an essay about chronic pain
& photos taken during flares
The subject of pain is an alien landscape, vast and inhospitable, unexplored. It is darkness on a map of consciousness, a shifting nebulous cloud. I have always been curious, drawn to go more deeply into that blank space. Even as a child I was fascinated with pain, with intensity, especially fear.
Since beginning a life of integrated joyous masochistic expression I have learned that the emotions and sensations I experience in the throes of pain exist only in that space. An experience with singular pathways. So perhaps it makes sense that the relationship which creates those sensation has rules and structures of its own, or that my relationship with love and pain are deeply integrated into each other and complex. Writing about pain is trying to seek or offer something from this multitude and complexity. I seek to fail, I suppose. I have moments I can follow like veins of opal through the stone of my days to try and explain, to draw a map of experience, which can sometimes, maybe, look like truth.
Recently I was diagnosed with Lupus and Fibromyalgia, but I have had Chronic Pain for the last five to six years. Chronic pain entered my life like a natural disaster. It destroyed everything I thought I understood about myself, as though the comforting secret I had been keeping began to poison me, became a ferocious antagonist.
My connective tissue tightened like sodden swollen ropes, strangling nerves and pulling on my bones. Pain like that, steady and relentless, moves beyond metaphor. When it is bad enough, pain moves even beyond sensation - it becomes a philosophical undoing of the self. I questioned my personhood, my existence, my sanity.
To be honest, in some ways, I hesitate to talk about my chronic pain. I am so fortunate, so healthy and productive and vital and supported, my life is far too easy, too bright and joyful to be useful as a point of view on survival of such darkness. Other times I disagree, though I suspect I am uniquely suited to live well with chronic pain. I enjoy isolation and solitude to an extreme degree; I live mostly inside my mind. I have a natural disposition that believes all things change with time. I can tell you that these things help me, but I can’t tell you how to make them part of your inventory.
I’m a masochist, and I have been for as long as I can remember. As I grew up, these desires grew with me. My first crushes, first fantasies, first glimpses of romantic and sexual promise were laced with shades of pain and violence. For me, innate expressions of love and erotic desire are felt through the metaphors of pain and force and physical intensity. I know now, after a long time, that masochism and power dynamics can be a healthy metaphor for love, a method and philosophy for structuring romantic experiences.
Unlike the pain of a slap or bite of rope or stroke of a cane, chronic pain offers no arousal or complicated enjoyment. No sooner are you free of it, than you suppress the memory, along with whatever illuminations it might bring. Chronic pain’s lessons are slow and brutal, and mostly you try to avoid learning them, ducking the next lesson. Some nights I am in so much pain I lie in bed and sweat until my sheets are damp. In the worst moments of agony, I am forced to wonder why we persist in this distinction between pain in the body and pain in mind because pain chews away at consciousness with closing darkness, a closing fist. Why don’t we have a word for the emotional experience of pain? Is pain alone enough to cause desolation?
There are many myths and silences around pain and even more around masochism. To feel both I think is a singular and isolated experience. I fell in love with a sadist about three years after my first symptoms. I didn't fall in love because of pain, be it chronic or passionately consensual. But exploring pain through a new lens, a facet other than a battle against my own body was freedom and power that resists articulation. It changed everything. It is still changing everything, all the time. It is joyful, powerful, redeeming and renewing, in this way the pain I feel as a masochist is different from the pain of chronic illness. Each is its own story.
But there are things they have in common, morals and themes, mirroring shades of one vivid colour. When you are in pain, all you can do is exist. Prolonged and chronic pain stitches itself into your life, and masochism is an ongoing engagement, a willingness and desire, to experience physical sensations.
Masochism has given me many experiential gifts, bruises and memories like little gems. I have felt the impact of canes and leather and a rough lover’s welcome fist on my chest. I have been bitten and slapped, I have had handprint bruises on my thighs, finger marks flared red like butterfly wings. Never in any of that loving violence have I been afraid I was nothing. Such darkness is the landscape of chronic pain.
Pain is always subjective. You can never cut the “I” out of it no matter how hard you try. It fuses mind and body, it both splits and binds together. In pain of any kind, we enter a dialogue with ourselves. Consciousness divides into conjoined twins of subject and object, joined at the spot where we hurt. It turns us into observers, explorers. But only chronic pain terrifies me, sends me spinning into storms of catastrophizing.
