What we talk about when we talk about pain

Searching for words both hopeful and true

Early Monday morning I woke to pain rolling through my skull, a warm wave of hurt radiating from what felt like a weight crushing the right side of my head. 

I got up. Took my migraine meds. Went back to bed. Closed my eyes. Inhaled and exhaled, slowly and deeply. Instead of denying the waves or wishing them away, I rode them. I gave them their due. 

I said:  I see you. 

I said:  We are OK. 

I said:  We are safe. 

My chronic pain doctor tells me that pain is the body’s way of telling us that something is wrong, triggering our fight-flight-freeze response. When I broke my wrist in November, the pain alerted me to the injury and the danger it posed, prompting me to take actions to protect it. That’s good. But my migraine–chronic pain that does not stem from disease or structural damage–is not. She tells me that it comes from a nervous system stuck on high alert. It creates pain to get me to pay attention to peril that doesn’t exist. The pain is real, she tells me, but the danger is not. 

The week before, I felt mostly recovered from the mild TBI I sustained when I broke my wrist. After weeks of gradually loosening activity restrictions, I did all the things I’d been longing to do. I wrote every day. I left the house to run errands. I met my daughter for lunch and went skating for the first time since my fall. We took a long car trip to visit my parents, my brother, and my son. 

While I was away from home over the weekend, headache arrived. Monday, back in my own bed, it slammed me down, hard, and I knew I had to surrender to it.

I went back to my TBI/toddler lifestyle–back to napping, to limiting screen time, to staying home. I canceled plans with a friend. I canceled plans to go skating again. I wrote the first drafts of this essay on paper, by hand. 

I embraced living small and well. I took my medication and fed my body simple, nourishing food. In the mornings, I moved slowly through light household chores, and when I felt the beginning of pain I’d lie down on my bed until it subsided. I spent afternoons embroidering tiny stitches into a fine linen tea towel, a gift for my daughter’s mother-in-law, while listening to an audiobook and noticing how the winter light changes as the day starts to end. 

It was all rather lovely, really, but also isolating. By Wednesday I felt a little lonely, to be honest.

The idea of somatic tracking, which my doctor has prescribed as a path to healing my traumatized nervous system, is to ground ourselves in what is real and true. We feel the pain, we acknowledge it, and then we remind ourselves of where we are and that we are safe. We tell our amygdala:  Things are fine. We’ve got this.

For me, this week, safety has been true. I have had ample food, secure shelter, safe relationships, belonging, love. I know my good fortune. I know it.

But also:

This week, I read John Pavlovitz’s “I Want to Grieve Normal Things Again,” and I felt the heaviness we feel when someone articulates a truth so hard we haven’t given our own words or thoughts to it, but we recognize it immediately when someone else does. I, too, miss ordinary grief, from the kinds of loss that any living person can expect to endure. Pavlovitz lists the ways in which our society is breaking and broken and tells us, “We shouldn’t be grieving continually this way, we shouldn’t be perpetually lamenting newly appearing fractures, and we shouldn’t need to constantly defend ourselves from the wounds inflicted by those entrusted with leading us.” 

I watched, too, Inua Ellams’s stunning video poem “Fuck/Our Future” and realized how much I have not been letting myself consciously see, much less grieve, what we are doing to our planet. This week I encountered articles about the early end to an outdoor Minnesota art installation,¹ the changing nature of winter sports,² and social media posts from midwestern friends lamenting this winter’s lack of snow. 

Of course, the loss of winter sports and cultural traditions is only the tip of what changing winters mean, but still. All of these things made my body feel heavy, as I let it know, for a few moments at a time, the enormity of what we are living through, and I let myself feel my profound sorrow and fear. I know what it is to grieve the loss of a person, but the loss of winter as we’ve known it? I don’t even know how to grieve something as unfathomable as that.

Late Thursday afternoon, as I felt my head tighten again with small pulses of pain, I couldn’t help wondering about my pain doctor’s assertion that my amygdala is sending danger signals when there is no danger. I sat alone on my front porch in February sun, wondering if I should be more comforted or alarmed by its warmth.

By Friday I was feeling restless and tired of being home, lovely and safe as that place is. We decided to go out for dive-bar burgers, our usual end-of-the-week ritual. As Cane and I drove down a main street, just blocks from our home, a large, flapping piece of something on the sidewalk ahead of us caught my eye. “What is that?’ I asked him. 

