I’m incredibly grateful to be well enough for all this; a few weeks ago leaving my house would have been a health emergency, but on rapamycin this kind of stress is increasingly tolerable; so far no neuroimmune catastrophe (known as post-exertional malaise, or PEM, hallmark of my disease) has been triggered. That being said, I did not sleep well last night, and this morning I feel a bit like one of those stiff, slow, falling-to-pieces Romero zombies from Night of the Living Dead.

And staying with my parents highlights so many parts of my disabled life that are such a drag: it’s a pain in the ass to mask all the time, and I have to eat meals outside by myself like a child sent to sit in the corner and think about what her immunosuppressed body has done. And the amenities here are fucking wild; smart appliances, marble countertops, everything gleaming and pristine. Since my illness and my divorce, I’ve been in a state of grinding poverty; working has been out of the question, and moreover I need to attend to income and asset requirements to continue to qualify for healthcare. It fucking sucks. I chafe against the rank unfairness of the systems that order our collective lives, the values these systems carry, and what those values tell me every day about my value.

If you follow such things, you know that the feds and several states recently sued to reinstitute forced institutionalization for disabled people — and won. There’s a lot of great activist action happening as well and we’re not taking this lying down, but I can feel fear bubbling up from deep within my psyche, a miasma coloring everything, even when I try to put my mind elsewhere. Life is change, though, and, as Heather Cox Richardson observed in her last live YouTube politics “chat,” life changes on a dime. Or, as Thich Nhat Hanh put it, through impermanence, everything is possible. In 2013 the idea of breast cancer, which ruptured the timeline of my life in 2015, wasn’t even on my radar. In 2019 pandemic was an abstract idea, and I didn’t even know what ME/CFS and the alphabet soup of its related diagnoses were, let alone how thoroughly they would scramble the systems that my body depends on to maintain homeostasis, or how covid would hit me like a thermonuclear detonation.

After my spinal surgery in 2023 (due to complications from long covid), I thought I would die. Then rapamycin, the immunomodulating drug I depend on, appeared like celestial light breaking through stormclouds as an angelic choir aaaaaahs and aaaaahs in perfect harmonic euphony. Support for Palestinian liberation grew painfully, in struggle, and then exploded into popular awareness all at once. Science is moving toward better treatments for my disease—squinting in the glare of its own biases and sputtering on an empty gas tank for lack of funding, but moving, moving, and more pieces of the puzzle drop every day. The political status quo is teetering and toppling as the tectonic plates upon which it sits shifts and shakes, as the earth consumes and births the thin crust of rock and soil upon which we play out all our human and more-than-human dramas.

Life! What a preposterous fucking miracle to be here at all! It’s bonkers! It’s bananas! And, as Joseph Goldstein suddenly apprehended, during meditation, in a shock of insight: the impermanence of all things, that which makes everything possible, also means that anything can happen, anytime.

I’m still here, damnit. And you are too. Tomorrow has yet to unfold out of the singularity of the present moment. History is an arrow pointing toward likely outcomes, and narrative is the archer drawing back their bow and pointing the gleaming arrowhead in this direction or that, toward imagined outcomes, toward what may come next, conjuring into being what’s possible. Storytelling forms and changes the world across the axis of time. I am still here and I am imagining into a future where my life is abundant, where justice is a guiding principle, where twists and turns that I could never foresee have remade the world into something greater. Where I don’t have to wear a fucking mask around my family, where I can go out dancing, where I can dance and dance and dance.

This is actually kind of an appropriate analogy: I literally suffer from idiopathic intracranial hypertension (IIH), a tendency to produce too much cerebrospinal fluid, which squeezes my central nervous system and brain and puts pressure on the meninges, the delicate tissues that surround and protect them. IIH can trigger relentless migraines, grinding nausea, vision problems, and tinnitus, and can even cause cerebrospinal fluid leaks, a hellscape of dramatic orthostatic intolerance, mysterious fevers and infections, and — trigger warning for freakish, Cronenberg-style body horror — clear spinal fluid literally dripping out your nose. Chronic illness is a bitch.

Six thirty am. I wake up in a haze of confusion and pain, fumble at my nightstand for my morning meds, pop a sumatriptan — an abortive medication for migraine — squeeze an ampule of liquid cromolyn sodium, a prescription mast cell stabilizer, into a shot of water and toss it back like whiskey. I leave my “rescue” meds untouched in the drawer for now: Fioricet, witch’s brew of barbiturates, acetaminophen, and caffeine that will KO your headache but also leave you loopy and disinhibited; Benadryl, the med of last resort for mast cell activation; and benzodiazepines, which I use sparingly to mitigate really horrible crashes.

An hour later I’m pounding the rescue meds with strong, heady floral jasmine tea.

My last Substack posts have been about how much my health had improved. This one is about how quickly, since then, it has crashed and burned. And just like that (says the poet Sarah Jessica Parker) — I’m back in bed.

It’s been three weeks, and my body is still processing the trauma of a trip to a COVID-cautious dental clinic in a nearby city. I am grateful for an opportunity to get my teeth drilled (yes really) with less risk of catching a virus that could cause my immune system to go full-on Terminator on my body again, but even though I avoided getting sick, the daylong adventure was too much for me. The hallmark of infection-associated diseases like ME/CFS and long covid is a physiological crisis known as post-exertional malaise (PEM) or post-exertional symptom exacerbation — a state of neuroimmune and metabolic dysregulation, brought on by exertion, that can last weeks or months after a triggering event. This is the pit in which I now find myself.

And when my health takes a turn, as it is now, keeping my spirits up is both the most difficult thing in the world and absolutely vital for my survival. The best thing I can do for myself is to lean into gratitude; to try to remember, without bypassing the grief and horror and rank unfairness of my situation, how lucky I am — to have medical support, to have quiet and space to rest and recover, to have enough resource to cover my basic needs for food, shelter, and space.

At the same time, the undertow of despair just drags me. Partly because brain inflammation makes it really difficult, on a physiological level, to manage my mood. And partly because being stuck in bed is a dreadful brew of powerlessness, purposelessness, grinding boredom, monotony, and demoralization. I’m staring at the same buckling yellow wallpaper all day — it’s hard not to think of Charlotte Perkins Gilman’s protagonist slowly being driven mad.

And there’s a feeling — even as I push back against the idea of “progress” and healing in chronic illness — that I’ve regressed. Here I am, back in bed, as the clock of the year grinds its gears, ticks second by second through the ambivalent, capitalist dreamscape of holidays, into the deep dark of winter in the Northern hemisphere, into the gnashing maw of 2026. And I’m right back where I was in December of 2024.

But progress is a trap and healing is a con job

I try really hard not to think of my disease in terms of progress and “healing” because that’s a psychological trap, a white supremacist colonizer con job, a trick of ableism, part of the same cultural tendency that victim-blames sick people for being sick. “Healing” is not a steady state, it is not something that we can pursue and reach, grasp and hold: in fact, everything alive is in an ongoing process of disintegrating back into the living universe from whence we emerged, breaking down to constituent parts, ultimately reconstituting to participate in different and novel forms.

As the Buddha observed 2,500 years ago: we cannot avoid sickness, old age, and death. These are our birthright by virtue of being born at all.

But that doesn’t mean I don’t crave freedom, ease, comfort, and opportunity with every fiber of my now-bedbound being. Oh! The rank unfairness of it all! I want to run! I want to dance! I want to flirt with strangers and experience novelty, to see art and theater, to serve my community, to organize and to complain about organizers not fucking masking!

I had been feeling so much better and experiencing so much more freedom, enjoying so much more physical, emotional, and cognitive capacity. And now, as 2025 fades into 2026, I’m flat on my back again, running through my supply of frozen soups (thanks to my past self for making and freezing all the borscht in the world in preparation for just this kind of event), watching as the progress I’ve made in physical therapy drains away.

The year has turned. I think of Salmon Rushdie’s “clock-hands joining palms in respectful greeting” at the stroke of midnight for the children born at the moment of India’s independence — a brilliant metaphor that I will never forget.

Time turns weird when you’re stuck in bed. Time becomes strange and elastic and, I think, it definitely seems to be accelerating. I find myself wondering if my experience of a span of time is not absolute, but, rather, based on its proportion to my entire life — so a year at 45 seems way way shorter than a year at, like, 25.

I find myself wondering a lot of things.

A view from the wasteland

Greetings from the inflammatory wasteland of the ME crash — a dreamscape that is both vast and claustrophobic, where space and time invert and distort, where sudden and confounding symptoms split the sky like lightning, shake the earth like grinding tectonic plates. I don’t have the energy to scream, but inside, believe me, I am fucking screaming. My body wants so badly to organize itself in service of a task — walking, standing, sitting, folding the fucking laundry, making myself a goddamn sandwich — but each time I try to return to the increasingly distant land of normalcy, my disease punishes me with migraine, nausea, GI distress, brain fog, weakness, pain, and the electric buzz of adrenaline.

How can I practice patience? How can I practice radical acceptance of my situation make the best of the life I find myself in? Because this frustration is eating me alive.

The only way forward is to accept my situation with as much graciousness as I can muster — to stay within my physical capacity so that I can have more ease and suffer less.

To recall that life can change quickly. Things can change so quickly.

I’m trying to remember that.

And I’m trying to remember the absolute truth a life in bed is also a life worth living.

In terms of my writing, my most prolific periods have actually been times when I’ve been sick as a dog, stuck in bed.

That there is plenty I can do from here, plenty I can say.

To all my chronically ill siblings out there, staring down the barrel of 2026 in a strange and uncertain world — I see you.

“I am a flow-through of matter, energy, and information.”
-Joanna Macy, from World as Lover, World as Self

Life is so much weirder and wilder than I think it is.

Like something out of an old pulp sci-fi rag, caterpillars dissolve into goo in the pupa — and then somehow, in the absence of any known blueprint, reforge themselves, molecule by molecule, into goddamn butterflies, tear through chrysalis walls, pump open kaleidoscopic wings, and flutter away. Plants alchemize sunlight and air into sugar, which passes through their fibrous bodies and into underworld mycelial mutual aid networks that extend for miles. Cities blossom into being where highways and flight paths converge, chrome and steel towers catching the sunlight, bending gently in the high winds of the firmament. And then there are people! And weather formations! And consciousness! And art! What the fuck? This world! Where does it all come from? Where does it all go?

When I’m grounded in amazement, in the psychedelic preposterousness of any of this being here at all, it makes a bit of space around the terror and the threat and the fraughtness that seem to be tightening around our collective necks as my nation spirals deeper into nightmarepocalypse, as the planet on which my chronically ill body makes its home spins out into climate catastrophe, etc.

It helps to remember Joseph Goldstein’s lightning-bolt download about the radical implications of a universe defined by impermanence: that anything can happen, any time.

I think about that quote a lot these days.

October has accelerated into November, and I am starting to emerge from the chrysalis of homebound living. The neighbor’s beach roses are exploding with a furious extinction burst of pink blossoms — vivid pink, lurid pink, as pink as leotard in the 80s, floral nightclubbers showing up dressed to party just before last call. I am sitting on the big porch that wraps around the first floor apartment of the big old Victorian house in which I live, mostly sheltered by foliage that’s looking ragged and brittle as the plants hunker down for winter. Through gaps in the leaves I catch flickers of bright autumn sweaters and coats, snatches of earnest conversation, as people stroll by.

Everyone, I remind myself, is the main character in their own story. The young Orthodox mothers in their neat sheitels and long-sleeved coats making their weekly pilgrimage to the nearby synagogue with their families; the kids on streaking by on scooters, shrieking with Saturday morning glee; the 20-somethings with their earbuds, their short blunt bangs and wide-legged jeans; the power-walking middle-aged women pumping their arms, moving in tandem, discussing something or other intently. Even the plants, growing to the rhythm of sun and rain, yearning up toward the clear blue sky, rooting down into the soil.

Things are changing.

Recovery is a warm gun

Before I was homebound, I was bedbound for almost two years. Until very recently, my nervous system was pretty constantly overwhelmed by post-exertional malaise — the state of activity-induced neuroimmune crisis that characterizes ME/CFS, the infection-associated illness I acquired after a COVID infection in 2020 — for much of the time. My life was very small: The slow-motion explosion of migraine, the blur and buckle of words on a page, the chewy resistance of energy bars, the glow of the phone screen under a tented duvet, the wallpaper in the far upper corner of the room buckling under dried yellow paint, frozen like that, as if cast in amber.

Slowly, that’s changing.

With a combination of low-dose rapamycin (currently in clinical trials as a treatment for both ME/CFS and long covid) and microdoses of GLP1 agonist Mounjaro (a drug usually used to treat diabetes, which shows incredible potential as a treatment for chronic fatigue and long COVID), I’m out of bed and out of what we in the ME community sometimes call a “push-crash cycle” — a vicious trap where we muscle past our energy limits just to get by, and then get struck down by our illness, then have to push too hard again to “catch up” from the period of enforced rest. (Rinse, repeat.)

I’m still pretty physically limited, still mostly tethered to my apartment, but now I have a physical therapy appointment once a week, and, while the graduated exercise programs typically prescribed for health people are inappropriate for me, my body is slowly gaining strength with on a combination of manual therapy and gentle, functional movements that designed to build stability in my core, hips, legs, and spine.

I drive myself on short errands. Last week, I showed up at an outdoor birthday party thrown by a friend from the local Mask Bloc.

My life is starting to open up again.

But ME/CFS is a jealous god

But just because my limits are shifting doesn’t mean they aren’t as draconian and punishing as they ever were.

This is a lesson that ME/CFS teaches me again and again and again.

Today I woke up to familiar grinding, migrainous pressure in my head and spine, as if the menages — those delicate tissues that surround the central nervous system — were crawling with flesh-eating maggots. The migraine associated with my PEM is not the clean pain of a burn or slap; it is a kind of systemic nausea, as if the entire entity of the nervous system is convulsing, trying to vomit. As if the body has been infiltrated with some caustic poison.

My mind’s sensemaking engine does what it does: ruminating, telling stories, placing blame. I’m sick because I went out two days in a row. No, this is because I tried to add gentle spinal twists to my physical therapy routine. Explaining itself to itself. I curl on my side, elbows and knees tucked in like the little legs of a cooked shrimp, and moan.

Sometimes it’s clear what causes an ME/CFS “crash”; other times, trying to figure out why I feel like my body has been steamrolled and left in the sun to rot is like trying to understand the logic a jealous, capricious, old testament creator-god, whose whims — like the natural world they whispered into being — can’t be predicted or controlled; whose fables and cosmogonies are riddled with glitches and contradictions and ancient grammars that we cannot parse.

Healing is snake oil, recovery is a scam

The paradigms of recovery and healing — the idea of “health” as a steady state that we can lose and then return to — are a scam. That’s not how life works. We are systems in motion, in dynamic tension and balance; the body is constantly blooming with new life, and also disintegrating where it stands, in every moment. We are metabolic engines, consuming, becoming, transforming, letting go. Every body will disintegrate and we will end.

And sometimes it feels so dangerous to think about the idea of healing — an idea that is so delicate, contingent. My body systems are finding balance now — but that balance is so dependent on medications, in a world that feels so precarious, so unstable, where abstractions like tariffs and supply chains could suddenly gel into concrete catastrophes that keep me from getting my basic needs met — what if my access to medication was compromised? — like lightning striking from a darkening sky.

But today it is sunny and gorgeous, cold. It’s late afternoon. I’m sitting in the sun on the little rooftop outside my apartment, typing on my laptop, thinking about precariousness. Thinking about how hard it is, as I gain a little bit of capacity, not to use every bit of energy my body produces in the course of living my life, to collapse at the end of every day in a pile of dysregulated nervous energy — essentially working myself to the point of injury, and ultimately undermining the recovery I’ve gained.

