My boyfriend runs a bookshop out there in the high-definition public where you lot exist, but he also has one in the back room of our house where I am his only customer. I think sometimes he must plant perfect books in there for me, waiting patiently until I’m ready to see the right spine glowing on the shelf. But no, what actually happens is that he gets in from work and tells me to listen to this before reading the blurb on the back of whatever book he’s holding. I never remember the specifics because Long Covid has scorched my memory, and instead I like to imagine that every book I eventually discover in our house is a foil wrapped chocolate he has left for me in secret on a cartoon pillow.

Yea, I have to project meaning onto my life this way or else the disabled body I’m in will become high-definition too. I’m not very well at the moment. I am cancelling work and doing things that don’t tire me out. I am going to the bookshop in my house, for example. This week, I pulled out the lilac edge of The Hearing Test. The 2024 book by Eliza Barry Callahan is an auto-fictional account of the narrator’s experience of sudden deafness. Changing all the time, at first she describes a drone in her ears like sheet metal being rocked. She confuses the internal mechanics of her body for the sounds of her apartment, and later loses the deeper voices of men. It is a neat, bereft story like when she writes that ‘Silence is when someone says, Actually don’t come, and you tell them you’re already here, waiting downstairs.’ I read it over two slow afternoons, convinced I knew what she was talking about even though I don’t know deafness at all. But that’s the bridge good writing builds.

Horizontal on the couch with my chocolate, I thought I recognised myself in the book because the writer does that honest, desperate thing of admitting she doesn’t know what is happening to her body, or what it means. So, she takes deafness and she holds it up next to references in art, music, film and literature. Francisco de Goya is in there, SOPHIE, Rear Window, Roland Barthes. She measures herself against it all. And, like looking at paintings in museums and catching your own face dulled in the protective glass, refracted over somebody else’s painted smile, she begins to triangulate a new identity. I get that tactic. That’s what I do on this website. That’s how I work as a critic. That’s why I read her book in the first place, because being alive is absurd and I have to search for art that pinches absurdity on the cheeks like it’s just a little baby I have dominion over.

I think that’s what all art is for, probably, and I appreciated the sticker collection of cultural references in the book but what I really came here to point at are the numbers. The Hearing Test is a record of sickness over the course of one year, and in that record, Eliza Barry Callahan keeps score of lots of different things. She writes that her ‘time was marked by doses not days… Each dose of prednisone got a room of its own on the page in the little black notebook where I had previously noted things I was meant to do — the hours I was meant to arrive certain places. The people I was meant to see. But now, there was nothing I was meant to do other than these numbers.’ And I read that and I thought, yes, when I got sick, that’s what I did too. It’s what I was left thinking about after the book was back on the shelf.

I still have the note on my phone that I started out with. An advent calendar of symptoms across my first 36 days of Covid, beginning January 2nd 2021. That note begins with alarm bells on day one, followed by a fever on day two. I thought the bed sheets were moving. The world was quickly surreal. But whatever, Covid started like the news said it would with good coughs and then there was this back pain so delirious I made noises out loud to myself in my flat like an animal. On day nine, all the clocks were dripping again. I had another fever and kept pressing play on National Geographic documentaries but turning them off before the end. Everything was too Max Ernst. This screensaver of Mars in my periphery, I made notes about how I could only breathe in for two seconds at a time before the air stopped flat. There shouldn’t be flatness to air! I thought Earth was where the oxygen was.

Nobody asked to me to keep this play-by-play. I just had to keep count. Of temperatures, of breathing, of the amount of hours I slept. When I was coming up on a month of this shit — when the news had said it would only be two weeks — a friend told me to get a smart watch. The alarms were loud enough by then that other people could hear them, and I had the basic Garmin model on my wrist when I managed my first walk on day 32. I recorded a heart rate of 152 beats per minute standing still on the road outside my flat. That wasn’t good. I used to go to the gym a lot — incredible to think. There are sensors on the handles of the machines to monitor heart activity and I used to see how high I could get it to go, like a Tetris score. But this wasn’t activity. This was me leaning on a lamppost, clouds moving too fast like bed sheets, like — bed, maybe I should think about going back to bed.

Like Eliza did, I moved into a notebook. It’s open in front of me now, and it manages to contain a note that describes every single day of the first nine months of illness. I covered this thing in heart-shaped stickers and holographic ones and little 3D puppies in baskets that mean it doesn’t close flush anymore. You’re never supposed to use your best stickers but I still couldn’t breathe right. Towards the end of month two, I wrote ‘I am finally depressed.’ It is a very repetitive document from there on out. Fatigue, pain, nausea, and a heart that’s trapped on a stair master. By month seven, I was no longer leaving the house. I was keeping the dates and names of calls with doctors so that I had some kind of receipt. In the notebook, I write about bookshop-boyfriend making a restaurant just for me in the living room. He wrote down a menu and projected a CGI rainforest framed by an open window onto the living room wall. It was like he was showing me his best stickers.

