After the last couple of weeks of getting into some really nitty gritty, in depth academic, sciencey, political stuff, I’m really excited to get to write this post about something creative. I deeply value—and have a lot of pride in—my science background, my experience in parsing out and communicating complex things, but this project is about the creative responses we have to our experiences and about the art that we make out of it, so I feel like I need to demonstrate to you all that I can do that, too.
This task was originally something that I devised as something to grease the creative wheels in our minds, and get us (the Get Well Circus crew) thinking creatively and abstractly about our experiences with pain. To create something that we might later use in the (physical) creative process, to turn into movement research tasks, or lighting or set designs.
Honestly, it was in part me feeling like I was “supposed” to be setting tasks for the others as “the dramaturg”; feeling like I needed to prove (to the others? to myself? to the universe?) that I could contribute something to this project beyond my medical horror stories, and without being a performer in this project.
I set this task, describing it as a “pain palette”; I wanted all of us to find ways to describe or relate our experiences in a pain flare up in terms other than the adjectives used to describe pain. A colour, a texture, a song or a sound, an emotion. Like a look-book for chronic illness. A pinterest board of pain.
Pain, but make it aesthetic.
This was in part borne out of, as I say, insecurity; imposter syndrome and a need to ~fake it til I make it~ as a circus creative-but-not-performer, and in part because I knew there were responses to these impetuses in my brain, waiting to get out, but I needed an external motivation to access them. I knew that half the time when I responded to a question of “how do you feel?”, “how is your pain today?” or “what does it feel like?” that I was saying the same words, time and time again to describe an unending multitude of experiences and as someone who puts such a high value on accurate communication, it hurt and frustrated me to have such a limited vocabulary for such a wide variety of experiences, which take up such a lot of my life.
I think there’s a bunch of reasons why I (and I’m guessing many others) have been conditioned not to speak more honestly or accurately about pain. For one thing, I started habitually referring to my pelvic pain as “cramps” even though I was raised in a household that called it “period pain” because I quickly learnt that you get less “oh my god why would you say that to me out loud here in this place on this day” responses and awkward looks if I referred to my experience as “cramps” because god forbid someone who menstruates ever acknowledges this fact. It also felt inaccurate to call it period pain, when it started to extend up to a week or two before my period, and then last for another week after I’d stopped bleeding, and eventually flare up at any time, irrespective of where I was in my menstrual cycle.
So I would say cramps, because it was the politest way to communicate my experience, whilst minimising it so as not to bother others, because we all know that that’s the most important thing; everyone else’s comfort about how you discuss your own pain experiences (!)
And that’s another large part of why I think we’re conditioned not to talk about or interrogate or even really acknowledge and understand our experiences as chronic pain patients. We’re taught that we shouldn’t focus on it, that we’re making it up, that it’s all in our heads, that if we “dwell” on it, it will make it worse, and then it’s our own fault that we’re in pain. You’ve got to be a good pain patient, and not acknowledge it in any way, and not “let” it impact your life or your compulsory productivity.
Another factor is that it often feels utterly futile to try to explain chronic pain to someone who hasn’t experienced chronic pain. Even if they’ve experienced considerable acute pain; it’s just not the same thing when it’s temporary. I’ve had to acknowledge that no matter how compassionate or empathetic I was before my pain got bad, I would not have been able to comprehend what it is like to live with chronic pain. Even comparing earlier days endo-affected Evie, to more progressive endo-symptoms Evie, I concede I couldn’t have actually understood it until I was there. The Evie who experienced up to 2-3 weeks of progressively worse “period pain” which amplified and then died down parabolically didn’t have the tools to properly conceptualise the several-month-long flare up of erratic pain levels experience that came a few years later.
And that’s in no small part because of compulsory and default ableism. Assuming, as an able bodied, biotypical person that everyone’s experiences are at least approximately like your own, and not too large a deviation from your own experiencing, or the cognitive dissonance; the 404 error when you try to conceptualise something far from your own experiences.
So this task acknowledges that sometimes you can’t just use plain language to describe your pain to someone biotypical. Instead of trying to describe it, and quantify it in terms that are only really relatable for someone else with that experience, it’s about trying to give substance to the things that aren’t just “on a scale of one to ten”; the sensations that aren’t stabbing, burning, aching, radiating, sharp, dull, pulsing.
It’s about finding ways to communicate, both amongst ourselves as pain patients, but also to people who don’t experience chronic pain. Those things that are hard to pin down, like when you have days where the pain actually isn’t that bad, yet it’s too much to cope with. Or the days where you’re not actually in pain, but your body feels h e a v y or somehow physically anxious so I set this task for us to find non-numerical values for how to describe the pain we experience. The texture, colours, sounds and sensations; the landscapes of pain.
I can’t explain to people who haven’t experienced those types of pain, or lasting pain, what that feels like, but maybe I can explain how it affects me, or give a comparison to a sensation or experience that biotypical people can access or conceptualise.