It feels like a lifetime of conditioning is pushing me to do just that.

Capitalism and Myalgic Encephalomyelitis

A weird, backhanded gift of this disease is that it essentially forces us to resist, or deprogram from, the insidious, extractive work ethic of white supremacist capitalism. People with ME must learn to prioritize the needs of the body over the needs of the culture and systems that are trying to extract capital from bodies — or we will deteriorate and die. My illness has forced me to embrace an ethos that, in the context of my society, is revolutionary: an ethos that elevates the needs of the body over the needs of capitalism; that prioritizes rest. Every day, my disease forces me to integrate that ethos, through my actions, into my daily life.

And, as my health improves, that process of integration continues in new contexts. Now that I can leave the house, what does driving short distances look like as a person with extreme energy limits? Can I go to the store ? How slowly do I need to walk, and what mobility aids do I need to bring with me? And if I do go to the store, do I need to spend tomorrow in bed? These are things I’m learning.

Most of all I’m learning that when, like ghosts from an old life, my muscle memory of moving through the world as an able-bodied person kicks in, I need to catch it by the tailcoat and be vigilantly mindful of my limits — because this disease has no mercy.

Disabled oracles & stories that hold nuance

Impermanence means I don’t know the future.

Even as climate crisis escalates and healthcare systems buckle and break, it seems that science is slowly gaining on my disease. Every time I see my ME specialist she has something new for me.

That being said. The idea that “healing” is some kind of prize — and, by implication, that a disabled or chronically ill life is worth less than any other life — is some capitalist, eugenicist bullshit. As I noted above, bodies are constantly changing, constantly moving, constantly in flux. All life eventually collapses into death. Health, and life itself, is not a steady state. Sickness and pain are inevitable.

Illness and pain are harsh and terrible teachers. And I’m very wary of any kind of discourse that tries to extract lessons or meaning from suffering or to glamorize pain. And yet, dancing with prolonged, severe illness has deepened and refined my understanding of myself and my world; it has brought my thoughts, beliefs, and actions into alignment, in ways that I value. Illness can be a of refining fire. Many of the wisest and kindest people I know are people who have also touched, through the experience of illness and disability, the truth that we are impermanent beings.

And disabled folks have a unique perspective on the culture from which we are often functionally excluded; for example, many of us can see the fever dream of pandemic denial more clearly than able-bodied folks who are caught up in the rush and momentum of the collective body. Disabled lives, simply by defying norms and resisting extractive expectations, are disruptive, and those disruptions are potentially revolutionary. It is only from the margins that the mainstream can be seen as it is.

My fellow ME and long covid folks — I see you. I love you. You don’t owe the world anything. In the words of Judith Butler: We all deserve to be here by virtue of being here at all. And yet, when we share our stories and what we have been forced to learn, I belive we are sharing medicine that our world needs — and that our own disabled communies need.

And I believe there’s a lot of hope right now. So much new research is being done. Relief for our suffering is in the pipeline.

Thanks for reading my ramblings.

Thanks for being with me on this journey.

Yesterday a local newspaper, The Providence Eye, published an article I wrote about the intersection of the long covid crisis and the local healthcare crisis. In it, I tell the stories of four people in my home state who are struggling to find care for long covid.

You can start reading here and find a link to the full article below — or click here to read the full article now.

Please meet me in the comments and let me know what you think about local journalism, personal storytelling, and where there is a need for stories about chronic illness to be told!

Caught Between Crises: Long COVID Patients Struggle to Find Healthcare in Rhode Island

In early 2020, Ariana, now 32, of North Providence got sicker than she had ever been in her life.

“We were kind of hearing whispers about COVID then, but thinking it wasn’t here yet — when it almost certainly was,” she recalled.

Her acute illness cleared up in a couple of weeks, but her troubles were just beginning.

Ariana, a therapist, had just opened her private practice when lockdown hit. As she saw clients via Zoom from her home office, she began to experience what she interpreted, at first, as a mental health crisis.

“Suddenly I was having panic attacks multiple times a day,” she said.

Her doctor suggested that she was reacting to the heightened stress of the pandemic. But then, Ariana began experiencing intense pain in her neck, upper back, and tailbone, along with dizziness and difficulty thinking clearly — symptoms that came on when she stood, and subsided when she laid down.

She would later learn that this phenomenon is called orthostatic intolerance, a disorder of the autonomic nervous system that develops in a significant number of long COVID patients.

“It wasn’t until I started experiencing physical pain that I started thinking, ‘Oh, this is bigger than I thought,’” she said.

A historical perspective

Post-viral illnesses — lingering or chronic conditions triggered by a viral infection — are not new. Scientists have documented and studied post-Ebola, post-West Nile virus, and Post-Epstein Barr (mononucleosis) syndromes, as well as post-viral syndromes connected to SARS, a close relative of COVID-19.

“If COVID didn’t cause chronic symptoms to occur in some people,” microbiologist Amy Proal of the PolyBio Research Foundation in Medford, MA told Vox in a 2021 feature, “it would be the only virus that didn’t do that.”

Read the full article here.

Thanks to a new, experimental medication protocol—low-dose rapamycin, which has been shown to alleviate symptoms of ME/CFS and is being studied as a treatment for long covid—my capacity is increasing at a rate that dazzles and amazes me. Today, I can stand at the stove scrambling eggs, sit outside watching birds flirt and people go by, visit with friends on Zoom—and even, if I’m careful, in person—take my little car out on short jaunts around the neighborhood, and write with focus and intensity that was impossible mere months ago. My activities of daily living no longer routinely throw me into the neuroimmune crisis known as post-exertional malaise (PEM)—a melange of flu-like symptoms, crushing fatigue, migraine, systemic inflammation, and dysregulation that is the hallmark of ME/CFS, the multisystem, postviral disease I developed following a COVID infection in 2020.

And—shockingly—as I emerge from the chrysalis of my so-called bedbound era, the world I left two years ago is still here, turning and raging and churning in all its strangeness and contradiction, right where I left it in 2023—except now the fascist accelerationists are in charge and everyone is wearing low-rise jeans.

There’s a bit of a Rip Van Winkle feeling. A kind of HG Wells’ Time Machine surreality to it all. I’ve clearly passed through the portal of Alice’s Looking Glass, because things that seem familiar at first glance are, when examined closely, surreal and fantastical.

“Has the world changed, or have I changed?” Morrissey asks on The Smith’s 1986 track, “The Queen Is Dead.” Of course, Morrissey, like the country I live in, is and has always been fascist. When I was a sheltered teenager in the 90s, scrambling to get my tangling, babyqueer legs under me like a newborn colt, throwing that track onto a mix tape for my girlfriend between “Life on Mars?” and “Cornflake Girl,” I had no idea. I didn’t know anything at all.

But now, today, here in my home, my feet are steadying underneath me.

I am even beginning—very carefully—to leave my home. Last week I met my family for lunch at a restaurant with a sprawling outdoor patio strung with fairy lights. I sat upright, masking intermittently, at a quaint wooden picnic table, gamely avoiding butt-splinters while we ate tacos with our hands and sipped water out of tiny plastic cups. When I got home I fell into a dead sleep for the rest of the afternoon, but the activity did not throw me into PEM the following day. It felt like a miracle.

I know in my bones that all of this is contingent. Rapamycin, the medication that is driving my dramatic improvement, is dosed once a week, and as I get farther out from my weekly dose I feel my newfound capacity begin to waver like a mirage.

That being said—my improvement has been cumulative and steady. I am better every week, and every week the “dip” between doses seems less pronounced.

But I’m not going to move the microwave

One daily reminder of the fragility, the contingency, of my recovery is the kitchen setup in my bedroom.

There is a small silver microwave on top of the hardwood bureau that houses my shirts, pajamas, socks and underthings. I keep a post-it note taped over the digital display so I don’t have to blink blearily at it at 3am. Beside it, crowding my jewelry and knickknacks, is a squat mini-fridge. Throughout the night, its motor sparks to life, whirs with activity for awhile, and then settles back into quiet.

I hate having kitchen appliances in my bedroom with the viscerality of a child who does not want the different foods on her plate to touch—it seems like a violation of some basic boundary of civility. The bedroom-kitchen is a monstrosity, an uncanny valley of domestic life. Perhaps I have epigenetic memories of plague-carrying vermin skittering over my bedclothes in a Medieval serf ancestor’s one-room quarters. Perhaps the kitchen appliances are just a reminder of the not-too-distant times when I was unable to leave my bed to prepare meals. Either way, I’d very much like to move the kitchen gadgets away from the place where I sleep.

But I live alone, and I have a devastating, energy-limiting, post-viral illness. Another viral infection or an episode of overexertion could very easily send me back to bed. And in the event that I enter another crash, it’s important that I have food within reach, because the less active I am during these periods, the more likely I am to recover the capacity I’ve lost.

I know how bad things can get. I can’t unlearn that.

So the microwave and mini-fridge stay. Humming and whirring through the night, digital display glowing, blind, like my very own chronic illness Eyes of Doctor TJ Eckleburg.

Radical acceptance

I facilitate a peer-led dialectical behavior therapy (DBT) group for disabled and chronically ill folks once a week. DBT is a therapeutic modality that kind of re-articulates Zen Buddhist practice in the language of cognitive-behavioral therapy. Our little group wrangles and reworks DBT skills through a critical, anti-ableist lens that accounts for the reality of our lived experiences as disabled people—we find modifications and workarounds to make skills accessible for those of us who can’t, for example, go take a walk when we’re feeling stressed.

For the past few weeks, we’ve been working with a set of practices known as reality acceptance skills. The idea is that when you encounter a situation in life you don’t like—that you feel you can’t tolerate, can’t live with, absolutely can’t stand—and you can’t change the situation, you need to do some internal work to accept the reality of what is happening if you want to move forward with effectiveness and skill. You don’t have to like what’s happening, or condone it, but raging against a situation that you absolutely can’t change, or acting as if reality is different than it is, will ultimately just make you more miserable. This idea is not dissimilar from the sentiment expressed in the Serenity Prayer used by Anonymous groups.

Chronic illness demands highly sophisticated reality acceptance skills. As sick people, there is a lot about our experience that feels unacceptable, unlivable, unendurable, and that we are powerless to change. We may wish so keenly for our bodies to function with more ease and less pain, for our physical limits to be other than what they are, that we act out based on how we want things to be, rather than making wise decisions based on what actually is. But if we act in defiance of our limits—say, by going to the party, binging the season finale, eating the bacon cheeseburger, attending the wedding or funeral or bar mitzvah or whatever it is we want so badly to be able to do, that our delicate bodies cannot sustain—we may ultimately get sicker.

Acceptance is a moving target

But acceptance can be a moving target. Very little in life ever stays the same; reality shifts out from under us all the time. Especially for those of us who have dynamic, evolving chronic health conditions, whose baseline capacities change—sometimes gradually, and sometimes as suddenly as falling over the edge of the world.

As my baseline evolves, I am finding that the limits I previously had to accept as unchangeable are themselves changing. As my capacity increases, my reality is shifting, disorientingly, out from under me.

I’m no longer largely confined to bed. But the world I lived in before my surgery—when my disease was mild enough to permit daily walks around the neighborhood, spontaneous trips to the store, and casual outings with friends—is not my reality either.

When I was stuck in bed, my life was extremely circumscribed, but it was also predictable. I knew what I had to accept, what I could and couldn’t change. Now, as I explore the landscape of my new baseline, I find myself living in this weird friction of intense desire and unwanted limits, of tentative action and skeptical amazement, bouncing between frustration and delight, helpless anger and openhearted gratitude. Navigating triumphs—driving myself to the park! And disappointments—crashing into the brick wall of a migraine the next day from overexertion—and shifting, confusing expectations.

This evolving state of things is disorienting. I am experiencing a kind of ontological whiplash. The topography of my life feels strangely unsettled, like the primordial Earth in Disney’s Fantasia hardening after the drama of volcanic upheaval.

Hovering over the precipice

And I’m keeping the kitchen appliances in the bedroom, because one reality I know I have to accept is that I am always hovering over the precipice of severe illness.

I may be exposed to a virus next time I see my grubby, adorable niblings—who are under six years old, and live in the through-the-looking-glass universe where covid spreads unchecked in crowded preschools. The dental work I’m supposed to get at a covid-cautious dental clinic in September might crash me and send me back to bed for a week, or a few weeks, or more. And soon, I am slated to try in-person physical therapy—which might crash me—in a facility that does not encourage masking—which might get me sick. And my yearning to build community, to enlarge my world, puts me into contact with greater risk, as I interface with people and events that could exhaust me or activate my hair-trigger immune system with an infection.

I have to accept that I live in a world that has decided that my life is disposable—that the death and disability of “vulnerable populations” is an acceptable price to pay to return to the illusion of a pre-pandemic status quo. (In a quieter way, the world has decided that everyone’s life is disposable—research shows the risk of developing long covid, including severe postviral disease like mine, increases with every exposure to the virus, and this does not become less true because the culture refuses to talk about it. In addition, covid increases the risk of developing diabetes, heart disease, and other chronic health conditions, as well as awakening metastatic cancer—more inconvenient intel the culture isn’t willing to integrate. But I digress.)

I have to accept that, in a country whose leadership is malicious and unstable, that wants to snatch healthcare away from its most vulnerable citizens, and does not believe in regulating the private sector, I might lose access to the medication that is changing my baseline and opening up my life.

I have to accept that I cannot know the future.

Our shared mortal predicament

Of course, no one can know the future.

I have observed before that, as a planetary system, we’re always just an asteroid event away from total annihilation. All human beings face danger, illness, old age, and death. My illness has woken me up to the fact that my safety was always an illusion.

We are all vulnerable—not only to covid, but to all manner of catastrophes, all the time. I sometimes wonder if, when people say that covid impacts only vulnerable populations, it is the discursive equivalent of fingering a magical talisman that they hope will keep them—the presumably invulnerable—safe.

Yesterday I was watching this ridiculous TikTok video by a thin blonde white woman who had clearly slid pretty far down the wellness-to-fascist pipeline. She was very upset, really activated, and while I think the topic of the video was technically anti-vaccine, what she was actually talking about was how her practices around food—“clean” eating—were keeping herself and her children safe from harm. The spitting vehemence of the video should have alarmed me, especially in the current political climate, and it did, but I also felt this weird, ambivalent swell of something like sorrow. She spoke with a kind of frantic, blind frenzy, like someone who is terrified that if she slows down she will have to face the reality of our shared mortal predicament. Does this woman think she can keep herself and her children safe in this random, reckless, brutal world, if she is only conscientious enough about controlling her diet? Doesn’t she know that we are, by nature, contingent beings? That everything, everything, depends on billions of factors that not only can we not control, but that we cannot, with our limited human imaginations, begin to account for or apprehend?

Collectively, we are living in a time of emergency—of climate emergency, of the threats of rising fascism and the extinction burst of white supremacist colonialist capitalism. The contingency of human life is broadcast on Instagram reels as witnesses livestream starvation and genocide in Gaza, and ICE’s atrocities in American cities, in real time. We are all connected. The mental contortions it takes to tune out the rising thunder of collapse must be intense.

I’m currently doing a round of interviews for an article profiling some local folks with long covid, and one thing that comes up in these conversations, again and again, is that chronic illness teaches us the contingency, the preciousness and precarity, of life. It forces us to radically accept the fact that our lives can change—or end—in an instant, and that there is so much that we do not even begin to control.

And, while severe chronic illness itself is a prison, passing through that portal of acceptance can bring, for many, a measure of dizzy, existential freedom—the opposite of whatever it is that traps that woman in the video, that keeps her frantically shoveling down kale or whatever the latest trend advises to stay one step ahead of the snapping jaws of mortality or whatever. Again and again, my interview subjects report feeling, even amidst great physical suffering, greater peace, contentment, and gratitude after experiencing chronic illness than they did before.

