Art by Martin J. Sabine
By Zaar Riisberg
This piece grew out of an effort to try and write down what living with visceral pain is like. I am part of an art project that tries to shed light on chronic pain. Two of the participants have dealt with inflammatory pain, but do not know how the other side lives. So this is dedicated to Daniela Zolezzi and Lasse Fischer.
The Uninvited Guest
I suffer from osteoarthritis spreading to all my joints from a trauma. Living with chronic, visceral pain is like living with someone you really don’t like. I know rheumatic pain, this is way worse. You don’t know when, you don’t know how much or for how long and you know there’s no respite. With inflammatory pain, I knew it would stop if I just got to the apothecary - or I knew that in the end I’d just pass out from exhaustion. Osteo doesn’t make you pass out, it makes sure you can’t sleep instead. It’s grinding, it’s violent….it feels like getting stabbed or cut.
Art by Martin J. Sabine
The pain surges in the feet are as weird as they are violent. It feels as if someone pressures downward with a scalpel and at the same time there’s a sensation as if the bone is being bent. I’ve noticed that my brain forgets the exact way pain plays out, so I’m writing this as it happens. This is neural, I guess - and probably a good thing. I heard the same sentiment from my friend Anette. She knows she’s been crying, she knows it was horrible, she knows she dragged herself into the city and back. But can never recall exactly how it was painful - neither can I. Focusing on the hell that it is or trying to understand it doesn’t help, it makes it worse as it amplifies the pain you’re trying to ignore. Visceral is most likely the best word to describe the feeling, because….vicious, violent, vile.
Absence of Beauty
I am part of an art project called The Pain Catalog, and my contributions are quite frankly void of any beauty or real aesthetic. But that is osteoarthritis. That is why some parts of the project don't make sense to me. Like when pain strikes for a longer time, my fists clench and the knuckles go bone white. Or I rub my hands together. So colored, gradual pain charts are a mystery to me. There’s no upside to it, it’s just ugly. I toned my works down as the reality of it is absolute horror. This would break even Cthulhu. There’s no bright side and you end up more and more alone, because people cannot relate, not even others living with chronic pain. No respite and it being bone gnawing, just leaves you estranged to almost everyone in a certain way, even my mom, even my best friends. I see they care, but they don’t know. They can’t know and I’m glad they don’t. A significant other becomes a distant idea - because, how do you invite someone into this hellish realm that I live in? And at the end of the day, there are no guarantees, so you might invite more problems in.
Fallen on Deaf Ears
But something is bothering me about the perception of osteoarthritis - or should I say the myths - and I wish the medical profession would listen. One thing is, that it’s not always about how many degrees we’re having. I had two months during the winter that were pretty good and in comparison my 2023 was a living hell during spring and summer. It’s about humidity, pressure (weather wise), temperature fluctuations and osteoarthritis doesn’t give a flying fuck if it is summer or winter. The pressure thing isn’t a surprise to me - I mean, if you have a sprained ankle you don’t want to go on an airplane (unless you’re a masochist).
Pre Op. // Photo: Zaar Riisberg
But generally, I feel the medical profession has abandoned us with a ‘too bad’. My doctor even admits that there is a lot about osteoarthritis pain they don’t understand. Calling it ‘the mildest form of arthritis we have’ fills me with anger. It’s a clueless, ignorant statement that just really acknowledges that we might as well be lepers. It seems fertility and other areas are more interesting to the medical profession. And you can see why, I mean, 8 billion people clearly isn't enough. Am I generalizing? Indeed. What else would you have me do? The government in Denmark proposed packages for the chronically ill - guess which disease wasn’t included?
I saw some colors at the train station, but struggled with the phone. Very bad day. Fingers fucked, feet fucked, everything fucked. As I looked at the tilted mess, I realised that the visual representation echoed how my point of view of the world felt: skewed, tilted, out of focus - yet, strangely mesmerizing. Photo: Zaar Riisberg
Collagen, CBD, Doodedoooooo
Lastly, osteoarthritis in severe cases like mine doesn’t let up. I am always in pain and discomfort one way or the other - abstraction is the only real medicine there is. Well, morphine helps me, so does hard alcohol. But if I go down that road, I might as well make arrangements for an early grave. It pisses me off to a great extent that if the usual painkillers don’t work, all a medical professional will say is ‘exercise’. If the weather/climate decides to fuck over my knee and give me swaths of pain surges in the feet - then nature WILL do that regardless of how many hours I spend in the gym, on a bike or indeed walking. At the moment I am at my mother’s place. I have been here for a week, and basically can’t return to my flat, because pain shoots through my right knee when I walk or put just a little pressure on it. And just for the record, I do excercise. But in my case, all that helps is hardcore crossfit - and the two first hours of a day feels like my body is broken. I only feel somewhat well after a really hard workout.
CBD does help as it unstresses you somewhat and gives you maybe a little more sleep during the night. Collagen might be working, but due to the volume of stuff I am fighting, I really can’t tell, I am just guessing. I’ve accepted that we are the modern lepers, at least we are not sent to a remote island, and my skin is great. So there is that.
20+ below? Fuck my feet. 4-5 km in frost and thick snow. But how else would I get these shots? Photo: Zaar Riisberg
The arrogance the medical profession has toward osteoarthritis is stunning and is based on ignorance and incompetence. I would be willing and have been to let them cut me up, prod me, test me etc. Instead, I’m fed placebo bullshit, myths, lines - I mean, I’m not the one inhaling the copium here - the doctors are.
I gathered all my chips and put them all on crossfit. It works, but it’s becoming clear to me that I have to do hard workouts every day and the first few hours of my day I feel like a 90 year old. I have days where I really don’t feel well unless I’m doing something active. Most days, really.
The article was written over the space of a year osteoarthritis is just a wild ride when you choose to fight it. I spent momths at my moms house hitting her garden and the gym, garnered with long bike rides. I am finally achieving getting some of my life back. But the pain and the weather will always be there - climate change might mean a lot to you. Guess how I feel about the topic?
People have to pick their weapon of choice when combatting chronic illness and pain. Mine -evidently- is defiance.
Onwards, Upwards // Photo: Zaar Riisberg