A trip to IKEA destroyed my life, or, #millionsmissing and the moral corruption of normalcy

“I think you need to send that feedback to IKEA.”

A trip to IKEA destroyed my life.

“I think you need to send that feedback to IKEA.” My friend H. thumbs the wheel of a Bic lighter until a long orange flame emerges from the opening, dances like a charmed snake. She dips her head to draw smoke through the stem of a short glass pipe and her phone’s fisheye lens stretches her forehead, shrinks her chin, so that she briefly looks to me, on the other end of our Zoom call, a bit like an anime drawing of herself.

I always feel a little peculiar watching my friends smoke pot. A little bitter, a little salty. The flavor profile of envy and grumpiness. Cannabis is an important part of how many of my friends manage their chronic illness symptoms, but it’s just another thing I largely lost access to when SARS-CoV-2, also known as the novel coronavirus, also known as COVID-19—and now largely not named in polite company—came for me in 2020. Now that the post-viral chaos COVID unleashed on my body is better managed through a combination of medication and pacing, I can smoke pot again—and I sometimes do—but it still can trigger unpleasant mast cell reactions, headaches that escalate to migraines, spaciness and irritability that creep into subsequent days. It largely isn’t worth it.

H. lives in the San Francisco Bay Area, and I live on the East Coast, so we’re about as far apart from each other, as the very ambitious crow flies, as two people in the so-called United States can be. We met in a Facebook group for folks who are diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). There are eight of us in our intimate little Signal chat; six are scattered across the continental United States and two hail from Australia. Day and night, like the seasons, are flipped between the US and Australia; I love the regular reminder that the earth is so very, very vast, and that time as we experience it on the mundane is a phenomenon of planetary motion, of light and angles, of physical laws and serendipity. In the past two years we’ve become a vital support system for each other. I don’t know what I’d do without my chronically ill community.

I’m amazed by how much more I know now than I did in 2022, before a journey into the heart of a home furnishings superstore plunged my disease from annoying, but livable “moderate” to absolutely unlivable “severe,” and before I had a diagnosis or any framework at all for understanding what was happening to my body.

KALLAX and the fires of Mount Doom

An IKEA store in…well, does it matter? IKEA is a planet unto itself.

It is July of 2022. My at-the-time spouse—let’s call him N.—is driving us to IKEA. As we approach the exit, as the great blue and yellow temple to consumption emerges over the rising curve where I-95 loops back on itself, our teeth knock together where the metal seams in the road challenge the car’s ancient suspension. My seatback is reclined, my ankles crossed and my heels braced on the dusty plastic of the dash, my bare toes pressing foggy prints into interior of the windshield. At this time, I don’t know that I have a cardiovascular disorder called POTS (Postural Orthostatic Tachycardia Syndrome) that interferes with my body’s ability to circulate blood up out of my legs and back to my heart. But I instinctively know that I am more comfortable with my legs up.

N. is always game for a domestic adventure, but the trip to IKEA was my idea, and I am excited. I am only just recovering, finally, from a wretched, disabling three-month infection with the Omicron variant of COVID-19, and I am craving normalcy with every bone in my now—unbeknownst to me—incredibly delicate body. A day of conspicuous consumption sounds like just the thing.

I don’t yet know that my recent COVID infection—like the tide belching something monstrous onto the shore after a storm—has left me with a postviral, energy-limiting illness that I will have to manage for the rest of my life.

It’s easy to imagine oneself on a kind of Tolkeinian quest for home furnishings on a trip to Ikea. Concrete parking lots sprawl in all directions like the badlands that border Mordor. Inside the building, paths wind around and between brightly lit domestic, furnished scenes, invoking a map of Middle Earth—or a lifesized Candyland board, except here the confections are meticulously arranged home furnishings: bedrooms and bathrooms, neat and efficient; closets and kitchens, shiny and aspirational. Almost everything is modular and absolutely everything is labeled with a charming Swedish name. If you want to purchase something, you write down its indicated lot and bin number on the slip of paper so you can find it later, disassembled and packed in flat boxes in the cool, cavernous belly of the building.

N. and I follow the blue and yellow arrow decals on the immaculate white floor through the carefully curated tableaus, my small hand disappearing in his large one. I am in high spirits, overstimulated already. His bearded face looks comically swollen under his extra-large N95 mask. I breathe into my own mask as we wind between carefully curated displays, stopping occasionally to point at some resonant object—a gleaming shelving unit called KALLAX that would hold all of our office supplies—flowing comfortably with the Sunday afternoon crowd. It is 2022, so we are not the only people wearing masks, but it’s close.