Crash bam alakazam

Last Thursday I left the house to see my neurologist at a big hospital downtown. The hospital is an ordeal, with bright lights, frenetic activity, and a baseline level of urgency permeating the scene. The appointment demanded intense focus and attention; my adrenaline rose and my heart rate soared and my sodium levels (according to my blood work) dropped.

And this week I’m crashed. I’m not stuck in bed—“crashed” today (generally) means something very different than it did six months ago—but my heart is fluttering like a trapped, broken-winged bird against my ribs and my head aches; my limbs feel leaden even as my body buzzes, paradoxically, with restless energy. When I stand up my heart rate spikes precipitously; my head seems to teeter on the unsteady tower of my body, and my thoughts quickly cloud like a smoggy sky.

So mostly I stay down, stretched out on the day bed in my little home office with the cat, too wired to rest, too tired to focus, too fretful and fitful to be content.

It could be so much worse. It has been so much worse.

And yet—as I cancel a the first date I’ve had since my divorce two years ago—I chafe against the limits of my predicament.

Radical acceptance is a moving target. I’m juggling gratitude and grievance, more than I can hold in two hands.

It’s July 4, 2025, early morning, and I’m sitting at the threshold, at the place where the tiny foyer outside my apartment opens up into the little flat rooftop outside. The neighborhood hasn’t yet started waking up. The weather is gorgeous, sunny and cool under clear blue skies. Last night’s rain rinsed the smog from the air, left little souvenir puddles, which are now shrinking in the sunlight as the rubber rooftop warms. Leaves move gently in the breeze. I sip hot tulsi tea, careful not to scald my sensitive new dental work; failing, I press my palm to my jaw as if to hold back the rush and roar of sensation. Meanwhile my cat, Thisbe, terrorizes a moth, slaps it flat on the rooftop and watches it wobble like a six-legged drunk.

It’s amazing how life goes on in the presense of grief. Life in its leisure, its pleasure, its horror and its fury. Elsewhere, everything, everything is on fire. Here, the air is warm and clear. The Earth should be standing still. Instead, for the moment, at least, life just…goes on.

Last night was a doozy. The sadistic Republican bill passed. Then I spoke to an ex I just can’t quit for juuuuust long enough to rip open the stitches on that already-weeping wound. Then I summoned my determination and a spoon and dug all the almond brittle chips out of half a pint of ice cream—which, now, the next morning, as I try to write through the blood sugar hangover, I regret.

Thisbe crouches low behind a twiggy potted rosemary plant, tracking birds in flight with fully embodied attention, pupils wide as dinner plates, nose twitching, the delicate satellite dishes of her ears rotating, calibrating, attuning, correcting. Am I even capable of such intense focus? I watch her, loving her, my brain flicking through emotional channels like an old radio. That poor battered moth—should I have intervened? What would it like to be as remorseless as a cat? I appreciate Thisbe’s skill and attentiveness. And the mechanistic genius of evolution, its weird, agentless intelligence. And the capacity for feeling that, within these natural processes, somehow arises within us. What strange creatures we all are! What incongruous beings! Philosopher Gilles Deleuze describes living beings as desiring “machines”: phenomena that take in matter, information, emotion, and ideas, and, through unique, opaque internal mechanisms, transform them. Eco-philosopher and disability activist observes something similar: that the body is a doorway through which matter, energy, and abstract notions pass on their way to becoming something else.

I don’t fucking know. One takeaway of the psychedelic near-death experiences that come with that physical chaos of complex chronic illness is that life is ineffable, phenomenal, astonishing and bizarre. In latin the word mirus (gen.: miri) means both strange and wonderful, astonishing and extraordinary; I wonder if that’s close to what I’m trying to express.

So what do you do when grief gets so big?

My world is trying to kill me

It’s Wednesday, July 9, and today I’m fully outside, looking out over the neighborhood like a benevolent rooftop sprite. The sky is overcast and the air is dense, muggy, stagnant, but at least the temperature has dropped to the low 80s. The past few days have been an assault of sun and high temperatures, forcing me to retreat into my little home office with the window air conditioning unit cranked on high and Thisbe the cat always on the wrong side of the closed door. There was an intense storm last night, and though the rain abetted hours ago there are still puddles on the roof; the atmosphere, already saturated, politely declining to take the water back. It’s supposed to storm again tonight, and there’s an unstable feeling to the world, as if the barometric pressure is flickering; as if the clouded dome of the sky, the biblical firmament, is threatening to crack.

The world is trying to kill me. Disabled people. Queer people. Folks who rely on government benefits to survive. The world is trying to kill people I love. Immigrants. Black and indigenous folks. Sex workers. Trans people.

I learn about starvation and genocide in Gaza and Sudan through the rank surreality of Instagram reels sandwiched between advertisements for supplements that will cure what ails you and an eyeliner that will give you that perfect winged tip. I read about the American concentration camp in the Everglades—but have to contextualize that myself, in my own mind, against the broader backdrop of mass incarceration in the United States, because the journalist doesn’t do it for me. I come back to myself and am surprised to find that my heart is still beating.

A certain 50s sci fi classic notwithstanding, the Earth does not stand still for any of us.

From my rooftop perch I watch a rabbit, well-fed and complacent, hop on oversized haunches across my neighbors’ summer-lush lawn and flower beds. My neighborhood is overrun with rabbits. Unlike their rodent cousins, the grey squirrels that tear across open spaces, race hand-over-hand up the trunks of trees, the rabbits seem confident, fearless.

How long do rabbits live? A summer? A season? Google says one to two years. I wonder where they go after the utopia of summer. I wonder what they eat. I wonder what they think of humans and streets, white picket fences and roaring cars, stone garden walkways and artificial boundaries dug between flower beds. The rabbit’s eyes gleam like black marbles. Its ears pivot and its nose twitches with refined, alien intelligence. What is consciousness like inside such a body? Across the fathomless gulf of species, the rabbit and I consider each other.

Even a wounded body

It’s the next Wedesday, July 16. I’m out on my rooftop almost every morning; as someone whose disease makes physical exertion dangerous, this is the safest way for me to casually access to outdoor space. Today I’m typing on the tiny Bluetooth keyboard I have hooked up to my fiddly iPad because my computer is in the shop. The computer also has chronic health issues: from time to time, the keyboard just stops working. Of course, the problem usually disappears by the time it goes in for repairs. The flavor of being dismissed by the Apple repair bros is similar enough to the flavor of medical gaslighting that it makes my whole body vibrate with inappropriate, but understandable, traumatic fear and rage. I try to see the humor in the parallel.

It’s only 7:00am and the morning is temperate, but muggy, hazy. The threat of afternoon heat hangs over the neighborhood like a close, sweaty palm cupped just beyond the dome of the sky. The sky itself is dishwater blue, mottled with washed-out cumulous clouds. Through the haze I can just make out the ghostly outline of the waning gibbous moon, lopsided and pale, ripe fruit hanging crooked in the morning sky. My neighbor’s orange day lilies reach toward the eastern sun with petals like grasping fingers. Below, a man walks slowly, carefully by, pushing a rollator ahead of him; he has a long white Gandalf beard and wears the black formal garb of an Orthodox Jewish elder. I push down the complicated feelings that come up when I see someone so visibly Jewish on the street—a clench of fear and vulnerability; the push and pull of solidarity and disavowal; and a set of fraught notions about assimilation and identity, faith and survivor guilt, secularism and safety, that I inherited, that I do not claim, but that nevertheless reside within me—and simply send metta, the Sanskrit word for lovingkindness, to a disabled comrade.

I could probably make it down the block, even without a mobility aid, but the subsequent crash would be swift and fierce. Watching my neighbor make his slow way past, my muscles twitch with envy. I miss movement so much that when my mind lingers on the topic, a fraught keening feeling rises through my core. The ease and flow of walking, of mind sinking into body, perceptual apparatus open to my surroundings—like watching a Tarkovsky film. The restful feeling of letting my consciousness be a passenger, soothed by the rhythm of my steps, as the scenery of neighborhoods, of quaint forest paths, of the riverwalk by my parents’ house flows by.

I miss my yoga practice. I miss collaborating with gravity, testing gravity, the dynamic tension of a body held still between the press and pull of opposing forces. The thrill of inversions, of hands flexing, broadening along the sticky yoga mat or the grassy earth, the wrap and quiver of shoulder muscles, the intelligence of abdominals firing, adapting, making small corrections in real time to keep me upright. The bare act of moving my body in complex ways, the back-and-forth connection between ideation and gesture—brain receiving feedback from body and making small, improvisatory corrections in real time. I miss the feeling of my muscles pleasantly fatigued, my body’s complex, interpenetrating systems appropriately challenged. That is now impossible for me.

Chronic illness gives us so much to grieve! I miss the company and intimacy of friends who backed slowly out of my life as I got sicker, because my suffering was too much or my need was too much or because having to contend with the hovering spectre of their own mortality was too much. I miss feeling—and being—reliably able to fulfill commitments. I miss competency, achievement, worldly accolades. I miss dressing up in a statement outfit, stepping into the yellow light of a familiar neighborhood bar and belting out vintage Lana Del Rey on the karaoke stage. I miss the sweet thrill of banter with strangers. The rhythm and flow of a good party. I miss cutting my little car across four lanes of traffic with my heart in my throat, vibrating from head to toe with thrill and threat. I miss being able to experience the full range of human emotions, including excitement and fear, without also feeling my nervous system’s brittle incapacity to hold peak experiences—knowing that the rush of stress chemicals will almost certainly trigger a crash.

I try to be present for the grief I feel. I hope I can be okay with whatever comes. I try to remember that my wounded body, like my wounded world, still offers great capacity for joy. That it is the miraculous, contingent basis for this life.

Whether my physical capacity increases or not—disability has radicalized me. In ways that I value and for which I am grateful. Disability has mirrored my values back to me and has forced me to live in alignment with them. Of course I want to inhabit my body with more freedom, more ease, more strength and pleasure. But I also know, and can never unlearn, that every bit of this life is contingent; that I am always a viral infection away from bodily catastrophe; and most of all, that it is everyone’s responsibility to care for the most vulnerable among us—not because of some abstract principle, but because that is what resistance to a politic of fascist eugenics looks like, and if that politic is allowed to endure, it will eventually come for all of us. No matter how healthy you feel now, wellness culture is not your friend. Old age, sickness, and death are an inevitable part of being human. A world that does not protect the most vulnerable of its people will eventually crush you, and those you love, under the treads of its war machines, too.

My neighbor and his rollator pass beneath the sightline of my house, continuing on their way. I wish him well. I wish all of us well.

May all beings everywhere be free.

Grief is a portal back to the present

It’s the next day—Thursday, July 17. For those of you who fuck with astrology, Mercury, the planet that is said to govern communication, thought, social exchange, and information, stationed retrograde today. That means that, from the perspective of those of us on Earth, its bright little dot in the sky appears to slow to a stop, and then reverse direction. In absolute terms, it is moving, as it always does, in elliptical circuits around the sun, but perspective is everything, and humans, as Deleuze observed in the early 1970s, are meaning-making machines.

And speaking of machines—and as if in deference to Mercury—my computer is still in the shop.

Today the air is muggy and moisture clings to my skin like grubby toddler fingers. (No shade on my niece and nephew, whose grubby toddler fingerprints are entirely worth the grossout factor.) The sky, though, is pale eggshell blue, with magestic, voluminous, painted-on cumulous clouds that invoke the Sistine chapel ceiling—except that they’re in motion, changing shape, passing over and under each other, like something alive. Here on the ground, it looks like they’re moving in slow motion, but I know that up there it is all wind and chaos, freezing cold and fantastic speed. I often think about the frigid chaos of the upper atmosphere, how you’d never know, from the Earth’s surface, what it is like up there, out there, where the envelope of gases that protects and sustains us begins to fade into the vacuum of space.

I know, too, that the rhythms and feedback loops that regulate the Earth’s atmosphere are disrupted and chaotic in the wake of the climate crisis.

The strange thing about grief is that the Earth doesn’t stand still for it—life doesn’t stop when it’s clearly supposed to. Somehow, we continue enduring through the unendurable. And in that paradox, there is the potential for alchemy. Transformation. A paradigm shift. A radical return to the present moment.

In bringing us into intimacy with the unthinkable, grief also offers us greater access to the sublime—to the degree to which we can be present with it. Author Francis Weller articulates this in The Wild Edge of Sorrow, his book on grief and grief rituals:

“There is some strange intimacy between grief and aliveness, some sacred exchange between what seems unbearable and what is most exquisitely alive. Through this, I have come to have a lasting faith in grief.”

Sometimes I close down and zone out. But if I can’t be present with grief, I can’t be present with Thisbe and the rabbits and the neighborhood. I can’t be present for my own emotions. It’s not easy to stay present, especially for the ways in which I’m implicated and caught up in the systems of oppression that structure much of our lives. And sometimes the wisest and kindest thing I can do for myself is to dissociate and flip on the TV. But sometimes, I can be present for all of it.

Stretching toward the sunshine

Today is Sunday, July 20th. This morning we have full-on rain, and I’m glad of it, because the plants in my neighbors’ gardens are absolutely living it up. I swear, when it rains like this, you can see the plants turning animate, pulling in water from the air through their leaves, from the earth through their roots, water rushing through stems, plumping leaves, dribbling off delicate flower petals in a way that makes me think of myself, as a 20-something kid in Chicago, running around the city park with my friends in the pouring rain, barefoot, pumping up supersoakers, chasing each other down, throwing water balloons that could not possibly get anyone wetter than they already were. The delicious transgression of running barefoot on urban grass. The irrepressibility of our aliveness.

I imagine myself as a plant, soaking up the rain. Pulling in nourishment with the urgency of life sustaining and perpetuating itself.

I can feel how urgently my body wants to live. I want to let it.

I don’t know if I’ll be able to run like that, full throttle, fully embodied, ever again—the way Thisbe, hunting moths, fully inhabits herself. I know my muscles long to stretch, to contract, to spring. I also know that such an exercise would land me in bed with nightmarish neuroimmune dysfunction for months.

I have a lot of faith in the scientists that are working on the problem of my disease. I practice hope. And every day that I’m on low-dose rapamycin I feel stronger.

I think about the grind and churn of my nation’s news cycle, with it’s stark, dazzling flashes of triumph and audacity: a socialist New York mayoral candidate; the breathtaking courage of whistleblowers; the fierce, holy rage of AOC shouting down mustache-twirling supervillains on the House floor. I want to be present for that, too.

Sitting in the doorway, at the threshold, in this body—this miracle of collaborating, multiplying, metabolizing, competing, and disintegrating microorganisms that together, somehow, coproduce my living, emergent self—enjoying the cool mist of rain on my toes, my arms. My phone tucked in my left hand, I hover my right index finger over the screen, considering.

I am experimenting with dating apps.

In these times? Seriously?

Yet, like the plants in a garden on clear days, even in this hurting world, I find myself stretching toward the sunshine of my desires.

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A few resources I’ve found helpful in my own work with chronic illness, individual and collective trauma, and grief

• Toni Bernhard’s classic text, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. This book is an invaluable resource for coping with a range of difficult experiences that come with being very ill.

• Jonathan Foust’s Body-Centered Inquiry course, via Sounds True, helped me to reconnect with my body during the worst of my illness.

• Stacey K. Haines’ The Politics of Trauma: Somatics, Healing and Social Justice offers a politicized somatics that is especially relevant for folks doing movement work, but I think is important for everyone.

• Resmaa Menakem offers transformational analysis and somatic practices to help folks unpack and process the traumas of white supremacy.

• The Lotus Institute and Dr. Larry Ward offer support grounded in the practices of Zen Master Thich Nhat Hanh for processing grief and embodied racialized trauma.