The rules of being a sick person, are you have to pretend to not be sick and you have to aspire to not be sick so we’re discouraged from talking about our experiences, both because they’re seen as depressing and not polite conversation, but also because it’s seen as self indulgent to “dwell” on our experiences; while someone putting the same amount of introspection into a different internal experience would be applauded for their work.
We’re constantly getting these messages that we shouldn’t be talking about it, but actually, I’ve found it’s really rewarding and cathartic to talk about it, to get it out of my head, off my chest, out of my body and onto a page, into words or images.
So the following is a few pages from my pain palette journal.
CW: I went into this task expecting it to be upsetting at least some of the time to focus on the pain like this. I have found that it couldn't be further from the truth for me. That said, I imagine it could be upsetting to see my words and images for some, if you’re not in the right mindset for this sort of discussion. So please be mindful of that if you are a fellow chronic pain patient. I’d also like to encourage anyone interested to try whatever variation of this task seems potentially helpful or cathartic for you, but again, I’d like for everyone to be mindful of this task if there’s a risk it could impact your mental health negatively.
If you do find some catharsis in this, and you’re comfortable with doing so, I’d love to see what others come up with from this impetus.
Image description: A photo from a notebook with a drawing and writing in black artliner ink, with some sections coloured in with crayons. The text reads: Today my abdomen feels like the remnants of a cake left out on the lawn after a party. At the same time, dessicated, crumbling, empty but also waterlogged, heavy. [There is a scribbled sketch of the leftovers of a cake on a cake tier, white cake with pink icing and a blue puddle of water. Its sitting on top of green grass, and there is another piece of cake sitting on the grass next to the cake tier].
Image description: A photo from a notebook with a drawing and writing in black artliner ink. The image is of a person’s abdomen/trunk; from ribcage to mid thigh; there are lots of abstract shapes drawn floating in the abdomen, representing different types of rocks.
The text reads:
Sometimes I have rocks in my abdomen.
a handful of gravel
a sheet of slate
some smooth pebbles
Hard
Rough
Sharp
pressing into my tissues leaving bruises.
Rubbing my fascia raw
Dull. Sharp edges. Slicing. Cutting
Image description: A photo from a notebook with a drawing and writing in black artliner ink. The image is of a person’s abdomen/trunk; from waist to thigh with a bubble/blister drawn in the middle left section of the abdomen, and another blister drawn separate to the abdomen with the space around it coloured in dark and text above it that says “deep inside my abdomen” the main text reads: Sometimes it feels like I have air bubbles, blisters, pockets in the deep tissues of my abdomen. Like blisters on the skin, they are associated with latent pain and discomfort, but hurt even more when I move or apply pressure. When I have blisters on my skin, I pop them. Then I get relief. I want to pop the blisters inside. Release the pressure. I want relief.
Image description: A photo from a notebook with a drawing and writing in black artliner ink.
The text reads: Today's pain is a menacing void. It's almost not pain, it's just an absence of any sensory information.
except maybe pain? Maybe. It feels like everything from my ribs to my hips just isn't sending or receiving messages. No proprioception. No sense of muscles engaged, tensed, relaxed. Am I hungry? Who knows! Am I standing up straight? Impossible to tell! Even my bladder--not normally shy to send the message "Im full!" seems only able to whisper. It’s like my abdomen is giving my brain "meaningful looks" that my brain is meant to intuit and my brain doesn't know what they mean and just wants my organs to use their words and send real messages, through the proper channels, rather than just a raised eyebrow that's everyone is supposed “know” means that danger is coming.
[There is an outline drawing of a person from neck to knees with pale skin and a slim build; the space from their ribs to their hips is coloured in with scribbled black pen, darkest at the centre, and more scribbled at the fringes.]
Image description: A photo from a notebook with a drawing and writing in black artliner ink, with some sections coloured in crayon.The text reads: Today’s pain is pink [the word pink has pink scribbles over it] in my lower abdomen. Pink and grainy [more pink scribbles]. And blue like electricity or gas flames up in my diaphragm. Today’s pain is indecisive.
There is a coloured in image of a person’s body from shoulders to thighs, with Xs drawn over the nipples, the skin is coloured in a pale beige tone with a pink section over the lower abdomen/pelvis and light blue on the upper abdomen. There is also a drawing of a bunsen burner with a blue flame.
Text: My pain pallet [sic] (with a box drawn around the text)
Over the weekend my pain was… orangy yellow [there is a box drawn around the words orangy yellow, and the space is coloured in with orange and yellow].
Text continues: the sound of feedback from the aux jack touching the port with the speakers turned up. [there is a scribbled drawing of an auxiliary jack and port, with the letters bzzzzzzzz next to it coloured in yellow and orange].
The words “A dusty smell” with grey and brown scribbles over top and “the texture of sandpapery, dry skin” with grey and beige scribbles and lots of small dots to represent dry skin.