In month eight, there’s one day where I just wrote ‘I am pushing through and being pushed back.’ For someone who used to go to the gym for fun because she had so much energy she needed her own elaborate hamster wheel, the most absurd thing about Long Covid has been leaning about post-exertional malaise. Sounds made-up. The post-viral body can feel worse after doing something instead of feeling better and stronger and faster and however that song goes? I just want to lose frame rates on my hamster wheel. Give me my wheel back. But the stickers I used in August were all of cats pestering a girl with short black hair like me. I’d had to cut my own very long hair very short because baths and showers taught me that post-exertional malaise was, in fact, so, so real.

The final month in the notebook is all numbers, all times. I woke up at midday, then at 3PM. I woke up at 5, and then it just gets later and later until it gets early, and the day trips upside down. I remember lying in bed and hearing the people on my road locking their front doors, bleeping cars open, and heading off to work. I remember waking up when my boyfriend got home from his. I woke up at 7, at 9, at then at 10 in the morning. I used to have to ask other people to call the GP for me, but now I was awake for the phone call competition. I stopped taking notes after that.

Long Covid reads like water torture in these diaries. Once the drip, drip, drip had become a whole river, my data was a dam made of matchsticks against it. I thought I just had to learn how to breathe underwater; and I thought metaphors that communicated my sickness were more use to me than numbers.

In The Hearing Test, Eliza Barry Callahan writes, ‘I began to feel that sensation one has on trains or in cars, that specific feeling of standing still while moving. I began to keep track of every little thing, as if it were something to solve.’ I was in the carriage with her until I realised I had done all this homework and the train wasn’t stopping. I lost faith in numbers and Garmin watches and general optimism. I learnt that Covid had fried my nervous system. I learnt it had given me orthostatic intolerance, meaning every time I am upright, my biology is in overdrive; my heart is in the gym. I know this stuff well by now but I find myself here at the beginning of year five having crashed in a big way that reminds me of those early days. I thought I could just about struggle through things. But in the past few weeks, I have been crashing in public. Caught short like a surprise overdraft text from the bank.

That’s why I am reading The Hearing Test lying low on the couch like I am trying to hide from a sniper; that’s why I am writing this text even lower in bed, holding in a piss as if the bathroom isn’t ten steps away. I am trying my best not to set off the new £75 heart monitor strapped to my left arm. In my desperation, I have started paying £15 every month to an app called Visible that takes a constant measure of my heart rate variability to try and help me pace. When I got it three weeks ago, it monitored my heart, sleep, and other symptoms for a few days before allocating me an energy budget. It has given me 7 Pace Points to use each day, the idea being that if I go over budget, my nervous system will continue to fry, to burn, to lengthen the Covid inside me. But if I stay within 7, I’ll enter a more gentle and healing state, the kind where ‘rest and recovery happens.’ You know, like it does when you’re asleep.

Eventually, I might feel stable enough to increase my points, do more, be a fairly average 30 year old but I doubt I’ll still be 30 if I ever get there because it currently costs me 1 entire Pace Point just to get dressed. I should never get dressed again. A bath is 1.3, a shower 0.4, but I burn shower points at a much faster rate. One afternoon, I walked to the pharmacy ten minutes away because taxis cost money, but when the armband recorded a 1.6 round trip, I realised I think money is worth more than my body. So, I do get a taxi to Tesco on a different day but I use 1.7 points getting things off the shelves and another 0.9 putting everything away once I’m home. Seven is always drawing near. Sometimes, seven is gone. When we do a big event for the book in Liverpool I end the day on 24 points and my bones feel bruised. After a trip to Newcastle for an award ceremony, I reach 19. I can often do more than seven point’s worth of movement but the thing is, I shouldn’t. Because whenever I do, I feel like I’m back in that first Max Ernst-fever-week of Covid. The app is making me realise I think work is worth more than my body. The app has led me to cancelling lots of upcoming work so that I can stop thinking it’s okay to feel this bad forever.

I am trying not to think about money. I am thinking only about the things that don’t cost me many points, like a kid going to a tuck-shop. As long as I am lying down, playing games online with my cousins is an incredible bargain at 0.1. When I read The Hearing Test, it cost me absolutely nothing. Free! I have to be grateful to the book that gave me a slower heart. Halfway through it, Barry Callahan writes ‘I had begun to understand my own life by misinterpreting things I was reading and experiencing with only half my attention. I found clarity in misinterpretation. And I thought that our misinterpretations are perhaps the most individual and specific things we have.’ This is my clarity: things might never change, and I might be a big sad fool for paying money to something that shouldn’t cost anything, and I am probably a clown for building a new dam out of matchsticks and something called ‘Pace Points,’ but I am so sick I have decided try.

I will lie down. I will do what the app tells me to. I will read books that make my heart go quiet, and I will probably draw meaning from them because it’s how I cope. But I think I have to heed the meaning in numbers too. To get HD, 4K, graphic and honest. I think books are good but I need to start reading my body every day as well.

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