• Love and Rage and the work of Lama Rod Owens.

• Abigail Rose Clark’s book Returning Home to our Bodies is a great resource for those interested in a deep dive into somatics. A recording of chapter 8, “For When the Heart is Breaking,” is available for free online.

“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

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

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.

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 writes, the able-bodied world badly needs.

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.

Sometimes, the dissonance between the two is disorienting. There are also strange, vivid points of convergence, where the two realities shimmer and merge—where private and public intersect—where I am personally impacted by the destruction that’s being wrought in the public sphere. See: my struggle to figure out how to stay fed and resourced as a sick and disabled person living in an unmitigated, ongoing pandemic. Sometimes I picture us all as flies caught, suspended, in the ratty old cobwebs of systems that were always, already extractive, punitive, and destructive, but are now also being actively being torn apart by white supremacist tech bro spiders, leaving us still trussed up, swinging pendulously, perilously, from torn and tearing threads.

On helplessness

When I was diagnosed with breast cancer at the age of 35, I responded the way a lot of people do: by heading to the library. Unlike the understudied, highly contested matrix of complex, multisystem chronic illnesses that I live with today, cancer has ecosystems of literature around it that can really help situate someone who is newly diagnosed.

In an otherwise forgettable book whose title and author I can’t even recall—some vaguely upbeat work about cancer and holistic health, which let me tell you is a genre—I encountered an idea that rang in my head like a fucking bell. The book cited a study that looked at the relationship between breast cancer and the very specific experience of helplessness. The author suggested that extended experiences of helplessness sometimes precede the development of cancers like mine.

I have no idea if this correlation is real, and I have no real skin in the game. But the idea stuck with me because it so exactly reflects my experience. My breast cancer diagnosis was preceded by several years of feeling intensely powerless, helpless, and trapped.

I’m thinking about helplessness now. I’m thinking about the way that it’s braiding my experiences of public and private life together.

Because helplessness is something so many of us are experiencing as we watch the fascist techbroligarchy attempt to erase our identities, deprive us of our basic rights, and take a sledgehammer to systems that we depend on to stay alive.

My lousy ex-spouse won’t answer my texts

My lousy ex-spouse. Oooh I seethe. We’ve been divorced for a two years now, and haven’t talked for six months, but we’re still entangled. His car is registered to my address, and every day incoming mail brings more envelopes for me to add to his pile of delinquent parking tickets. I still use his Netflix and Hulu accounts, and his Amazon Prime.

Things are better now than they were last year, when I depended upon him in ways that made my throat tighten, my head go light, and dread spread its fingers through my guts—when financial deadlines he was responsible for passed in a blur like roadside attractions on the way to somewhere else, and the passive-aggressive lout would leave my texts on “read” for weeks.

The physical sensations of disempowerment are very hard to bear. Helplessness would rise in my body like a red tide hissing toward the high water line. More than anything else, I felt thwarted. I was angry, sure. But my feelings were closer to anguish.

Gripping a hot coal

Several years ago I had a profound conversation about anger with an old friend.

My friend said that learning to embody anger was a breakthrough for her. She experiences anger, she told me, as empowerment. I didn’t identify at all. For me, the experience of anger is the opposite of empowering: it fact, it is almost always deeply connected to the experience of helplessness. Anger is the urgent need to act coupled with the thwarting of that need; a fire lit with no oxygen to consume; energy with nowhere to go.

My ex wouldn’t answer my texts, and I couldn’t make him.

The Buddha famously said that getting angry at someone else is like gripping a hot coal and expecting it to harm your enemy. And that’s how I often feel. Blocked and disempowered. Helpless. Like the fire is burning me.

When your basic needs aren’t getting met—say, as a disabled person in a culture that constantly screams at you that it is a mEriToCrAcY and that wealth confers worth—in the capitalist womb that has nurtured the so-called Law of Attraction, the absurdity that is the Prosperity Gospel, and the toxic concept of bootstrapping itself, it is hard not to internalize the bones of that logic, and to begin to wonder if not getting your needs met is, in itself, evidence that you are undeserving.

Aside from, you know, Maslow’s basics, the most urgent thing in my life is deprogramming from that insidious, internalized logic of the capitalist colonialist white supremacist ableist superculture.

Disempowerment, helplessness, is insidious in so many ways. Here’s one: it paradoxically pushes us to sympathize with our oppressors. When we’re disempowered, in an effort to get our needs met, we may become experts at empathizing with the folks who hold the purse strings, supervise the factory floor, carry the ring of keys. If we can understand them, maybe we can convince them. Maybe there is there some means, some indirect means, through which we can influence them and get what we need.

Here’s another way that disempowerment gets insidious: it can lead to a twisted form of self-blame, of victim-blaming. We ask: is the oppression I’m experiencing the result of something I did — and, by implication, is it something I can undo? Am I actually, unbeknownst to myself, at fault for this — and thus — and here’s the weirdly seductive part — am I also empowered to make things right? That thought experiment is a trap. The notion that we actually are empowered is the cheese. The ruminating self-blame is the trap that snaps shut behind us.

My elected leaders won’t answer my texts, either

Sometimes the combined experience of helplessness in my private life and in the public sphere is almost unbearable. My story and my nation’s story seem superimposed holographically; their common themes glow with shared resonance.

It’s only 10:00am in the small east-coast city in which I currently, somewhat unwillingly, reside, and the sky is white and mottled as merengue, but already the temperature is pushing 80 degrees Fahrenheit. From the POTS-friendly recliner I’ve set up on the rooftop outside my second-story apartment, I watch the neighborhood prepare for a day that promises to be a scorcher. Tree branches and daffodil heads wave in a gentle breeze. An oversized rabbit lops lazily across the street. Catty-corner to me, behind her white picket fence, my neighbor aims a sprinkler head at a flower bed. Looking up, catching my eye, she waves, and I return her greeting.

I’ve been pretty much housebound since my surgery in July of 2023. I try to keep my discontent in perspective—I was bedbound for about a year of that time, and my ongoing recovery, though grindingly slow, is also miraculous to witness. But sometimes, feelings of helplessness, and even helpless rage, overwhelm me, take my breath away. It’s hard to breathe when we feel disempowered. Unmet need can lodge in our airways like a foreign object.

Last weekend, in particular, was very hard for me, when so many of my friends and comrades took to the streets in massive protest against a government that is taking a wrecking ball to the already meager safety nets on which I depend; that is replacing science with doublespeak; that is sending masked fascists to abduct members of my community. “No Kings Day” was a space where public and private narratives of catastrophe converged. A space to which I, as a disabled person, did not have access.

Saving the world from the inside out

In a recent episode of her podcast, How to Survive the End of the World, adrienne maree brown said that when she feels helpless to change the larger systems in which she is embedded, she recalls that the nature of this world is fractal—that systems of white supremacy, colonization, patriarchy, and violence exist on all levels, including inside of each individual. And that, when she feels discouraged about the process of dismantling larger systems of oppression, sometimes the best thing to do is to narrow her lens, and to focus on dismantling those same systems as they manifest inside herself, or inside her close personal relationships.

I’ve been thinking about that a lot, lately. In many ways, particularly when I was very severe and mostly stuck in bed, chronic illness forced me to narrow my focus dramatically—often all I could hold in my consciousness was my pain and the struggle to manage it.

And yet, within the cauldron of that struggle, dramatic transformation took place. This was the context in which I unlearned, on a profound, somatic, experiential level, values of white supremacist, ableist capitalism that assign worth to bodies only based on what they can produce and how they look. My beliefs about the inherent value of life, about dignity and entitlement to care, were refined and deepened. The experience was profoundly decolonizing. I emerged from the chrysalis of my Bedbound Era with more softness, more ability to embody the kind of community and world that I want to live in.

I bring these changes to my relationships, to my writing, and to my activism today.

Everything matters. Nothing is lost.

We cannot choose our conditions, but we can often choose to meet the moment we are in with integrity.

To my friends and readers who are too sick to do much of anything right now: I see you. I love you. You matter. The smallest choices you make from the microcosm of your bed matter.

Everything matters. Nothing is lost.

On the little rooftop outside my apartment the sunshine is incredible. In late afternoon, the black rubber surface puts off all the heat it’s stored up from the day and I’m soaking it up, belly to the ground, back to the sun, past the threshold where the warmth makes me uncomfortable, feeling a bit like a condemned prisoner on a last trip outside.

I know this rooftop intimately. For about two years, before I regained the ability to do stairs, this was the only outdoor space I had access to. From my POTS-friendly, beachy recliner—or flat on the rooftop, like today—I surveyed the neighborhood like a princess in an urban tower, spotting for chronically ill Prince Charmings.

I roll onto my back, lay a forearm over one eye to block the glare. Overhead, lacy strips of cloud process across the blue. The sun pulls sweat out my pores and vanishes it into the air. My heart races and my immune system surges according to its own peculiar rhythm, its own innate wisdom—or chaos, or some combination of both. I have no choice but to surrender, to trust my body to find tenuous balance.

The discipline of embodiment

Today, I am sick. I mean, not just with the usual chronic stuff—I picked up a virus or something at the dentist last week. So far I am testing negative for covid and the flu. But my hair-trigger immune system is firing on all cylinders. I sniffle. The buzz of adrenaline pulls me out of my body, into loops and vortices of thought—mostly grumpy, anxious thought, because that’s how this cocktail of stress chemicals hits my poor brain. Eventually the thoughts pop like the ephemeral bubbles they are and I realize that my shoulders are jacked up around my ears, my toes curled into claws, my abdomen hard like the muscles are clutching something precious to my core.

I quickly, mentally scan through my body; my muscles release and a layer of pain lifts.

When I was at my sickest, I did a lot of body scans. This wasn’t a nonchalant pastime, it was a forced move. Only deliberate, repetitive, focused relaxation provided even a modicum of relief from the agony of the inflammatory cytokine storms that were overwhelming my body.

One paradox of my autoimmune stuff—a form of mast cell activation—is that it seems to ask me to be fully embodied at a time when embodiment is absolutely the last thing I want to do, because oh, my body is not a pleasant place to be. But dissociation makes my symptoms exponentially worse. Without active presence, my sick body clenches and contorts, as if trying to crumple itself like paper. Relaxation requires embodied, mindful awareness. Which means no TV, no zoning out. It means being there for, and tending to, the pain. My body, in its hours of need, will not be abandoned.

This is both a kind of torment, and the most effective spiritual training program I’ve ever encountered. The amount of patience, discipline, clarity of purpose, and straight-up self love I have had to develop—kicking and screaming—because of my illness, because of these experiences, astonishes me, takes my breath away.

And I would never wish these experiences on anyone. And I’ll say again, to anyone looking to map meaning into the constellation of anyone else’s experience: suffering is bullshit.

Illness is metaphor

My doctor calls my disease presentation “hyperadrenergic.” Most folks with chronic fatigue syndrome experience crushing exhaustion, something far beyond tiredness, something akin, I have gathered, to the lead-limbed, mind-numbed, poisoned feeling that I experienced during my dance with chemotherapy when I was in treatment for breast cancer.

My body does something a little bit different. When it hits the brick wall of ME/CFS — which has something to do with complex positive feedback loops involving nervous, immune system, and mitochondrial dysfunction — rather than collapse like you’d expect, my system panics and squirts out stress chemicals to keep things going. I get edgy and tweaky when I get sick. My migraines are laced with endogenous speed. When I stand too quickly, my blood pressure spikes. Restless insomnia eats me alive. This makes it counterintuitive—not to mention torturous—for me to rest. And total rest is the only way out of the hell of an ME/CFS crash. Bummer for me.

It doesn’t escape me that the logic of my disease mirrors the ways in which I trained my body to react to stress for most of my life as an able-bodied person under late-stage capitalism. For the first half of my life, I was ruthless with myself. Fuck your exhaustion. Fuck your overwhelm. Do more. Push harder. I was the college kid fueling double-header all-nighters with little blue saccharine Adderall tablets. I was the young professional driving herself to the point of breakdown rather than admit that her pressure-cooker job was a terrible fit. I was the it-girl hitting up the after-hours nightclub, thrashing to darkwave music, frantic, eloquent, feverish in my skin.

My sick body is a weird conceptual space where the literal and the metaphorical can become confused. They run into each other, bleed, like watered-down paint.

Is it significant that the hyperadrenergic patterning of my illness mirrors the ruthless patterning of my former, habituated lifestyle? Is there a link here—did I train my nervous system to respond this way to stress? Or is the connection I’m making only a metaphorical echo?

It’s important not to confuse metaphors with the reality of what’s happening in the body, not to become attached to them or to drift into magical thinking and decide they are accurate models for the hard science of it all.

At the same time, these analogies are important. adrienne maree brown was not the first person to observe that patterns in nature repeat at scale. And the body, like everything else — the sick body can be read like a tarot card, like a divining rod pointing to truths that need to be known.

Nothing in nature is still

Nothing in nature is still. (Unless, Annie Dillard’s classic essay tells us, you are in the path of a total eclipse.) The next day, the tweaky terror of my autoimmunity has faded into the dull throb of a rather mundane head cold. It is afternoon now, and it is raining. Around the little flat little rooftop outside my second-story apartment, tree branches bend, leaves shimmy in the wind, and rain shimmers on the blacktop where my potted plants keep company: early strawberries bob their hard little green heads, bursts of hardy green mint, colonizing a long green planter like the fate of the world depends on it, flutter in the spray, and a single, juvenile rosemary sprig sticks straight out of its little plastic greenhouse-issue pot like it’s on the lam from a kitchen bouquet garni. All swaying, hovering, like the rain is a dance party, a club night we’re all invited to.

I sit in the doorway, sniffling, inhaling the damp. Remembering a time when I would have indulged in a smoke.

Have you ever seen a stop-motion film of a seed sprouting into a plant? The force, the struggle, with which the green stem bursts from the cocoon of the seed and forces its way out of the soil and up, up, into the air, is astonishing. There is something fundamentally relatable about that primal drive toward life, growth, the nourishment of the sun. Leaves stretching, reaching like fingers. The furious urgency of new growth.

We all just want to live, all of us.

Exeunt on community care

My brother brought by a loaf of bread this morning. Sourdough spotted with fat kalamata olives, from the bakery down the street. I dip slices of toast into a red lentil soup I threw together a few days back when I realized that illness was hitting and I’d need it. Later in the afternoon, an envelope packed with bright pride stickers from a friend who lives 1000 miles away arrived with the mail. I stick some on the big white cabinet by my desk.

I think of everyone in my country who is out protesting today. My heart is with you. Stay safe. Stay righteous. And thank you.

I can’t do newspaper work without thinking about Lois Lane, Girl Reporter. So I’ve been clicking through old comic strips from the 40s and 50s. Clark Kent is boxy and chiseled. He takes up so much damn space. Meanwhile, Lois is a delicate sparrow with moxie, who’s pushy as hell, who’s a little delulu, who’s making it on her own merits in a man’s world. The joke is on you, Lois—you could never get these headlines without Superman’s hand on the small of your back.

There are fault lines underlying these stories. Clark’s secret identity turns on a pair of glasses that no one, least of all the pushy girl with gender-complicated ambitions and a nose for news, can see through. (Well Clark, being Superman, can see through just about anything besides lead, L-O-L.)

Clark is gentle and patronizing with Lois. Lois is competent—for a girl—and good-natured, all-American Clark doesn’t hold it against her. She is a bit of a shrew in the workplace. And in the weird, supernatural world of Metropolis, crawling with criminals and swarming with supervillains, She is a hostage situation waiting to happen. She’s constantly storming straight into trouble, even mortal peril, in search of the next big scoop—trouble from which square-jawed Clark, usually in his Superman persona, sans glasses, avec perfect spit curl, easily, patiently, good-naturedly rescues her. Clark is gentle, sometimes teasing, watching more than he lets on, knowing way more than he lets on. Lois is earnest, brash, transparent, and absolutely self-serious.

