12 days ago, I tested positive for Covid having avoided it for two years, and with it came a bad flare up of my Ulcerative Colitis. I finally have a negative test, meaning I’ve been able to take a short walk to the beach to dip my feet in the sea and generally be in the presence of other people, having spent a miserable 12 days alone in my flat. I’m going to talk about my experience for a bit here, before moving on to some of the work/research I’ve been able to do.
The fact that my body chose to viscerally remind me about the very thing my residency is focused on isn’t lost on me- my colitis can stay in remission for anything up to 2 years, and I just knew that having Covid would bring it back out.
For people with pre-existing conditions, such as immune disorders, the pandemic has added this extra layer of fear. I spent most of 2020/21 shielding, and trying to explain to those around me without health worries that yes, I do need to be this strict about mixing with others and having to choose between my mental health and my physical health. It’s hard not to feel angry that once things did start to open up again, the things that made me feel safer emerging back into the world have been completely removed- masks are no longer compulsory, tests aren’t free, people are gently ‘advised’ to isolate for only a few days if they have Covid and PCR tests are unavailable.
I’ve made it out the other side of Covid, but my colitis is still in a delicate balance of ‘could get better/could get a lot worse’. For those not in the know, regular flares of colitis aren’t just something to get over. Inflammation in the gut causes the growth of polyps, which if left unchecked can develop into cancer cells. Last January I had a few polyps cut out of me during a colonoscopy, and I was booked in for another one in a couple years’ time, which I was told might be cancelled.
In short: I need to not be having more flares as it can be a long wait before I can get checked out.
‘What if I get Covid again?’ is now a very real fear. Aside from meaning I cannot work and therefore not earn any money, I now know the impact it can have on my long term health. And yet, for most people, Covid is over. It’s ‘just a cold’, as a random man told me on the street a few weeks ago when I wore a mask in a shop. Thanks Dr Man On The Street.
My friend James wrote a really great blog about the future of Covid you can read here.
‘The Kate Show’ is my amusing term (but probably just to me) for when I have spent too long by myself and I don’t want to do anymore self-reflection. Lockdowns and Covid isolation aside, one side effect of regular periods of illness is being alone a lot, forced to reckon with your own psyche whilst in pain and feeling wretched.
I’ve said that as part of this residency I want to focus on the collaborative/community aspects of invisible illness. How do we do this? Sharing our individual experiences has to be a part of it, but where next? I’ve been reminded during my recent flare & Covid infection how isolating illness can be. You feel like no one can relate to you, and that your personality and conversational skills are replaced entirely with illness stuff. Friends and family may check in, but on the whole, you are alone and frankly, people either don’t know what to say, will give unsolicited health advice or they just say ‘get well soon’ and leave you to it. (This blog here has some things you can say instead of ‘get well soon’ to a chronically ill person, and describes quite well some reasons why its best avoided as a phrase.)
I’m still working on the kind of questions to include in a survey about invisible illnesses, but as soon as its ready, I’ll link it here, and I’m hoping this could open up some dialogue beyond my own experiences.
Speaking of other experiences, thanks to Sharon and Laurence at the Digital Humanities Lab, I’ve been advised of other artists exploring the themes I’m looking at. I loved ‘Structures of Care’ by RA Walden- a video installation of delicate structures, slowly brought down by small fires.
“[Structures of Care] speaks to precarity, devotion and care in a time of isolation and uncertainty. Sick and disabled bodies, already living under the strains of late stage capitalism and an inability to adhere to expectations of labour, productivity and worth, are once again shown to be dispensable in the eyes of normative culture during a global pandemic. How can we care for each other in these times? How can we foster much-needed tenderness and meaningful support within our communities? These caring structures that we make, although fragile and built on flimsy foundations without structural support, are nonetheless vital.”
RA Walden was also involved in Vital Capacities’ ‘PRESENTS 2020’: an ‘online screening of short video works that [don’t] require an abled or physically present body in order to be performative.’
It was good to be reminded of ‘PRESENTS’ and see the work that was presented. I actually began applying to take part myself, but ironically was too unwell to finish my application. Ways to perform without being ‘present’ is an ongoing interest for me, and I’d recommend looking at some of the work presented here. Also I enjoyed the term ‘Meat cave’ which is much funnier than ‘corps’ or ‘somatic’.
I’ve also been looking at the work of Hayv Kahraman in her current exhibition ‘Gut Feelings’ at the Mosaic Rooms, London.
Through her paintings, ‘the gut acts as a formal and material trope to investigate ideas of trauma and renewal.’ I’ve long since known that stress is a major trigger of my colitis, and the idea of the gut as a physical place where feelings and emotions are processed creates a fascinating visual. Are our guts actually what we think our brains are?
Emotions, experiences- especially traumatic ones- are squishy, slippery, tangled and messy. Like guts.
Speaking of squishy stuff, I’ve started getting back into teaching myself to use 3D modelling program Blender, which is great for creating fleshy, gooey shapes.
I’ve spent a lot of the last 10 days playing computer games (I couldn’t focus easily on reading, films or TV) and I had a strange memory resurface of thinking I was playing a level on Earthworm Jim (1994, Sega Mega Drive) called ‘Intestinal Distress’ whilst high on drugs during my last colonoscopy. Strange how these things come back to you. If you’ve never had a colonoscopy, I would like you to know that it is nothing like this. I would love to know who designed this level though (and the music!).
In a few weeks I have a meeting with the Head of Anatomy at Brighton Medical School, who presented an event at last years’ Fringe festival called ‘Inside Your Intestines’ and I’m looking forward to speaking with her about this project and learning about the more medical side of digestion.
That’s all for this week. Thanks for reading.
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