Joy Pains: on Chronic Illness and Living Your Best Life

CARESCAPES #50

A meme by Margeaux featuring a photo of a femme figure holding two suitcases: the suitcase in the left is closed and is labeled “my joy” and the suitcase on the right has opened up, with stuffed animals everywhere and is labelled “my grief.” Image source: Alex Prager | Greed #2 (Toys) (2007)

Hello dear ones,

I’m back in Edmonton, AB, after getting to spend two and a half months in LA. While I’m missing LA, and my sweet human who lives there, I’m grateful to be reunited with my cats and my bed. I wanted to share some new insights into my chronic pain for this newsletter.

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Thank you, as always, for being a part of the CARESCAPES universe! It’s such a deep honour to have you here with me!

With love,

Margeaux

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I’ve been in LA for a week when it starts: full body pain flare up. I try to trace the pain back to the usual triggers: working too much, unexpressed anger, crossing my own boundaries. And nothing tracks. Outside of the pain, I’m happy. I’m no longer stuck in my Edmonton apartment alone, where I’d be going through another winter as an immunocompromised person in a world that has largely gone back to “normal.” Instead of staring out my window at the snow and the -20F weather that turns your eyelashes to ice, I am on the patio at my favourite cafe in Highland Park in a t-shirt and shorts. I am happy. I cannot make sense of this body in pain.

The two and a half months that I spent in LA are magical. I get to see my friends. I find out that I’ve been accepted into a MFA at CalArts, which means I’ll be moving to LA — a goal that I’ve had for a while now. I launch a podcast with one of my closest pals. I find an agent. And I fall in love. And still, the pain flares come and go without rhyme or reason. Towards the end of my stay, I have a session with my therapist. Together, we realize that my submit part, the part of me that uses pain flares as a protective strategy, is afraid. Afraid that they won’t be needed anymore.

Submit is a trauma response that is often left out of the big three: fight, flight, freeze. I first learnt about submit in sessions with my somatic therapist, some five years ago when we first started to work together. When fight or flight are no longer options, we go into freeze (a deer in the headlights) or submit (the animal that plays dead). Submits says “There’s no point. We must give up.” Hopelessness and apathy are submit’s terrain. While this survival responses were once adaptive — we needed them to survive — they eventually become ill-suited to the task at hand, as they’re trapped in the past, unable to see that the scared child they once protected is an adult now.

When we do the work of starting to shift our survival strategies, our parts will flare up. Like a caregiver that sends their child off to college, our parts are worried that they won’t be needed anymore. And the cost of not being needed is a kind of death — both psychic (this part will disappear) and literal (without these parts, we will die). The reality is that we need all of our trauma responses. The goal is not to get rid of them, but to give them new tasks that support us now. We must show our parts that we’re not getting rid of them (as though such a thing were even possible; really, that would just mean that we’ve repressed them).

Through this therapy session, I realize that my submit response is frightened by my joy. If I’m happy, I won’t need their hopelessness any longer. Hopelessness is a brilliant survival adaptation. Hope brings with it the possibility of disappointment. As an adolescent, I quickly learnt that my father would not be responsive to my boundaries or needs, nor would he show up when I needed emotional support. Again and again I’d believe that there was hope that this time would be different, only to encounter the same: rejection, rage, shut down. Submit taught me that it was best to give up hope. In this way, I’d be kept safe from the ongoing trauma of my father’s emotional abuse and neglect. Submit also plays another integral role in our nervous system: it protects us from the grief that lives underneath our trauma. What I’ve learnt is that joy and grief are inextricably linked. We can’t have one without the other.

I return to the movie Inside Out, recalling the relationship between Joy and Sadness. Joy has been running the show in the life of the movie’s adolescent main character Riley. But then the family moves and all of Riley’s happy memories are touched by Sadness. In an attempt to protect Riley, Joy draws a circle in chalk and tells Sadness that their job is to stand in this circle. Joy wants to trap Sadness.

I share this scene with my therapist and she asks if I’d be willing to try something. “Let’s imagine your own circle of joy, one big enough for submit to exist inside of it.” And so I close my eyes, and create a circle in front of me with my arms. At first it’s too small. Submit and Joy are suffocated. I expand my arms and I can feel a deep sigh of relief move through my body. Here, there is enough space for everyone.

After therapy, I feel the shift in my body as the pain starts to dissipate. Still present — as it always is for me, a human living with chronic pain — but it’s as if the volume has been turned down. Now I know that in the moments of great joy that are infusing my life, I must also create space for the sadness and grief that comes with it.

They say that grief opens the door to joy; in my experience joy also opens the door to grief. My chronic pain acts as the gatekeeper, trying to protect me from the tidal wave of grief that it believes will surely come if the portal opens. These are joy pains that I’m experiencing — my body’s manifestation of the psychic and emotional pain that is forced to the surface now that I’m living my best life.

One night, I get on the phone with my partner and I cry and I cry and I cry. I’m crying for all of the versions of me that didn’t know reciprocal love and care; for all of the versions of me that didn’t get to exist, or were exiled away because they were deemed unlovable. I’m crying because a life filled with sadness and hopelessness and struggle was all I knew for so long. I cry for what it will feel like to not just be able to survive, but to thrive. I cry for it all.

If you want to learn more about the submit part, you can grab a copy of my zine “Soft Magic #1: Understanding Our Trauma Responses,” and check out my webinars on parts work.

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Here are some of my favourite resources for grief work, including one of my own:

• The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief by Francis Weller

• How to Carry What Can’t Be Fixed: a Journal for Grief by Megan Devine

• “A Ritual for Grief” by Margeaux Feldman (sliding scale $0-10)

• The GEN Grief Toolkit by Global Diversity Foundation

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Content note: anti-Black racism and violence

Support the GoFundMe for Ralph Yarl, a teenage boy who was shot in the head, and then shot again, when he knocked on the wrong door.

A photo of a Black male teenager holding a saxophone during a band performance.

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