Before the show began, a performer on stage asked us to call out the names of friends who couldn’t be there. Not because they were dead, not because they were out of town, but because they were disabled, because they were sick, because they wanted to be here but could not.

I listened to their names, sometimes spoken tentatively, sometimes shouted with a potent mix of glee and rage. I imagined each of them at home. Maybe in bed, maybe reading, maybe puking. Probably thinking about the show. Missing out. Missing out. Missing out again. I gripped my cane in my palms even though I was sitting.

I wondered if anybody had ever called out my name.

FOMO, the Fear of Missing Out, is a term most of us have heard more than enough by now. Less known is JOMO, the Joy of Missing Out, an expression I first learned of shortly before I turned 30.

“I heard about this concept recently,” a friend said. “It made me think of you.”

Each time somebody tells me x, y, z made them think of me, I remember. I write it down. I am afraid of being forgotten. Of being discarded, left behind.

“Have you ever thought about the joy of missing out?” she asked.

Something shifted.

I started to think about what I do love about missing out. I started (again!) to ask myself who I am and how I feel when I’m not comparing myself to anybody else, to an idea of who I’m supposed to be. JOMO became a challenge to myself, to my concept of what it means to be disabled — to be disabled and queer and mad and feminist and and and…

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JOMO became a challenge to myself, to my concept of what it means to be disabled.
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Each time I felt fear of missing out, each time I really did miss out, I reminded myself that fear is useful and that, in my experience and many others’, particularly those of queer and mad crips — those of us who name our psyches and bodies as political, reclaiming terms that were once used against us — it wasn’t “just fear.” It was reality.

I named this ROMO: the Reality of Missing Out. This reality was painful and lonely. But after a few years of naming this reality, writing about it, and trying to change it, something changed within me. And when I was told about the joy of missing out, I knew this concept had arrived in my life at just the right moment. I was sick not only of attending in spirit, of typing out those words — attending in spirit, the haunting quality of them — but of doing so with rage, sadness, and grief, with frustration and bitterness. With fear. These feelings became redundant. They became boring.

In some ways, I’ve been cultivating the Joy of Missing Out since the day I was born. My twin and I were born into a family with a long history of poverty, including a grandmother who once shared her bed with six sisters, and a grandfather who grew up in a small apartment above a convenience store. They met while working retail jobs on Queen West in Toronto in the 1950s, living and working in the same (but now very different) neighborhood I would move into as I was approaching 30 in 2013. When our parents divorced before we began grade school, my twin and I moved into low-income housing with our mom in the early-’90s, and although much of our family now lived in the same small town, we also had family scattered around the province, the country, and the world, from as close as Parkdale in Toronto, the neighborhood I would eventually move into, to New Zealand, where distant relatives would send us boxfuls of craft supplies once a year.

How Magic Helps Me Live With Pain And Trauma
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Words like poor did not enter our vocabulary often, but we knew there were things we were missing out on: birthday and holiday gifts, school trips we couldn’t afford, new clothes that weren’t hand-me-downs or purchased at the cheapest department stores in Lindsay, Ontario.

I grew up feeling jealous of what I couldn’t have, but I was also able to develop a rich imagination, and I began writing fiction before I actually knew how to write individual letters on a page. In my early teens, I was arrested, charged, and incarcerated multiple times, and somehow, even though I was in the midst of being traumatized before trauma entered my vocabulary, too, I did experience a kind of joy as well — I was terrified of the detention center I was locked up at, of handcuffs, cop cars, and court cells, but I was glad to no longer be in my family’s home, to no longer be in school, to no longer be in my hometown. I was lonely, angry, and afraid, but somehow I coped.

Later in adulthood, as fibromyalgia, chronic migraines, and multiple chemical sensitivities led to me being housebound much of the time, and even bedbound — taking countless meds and wearing a mask so that I might be able to breathe — loneliness, anger, and fear became my constant companions once again. Well, they always were, but this time it became more complex.

When I thought about the Joy of Missing Out, I began asking myself some crucial questions:

What do I love about being sick?

What do I love about staying in bed?

What do I love about being alone?

In 5 Assumptions Behind the ‘Fear of Missing Out’ That Are Actually Really Ableist, Neve Be writes, “FOMO is a product of industrialized capitalism and a society of people who feel that they’re always running out of time to be a success or to have value or to have fun.” And in fact, FOMO originated not with organizers, not with queers, and not with community, but in the realms of marketing, branding, and “consumer psychology.”