We walk miles. Our local IKEA has four floors, including the basement. In retrospect, knowing what I know now about the nature of my illness, the crash that comes later is absolutely predictable. But at the time, all I am thinking about is the romance of consumption.

Screaming into the wind

I understand the desire for normalcy. It’s the desire drove me to IKEA on a lark in 2022. It’s the desire that, I imagine, animates all of the people around me now, in 2025—people who seem to be living parallel lives, moving in and out of grocery stores and day cares, dance clubs and karaoke bars, carefree and mask free like they don’t understand that we are collectively in the throes of the slow-motion train wreck of a pandemic, a global mass-disabling event.

But a return to the normalcy of 2019 is a death cult, a fever dream—it is not a sustainable option for anyone in this ongoing pandemic. Disabled or not, those who aren’t taking precautions against COVID infection are living on borrowed time. Research into COVID’s long-term effects on the body shows the clear and present danger of repeated exposures. COVID silently damages organs and body systems, increases the risk of heart disease and diabetes, and causes cumulative damage to the immune system, even in asymptomatic cases. Risk of developing “Long Covid,” an umbrella term that includes the dramatic complex, multisystem crisis of ME/CFS with which I am diagnosed, is cumulative with each exposure to the virus. COVID is now the leading chronic health condition in children. The science is clear. And yet, we collectively deny this reality with the fervor with which we ignore the climate crisis and the impacts of capitalism on the global south and on marginalized people everywhere. Wile E. Coyote does not yet comprehend that the cliff beneath him is gone; he’s rushing out over open air.

Normalcy is another world, not this one. Normalcy is a delusion that, unfortunately, will catch up to the rest of you eventually.

And we, those who know, the disabled, the chronically ill, the vulnerable, we masked and often dismissed Cassandras, canaries gasping and wobbling in our cages in the collective coal mine, can’t do anything about the mass decision to blot out reality but continue screaming into the wind.

Ground Zero

We are in the cool, vast parking garage when my legs stop working.

Crushing exhaustion hits me like a great fist, like a grand piano dropping out of nowhere, crushing a cartoon coyote flat to the earth. I taste metal. Have I been poisoned? My thoughts are molasses sticking to the inside of the jar of my skull. N. helps me to a stack of wooden palates and I sit, slumping, clutching at the slats to keep myself from falling over. The warning prickle of splinters. The surreal roar and rush of the crowd, oceanic, parting around me by some magic I can’t comprehend: couples glowing with the smugness of acquisition; little kids losing their shit after a day of holding it together; dad types pushing carts overflowing with treasures. I am adrift in a shipwreck, my body in a state of collapse, like crushed origami.

We make it home, somehow; my memory stutters and fails here. And the next morning, I actually feel fine. But soon “fine” begins to escalate into something else entirely.

Two days after the IKEA trip, I am sitting in front of the matte white expanse of my new MITTZON desk, the little black rectangle of my phone in front of me, poking at the portal of the touch screen, dialing my PCP. I think my nervous system must be on fire. For the past few days, I have been unable to sleep. Now, every sound and sensation is sharp, too sharp; my vision has a crisp, hyperreal quality; my eyes seem to bulge out of my head. My body and mind buzz with something that feels less like anxiety than emergency. My heart flutters and races. Have I accidentally taken too much of the synthetic thyroid hormone I am prescribed? Did somebody slip crystal meth into the water supply?

It does not occur to me, at the time, to connect this feeling to the brutal exhaustion that overtook me in the IKEA garage.

I now know that this speedy, wired feeling is like the scream of nerves prickling back to life after the temporary anesthesia of a devastating first-degree burn. The last bright burst of supernova before a star collapses and goes out. It is the cocktail of stress chemicals that a wrecked body cranks out in a desperate attempt to keep itself running on fumes. The nervous system flipping into full-on sympathetic overdrive, trying to keep the body running when there is no ground on which to stand. These are the moments of weightless, pinwheeling freefall, before the skydiver with no parachute crashes into the Earth. Though I do not know it yet, I am falling into a chasm of a catastrophe so deep that it is hard to overstate.

For another day or so, the speedy feeling will escalate. Then my body will collapse into an inflammatory emergency that will leave me bedbound for more than six months. Unable to hold down even liquids, I will lose almost 50 pounds. My immune system will do such catastrophic damage to my connective tissue that I will be forced to have spinal surgery in 2023.

For the longest time afterwards, I couldn’t—wouldn’t—believe it was a trip to IKEA—something so mundane, so normal—that did me in. I must have caught COVID again in the showroom. Or been silently, stealthily struck by lightning—zapped by an alien death ray?—something—while I was distracted by one of those lamps that look like tentacled space aliens. The drama of what had happened to me was so incongruous with the mundanity of a trip to the store that it didn’t compute.

