Crying in the MoCA

Not till we are lost, in other words, not till we have lost the world, do we begin to find ourselves and realise where we are and the infinite extent of our relations.

~ Henry David Thoreau

2024 was a year with no pain flares. A year of my body holding its breath as, every few months, my life was punctuated with sudden stressors, traumas, or outright violence. The first sign I was building safety again came swiftly a few weeks ago, my body let me feel all the danger for the first time, and I spent over 23 days in the grip of a pain flare. 

In January 2024, I entered a grim year and a half during which pain didn't flare, but the world stopped being a source of wonder and became something to fend off, wait out, and protect myself from. I did my work, I paid my bills, I would quiet my persistent urge to live by eating when I was starving and trying to sleep when I was too exhausted to be afraid. My body was a half-remembered poem from a dead age. Inspiration didn't merit interpretation. I wasn't concerned with poetry, art, or my body. I wanted only to see the other side of sorrow.

by April 2025 I was a director of product at a top 50 startup; I had an impressive resume, a new home, solid relationships, good friends, and unchecked chronic trauma responses that led me to contemplate physical violence being done to me several times an hour and had me sleeping in ragged 2-hour shifts. I had lost 14 lbs (12% of my body weight) in a few weeks during the winter, and by March, I had failed to put any of it back on. I was struggling not to lose more. I was struggling to keep myself going, and I left my job abruptly. I found myself suddenly unable to tolerate the escalating cruelty of the culture, and with the remarkable and compassionate support of family & friends, I decided to focus full-time on rebuilding my mental health. 

It took me a month to leave my company, during which I negotiated my exit with the company's lawyers. My hands went numb on May 7th, marking the return of an old symptom. The end of my range of motion started to become a painful, tattered, and aching line on the 8th. I went to Montreal with good friends and did my best to ignore the rising tide of a flare-pain growing slowly every day, pain pulling taut like a rope in my body getting shorter as I relaxed and had more fun, let my guard down. My friends gave me the best bed, and I skipped outings to lie on the floor and let my muscles throb so I could stand up again and eat croissants and a Paris Brest and make dinner for my friends after we all walked all day in the Montreal sun. I was dizzy, seeing stars, my heart would race, and my skin was slick with sweat, but I had a wonderful time. Physical pain, I have learned over and over, can not negate joy.

I held it off for as long as I could, but the day I left Montreal for Toronto to stay with my lover, my body let loose the snakes of agony, and my muscles turned to stone under their slither. Pain became a density in my body, restricted movement with a taut viciousness that took my breath away and distorted my proprioception.  

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia - or autonomic nervous system dysfunction - that affects heart rate and blood pressure regulation. While there are many factors in the presentation of dysautonomia, connections to physical and emotional trauma are abundant. Trauma contributes to the onset of dysautonomia and can make POTS more severe because of the ways it damages the brain.  

As a result of trauma, I have had increased central nervous system responsiveness for most of my life. I have POTS and Fibro. In some individuals with POTS, Fibromyalgia, and other chronic pain conditions, elevated Norepinephrine contributes to increased heart rate and other symptoms, such as increased arousal and alertness, hypervigilance, and enhanced formation and retrieval of memory. Many of my symptoms are directly related to elevated Norepinephrine, like heart palpitations, sleep issues, headaches and pain. Some individuals with POTS experience a specific type of headache or neck pain described as a "coat hanger" headache, very similar to the pain of a migraine, but where the pain is concentrated in the neck and upper back, similar to a coat hanger hanging from the neck. There are times when this pain is incapacitating and restrictive, pinning me to the floor like a butterfly to a board. 

I cannot describe the monstrous shape of it, but when I'm in this pain, I can see the structure of my body and motions in vivid, detailed shades of agonising sensation. My tendons become ribbons caught between rocks. Moving my head is impossible, using my arms to lift a glass of water or brush my hair is agony. Moving, walking, standing, lying down, every motion triggers pain, which blooms out in all directions, enclosing my face, chest, arms and hands. This pain presents as the most severe part of a larger cluster of symptoms, including dizziness, blurry vision, seeing stars, changes in hearing and blood pressure, and fatigue.