The first thing I learned from pain is that it has no language of its own; it is impossible to describe it, as a desire or an experience. Pain must recruit from the ranks of metaphors and similes: knifelike, killing, burning, sharp, dull, heavy and electric. The experience feels just beyond our grasp at every moment, as elusive as smoke, bereft of words. Pain arrives as a fusion of sensation and emotion and memory, irreducible and vivid whether it is consensual or chronic. Between these two pains I found a third.
The pain of healing.
I wore a black wool coat with a tuxedo lining to the Centre for Healing Arts in Toronto. Under the coat was a wool sweater and lined winter tights, high socks and snow boots. No jewellery. I wore an organic moisturizer scented with earl grey tea. My makeup routine minimal, consistent; and other than the occasional smear of red lipstick put there by my love, entirely my own. At this time, I wouldn’t be diagnosed for another two years. I had been in pain for almost three, clouds of aches and agonies drifted and in their shadow was structural disorder that choked movement and form and joy.
The Centre was an old house somehow still standing in the middle of Bloor Street, it smelled a little like warm wood and incense, some medicated cream. It was quiet, dark, the kind of place that made me want to whisper. Outside it was snowing, and as I took down my hood, snow fell to my shoulders. The waiting room was on the little landing between the first and second floor, a row of three wooden chairs, from three different dining room sets. It was more hippy commune office space than a medical office, but I had tried everything else. And I was as practical about this almost mystical treatment as possible. Structural Integration.
I was referred by a physical therapist my sports medicine specialist sent me to. A soft-spoken gender-ambiguous human with skin the colour of sweet iced tea. They talked about it in a hushed tone, almost a whisper, as though it wasn’t something they should tell me.
- I think it would be perfect for you, just based on how your body feels…
At the end of a session, they gave me a name and an email address written on a scrap of paper.
Waiting inside the tiny space, an elderly Chinese woman came up the stairs, clutching her head for a moment. She went into a room on the second floor and closed the door. The sound of hushed voices filled the hall. I considered how it takes so much, too much - energy to act as though we are alright. I was reluctant to be there, but felt monstrous with the monotony of pain.
The man who did the work of integrating my connective tissue was in his late 60s and had fingers strong as steel bars. He peeled layers of tension out of muscle and sinew, peeled away years of trauma held tight. It was agony, but it was also wonderful, and it worked, a ferocious brutal healing. The therapy was painful, at times, more painful than the pain itself. My muscles and tissues were twisted so tightly that I could hear them groan and pop and creak inside me as they released, shivering and twitching like wild animals. Integration therapy peeled me open, and I got to see what was inside, it acted as a strange and wonderful bridge between chronic pain and masochistic pain, a third force. It wasn’t sexual or romantic, but it was a choice, an intense act of submission to pain and sensation. There was fear and sweat and laughter and deep, shaky breaths.
Pain tells many stories, and many of them you can’t know until your body knows them, until you feel them. Before that they are only whispers, pale ideas, suggestions of thought. These are the morals of Pain’s stories; here is what I have learned and re-learned.
Pain is Desolation so Offer Your Self Consolation
Pain can be a time of desolation, making us feel far from goodness. This lack of feeling of goodness can be like a loss of pleasure, but it is deeper, more corrosive than that. Spiritually, it is defined as the loss of the feeling of god. But even those who don’t believe in god feel this loss, this void in the consuming nature of pain. It turns us in on ourselves, drives us down into a consuming singularity of our minds and crowds out everything else, flooding over our landscapes and landmarks of joy.
Consolation is compassion. It won’t prevent you from desolation; it won’t end it. It can't inoculate you against suffering. Pain hurts, even if the pain of another may be greater. Compassion is not an act of comparison, not even with the self with past or possible future states; it is not about improvement or endings. These things are beyond the desolate. But compassion is a weapon, a lamp, a light source under our skin that makes our blood visible in a red, painful haze. Consolation directs our focus, lifts our hearts, it reminds us of love, it whispers that change comes to all things, that even desolation is temporary. Be kind to yourself in all moments
Look Your Best on Your Own Terms
Some people would condemn such advice as shallow and vain. But there is a difference between vanity as a source of self-obsession and judgment and a polished presentation that shows you how value yourself. The key factor here is establishing terms, finding ways to express or exert choice even on the worst days.