It wasn’t until I connected with the specialist who treats my complex multisystem chronic illness that I began to understand how profoundly dangerous overexertion is for my COVID-ravaged body. That pushing past my energy limits is no trivial matter, but can permanently disable me further, or even threaten my life.

Discovering this, really understanding it, was like passing through a portal to another world.

The moral corruption or normalcy

“A deal was struck; we will exchange those who will be harmed by COVID for a semblance of 2019. But those who made the deal are not those who pay the price. Instead, it’s me, it’s us, every day, over and over again, while those who reap the benefits of this deal are out enjoying the freedom we buy with our bodies, our clotted blood, our broken cells, every day, every day, every day.”
-

Julia Doubleday

, from The Gauntlet on Substack

I don’t miss my ex, but I miss the intimacy of being partnered. I miss having a secret shared language, and someone with whom to enjoy the smell and sizzle of incipient pancakes on companionable Sunday mornings. I miss the ground of shared experiences that accrues, over time, beneath two pairs of feet, like a primordial continent rising out of water. And the mundane little thrills of a shared life—for example, of decorating a home.

N. lives in a parallel world that is not accessible to me, a world where the global pandemic is over and lives like mine are an acceptable cost of a comfortable status quo. A world that rests on a consensus of mass delusion. I would like to think that, even if I myself were not immunocompromised, my values would keep me anchored here, in the reality of a world where COVID is a fucking horseman of the apocalypse riding unchecked abroad; where masking and other COVID mitigation measures are a moral imperative to protect not only those who are currently vulnerable and disabled, but the entire population—because all of us are potentially an infection or two away from getting as devastatingly sick as I have been.

We are the millions missing

Back in 2025, my Californian friend H. and I commune over Zoom with the intimacy of people who are grounded in shared reality—and who have accepted reality, who are not trying to outrun anything. On the little balcony outside her apartment, across the continent from me, she has taken out her guitar and is strumming open chords, singing softly; she is composing a song that invokes the field work she did as an anthropologist in Eastern Europe before the catastrophe of her disease made both travel and data analysis impossible. Meanwhile, I try to write.

Image via MEAction, an advocacy organization fighting for research and support for folks like the author who are sidelined by the underresearched and underfunded illness ME/CFS.

It’s easy for able-bodied people to conceive of how much we’ve lost—how much we’re missing out on—as disabled people. Though they tend to blame our disabilities for this state of affairs, while I blame a world that doesn’t prioritize access and support for disabled folx. But what isn’t as easy for them to imagine—what isn’t discussed as often, outside of disability justice circles—is how much the able-bodied world has lost because we, the missing millions affected by the mass disabling event that is COVID—as well as other health crises of colonialism and modernity—are not able to participate in it. Our genius is cloistered away—the genius we came into the world with, and the genius we’ve had to develop as disabled people. Genius that, as

Leah Piepzna-Samarasinha

writes, the able-bodied world badly needs.

“Disability is a set of innovative, virtuosic skills…. And this innovation, this persistence, this commitment to not leaving each other behind, the power of a march where you move as slowly as the slowest member and put us in the front, the power of a lockdown of scooter users in front of police headquarters, the power of movements that know how to bring each other food and medicine and organize from tired without apology and with a sense that tired people catch things people moving fast miss—all of these are skills we have. I want us to know that—abled and disabled.”
― Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice

As H.’s clear soprano vocals rise and fall across the continent, I think that, as disabled and immunocompromised people, she and I have no choice but to accept and live in reality. This is one of the backhanded gifts of disability. There are so many arenas in which capitalism and its associated systems of oppression strong-arm us into living in the holographic fever dream of, at best, ambivalent hypocrisy, and at worst, flat-out denial of what is real and true. When we shop at union-busting, war-machine abetting companies like Amazon. When we pay taxes that support escalating fascism at home and unthinkable genocide abroad. When we funnel our personal information to our oppressors through social media. We are acting contrary to our values and our interests. And we either have to live in the uncomfortable, grief-saturated ambivalence of that knowledge, or we have to do some mental gymnastics and pass into the fever dream of denial.

My illness robs me of the option of not living my ideals around disability justice, community care, masking and COVID mitigation. And, though I’m not always steady on my literal, physical feet, the moral alignment between my beliefs, my speech, and and my actions makes me feel rooted in the soil of reality in a way I do not experience in many areas of my life under late-stage capitalism. For that piece of it I am openheartedly, unambivalently grateful.