I don’t think the flesh is necessarily treacherous, evil, bad. It is cantankerous, and it is independent. The idea of independence is the key… I think to myself: ‘That’s what it is: the independence of the body, relative to the mind, and the difficulty of the mind accepting what that revolution might entail’(David Cronenberg, in Jones, 2021, p. 73)
Since my Multiple Sclerosis diagnosis, I have felt like my body – my external casing – has become progressively alien to me. I don’t recognise it. It’s not the body I lived in for the last few decades. It’s different. Everything about it has changed. I’ve lost over a stone in weight, I can’t feel my left boob, my toes feel like they have elastic bands pinging inside them every time I get out of bed in the morning. I feel like I’m being invaded by an invisible, external force, only I’m being invaded, slowly, from the inside.
I’ve been drawn to literature about plants invading human civilisation recently. The Day of the Triffids by John Wyndham, The Genocides by Thomas M. Disch, The Voice in the Night by William Hope Hodgson, Paradise Rot by Jenny Hval. Plant horror, inspired by early literature of the genre influenced by Charles Darwin’s work on carnivorous plants – Insectivorious Plants (1875) and The Power of Movement in Plants (1877) – which detailed the ways in which they seemed to become sentient, utilising their environment to their advantage to catch their prey. These stories ultimately generated fear through the concept of devolution or degeneration (Butcher, 2019, p. 8); the loss of agency, the erosion of the self, and the transference of power or control. Science fiction that resonates with the immune system’s degeneration of the spinal cord, the demyelination of the brain.
It’s easy to forget that humans, in all of our technological prowess, are assembled from cells, too. When we sicken, we are alarmed, disgusted. How could this be? It’s almost as if we consider ourselves to be extensions of our technology. Maintain, repair, replace. Heart transplants aren’t so different from battery replacements. We can fool ourselves, to an extent. But MS, like the kudzu plant, affects every part of the body. It ravages the nervous system, our very own perennial vine, smothering and blocking signals, snapping tendrils as it spreads. You can’t uproot it and replace the soil. It’ll just keep coming back.
I go through periods of being okay with having MS. I’m determined to do everything I want to do, accept that I must adapt to a new (slower) way of life, and am grateful to receive treatment which will (hopefully) slow down the acceleration of disability. But all of it – all the positivity – takes so much energy. It’s relentless. It’s difficult to always look on the bright side, keep going, even though you can feel the vines tightening around your brain and your spine, crawling up and down and all around.
I’m struggling at the moment. I look fine. But my hand has developed a tremor – mild, and intermittent, but significant enough that I notice it when I type. I’m struggling to process information. I can’t sustain a conversation for longer than forty-five minutes without feeling suddenly, overwhelmingly exhausted. It’s frustrating. It’s frustrating to know that even in the absence of relapses, the disease is still active. It’s still doing damage, there’s nothing you can do about it, and life goes on whether you’re ready for it or not. You can’t see it, you can’t touch it. You can’t cut it away, scrub it clean. But you can hear it, shouting from different parts of the body, different voices all at once, overlapping, competing.
Our pain is inexpressible. Having no straightforward linguistic object, it lies beyond the limits of language, articulable only through imprecise similes (it is like burning, it is like torture, it is like death, it is worse than death), or else non-verbally (we scream, we howl, we cry). In our pain, we are uniquely alone and vulnerable.(Jones, 2021, p. 77)
Living with MS means accepting that there will be periods of time during which you find it hard to see the positives, but they are there, underneath all of the undergrowth. We just have to do a bit of digging, a bit of weeding, and accept that the weeds will return. MS requires constant mental and physical maintenance. Some days are easier than others.
Butcher, D (ed), 2019. Evil Roots: Killer Tales of the Botanical Gothic. London: The British Library.
Jones, D., 2021. Horror: A Very Short Introduction. Oxford: Oxford University Press.
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