazing feats despite their serious illness is problematic. This is the acceptable face of chronic illness: the sick/disabled person as hero/inspiration. These are the sufferers of chronic illness we see on social media, in our newspapers, and on our TV screens: running marathons, travelling the world, starting charities or campaigns, writing books, changing the world from their beds. Where does that leave those of us for whom the most heroic thing we may do today is to make ourselves lunch, or even just, somehow, survive the day? It is easy to feel inadequate and useless – as if I cannot even do this being ill thing properly.
I have started seeing basic everyday tasks as ‘small acts of defiance’ when they are done in the face of an illness that makes every one of them feel like climbing Everest. If today’s ‘activity’ consists only of getting dressed and eating three meals I make sure I eat food I enjoy, and wear nice clothes. (I don’t care if nobody else can see, I feel a lot better about myself and my life if I am wearing a dress rather than pyjamas. I love wearing dresses. I will defiantly wear them in bed and lying on the sofa and people can think what they like.) On the worst days thinking up small ways of making the day feel better feels like a victory. Suddenly I have choices in a situation where it seemed I had none.
Finding different ways of doing things I love and which I’m in danger of losing also feels like defiance. A fruit tart that has taken me a fortnight to make feels like a far greater achievement than when I could do one in a couple of days. And continuing to go to church even though it usually involves using a wheelchair and lying on a ‘bed’ at the back is a regular act of defiance.
At the start of December I lost, pretty much overnight, any capacity for reading, watching TV, using screens or tolerating light. After a week of living in the dark I had a meltdown about the hideousness, unfairness and scariness of it all, but once clergy, my GP, and friends had joined forces and scraped me off the floor I defiantly set about thinking of as many things as possible that I could do lying down with my eyes shut.
Finding myself composing blog posts in my head and dictating them into my iPad was unexpected. Starting (with help) an actual blog last week, at a time when my screen and reading capacity are still extremely limited, even more so. A great big huge act of defiance.
Small acts of defiance can lead us to surprising and unexpected places. (Don’t wee on the sofa though. That just makes you wet and smelly!)