deteriorating, i wonder why!

hello people of the world, but mostly the Labour government. it’s been a busy few months of the poor artists book tour, running on a hamster wheel, seeing everyone, going everywhere and then – getting sick because I did too much and Long Covid doesn’t like it when you too much of anything. i thought I’d catch you up on our goings-on via some film photos I got back recently from Take It Easy Lab so that we might all reflect on my gradual decline.

last Novemer I got on a train to Dundee to talk books at Generator Projects with curator Laura McSorley who wore a fantastic hat – the first picture on the roll, look at that film blur sparing me a hat-less comparison. Dundee was great. I remember thinking it feels like Liverpool but Liverpool if you could actually get your arms around it.

a few days later, I got a train to London where I spotted our little funny book in Tate Modern on - and you’ll just have to believe me here - a plinth painted pink to match the cover. Oh and you’ll have to believe this next bit too. The writing with the book said ‘it is THE story of art of 2024,’ so there you have it. We won the art book battle royale. We ate all the other books.

I’d come down to London to give a lecture at Central Saint Martins. the visit produced this incredible picture. when people say old stomping ground, we really came and stomped i guess. Also love flash film photography taken at night. Like, I love it to the extent that I should never take pictures in the day. I only want my friends appearing like foxes out of the dark.

and then no pictures for a bit. The year was running out. I was feeling happy about my niche literary success, but not so happy about my financial situation. Over december, I published a text on this website detailing my earnings for the past few years. I then found a part-time job. I felt pretty manic about finding new ways to make money so I also applied for a PhD, got an interview, did the interview on like january 4th or something evil like that, got offered the PhD, and have since applied for funding to do it. In between the money-fuelled desperation, I got a new camera for Christmas. It’s a Kodak ektar 35n or something like that? it’s pink. this one is a half-frame, meaning it takes portrait pictures and that way you can fit twice as many on a normal 35mm roll of film. ECONOMICAL.

In the new year, I met Zarina back in ldn and took this with it:

We went to London Art Fair to continue book-touring. portrait, portrait.

I love this picture of us. Importantly, I am wearing the mads mikkelsen lookalike competition at my house tonight 50 euro cash prize t-shirt that my boyfriend got me for Christmas. But what you can’t tell from this picture is that I felt so sick I was ready to lie down on the floor of the terrible art fair where a booth costs ten grand to rent and rich people dribble on each other, and I would have let the rich people dribble on me, and walk all over me and – urgh. I had to catch an early train home the same day because my insides were on fire, cutting short a week long writing stint ZM & I were about to embark on together. My time with Long Covid has been bad, and then doable, and then bad again, and doable in a way where I just really internalise the struggle so I can get on with it. but this was the start of a really bad stint and I didn’t quite know it yet.

nice bonus picture though. while we were at the fair, we bumped into Philip Williams who we know from those stomping days and he looks so happy in this pic I took.

I like the way these film photos have come out on the ektar but I will say I am only showing you the ones that had the flash on because the rest are binnable unfortunately. The camera is not that powerful. important info if you’re in the market for a camera that gives you 72 pictures. 72! incredible.

after london, I flew solo to Cork airport to do a talk at Sirius Arts Centre in Cobh. This is Cobh and I took a picture because of the windowless window, and I remember spending a second to line up the lampost so that it disappeared between the different coloured facades. can’t believe I’m a photographer

I was there to chat to Miguel Amado who had actually invited us over to do a residency in Sirius back in 2023. the two of us stayed in the basement and wrote the first half of the book. It was basically the only time we were able to be in the same place to write, so I’ll be forever grateful. Here’s Miguel and then here’s a bad picture of us in convo together so that, if you buy this camera, you remember to put the flash on!! this was in the brightest room imaginable so idk what to say. the camera is a little wimp or I don’t know how to use it, you decide.