The premises of these stories are unsustainable. I mean, they can never play out to their logical conclusion, because if they did, the scenarios would pop like bubbles. One inevitable breakdown point is the ridiculousness of Clark’s disguise: Sooner or later, one would think, Jimmy will stumble into Clark and knock off his glasses and dishevel his hair his secret will be out: Clark and Superman will superimpose in the minds of the Daily Planet staff until it suddenly becomes clear to everyone that the two men are actually one.

Then there’s the gender politics of it all: if Lois’ romance with Clark ever moves up the relationship escalator, Lois’ career situation will fall apart. This is not a world where wives are permitted to work. Lois’ character, defined by a desire to stay in the newsroom, will either have to transform on a dime, or begin pushing for the kind of social change that authors Jerry and Joe are clearly not ready to take on, that you would not expect to see coming from someone with the epithet “Girl Reporter.” (Though I think “Women’s lib comes to 1940s Metropolis” would make a hell of a storyline.) Lois and Clark’s love story is a carrot we’re chasing, but if we ever catch the carrot, the ground they’re standing on will crack open and break.

I hope it’s clear that I’m kind of musing out of thin air, here. I’m not really well-versed in these works. (Don’t come for me, fanbois.) I assume the folks at DC Comics handled these breakdown points with varying degrees of grace and clumsiness at different points in Superman’s 87 year, multidimensional, omniverse-straddling history. And I’m sure Lois and Clark’s dynamic is wildly different, or at least somewhat different, now, today, than it was in the 1940s. After all, the world has changed.

Or has it really?

Spoonie Girl Reporter

I’m pushing myself too hard. The fantastic thing is that I can push myself at all. My body and mind were on such a short tether for so long that, now that I can dig into projects, it’s hard to stop before I crash myself.

So let me tell you about this project. I’m working on a story for a local alt weekly about folks who are still masking in my area—our concerns and challenges, our values and triumphs. The story is really important to me, and of course caring ratchets up the pressure. I write. I edit. I make calls. I worry. I wait for callbacks. I edit. I worry. I write.

I’ve written before about pacing, pacing as a devotional practice, pacing as a way of being in right relationship with the body and all the complex associated systems in which it is embedded. (For the uninitiated, pacing is a term that folks with energy-limiting illnesses use to describe the often frustrating and tedious practices of managing our limited energy, generally by restricting our mental and physical activity. It requires patience and care, and can feel frustrating and demoralizing when you’re really passionate about what you’re doing, or just really need to clean the damn kitchen, but the energy reserves aren’t there.) Pacing has been a huge challenge over the course of this project. Rather than finding a sustainable rhythm of work and rest, I find myself buzzing with adrenaline, working right up to my energetic edge, and then spending the next day or two sick in bed.

This “push and crash cycle” is a lifestyle that exacerbates my disease and can make me sicker in the long run. But overwork, urgency, and perfectionism—part of what author Tricia Hersey calls “hustle culture”—are such a deep part of my personal and cultural conditioning that these habits been extremely hard to unlearn.

One of the weird gifts of being this sick is that unlearning this stuff is no longer optional: in fact, my life, or at the very least my quality of life, literally depends on unlearning this stuff. On finding new ways to work, and to be in relationship with work. And rest. And ego. In a culture where ego and work are twisted and tangled together like parasitic vines competing to strangle a tree. And I guess in this analogy the tree is the body, the self, the human organism that at its most basic level just wants to live, thrive, experience connection and joy.

So, as much as writing this article is an exercise in journalism, it’s also an exercise in auditing, reimagining, and beginning to repattern the way I work.

Your edge is your center

I’m pretty sure it was who said that the way to change is to find your edge—the uncomfortable boundary that defines the limit of what you think you’re capable of—and practice hanging out there until it feels more like your comfortable center. It’s a cryptic little bit of advice, but one that I’ve been turning over in my mind like a lucky penny as I work on this project.

There are so many ways in which this project is asking me to do things that are edgy. Cold-calling busy doctor’s offices fishing for quotes. Interviewing strangers about their masking practices. I channel Lois Lane, Girl Reporter, all moxie and sass and strange, bullheaded obliviousness, who doesn’t give even one fuck for anything but the story, who would never in a million years let something as insignificant as an inhibition get between her and the big scoop. And before and after these excursions to my edge, I sit and breathe, settling my poor nervous system—already materially fried from my autoimmune condition—with heart-centered practices, invoking sensations of belonging, sitting until I feel settled.

But the pacing. When will I learn to pause and rest before I slam into the brick wall of my limits? When will I learn to plant my feet, sink into my center of gravity, so when my illness yanks the rug out from under me I have a chance at keeping my footing?

This is another kind of edge. I am working it with as much patience and grace as I can muster. And it feels like I’m getting nowhere.

Something has to give.

The narrative problem of Superman

Superman! Can you imagine? A jawline like an Easter Island slab and a physique to match, soaking up radiation from Earth’s yellow sun like man-shaped, damn-near-omnipotent vegetation, getting more powerful with every photon. Characters like Superman create a narrative problem for writers because they can do pretty much anything. Resolve pretty much any crisis you can throw at them with super strength or laser vision or by flying backwards around the equator until the planet starts spinning in the other direction and time itself reverses. So, if you want to write a good Superman story, the first thing you have to do is incapacitate Superman. Then the narrative train changes tracks from “how do we solve Problem X” to “how do we get Superman back on his mighty feet so that he can solve Problem X without much trouble because he’s fucking omnipotent?”

I wouldn’t be omnipotent if I weren’t chronically ill. But a whole lot of things would be a whole lot easier.

Still. I’ve written elsewhere that being sick creates a kind of psychic pressure cooker of urgency and intensity that seems, in some strange ways, to focus my creative work—whereas, when I’m healthy, I’m more likely to get distracted, procrastinate, wander off.

Disorder at the Dentist! by Jerry and Joe

I go back to the dentist tomorrow. Another trip downtown, another ceramic crown, another potential exposure to COVID, another 1000mph peel into the outside world that will register, to my myelin-stripped nerves, as a prolonged high-octane throat-tearing scream. Look at me, mixing my metaphors like cake batter. (Don’t come for me, fanbois.)

Wish me luck, ladies and gentlethems.

There’s a sense in which the elements of my life seem to be spinning around me in slow motion. I picture it like a scene in a comic book. Myself, hair blue-black, toes pointed, floating in space, with the detritus of my days—laptop, phone, bed and desk, books like strange headless birds, earbuds trailing lazy wires, so many orange pill bottles, rainbow electrolyte packets, loose supplements flying through the air like Lucky Charms in the commercial—and, of course, the highlighter-yellow temporary crowns that my dentist 3D printed and stuck onto lower jaw.

Severe chronic illness deprived me of routine and predictability for several years. As I begin to emerge from that chrysalis, suddenly able to move, within constraints, under my own power, my life has few guardrails. There is disorientation. Giddy gratitude. Full-throated presence. The sudden weight of seemingly insurmountable logistical obstacles. I am ravenous for life. And there is a feeling that I haven’t yet found the ground beneath me.

And life is tenuous. It always was, and it always will be, but right now it seems like there are so many ways everything could suddenly go sideways. And there is so much suffering around me that I cannot open to it sometimes. I try to cup each moment in my hands like water, holding without clinging. Responsive to what is. Accepting what life gives me without entitlement or the type of resentment—as distinguished from genuine grief—that makes you feel like poison. Responding with wisdom and as much courage as my traumatized body will carry.

It doesn’t feel like enough.

Kryptonite

I remember from old episodes of Superboy (1988-1992) that kryptonite comes in a rainbow of colors besides green, and each sabotages Superman’s super physiology in some surprising, dastardly, creative way.

Today is dentist day. It’s 6:50 in the morning and I’m holed up in my blanket fort, the safest place in the world, hoping that my life doesn’t change irreparably, whether due to an unfortunate encounter with a cloud of airborne virus or because my body can’t drum up the energy to go through with the excursion.

In all likelihood I’ll be fine. But sheesh—the things I used to take for granted.

I finished the first draft of my article last night. I’ll leave you with one of my favorite quotes from the piece.

“There are two tracks when a horrific thing happens. People can get more callous and dissociated—or they can let themselves be broken open. When you’re dissociated you can’t be present with any of it. When you’re present, you can be present with all of it.”

My sincere hope for my writing, generally, is that it can help create space for people, myself and my readers, to open to life—beautiful and terrible, calling us to presence and to action.

Now, basking in relief wrought by experimental medicine, my body’s innate intelligence, and time, I’ve graduated, I tell my friends from the chronic illness group chat, from bedbound to housebound, and I’m getting stronger every day. ME/CFS is a chronic condition, and I will always live with it in some form. But this period of severe illness seems to be easing. I sit outside in the sunshine in the mornings. I stand at the stove whisking polenta. I gab on the phone with friends. I climb up and down my perilous front stairs, sometimes with the support of my hands, like our four-legged mammalian ancestors, to fetch the mail—and, as the weather gets warm, to see the faces of friends and family in the warm natural light of spring. In the absence of persistent pain, the mundane details of life are pure pleasure.

Meanwhile, the body politic of which I am part is losing a game of chicken with fascism. I sometimes feel this strange sense of doubling, as if collective events are a shimmering heat mirage over the material reality of my daily life. The superimposition of dread and horror over joy. The paradox of collective catastrophe colliding with the concrete details of the mundane world. The echo of existential threat bouncing oddly off the smell of bread browning in the toaster, of tea steeping, of sunbeams casting bright squares on the floors of my apartment under the windowpanes.

Waking up

I like to think that I’m somewhat tuned into the zeitgeist of the larger organism of which I am part. But I didn’t predict the outcome of the American presidential election last November.

In large part, I see this as a reflection of my own privilege, and a kind of sleepy complacency that capitalism reinforces in individuals at every turn. Despite the extreme events that have shaken us awake to the emergency of the times we’re in—catastrophic weather events, the ongoing global pandemic, the rising tide of fascism across the world, genocide televised in real time—many of us manage to shrug off any alarm bells that aren’t blaring in our immediate vicinity, roll over, metaphorically speaking, and go back to sleep.

Now, it is impossible to stay asleep. I am vividly awakened to the fact that the United States is split into two completely different macro realities: the one I inhabit, and the one for which right-wing news functions as both projector and mirror, a portal and a gateway. Like many leftists (and liberals), I stay away from those portals because they freak me the fuck out.

The Tower has no chill

For the past few months, in the course of my regular Tarot card practice, from the blanket fort at the center of my queen-sized bed, I’ve found myself pulling—or noticing when I’ve pulled—The Tower card. That little ping in my brain—oh, you again? Intuition and synchronicity, like a psychic bell.

The Tower is, I think, the card of the Tarot’s major arcana that has the least amount of chill.

A jagged bolt of lightning bursts out of the sky, blowing a stylized crown off the top of a tall, narrow building with a kind of brutalist prison vibe in a burst of red and yellow fire. Flames also pour from the tower’s windows as grandly dressed figures, also crowned, careen, upside-down and flailing, through darkened cloudy skies toward bare jutting rock. The air itself is full of flames fashioned in the shape of the Hebrew letter yod (which Anglicans Arthur Edward Waite and Pamela Coleman Smith seemed to think were okay to just throw in there with no cultural context, but whatever).

The Tower has been associated with the Biblical Tower of Babel. It is human hubris breaking against reality. Often when the Tower shows up it indicates that something that was already structurally unsound—a relationship, an actual building, tectonic plates, an unsustainable way of life—is collapsing spectacularly and completely. The Tower is a good archetype for the loss of a job that was never a good fit, or for a bursting “bubble” in a financial market, or for the shocking reveal of a truth that was there all along.

In classical Tarot interpretation, the The Tower can ultimately serve the greater good: it is a wake-up call and a corrective, cleaning up the lag between delusion and reality, adjusting for overreach. A mighty punctuation mark to a sentence that was already functionally over, a necessary culling, the cutting away interior rot or gangrenous flesh, the clearing of the old for the construction of something new.

But that isn’t much solace when we’re in the chaos of the adjustment itself, like the figures falling through the air. The most vulnerable among us may not survive the chaos and violence of a fall.

Gifts of the Tower

The last Trump presidency, combined with the early days of the COVID-19 pandemic, were a powerful collective Tower moment. As the infrastructure of modernity faltered and life as we knew it ground to a stop, as we watched white supremacist and misogynist violence in action from the isolation of lockdown, a lot of people were shaken awake: some white people rallied for Black lives in a way that they hadn’t, collectively, for many years; the #metoo movement ignited and gained momentum. On a local level, mutual aid networks and mask blocs spontaneously organized; protesters and attorneys joined together to stop deportations; and there was an outpouring of support for medical workers and those on the front lines. These were the actions of a collective shaken awake.

And when the alarm bell quieted, the collective kind of drifted back to sleep. Capitalism swirled back up from the depths to grab most people and pull us back under.

Metaphors from my Bedbound Era

At the height of my Bedbound Era, my nervous system buzzing with caustic static as my immune system surged and flailed and sicc’d mast cell mediators—substances that power the immune system’s cascading aggressive actions—at my connective tissue and nervous system. I picture a mad battlefield, berserk war machines firing off into the sky, scarring the landscape, tearing great gouges into each other’s flanks, machine guns spinning like tops on squat tanks, helicopter blades colliding in space, smoke curling, mud flying, rockets splitting the sky. At such times, the apparatus of my awareness sputtered as if with shorts, but remained ruthlessly, mercilessly online. Buzzing with stress chemicals, unable to rest, unable to think, unable to process even gentle sensoria, I would lie in the quiet dark for hours or days, more bored than I have ever been in my life, carried to the very edge of my capacity to endure, and dropped over that edge—only to find that somehow, impossibly, I was still enduring. Not to be dramatic or anything.

These were, no exaggeration, the hardest times of my life. And they’re not even very satisfying to write about, in the way that some kinds of ordeals can be, because, as I’ve said before, the physical suffering of chronic illness is fucking senseless. There’s no narrative from which to draw meaning, no lesson, no story, no catharsis for reader or writer. I think about the great initiations of epic fiction and fantasy: Odysseus conning and scheming his way home through mythic Mediterranean oceans; Frodo and Sam crossing vast swathes of hostile country on their sturdy hobbit feet to cast the One Ring into the fires of Mount Doom; and how, in their aftermath, these quests took on shape and meaning; they became the scaffolding for songs and stories that inspired generations of readers.

In contrast, the suffering of chronic illness is bullshit.

Suffering wakes us up

However, during this time of terrible suffering, something happened to the quality of my consciousness—and subsequently, to the way I created and worked. As I emerged from the depths of my illness, I felt wide awake, fully, deeply, unambivalently connected to my own values and desires, the vital life-force that Audre Lorde terms the erotic. My awareness was sharp and clear. I felt animated by a sense of urgency and purpose. It was as if my personality had streamlined, aligned, as if extraneous vanities, ego-distractions, worries about how I may come off or about what others may think, about whether I have the right to say thus and such or who the hell do I think I am, had been burned away. Leaving me free to just…create.

Like many of us, I struggle with insecurity and imposter syndrome, and the attendant deadweight of writers block. And suddenly, following this period of extreme restriction, I was free. I gave literally no fucks. And for the first time in my life, my writing practice flowed. Consistently and cleanly. I felt like a clear, open channel. The work was fire, and as my body began to gain strength, I had only the offer space and oxygen and for it to burn a clean swathe across the page. My vain and fretful ego finally just got out of the way, and in the space work began to emerge, as if by magic. The fraughtness, the procrastination, the preciousness and handwringing and indulgent fuckery that clung to the good ship creativity like barnacles, slowing her down to the point where she was often functionally grounded, seemed to have fallen away. I began work on a memoir. I wrote feverishly, publishing essays to my Substack, without fail, every other week. And there was a kind of rhythm and easy grace to the way I worked.