“Some kind of garbage?” he said. As we passed it, I looked close.

It was not garbage. It was a man, clearly houseless, lying on the sidewalk and wrestling with a large, flapping piece of plastic he seemed to be trying to wrap himself in. He had no tent, no doorway shelter. He was just there, in the middle of the sidewalk on a sunny Friday late-afternoon, and we’d thought he was a piece of garbage. 

“Oh,” I exhaled, as I realized what I was seeing, the air gut-punched out of me both an exhalation and an exclamation. 

I felt sick, not so much because the man rolling on the sidewalk is a great aberration, but because he is not. Because we thought a person was a piece of garbage. Because the situation wasn’t bad enough to call for help. Because we kept driving, just as everyone else in their cars did, just as everyone walking on the sidewalk kept walking toward their own destinations. Ours was happy hour.

Further along, we saw a young man on the side of the road holding up a cardboard sign telling us that he is a veteran, and hungry. His age and sharply thin body reminded me of my son, who is also a veteran. I wanted to take this other mother’s son home and feed him, but we kept driving. Then we passed another man, older, standing on the sidewalk and gesticulating wildly as he talked to no one I could see, and I thought of my brother who, sometimes when he is agitated, stands in my parents’ living room and does the same. 

“These could be my son, my brother,” I said to Cane. 

“Maybe,” he agreed, “if they didn’t have the supports they have.” Their primary supports are me, a chronically-ill woman regularly debilitated by pain, and my parents, who are in their 80’s. 

I thought then of houses I’ve seen in my city’s hills that extend over empty space, held up by timbers that look like little more than stilts. I’ve wondered how their occupants can sleep well at night, knowing that one big earthquake or a storm that turns hillsides into sliding mud could knock their foundations out from under them before they’ll realize what is happening.  

How small does my life need to go? How small should it go? A fully protected life isn’t much of one, and I’ve learned that no matter what I do or how I live, migraine always returns. By the end of the week I was struggling not with physical pain, but with my remedies for healing and preventing it. I was missing the sense of purpose and connection I feel when I am out in the world, fully living in it.

I don’t know what to do about this, how to manage it, how to think about it. For so many years, I’ve seen chronic pain as a problem to solve, a thing about me that I need to fix, but this week, I’ve wondered if migraine is not so much an ailment as it is something like a cure–a thing that periodically takes me out of the world so that I can recover enough from it to go back into it.

But I don’t really know.

Now it is Sunday, and I want to bring these words to a satisfying conclusion. I spent all week wrestling with them, trying to craft a small, pleasing essay of about 1,000 words that resolves with hopeful truths about pain.

That’s not how this essay has gone. I’ve deleted more words than I’m sharing,³ as my understanding of what matters and what is true keeps shifting, and still it is bloated and I’ve left important ideas out—about mindfulness, about ways of being resilient developed by those in cultures that have never known justice, about collective solutions to both personal and societal problems.

I thought about leaving these words in a drafts folder and moving on to some others, or saving them until I could be more sure of them and figure out better ways to shape them. But then I thought about my tag line: “Dispatches from a small, creative life,” and I decided to send them out now, imperfect and incomplete as they are. The goal of my sharing here isn’t to have all the answers, but to explore questions and share updates on how things are going.

Sometimes, our words, our weeks, our lives, the world, and the things we create in response to them are a rambling, murky mess. That is something true I can share. Maybe somewhere in all of mine is something you can use or need. That is something I hope. 

So, there you go:  something hopeful and something true. Please receive my offering gently, in the spirit with which it is given, and, if you feel comfortable doing so, share some of your questions and perspective with me.

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1. “It’s 50 Degrees in Minneapolis. Goodbye, Ice Shanties” (NYT, probably behind a paywall.)

2. “Risking Their Lives to Ski While They Can” (The Atlantic, probably also behind a paywall)

3. There are several pieces of writing I drew upon this week as I wrestled with my own. In earlier versions, I quoted from these: Josie George’s “Mending,” a meditation on the body’s power to heal itself; Kirsten Powers’s “Americans are Depressed and Suicidal Because Something Is Wrong with Our Culture;” and Asha Sanaker’s “Earning Our Right to Exist,” which examines connections between worth and productivity. Highly recommend all three.