The days move on; pain sits in my body like a stone. My love took care of me, providing ice packs and hot water bottles, giving baths and helping with my clothes and hair, making every cup of coffee and every bite of food. Ten and then 15 days of limited motion in my arms, pain, throbbing in constantly flexing, rigid muscle, tingling hands, dizzy, cold and dripping sweat. I let it happen, I remembered as much as I could to breathe. to not tense up around it. 20 days, 23 days...slowly, the pain lifted

As the pain lifted, like a tide pulling out, I went on an outing to the Contemporary Museum of Art - dressed in sweatpants, an oversized cotton sweater and my leather jacket, my hair dirty from not having the mobility to wash it very often, unable really to stand or sit still for long, I went to see Margaux Williamson's, 'Shoes, books, hands, buildings, and cars' entirely by accident. I had no idea what was showing; I just wanted to look at some art. 

The painting "Museum 2025" was one of the last pieces I saw in the exhibition. A varied grey expanse, its forms seemed to swim up at me slowly. It was as if I had to learn to see it; it took time to discern.

Museum, 2025 | Margaux Williamson

 Art, like pain, demands you meet it halfway.

I lost track of my body; my heart beat faster, and my skin flushed warmer than cold. Carefully guarding against pain that waited on the edge of every motion, I took off my jacket.  Chronic pain persisted, but sitting there, I was really only aware of the space inside the painting. 

Perhaps it was something in the composition, in the glowing box in the foreground, or something in the setting (the painting appears to be of the museum where I saw it—but perhaps this speaks more to the artist's ability to make everything feel familiar). Maybe it was something in the brightness of the painted lights, or something in the grey depthless infinity of it, but it moved me. A fog of many emotions pressed against the inside of my ribcage, my throat, the roof of my mouth. It stung my eyes. My mouth trembled, trying to express an emotion it was beyond me to conceal or name. There was tightness in my throat as though I could cry, and I did briefly. A tear rolled down my cheek, and for a long moment, I didn't breathe. I felt an incredible surprise and a deep, unsettled, exciting feeling, as if I was learning something both new and challenging. Perhaps it is the feeling of experiencing a novel emotion.

I didn't think about anything. I didn't draw any conclusions. I didn't stop to consider a single thing about the painting, such as whether I liked it or not. I didn't give it meaning beyond the emotion I felt looking at it. I stood there, looked at it, overwhelmed with feeling. I cried in the museum. 

Art is exactly what art is to you in the moment you choose to give it meaning, and so is recovery. Recovery will have meaning until you decide it means something else. That's how meaning works. It's a subjective act of interpretation you participate in. You might get the impression that I'm saying everything is meaningless, but I'm saying the opposite. 

Trauma is meaning on overdrive, meaning mutated out of our control. But meaning, like art, happens in collaboration between stimulus and self. Like looking at a painting and being moved, we can not control it, but we can work to experience and understand its meaning, and through understanding, change it.  

It wasn't until the next day, when I went back and sat down to stare at it, that I tried to understand it better. I sat down and looked at it more carefully, seeing not the painting at all but my own emotions. 

Looking at "Museum, 2025" was, for me, in those moments, like looking into the future. It's a painting of a space exactly like the room where I was standing, as though a layer of reality had come down and some other dimension was visible just beyond the scrim of the familiar. In it, formless and infinite and right there in front of me, was the world. 

I have learned, not gently, that trauma is not the opposite of life. It is part of life. Like pain, I will not let trauma negate my joy. Our nature is to understand and eventually build what we need, and Trauma recovery allows me to build the meaning I need when I need it. Making meaning in this way is akin to creating harmony between two voices. I sing my portion, and my body sings hers. The harmony is woven, meaning exists in the world, I cry in the museum, and a tide of pain pulls out.