But, as my strength returned, that feeling of streamlined clarity began to fade, and the fraughtness and fuckery and mental blocks started to creep back in. As if my traumas and insecurities are swirling up from the deep waters of my unconscious to grab hold of me. I found myself writing less and worrying more. Watching more bad TV. Texting my bad-news ex for the dopamine hits. Wasting precious life-energy on trivia in a way that would horrify my sick self.

“We meet death fully alive”: integrating the gifts of The Tower

Last year, during my early convalescence, I met with a grief group on Zoom every Sunday morning. We were six former strangers who gathered to read Francis Weller’s The Wild Edge of Sorrow together, using the book as a kind of an anchor for what essentially became a process group, in which we collectively held compassionate space for each member to speak about our personal experiences navigating grief and trauma, healing and relationship, integration and letting go.

The title of this section is lifted from chapter seven on Weller’s book, in which he speaks to something that’s very close to the kind of streamlining and clarity that I’m talking about as a consequence of fully comprehending the reality of death. Weller sees this profound realignment with our most basic values and priorities as a gift of death—as an upside and after effect of a brushes with mortality.

As I get further out from the depths of my health crisis and find myself struggling with writers block again, feeling the friction of petty, everyday irritations—restlessness and torpor, craving and annoyance, insecurity and doubt—what the Buddha called the Five Hindrances that stand between the human mind and its enlightened nature, fwiw—I struggled to hold onto the sharp clarity, focus, and vivid aliveness that I brought back with me from my underworld journey.

So here’s my question: How can we integrate the clarity and urgency, the alignment with our deepest values, that emerges during those times when everything is falling apart? Can we—as individuals, as a collective—hold onto insights that Tower moments offer when we do not feel the blade of imminent threat against our necks? Can we use these insights to inform the world we are building and rebuilding without maintaining a constant state of emergency? How do you remember clarifying moments in times that are calm?

As my personal crisis quiets, and the collective crisis escalates, I sit with this question. I don’t know the answer.

Meet me in the comments!

I would love to hear your thoughts on Tower moments and waking up, on the senselessness (or backhanded gifts) of chronic illness, or anything else this brought up for you.

I. You can dissociate, but you can’t hide

I binged the last three Star Wars movies over the past few days. You know, the ones where Adam Driver, as brooding antihero Ben Solo/Kylo Ren, plays basically the same narcissistic abuser that he plays in Marriage Story?

Driver, 31 years old in Star Wars: The Force Awakens, is 6’2”, striking, and intense, with the kind of resonant, baritone voice that carries in crowds and seems pretty standard for Sith Lords (see: James Earl Jones’ Darth Vader). He also has the unconventional good looks of an exotic breed of shorthair cat.

Driver plays the toxic boyfriend character an awful lot. In addition to his roles in Star Wars and Marriage Story, there was his breakout performance as Lena Dunham’s love interest in Girls — and I haven’t seen Girls, but I absolutely did ask Google’s creepy AI whether his performance in Girls was on brand, and received the following reply:

In Star Wars: The Force Awakens, as the adversarial courtship between Driver’s character and his love interest, Jedi hero Rey, unfolds, there’s this moment where Driver offers Rey his hand and, in an effort to persuade her to be his Dark-Side-of-the-Force girlfriend, pulls a line out of the abuser cliché playbook:

“You come from nothing. You’re nothing. But not to me.”

This kind of pick-up artist shit should be a dealbreaker. But for Rey, it’s not. The movie’s mythology does some work to justify Rey’s attachment to Ben/Kylo: the two are twin flames “a dyad in the force” — mystically, psychically connected across time and space. Sure, their dynamic is based on manipulation and violence. But what’s a little toxicity between star-crossed lovers?

The chemistry between the characters during this scene, incidentally, is palpable. You could cut the tension with a knife. You could detonate it with a whisper.

Gazing into the portal of the television screen, I tell myself: You can dissociate, but you can’t hide. No matter where I go, the themes of toxic, coercive masculinity are there. They run through politics, art and journalism, and personal relationships. Patriarchal violence is endemic to the culture. Of course it comes up in films — the culture’s waking dreams — in these ambivalent forms.

And of course I respond to it with ambivalence.

II. Texting my ex, part I

There is something in me that is compulsive and habitual — and that, after awhile, becomes calcified and blind to the very logic of pleasure and reward according to which its circuitry was wired in the first place. The circuit that wants to text my ex doesn’t care that I no longer actually want to talk to him. Just like the circuit that wants a cigarette can’t seem to organically connect with the fact that, when I encounter it in real life these days, cigarette smoke grosses me out. What even is addiction? Ghosts in the mechanisms of decisionmaking, cognition.

I can’t unlearn his number. I can’t unremember the way he sometimes makes me feel. The flash of the lure and tug of the hook. Memories with barbs. You know the negativity bias they’re always writing thinkpieces about, how it’s supposed to be something like five times easier to recall negative experiences than positive ones? I call bullshit. Craving shreds that paradigm to tatters. My craving mind pours over moments of triumph and tenderness, connection and care, like collectible novelty cards; the carnage around those moments gets blurred to smoke.

I know better. But the heart wants what it wants. Or, as my friend (and addiction professional) sometimes says: Where there’s dopamine, there’s hopeamine.

III. Romantic-comedy behavior gets real-life man arrested

If you squint hard enough, heterosexual courtship rituals and harassment behaviors can sometimes pretty easily be mistaken for each other. Sometimes, the difference between cute and creepy is whether the person on the receiving end of the conspicuous workplace-delivery of flowers, or of “our song” blaring outside their bedroom window in the dead of night, is consenting to the attention.

There’s a persistent narrative that weaves through the quests of gilded fairy-tale royals and the foibles of hapless romantic comedy bros, that “winning the girl” is something men can achieve through force of will— nay, force of masculinity — through trying hard and overcoming odds.

There’s no place for “the girl’s” preferences or experience in this framing of courtship.

And the implications of this for straight men in terms of consent and entitlement are clear. But there is also significant impact on women and femmes — who may learn to conflate aggression, persistence, and pursuit with care in ways that we can be critical of, but probably can’t ever really extricate from, because we are always going to be of the primordial cultural soup from whence we emerged.

IV. The culture screaming in livestream

I read the news today—oh, boy.

It’s as if someone has turned my civilization inside-out. Everything that was secret is now out in the open. It’s a kind of a liberal nightmare: Everything that is supposed to be on the inside, covered by the flesh and hair of the state apparatus, is now on the outside. Active participation in genocide has always been a US governmental pastime, but US civilians haven’t always had widespread access to the personal instagrams of some of the people most affected by the horrors. The government has always targeted dissidents, but the scale, the lack of plausible deniability, makes this era feel different. The insides are on the outside, now.

A scientifically-minded kid may open the back of a watch and see it, in a flash of destructive inspiration, in pieces. Do some people look at Social Security and see deconstructed mechanisms of privatization and deliberate cruelty?

Exploitation, coercion, and violence threaten to subsume what is most precious.

V. Twilight misses me by inches; Phantom hits me smack in the teeth

Twilight — the books and the movies — came out after I’d moved past that peculiar period of young femme vulnerability when we wake up to the twin, inexorable facts that we have something that people want, and that makes us prey. I feel like I dodged a bullet with Twilight. Because I might have been the kind of young teenager who resonated way too hard with the girl whose lovers were literal monsters who literally wanted to devour her. (Btw: If you’re interested in these topics and haven’t seen ContraPoint’s brilliant video essay on Twilight, I highly recommend hitting that up next.)

But I did have Phantom of the Opera.

I was a baby queer, a theater nerd, a music geek. So of course I loved musicals. In middle school and high school my theater-kid friends would hide out in the music room during lunch period and belt out the problematic Broadway torch songs of our day.

Phantom screwed me over. Phantom set me up.

Kidnapping, murder, and extortion should be a dealbreaker. But high school girls and ardent fans of Phantom read the show not as a horror story, but as a love story. A story in which a young ingenue saves herself, and everyone she loves, from the raging, violent megalomania of an older patriarch — by loving him enough that he renounces his violence to save her. What a fucking fucked up fantasy, right?

Twilight’s Bella Swann takes a completely different approach to the problem of allying herself with monstrous men: ultimately, she becomes a monster herself.

VI. The battleground of the imagination

My days pulse with fascination and cringe, engagement and dissociation, like a wave of cresting attention crashing into a trough of spacing out, resting, recovery.

Toxic masculinity, white cisheteropatraiarchy are threatening everything I hold dear. It’s only natural that I’m musing about my own relationship to the culture of dominance, my complicity with it, the way it has its hooks in me, and the ways that I both comply with and resist its demands in my life, in my relationships, and in the battleground, the fucking social battleground, of my imagination.

Our imaginations are where so much of this fight is happening.

I feel the threads of my identity — my whiteness, my Jewishness, my queerness, my disability, my campy and complex femininity, resonating, like open violin strings, with the cacophony wafting up from the orchestra pit of the public sphere. I feel how my experience of male desire and patriarchal violence is informed by the intersections I occupy.

The places where I hold privilege. The places where my marginalization and vulnerability takes my breath away. The places where I am in relationship with the enemy.

I think of the US president. I think about how easy it was to text my ex.

VII. An urgent rescue mission and the primordial patriarchal wound

In Star Wars, Kylo Ren is a Sith Lord, an architect and instrument of a fascist, genocidal Empire, a vast system of oppression. But he’s also Ben Solo, a human being who loves and suffers, who relates and is relatable. And Rey’s prime motive — along with, you know, saving the galaxy — is to liberate Ben, and his potent spark of humanity, from the death cult of the Empire.

Is there a sense in which the heterosexual urge to connect with toxic men is actually, among other things, an urgent rescue mission? Do these doomed attempts to “save” bad men take on such strange urgency, potency, because we are sublimating the societal wounds of patriarchal violence onto an interpersonal level — trying, on some level we can’t quite acknowledge, to heal an original patriarchal wound? If we can extricate the person — this man — from his misogyny —maybe we can do it at scale. Maybe we can save us all.

In other words, maybe part of the power of this trope comes from a subconscious desire to dismantle patriarchy itself — sublimated into longing to get some douchebag to connect with you.

VIII. Texting my ex, part 2

But people — men — don’t easily give up the privileges they enjoy, the resentments they nurture, and the entitlements that boost their sense of self-worth. You can’t save someone who doesn’t want to be saved.

Relatedly: I‘ve got to stop texting my ex.

But there’s a part of me that, like Rey, sees embedded in the corrosive and malevolent armor of toxic masculinity a soft, vulnerable human — and I want to reach past the armor and make contact with the person in there. As if, like Phantom’s ingenue, I can love him enough to make myself safe.

Trying to draw the humanity out of patriarchy. I think of that bit in Exodus where Moses, thirsty and impatient (and, I imagine, having had it up to here with getting the runaround from his patriarchal god), strikes a rock with his staff and demands water for his people.

Spoiler alert: Water gushes forth from the rock.
Spoiler alert: Moses is then denied entry to the promised land.

That sounds about right.

IX. Epilogue

In adrienne maree brown’s modern classic, Emergent Strategy, brown demonstrates that social systems are fractal; that is, patterns you observe at one level of the system reproduce themselves at other levels. So the patterns of patriarchal violence that we see on the level of interpersonal relationships are also apparent in international relations, economics, systems of governance, education — in all areas of life. brown cautions organizers and changemakers not to inadvertently reproduce, in their own organizations and relationships, the very hierarchies they are trying to disrupt.

That advice seems apt here.

More and more, I hope I can learn to love from health, not from wounding, with intention, discernment, and discipline. This is self-decolonizing work that I suspect will never be complete — as I suggested above, I think I will probably always have to live in uneasy, ambivalent relationship with patterns and tendencies that I can learn to be more critical of, but never entirely escape.

Meanwhile, everything is collapsing and on fire. And I am here, breaking and broken and healing and breaking and healing and breaking and broken again, sometimes spacing out before the television portal, devouring culture as it devours me; sometimes so vividly present and feeling that I’m afraid I’ll start bleeding from the eyes — a tiny particle of a body politic that is consuming itself with relish and rancor, while shrieking its anguish out the other side of its mouth. Or something.

Thanks for reading. I’m grateful to be on this journey with you.

And if you’ve made it this far — I’d love to hear your thoughts in the comments! Do you experience the ambivalent allure of toxic love — playfully, in fiction, or in life, with that ex you just can’t quit? And how are you surviving this intense cultural moment?

It’s a beautiful fall morning! Warm and blustery. Gusty breezes rustle the last leaves on swaying branches, sending them swirling away through the air. Watching the leaves scatter, I have this fanciful notion of nature as an office manager who has had enough, thank you very much, as the fiscal year ends, and is throwing all her paperwork to the winds. The colorful leaves like collated pages flung out of skyscraper windows, flapping and spinning in chaotic murmurations, freed from context or origin.

Every autumn in the northern hemisphere, where I’ve spent all my 43-and-odd-change years, nature throws it all out and begins again.

I’m sitting out on my rooftop in this old faded Tommy Bahama beach chair that makes it easy to position my knees above my hips, which helps my chronically ill body regulate my circulation—my nervous system forgets to signal my heart that blood is pooling in my legs, and then we get trouble. Thisbe, my big gray cat, who is built like a linebacker and has an unfortunate, congenital expression of permanent alarm, is chasing sunbeams and shadows across the rooftop and tracking the quick movements of sparrows as if expecting an invasion a la Hitchcock’s The Birds. I feel lucky, grateful as fuck-all—for the weather, for my improving health, for the deep satisfaction and aching thrill of embodiment, for the quiet and safety of the morning, for the ghostly orchestra of the wind in the trees, each swaying branch contributing to an October symphony.

Can I stay out of my head for a few moments longer, please? Can I just be in the noncatastrophe of this moment for another moment?

Sometimes, somehow, looming catastrophe or existential threat acts like a spotlight on what isn’t falling apart. I’ve actually been working on a newsletter about the way the catastrophe of my illness has acted as a strange kind of mechanism for bringing my priorities into stark and perfect focus, sharpening the details of my experience to psychedelic intensity.

I’m thinking of that now. The shock of the election results last night feel like being plunged into ice water. The terror of it is a blade against my throat.

And here I am on the rooftop, desperately, clingingly grateful for what the poet Mary Oliver calls my one precious life, thrown into stark relief by the sudden articulation of existential threat. And…sinking into the luscious substance and experience of life, the fricative quality of experience, feels like the right thing to do right now. A way to recharge the battery. A reminder of what we’re fighting for, perhaps.

I wanted to write something today to connect with you all. To ask how you are doing, how you are coping. To say that I love you and that I am here for you. That your life is precious and irreplaceable and that I promise to fight for you.

To my friends, my people, my readers, my fellow queers, disabled folks, women and femmes, my dear BIPOC and trans and nonbinary siblings, and anyone who feels the blade of existential terror against their neck in this moment: I see you. Your life is precious, and your joy and embodiment are both gifts to the world and acts of resistance.

A few final thoughts:

We don’t have to be able to see the path to take the first step.

Crisis catalyzes community care.

Some final thoughts from writer and activist Rebecca Solnit:

And from the poet Mary Oliver:

How are you coping? What do you need? Let me know in the comments. We’ll get through this together.

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I. Monster

I’m going to tell you a story I haven’t told anyone before.

It’s 2021, and I am as sick as I have ever been. Later, these symptoms will recur while I am under a doctor’s care, and I will learn that there is a name for what I’m experiencing: spinal meningitis. The lining of my spinal cord has been colonized by a herpes virus—probably a complication of immune dysfunction from ME/CFS, a complex disorder of the nervous and immune systems that hit me like a cement truck following a COVID infection in 2020. I will take prophylactic medication for it for the rest of my life.