Toward the end of their essay, Neve writes:

“If something feels inaccessible to you, and people are not moving forward on making it more accessible, I promise you, it will not be the only event of its kind. Right now, there is another disabled person attending that event and raising a ruckus about how inaccessible it is for other kinds of disabled people.”

I still remember the first time I read this piece, how I wrote these words down and shared them online because they were the first words I’d read in a long time that made me feel like I might not be missing out as much as I thought I was, and like I might not be totally forgotten during those times when I was indeed missing out.

Last winter, while I was housebound, unable to stand up long enough to wash a cup or make a bowl of soup, and recovering from another migraine, my twin sent me a link to “Sick Woman Theory” by Johanna Hedva, who writes:

“I listened to the sounds of the marches as they drifted up to my window. Attached to the bed, I rose up my sick woman fist, in solidarity…I thought of all the other invisible bodies, with their fists up, tucked away and out of sight.”

I thought I would feel better after the snow melted. After living with chronic illness and chronic pain for eight years, I’ve learned not to count on “feeling better,” but I do still hope. Still, when the snow was gone, when folks were setting up picnic blankets, fashion shoots, and art installations in the park across the street from my apartment, I was, of course, still sick.

One day, while I was in bed looking out the window — I am lucky to have such a large window — a group of people began to gather nearby, under the pine tree growing on the corner. It was a gathering of Mad Pride activists meeting for refreshments and conversations after the Annual Bed Push, a small parade in which people in the city push a hospital bed along Queen West.

Although the parade ends at my doorstep, I’ve never attended. Mad communities in my city — and everywhere else, of course — are extremely disparate, sometimes overlapping, but oftentimes not. One year, I walked alongside the parade unintentionally, on my way home, sad, needing to hide under my blankets again. The crowd was small, and I felt a distinct sense of not-belonging. The following year, I was home, watching from bed. The same not-belonging feelings came back, but I was in the process of re-defining them and embracing them. So I watched the small gathering from my window, and I thought, “I’ll write about this someday. I’m missing out, but I’m not missing out at all.”

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I’m missing out, but I’m not missing out at all.
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Shortly after that, I was on a WheelTrans ride home from an appointment. WheelTrans is a service for disabled folks who can no longer access public transit in the city, and the fare is the same. As we picked up another passenger, she told me she was on her way home from the Disability Pride March. Nobody had told me about the march, and it was another particularly cruel reminder of how so many disabled communities are not in touch with one another, of how if I had any pals who’d thought about me at the march, they didn’t bother to send a text.

Later that summer, after tabling at a zine fair, I tweeted: “Today I went to my first Queer Social Event in 9 months, if you’re wondering what disability, chronic illness, and isolation look like.”

While I felt bitter in that moment, I was also naming my joy — I had left the event early, packing up my zines and books, sneaking out without saying goodbye to anyone, because I did not feel I belonged there, or that anybody would miss me if I left. After crying in an alley and texting with my twin, I went home, went back to bed, and continued reading The Cancer Journals by Audre Lorde and The Lonely City by Olivia Laing, two important books in my process of continuing to politicize my own experiences with illness and loneliness.

I felt so much joy being in bed with those books at that moment. I was glad I’d left early. I viewed my departure not as escaping, not as hiding, but as self-preservation, as knowing my own boundaries, knowing where I would rather be, and getting there. I was grateful to be in my bed again, to be alone, alone, alone.

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I know I have friends in their own beds at home, sick like me, thinking of me, raising their fists.
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When I wonder if anybody ever calls out my name at an event that I am unable to attend, when I wonder if they remember me at all, the words I’ve found through these books and essays, as well as conversations with my cripple weirdo friends, come back to me. It may be that those who are at the reading, at the protest, at the show, are not thinking of me at all, but whether or not they’ve forgotten me, whether or not they wish I could be there with them, I know I have friends in their own beds at home, sick like me, thinking of me, raising their fists.

As I was reading, feeling, theorizing, the epiphany I needed finally came to me:

It’s not me who’s missing out. It’s you. Non-disabled folks are missing out when we can’t be there. You miss out not only on our presence and our support, but on our genius and our wisdom, too, on our insights and art and knowledges and our activism.

You are the one missing out, not us.

Original illustrations by CB Lavery.