So many styles of clothing are hard for me to wear, my skin is sensitive to the point of irritation in various fabrics, denim can damage my skin, and I often react to the rivets in jeans. Tight or restricting clothing can cause me pain, my body temperature fluctuates a lot so I can go from feeling fevered to freezing a few times a day. My skin tears easily, every pair of shoes I ever buy makes me bleed for a few days as I get used to them. I hate this delicacy, but fighting it is painful. Sometimes I can’t raise my arms high enough to brush or shampoo my hair. Sometimes my eyelids are puffy or droopy, my joints swollen.
Looking your best isn’t about looking like anyone else except the best version of you you can find at any given time. Part of why I put energy into dressing comfortably but according to my taste and aesthetic is so I can feel good about something, so I can control something a little bit, so I can successfully plan an outfit at a time when perhaps I won't get to decide much of anything else for a few days.
I make sure of this by ensuring all my clothing is pain appropriate. I don’t have pain day clothes; I have clothes that will work no matter what kind of day I’m having. It also makes it harder to dread or resent certain pieces. I focus on soft mobile fabrics, natural fibres, nothing skin tight, no heavy zippers or buckles, loose wrists and necks, elastic waistbands whenever possible. I keep it simple with well-made basics, light layers, no colour. A uniform wardrobe makes it easy to look casual to professional with little thought or effort, especially when both of those are in short supply.
Another aspect of looking my best is taking care of my skin and hair and nails. Doing these sort of superficial self-care things is actually less about soft skin and shiny hair as it is time I can spend forgiving and liking and focus on my body. Taking a bath or shower, shaving, washing my hair and skin etc.. are all ways I can focus on my body in wholistic, compassionate ways that *aren’t* about pain, but tenderness and connection.
Do less. I know. But seriously. Put things off 20 min, an hour, a day, a week. Cancel plans, call in sick when you can, take long lunches and add at last a day to every completion estimate you offer. Sit down. Do nothing for five seconds, feel how fucking tired you are, maybe feel that little tightness in your throat that feels maybe like sadness or maybe like anger. Give yourself five seconds to feel how deep and complex you are. Remember you are human, that you have a heart that beats and blood that gallops and there are nerves in your skin that only feel pleasure.
remember that doing less doesn’t mean things fall apart.
Pain steals moments, it chews them up and takes them from you. It destroys choices and options and dinner dates and being able to wear shoes that look like sculptures and skin-tight jeans. It wakes you up at 4:30 am covered in sweat and sticking needles in your hips. Pain takes a lot. Pacing yourself, creating time where you sit still, do nothing, breath and feel your feelings, steals something back.
Pain Cannot Negate Joy
Pain takes a toll. But its reality is that it doesn’t prevent happiness. Here I am not talking about depression or anxiety, or any of the other ways chronic pain or illness can affect mental health and vice versa. But joy doesn’t belong only to the healthy; it's not tied to wellness. Happiness, unlike health, unlike our bodies, is a skill, a series of choices, a recognition of happenstance. I have pain almost every day, but pain doesn’t dictate how my day goes. I know how to have a good day even if I can do very little. I have found a few small tasks I can almost always accomplish, and I look forward to them. If i have to I build days around them. Making toast and tea. Petting my cat, reading a book, writing a few words. Taking a photo of the sky. Being light-hearted has less to do with the totality of our lives and more to do with opening to a moment.
Pain Sometimes Whispers the Truth
Loss shows me how much I love, fear is a bright light on what I value and want to spend my energy preserving. The things I miss or mourn or fight when pain pins me to my bed are the things I should chase and hold and touch when I can. Holding my lover's hand and sipping from a shared thermos of coffee at 4 am in the MRI waiting room of the hospital is a fond memory because we were together, my hand in his. After we went out to a 24-hour diner and drank more terrible coffee, shared a plate of pancakes.
As I walked from my grandfather’s grave this May, a little rain falling on a Newfoundland hillside, I noticed how beautiful the flowers on his coffin were. One of the gravediggers saw me stop and smile, and as I turned to go, he walked over and handed me a rose from the spray. Even difficult moments can be savoured.