At this time, I don’t know that. I only know unendurable pressure, migraine. Intermittent loss of consciousness. My fever spikes, and I have this bizarre, vivid waking dream. 

I’m aware of myself lying on my back in bed, arms limp by my sides, of the stiffness in my neck, of fever and pressure and pain that won’t quit. And I’m also standing on a deserted beach by the large, dark entrance to a cave. The scene is vivid—seagulls making all kinds of noise, the ocean smell of salt and clean rot, the glare of the sun, flecks of mica glittering on the face of the rock. When I enter the cave it’s cool and dim, but not dark, with a towering ceiling—a cavern, really—and a smooth stone floor, and almost immediately I hit this spiral staircase that goes up, up, up, and down, down, down. Pick a direction, I think to myself, and what the hell, so to speak, I pick down, and I start descending the smooth stone stairs. I walk for awhile, and finally the staircase ends in this brightly lit room, and the room is a laboratory, and there’s my ex—the guy who gave me the herpes virus in the first place, incidentally, the virus that I don’t yet know is causing my condition—standing at a lab table wearing a white lab coat and doing god knows what with beakers and Bunsen burners and scales and measures. He seems to register my presence but is totally absorbed in what he’s doing. I just stand and watch. It takes me a minute to notice that, behind him, on the floor, under another lab table pushed against the wall, there’s this cage. And in the cage is my exact double. I look back at my ex quickly but he’s still totally absorbed. So I kneel in front of the cage, where this traumatized part of me is still trapped, almost a decade after the end of this relationship, and she scoots forward on her knees and grabs hold of the bars, and she’s looking at me, silent and trusting, big-eyed and calm, and I know that I’m here to let her out. Which I don’t have the foggiest idea how to do. And then I think to myself, wait, this is my dream, I can do whatever the fuck I want, and I decide that there’s going to be a key that will open the cage, and it’s going to be right beside her, inside the cage, and sure enough it’s there. She picks up the key, reaches through the iron bars and unlocks the cage door, flashes me a huge thank-you grin and then vanishes, and I can see that behind her is a tunnel she has dug into the wall like Tim Robbins in the Shawshank Redemption. I turn back to my ex but he has disappeared and in his place I see my father, measuring, calibrating, working the experiment, paying me no mind. 

“Oh come on!” I say, because that’s a little on the nose, even for my subconscious, and I stalk off in disgust, back up the spiral stairs, leaving the laboratory behind.

Up the stairs I climb, up, up, up, and the quality of light is changing, and all at once I’m not underground anymore, rather, the naked staircase is spiraling into the sky, which is such a breathtaking, vivid blue that my eyes water with the suchness of it, and I’m climbing above the clouds until I can’t see the ground anymore, and then the staircase terminates in a room—a kind of floating, disembodied room, a head perched on the long spine of the staircase. The room has a floor and ceiling but no walls, and in the center is a glowing crystal like a lighthouse beacon, and in every direction is the impossibly blue sky dotted with fluffy white clouds. And I am still aware of myself lying in bed at home, terrifyingly sick, and I ask no one in particular, “what’s wrong with me? What do I do?”

And suddenly I know that I have to take a leap of faith. I have to step off the edge of the room and out onto thin air, into the blue, to get the answers I seek.

So I take a deep breath and I step out onto nothing.

I am floating. The room and stairs are gone. I am floating in a world of blue sky and bright light and little fluffy clouds and I am not alone. There someone floating in front of me. A man. No. A monster. With blue skin and black hair and wild, reckless eyes that wake something reckless and destructive in me. We float, regarding each other.

“Am I going to be okay?” I ask, with sudden trepidation. The monster smiles, and its mouth is crowded with bright white needle-sharp teeth. It shakes its head slowly, as if savoring a delicacy. I want to scream.

I open my eyes and the dream fades.

My dream both begs for and resists sensemaking. It is potent with resonances, but does not hang together in a way that is neat and tidy. The uncanniness of the synchronicities—the appearance of the ex who gave me the virus; the image of a head sitting on a spine—are compelling. And Dr. Freud might have a field day, if he ever got his grubby patriarchal fingers on this document. But he’d also be left, ultimately, with a lot of strangeness and mystery.

Memory is like that, too.

II. What Narcissus saw

When I was 34, my at-the-time partner noticed a lump in my right breast. The cancer-industrial complex is real, and it processes people with the dumb efficiency of an assembly line. For the first few months of mammograms, biopsies, and consults, I was told again and again that the lump was likely benign. When my surgeon finally called with the news that I had a grade three tumor that had spread to my lymph nodes, I laughed, because of course, why not? 

I was a strange character in my 20s and 30s. Beautiful, brittle, ferociously intelligent, weirdly—probably maddeningly—naive, and also a dedicated party girl, a devotee of peak experiences, a lover of music and art, kind of a scenester, petite and harmless looking, a high femme with an a e s t h e t i c, constantly underestimated, especially by men. As an arts journalist, I documented my experiences with wide-eyed narcissistic (in the original, mythic sense of the word) obsession. No one really knew what to make of me, least of all me. After my diagnosis, all that had to stop. First for cancer treatment, and then as the waters of chronic illness began to close over my head.

III. Quantum pasts and futures

What are we doing when we write about ourselves? When we write our own histories? When we narrate our identities into comprehensibility, into existence?

At present, I am working on a memoir. And as I reach back through time, connecting to ephemeral and often unreliable memories, checking and rechecking them against what documentation I have, stringing them together like glowing, transparent beads into something resembling a story, into something that might make sense, as I try to craft linearity, it feels more and more self-evident that time is nonlinear, that experience is holographic, that memory is emergent, malleable, dialectical, that the present moment is a strange kind of portal through which, to borrow an analogy from the Greeks and the Norse, the fabric of history must be woven and rewoven, called and re-called into being. The deeper I fall into this work, the more time seems shimmering and unreal. My present seems to change shape as I reorient with respect to the past, like entangled quantum particles speeding apart from a single point.

IV. Into thin air

The biggest difference between my experience with cancer and with ME/CFS is that my cancer had a decisive, well-structured story. This isn’t true of a lot of cancers; many folks, especially those with complex or metastatic disease, have cancers that refuse to comply with the rules and demands western medicine has set for them, that push up against the rigid limits of our stories. But for someone like me, whose cancer (so far) seemed to break against the wall of surgery, chemo, and radiation, cancer was a story with a beginning, middle, and end. Every step of the way was prescribed. My symptoms were mapped out on mass-produced pamphlets. My treatments had been so well-studied that I was not even presented with choices about what to do next; there was always a best practice, a right answer. An authority was always there to tell me what came next, where I was on the map of my cancer treatment “journey.”

On the other hand, the crisis of undiagnosed and poorly understood illness is like stepping onto thin air. At first, when tests came back normal, doctors insisted—bizarrely, impossibly—that there was nothing wrong with me. Even now, with a diagnosis and support from expert specialists who I trust to save my life—because they have—there is too much that is not known. There is no clear etiology or prognosis for this disease. COVID doesn’t trigger postviral disease in everybody. We find treatments that work through educated trial and error. Even when we know what treatments tend to work, we often don’t know why. There is a sense of being adrift, unstoried.

V. What Narcissus sees

I’m 43 now. Have I mentioned that in this newsletter? I don’t think so. It’s been almost a decade since my ex (who copyedits this newsletter—hi Tony!) found the lump in my breast. It’s been almost five years since that first COVID infection sent my nervous and immune systems into critical failure, triggering the onset of catastrophic postviral disease. It’s been four years since I first experienced spinal meningitis, and eleven years since the other ex, the one from the underground fever-dream lab, exposed me to the herpes virus in the first place. It’s been almost one year since my ex-spouse and I finalized our divorce. These touch points are like stepping stones I can hop between as I cross a river. What is between them is fluid, sparkling, not yet defined.

I am still mapping the ways in which I have changed. Certainly, I’m not as clever or quick as I was in my 20s and 30s. I have more patience. Word play comes slower, but my internal world is also a kinder place with softer edges. I am more focused and reliable. Eclectic, mostly Buddhist-derived spiritual practices support and sustain me. I have fewer relationships, but they have great strength and depth.

VI. Whiplash

Whiplash can occur when a car is rear-ended or stops suddenly. Essentially, your body, seatbelted to your vehicle, starts and stops with your car, while your head snaps back and forth according to the laws of physics, forcing the muscles, ligaments, and bones of your neck to flex or extend past their limit. Often, it takes time for the body to register the damage that has been done. You might not know, for a few days after the incident, how badly you’ve been hurt.

When I was first diagnosed with breast cancer, in an effort to orient myself, I collected stories by cancer survivors. Many survivors write that their experience with cancer left them changed, that their brush with death transformed their orientation toward life, that their priorities snapped into focus under the newly polished lens of their mortality, that their lives shone fresh with preciousness born of precariousness. I half-expected to finish chemo and open my eyes to the sparkling world of suchness that Aldous Huxley describes in his experiments with mescaline. I wanted that for myself.

When I did not feel any of that, I was queerly disappointed. I joked to friends that I had been promised a spiritual awakening. I had passed through the gauntlet; why didn’t I feel like I’d leveled up?

A decade later, I wonder if the ache of spiritual whiplash has finally set in. Grief is a potent consciousness-altering drug. In the presence of complex and ongoing grief, all experience becomes cathartic, every moment becomes unbearably precious, sweet, and harsh. Sometimes I wonder how this body, this poor, inflamed nervous system, can hold the feelings and impressions that flood through me? After many years of acute and chronic illness I have a deeper understanding of the fact that impermanence is real, that suffering is always close, that nothing is guaranteed. And that adds an edge of terror, exhilaration, and clarity to my experience.

My body is the sum of everything it has been through until now. My body is made of history. Momentary and tangible, my body is the fulcrum from which memory and identity leverage into the past and future. It both demands and resists sensemaking. It suggests stories—diagnoses, histories—that are always unsatisfactory and incomplete. Ultimately, we are left with strangeness and mystery.

Meet me in the comments

The stories we tell have so much power to shape how we understand ourselves, and how others understand and treat us. Let’s talk about diagnosis (and lack thereof). Let’s talk about bodies, memory, history, and how we change over time. Has an encounter with mortality shaken you awake? Or did you, like me, feel cheated out of your spiritual awakening? And what the hell are dreams, anyway?

Thanks for getting weird with me, dearest reader <3

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Related work

Prologue: A not-unproblematic classic of American theater

This quote is from the climactic scene of The Crucible, Arthur Miller’s not-unproblematic horror-drama of the Salem witch trials. The speaker is John Proctor, who arguably instigated the whole witch trial mess by first seducing, then abandoning, his teenage mistress, Abigail, who then cried "WITCH” in a scheme to take down Proctor’s wife. Now, Proctor has returned to his principles and his wife, and is refusing to sign his name to a confession of witchcraft, which would validate the torture and murder of his fellows and implicate others. There are a lot of problems with this play, especially its notions of women’s virtue and vice, but Proctor’s meditation on the power of names is a great moment in America’s theater cannon.

Anyway. I bring this up because I want to talk about names and authorship. I want to talk about what it means to sign our names to our writing, and the witchcraft of building what is colloquially called a “brand” over time. I want to talk about who gets to sign their name to their work, and who doesn’t, and why. I want to talk about when claiming our work is a privilege, when it is a courageous choice, and when it is simply not an option. And I want to talk about the still-vital tradition of bringing mob violence to women, femmes, and other gender minorities and members of marginalized groups whose speech rubs white heteropatriarchy the wrong way. And John Proctor’s speech seems like both an appropriate and ironic segue into it.

What’s in a name? The pleasure and menace of a byline.

For anyone reading this publication for the first time, I don’t sign my full name to my newsletter. When I was filling out my info on Substack in April, back when I started this newsletter journey, I took one look at the “author name” field and had one of those movie-montage moments where your past traumas all flash before your eyes. Then I drew a great white blank. Finally, I typed “This Is Rachel” into the empty space in lieu of a first and last name. For my author photo, I cropped an image from a backdrop from the classic 1956 sci-fi film Forbidden Planet, a retrofuturist retelling of Shakespeare’s The Tempest with a gorgeous, campy aesthetic and its own issues with gender equality. (It gets a shout-out in the title song of The Rocky Horror Picture Show.) This seemed like the safest choice.

As time goes by, using a pseud has begun to bother me more and more—or, rather, I am bothered by the fact that I should feel afraid to use my real name online. I’m working on a memoir and thinking about pitching it to agents. I’ve started submitting creative nonfiction to literary journals again. And there is a deep hunger in me to sign my name to this work.

There is magic in a byline. Seeing my name in print is the writerly equivalent of standing on stage with an electric guitar and the amp cranked up to eleven. Since I first started writing for a local arts alt weekly in the mid 2010s, I was hooked. Publication is talking with a megaphone. And it confers not only volume, but a particular kind of authority. And when your name is on the byline, you hold that authority. I’m a tiny femme. I look far younger than I am. I default to vocal fry. In a crowded room it’s hard to get anyone to listen to me. But none of that matters when I’m speaking out from under a byline. Seeing my name in print is the best high in the world.

The dangers of public life

I’m not going to detail here the ways in which internet mobs have blown up the lives of women, trans and nonbinary writers, and other journalists of marginalized identities who have triggered easily triggered bigots on the internet, although I will link to some good journalism on the subject, and I encourage you to learn about GamerGate and other instances of mass online abuse if you’re not familiar with this dark history. (For a recent, high-profile example of how vicious the virtual public square can be, I point you to the “controversy” around olympic boxer Imane Khelif, who named Elon Musk and JK Rowling in a criminal complaint after they unleashed an internet mob on her for not looking feminine enough during a boxing match. YouTube’s Matt Bernstein and Contrapoints have a wonderful breakdown of what happened.) Anyone who isn’t a white cisgender man is at higher risk of mobilizing an angry internet mob, especially when we, as writers, engage certain topics that should not be sensitive, but for some reason are sensitive—like science fiction, video games, tech, gender, or politics. And the left is absolutely implicated in online abuse and bullying, as well.

The danger of this kind of harassment and bullying is compounded because most people’s personal information—such as home addresses, cell phone numbers, family members’ names and addresses, etc.—are easily findable via Google through databroker websites. If you anger the wrong person, they could show up at your house—or place an anonymous call to your local SWAT team. These scenarios are not hypotheticals.

And when I google myself—well, there I am. I mean, really. There I am. My name—my phone number—my address—all appear on datamining sites. I’m not hard to find. This is terrifying. It wouldn’t be hard for a bad actor to “dox” me—internet speak for revealing someone’s address, phone number, and other contact info to an angry internet mob—if they wanted to.

When the internet mob came for me

And there are more personal reasons that I’m cautious. I feel a visceral cringe in my body when I think about exposing myself online because I’ve personally endured cyberstalking and online abuse.

My crime was publicly supporting a community member who had been assaulted by a popular community member. Well, it was a little more complicated than that. At the time, I was a somewhat-well-known blogger in an urban subculture. The community was stunned by the victim’s disclosure of abuse. The perpetrator claimed that the victim was a liar, and in the pre-#metoo landscape, no one was sure who to believe.

This all happened more than ten years ago, and the perpetrator is incarcerated, and all the major actors have moved on, so I’m going to reproduce an excerpt of the blog post that brought down the internet’s wrath:

Here's something I've learned: Being a good friend in some contexts does not preclude being a monster in other contexts. A lot of violent people get away with a lot of shit because their friends can't wrap their minds around the idea that someone who is nice to them is also capable of violence. Accepting such a notion would cast doubt on their own ability to judge character, and worse, it would force them to acknowledge that people may have the capacity to practice good AND evil—that the one does not necessarily preclude the other.