I was okay for the talk – I actually enjoyed it so much. Because the event was on Feb 1st, a staff member gave me a St Brigid’s cross which is now hanging above my computer to protect me or just to simply remind me of the nice people I meet through art. But after the talk, I then spent about 24 hours in bed. I was still in Ireland and I had to cancel a dinner with curators, publishers and writers because the Long Covid had come for me. I got an orthostatic headache that meant I couldn’t sit up without crazy pain in my dry brain, and I found myself in that difficult situation without anyone I could ask for help from – or, I should say, not wanting to inconvenience the people I did know who were off work because the gallery is closed on sundays, because maybe I didn’t know them well enough? They’ll tell me off if they read this, because everyone there is so nice and we would be friends if I lived there for real. But I do not know my own access needs yet, and it just was a pretty sad second day.

The plane home was rough because of it. I was supposed to travel back to Ireland a few days later for a second event further north but I had to cancel it. To Highlanes' credit, the gallery allowed me to keep the speaker fee I was going to lose. I really appreciate them for that. I felt, and still feel, guilty.

I did my PIP assessment. A few weeks passed, a lot of time spent in bed. I got told I had been awarded PIP and that my award was £28.70 per week. Interesting use of the word award, I think. I also had one of my regular Long Covid clinic appointments at this point. while the doctor was speaking I decided to cancel a bunch more work because I had finally realised how bad things had gotten (I’m saying this like I’m not at the beginning of YEAR FIVE). But I decided not to cancel a trip to Leicester to speak at Platform, an events programme at Phoenix. I kept it on the calendar because I was staying at a friends house before and after, with a kind, unlimited invite that meant if I crashed badly, no one was going to push me on a plane and get me gone.

I like that in every picture I just look politely glad to be outside, because that’s the truth of the matter. During a talk we gave about The White Pube’s history, our book, RSS feeds, transparency, and I can’t remember what else, I mentioned how hard it had become for me to continue working as a freelance writer. I said to the room that I was having to stay an extra day to rest so that I could mitigate the crash I’d have after the event, but that Zarina was travelling back the same night and going to work tomorrow. I got an email THAT NIGHT from the organisers to say they were going to pay me and extra day rate to cover the day I was staying to rest after the talk. I read it, felt my body un-tense, slept until midday the next day, stayed on the couch until dark, slept another long, long sleep. No rush. Paid to rest, paid not get sicker. Really just feeling valued. this was the money it took for me to be there, disability and all. If I had been awarded a higher rate of PIP, I could take a day every week to feel that good.

My health is now abysmal. Post-exertional malaise is burning through me after a few months of pushing through for the sake of work, and I’ve written about it a tonne on this website but I just wanted to mark it here too in a blog in a clearer voice: being disabled is so expensive, and I’m cancelling so much work so I don’t get sicker, so that I recuperate even just a little bit, or level out, stabilise. The Labour government is panicking because over the past four years, the rate of disability claimants has risen astronomically. Has everyone forgotten THE COVID-19 PANDEMIC? Gosh, I wonder why there are so many of us who cannot work more without getting increasingly sicker.

I mean, we wrote about this in the book too. I say it all the time. It’s like, when I have a moment of good energy I’m not even using it for fun, I’m only using it to earn more money to live. And then the balance tips, and I end up here again, losing independence, relying on everyone else for everything, and – god, my PIP is currently going through mandatory recosideration and I just feel empty about it. If it stays at £28 a week, what am I going to do? We have tried for years to get a solid percentage of our readers to sign up to Patreon but c’mon, we’re about to hit 10 years and it’s still not nearly a living at about £600 each. Like many sick people, I have come to rely on my art – of writing – as the only accessible way for me to make money but if it doesn’t pay up then I’m stuck. Bawled over by the extra day of pay from Platform, and the sick pay from Highlanes, when we should all just be supported in a real way so that we don’t feel like we’re falling and these are some very short ropes.

I’ll leave it at that because I need to do some part-time job stuff while I have the energy to be upright at my computer. But god, what a life. Glad I didn’t vote for these dickheads. Here’s hoping our book earns out.