The legal system sets the bar pretty high when it comes to judging guilt. And it should, because it exercises judicial power. We are not the legal system. We are individuals, and our standards are our own. And the community's standards emerge from their aggregate. What kind of community do you want to foster?

I believe her.

At first the response to my post was overwhelmingly positive. I had struck a nerve, articulated something that needed to be voiced. Supportive comments piled in, and out of those supportive comments grew fruitful discussion, and out of that discussion—believe it or not—grew an actual miniature movement. I found myself facilitating, along with others, in-person meetings about how to recognize and prevent abuse in our community. Everything seemed to be happening around me, disorientingly quickly, like a rising wave I was happy to ride. It was exhilarating.

And then—the backlash came. Now I was fielding comments and threats that came faster than I could read them. Sock puppet accounts—fake accounts used to deceive others—were messaging my friends and acquaintances with wild claims about me—my favorite is that I kept a “burn list” of people who I was planning to ruin with false rape accusations. I watched my network of connections evaporate as being associated with me became poisonous.

It’s hard to explain how terrifying and consuming online bullying and abuse can be to someone who hasn’t experienced it. The feeling of primal, somatic terror at being so completely rejected by the group, regardless of whether it’s happening on the internet or whether you’re actually in a Shirley Jackson short story, is like nothing I’ve ever experienced. From your body’s perspective, there’s a constant shrieking emergency you can’t escape. Which makes sense, because the one of the most dangerous things in the world for a human is exile from the the community. The stress is exquisite and relentless. My body rejected food and refused sleep. There was a constant feeling of dread, like a live explosive had landed in some close by, but unknown location, and I was waiting for the detonation to come. I locked down all of my social media accounts and stopped checking email and texts out of sheer exhaustion, which effectively locked me out of a huge part of public life. “I wake up feeling burnt. Damaged. Corroded. I crawl up from an insane, nauseating, unreal pit and slowly come back to the world. I have constant headaches,” says another victim of mass public bullying on the physical and psychological toll the experience takes. This resonates.

I am lucky that no one actually moved the online harassment I experienced into the physical world—although they could have, and I endured fear that they would. And I am lucky that a group of ride-or-die friends stood by me through the raging storm that tore apart my social world.

But yeah, I have some PTSD.

How are other creators navigating these waters?

At an impasse, I took to “Notes,” Substack’s answer to Twitter, to ask other writers how they handle the tension between holding space for their identities as creators and protecting their safety. I received many intelligent and nuanced responses from writers who balance their values and priorities in a variety of ways.

Some of you were cautious, and kept your hands, feet, and identifying information carefully in the social media rollercoaster car.

illustr8d

I don’t use my real name or my picture because I’ve been white-knighted [attacked by an online mob] twice, once with people threatening my life (on Twitter).

It was scary even knowing it would be hard to dox me (and they weren’t able to at that time).

Sanna Salanimi

My chosen last name is directly translated from Finnish to mean “pseudonym.” Two reasons: First, I write on sensitive topics that I have first-hand experience with that I don’t need my 9-5 cohorts catching wind of. No shame there, just privacy. Secondly, there’s the criminally insane ex. Sometimes I resent that I can’t have socials to promote my work because of him. Safety first. However, this is weird— I find that Sanna is a better writer than me. I’m keeping it this way.

Others understand the risks of doxxing and hate, and make the courageous decision to write under your own names anyway:

Ava Robinson

I let it all hang out. I figure if I’m doxxed for being a [sex worker], for being an abolitionist, for ____ then so be it. I have disadvantages and privilege/access so I do my best to hold the duality of both. It doesn’t come without fear but it also comes with liberation. That, and I’m also querying a memoir.

Robin Taylor (he/him)

Let’s face it, as an out trans person on the internet, I’m a prime target. I knew that when I named my [Substack], and I did it anyway. Why? Because I know there are loads of trans people and families out there who need to see someone stand up and be themself in front of the whole world. This is how I have chosen to build community, and it has worked very well for me.

Then there were also folks who used Substack’s paywall feature to ensure that their most sensitive content only reached friendly readers. Or who signed their real names and made their content available to all, but used paid services to hide their personal information online so that they were less vulnerable to doxxing. (More on that in the resources below.)

Then there was the response that, to be frank, made me mad enough that it inspired me to bang out this essay.

You check your privilege; I’ll check the chip on my shoulder

This commenter opined that, as a journalist, he couldn’t trust the word of any writer who didn’t sign their real name to their work.

Friends, to say I found this comment tactless and frustrating is an understatement.

There’s a lot of privilege on display here. Cis male journalists are less likely to be doxxed by orders of magnitude, and far less likely to experience the kind of stalking and harassment mentioned by many of the other commenters, and described by me above. And the crassness of saying this in a thread that included references to personal experiences of bullying, stalking, and abuse makes me vomit in my mouth a little. (It’s also not even an entirely accurate statement; it’s absolutely possible for a pen name to command trust; see: Mark Twain.)

But what really bothered me about this comment is that there is a grain of truth in it: Over time, as we create a body of work, we build credibility, momentum, and a sense of identity as an artist—and all that aggregates around our names. It attaches to our names, and is carried by our names. In contemporary speech, they call it building a brand, but it is so much more than that.

Really, it is a kind of witchcraft.

The writer is a witch. And witches have always been burned.

When we create a body of work over time, we are creating an energy, aesthetic, and style particular to us. We are demonstrating our values, proving our reliability, conjuring artistic charisma. Others begin to vibe with us and look for our bylines. We all know what it feels like to see an author’s name and know in our bones that this person speaks for us, that we want to hear what they have to say next. Joan Didion, Rebecca Solnit, adrienne maree brown, Sophie Strand—these names vibrate in my being. I associate them with work that has transformed me, or helped me to more deeply articulate myself. I feel deep kinship and connection with these writers, and that connection is carried and communicated in their names.

Signing our real names to our work is not always necessary, or even optimal. Some bodies of work benefit from pseuds. (See: Ziggy Stardust.) But in other cases, the link between self, name, and work adds authenticity and trust to the spell we’re casting. It means something.

So what does it mean that misogynistic violence has made me afraid to write from under my own byline, to build my brand, invoke that magic around my own name as I build a body of work? What is being stolen from me?

Sure, I could build a brand around a pseudonym, in the tradition of Mark Twain or George Elliot. In the event that I ever say anything that stirs up the sleeping monsters on the internet, the false name might even protect me (and it might not). But I don’t want to do that. In doing that, for me, with this project, something is lost.

This leads me full circle, back to John Proctor:

A little dramatic, but the fit isn’t bad.

Postscript: What this witch decided

I ended up signing up for a service that deletes your private information from databrokers. I’ll see how well it works, and how safe I feel, after it’s been operating for awhile, and make a decision about whether to start signing my real name to this newsletter, as well as my work elsewhere. Watch for a big reveal, friends. It’ll be like that time Clark Kent came out as Superman.

Hit reply or meet me in the comments!

In the meantime—this is a community issue that affects all of us, and I would love to continue this conversation in community. What are your thoughts? How to do handle the tension of creating in public in an unsafe world?

Leave a comment

Resources

Where to turn if you are experiencing online abuse or have been doxxed:

• Crash Override Network is a crisis helpline, advocacy group and resource center for people who are experiencing online abuse. We are a network of experts and survivors who work directly with victims, tech companies, lawmakers, media, security experts, and law enforcement to educate and provide direct assistance working to eliminate the causes of online abuse.

Services that remove your data from data mining sites (I don’t get any commissions from these links, I’m just leaving them here as a resource):

• DeleteMe is very expensive, but from what I’ve heard, it’s probably the most effective service at doing what it does. You pay per data point removed. Notably, their site also provides DIY manuals to help you remove your data yourself free of charge, but this gets overwhelming fast.

• Incogni is a subscription service that removes your info from data mining sites.

• Aura is another such subscription service.

Thanks for reading naked and stunned at the end of the world! Subscribe for free to receive new posts and support my work.

Surgery is a uniquely helpless experience. Or non-experience, really, since, as T.S. Elliot put it, you’re “a patient etherized upon the table” during the good part. In fact, “preparing for spinal surgery” is an incredibly misleading phrase, because once you’ve picked your surgeon and okayed the procedure there’s not really much you can do to prepare other than read self-help books and pray to whatever deities feel most real to you. It’s more of a waiting game, and can feel like an exercise in powerlessness.

But somehow, in my powerlessness, the killer asteroid story made me feel better. And I’m still unpacking why. I mean, on the surface, it makes no sense. Why would finding out about a collective brush with annihilation improve my mood? Especially given that the threat from killer space-rocks is ongoing.

Anything can happen any time

Impermanence is the way Buddhists talk about the fact that the conditions underlying reality are constantly changing. Impermanence means that every object we encounter, every phenomenon we experience, has a lifespan: rising, sustaining itself in delicate feedback loops, and inevitably falling away and taking other forms. In other words, birth, existence, and death are ubiquitous. Nothing lasts forever.

But Buddhist teacher Joseph Goldstein has a wild way of defining impermanence:

Anything can happen any time.

This phrase arose in Goldstein’s mind “like a kind of mantra” after he injured his knee in a surprise! slip-and-fall. And the words shifted and softened something anguished and sullen in his mind that had been unable to tolerate the unexpected accident.

Anything can happen any time.

The words also shift something in me. They don’t land in my mind like a static record of knowledge, a flat piece of language on the page. Rather, they act like a technology, a psycholinguistic machine, a psychic splinter that creates some kind of productive mental irritation, a blinking light that flashes in some dark part of my mind and leaves me startled and blind, wondering how to articulate what I’ve just glimpsed, because it’s paradigm-shifting and new. Maybe that is what’s meant by “mantra.”

Anything can happen any time.

What are the implications of these words? If we really believe them? If we really take this idea in?

I don’t know about you, but I feel a strange kind of relief at the idea that we don’t even have the option to control everything. There is only so much we can do. We cannot micromanage deep space. Even as NASA tries, an asteroid slips by from a direction we can’t monitor. Accepting our limits in the face of change takes the pressure off; it is an invitation to do what we can, and then to surrender to a moment that transcends us. As Goldstein puts it in his classic book Mindfulness:

“We don’t have to live defensively if we accept that anything can happen any time.”

Surgery is Surrender

Almost a decade before my spinal surgery, I went under the knife as a breast cancer patient. I don’t remember the surgery. (If I did, the anesthesiologist would have a lot to answer for.) I remember changing into a papery hospital gown and waiting, chilled, to be wheeled into the OR. I remember waking up in the most exquisite, relentless pain I have ever experienced, and being denied painkillers by the oncology ward’s Nurse Ratched until my doctor signed off on them. My surgery, however, is a great white blank.

But I’m pretty sure that my body remembers.

It’s early 2022. I’m lying on a massage table, masked up and blissed out, and M, an occupation therapist who specializes in a modality called myofascial release, is working on my right armpit, near the spot where my breast cancer surgeon took four lymph nodes in 2015. M and I are chatting about trivia, like you do, and suddenly my mind goes still. The room seems to dim, and I have a vague sense of people standing over me, along with a deep throb of emotion that I can’t name. A sense of cringing and helplessness. Waves of feeling that are more physical than emotional—abandonment. Confusion. And it’s as if these sensations are localized in my right breast. Then all at once, in a kind of cathartic shudder, the perpetually tight muscles around my armpit relax and I begin to cry.

I say to M., “I don’t remember my breast surgery, but I think my body does.”

Surgery is a leap of faith. During surgery, in a very real way, we abandon our bodies, trusting doctors to bring us to the strange, liminal cusp of subject and object; of dynamic, living system and passive, inert meat; of life and death—and then to bring us back. The amount of control we are giving up is staggering. The amount of trust we are placing in our doctors is incredible. Surgery is a profound act of surrender.

Anything can happen any time.

Maybe the asteroid story made me feel better about going under the knife because it reveals all of life as an act of surrender. The breathtaking risk and release of control associated with surgery is normalized when you realize that we missed total asteroid annihilation by the length of a few football fields a few days prior—and not only that, but that we didn’t even know about it at the time. Is it corny to say that on some level we are always on the surgical table?

Anything can happen any time unlocks something that was inhibited in me, liberating me to take bold action, to participate more fully in life. When I am aware of the risk inherent in every moment, I feel empowered to take my own risks.

Severe illness can teach a similar lesson. Facing my fragility has, paradoxically, empowered me to live more boldly, to be less risk-averse, to give fewer fucks about things that don’t matter, and to navigate legitimate risk with more awareness, deftness, and grace. It’s as if the conflicted parts of me have given up hand-wringing and fallen into line. This is not to say I’m not afraid, but I definitely respond differently to fear. I get in a different way that no matter what I do or don’t do, there are no guarantees.

Impermanence, radical uncertainty and Hope in the Dark

There is another side to anything can happen any time: Just as catastrophe can come out of nowhere, so can salvation, unexpected windfalls, and gifts that transcend our capacity even to imagine or to ask.

Impermanence, and the radical uncertainty it implies, opens up the possibility for hope in situations that may seem hopeless. Bloodless revolutions, miracle cures, and new technologies can arise seemingly out of nowhere, disrupting the old world and ushering in something new. Journalist and lefty intellectual Rebecca Solnit, who says that hope is her beat, takes on this topic in her classic book on hope and political change, Hope in the Dark. Artist Cat Lambert illustrates Solnit’s words below:

This is a stunning illustration of how impermanence works. Of how change happens slowly, invisibly, and then all at once.

We are embedded in matrices of erratically orbiting asteroids and voraciously branching mycelial networks. We are woven into vast systems whose workings we cannot track, whose sudden tipping points might turn our world into heaven or hell in an instant.

And because we are part of these networks, anything can happen any time also means that our own thoughts, wishes, and actions may reverberate in ways that we cannot fathom. Our actions matter. As Solnit puts it:

“Hope locates itself in the premises that we don’t know what will happen and that in the spaciousness of uncertainty is room to act.”

Terror or exhilaration

Toni Bernhard, a writer and scholar of Buddhism who, like me, suffers from complex, multisystem postviral illness, makes the following statement (paraphrased, because your girl is too sick to find the book and look up the citation right now):

If you really internalize the idea that anything can happen any time, there are two possible responses: terror or exhilaration.

More and more, as time goes on, I find myself able to choose the heady, galvanizing freedom of exhilaration.

anything can happen any time
opens the heart
to life
to death.

-from “A Fall,” by Joseph Goldstein

A list of things that literally might happen in this infinite universe

• What if, like the dark lord Sauron, I return to full power?

• What if Elon Musk disappears in a puff of malice and glitter?

• What if, with the intelligence of murmuration or swarm, people suddenly discover conscience and collective power? What if there’s a coordinated, general strike with specific, actionable demands? What if the world changes all at once? What would it feel like to be in such righteous and compassionate solidarity?

• What if technology blah blah blah and suddenly I can be around people without masking or pandemic drama?

• What if love finds me in forms that I can’t yet imagine?

• What if AI develops real wisdom and becomes a force for good?

• What if my memoir finds advocates and champions? What if, like a child who charms her way through the world, it launches practically on its own, with ease?

• What if the next generation of treatments for ME/CFS are made available to everyone, patents be fucked?

• What if the technology to reverse climate change is here?

• What if hearts and minds are changing faster than the status quo can stop them?

I invite you to make your own list. Think of it as an exercise in spellcasting. Share it in the comments if you feel like it. Or tell me your weirdest surgery stories. How has the soft animal of your body kept the score? What does it do to your brain to imagine that anything can happen any time?

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“Does that language bother anyone else?” she said.

“Would you prefer housebound?”

“Ew. No.”

“All of the terminology is gross and ableist.”

“I identify as a princess in a tower,” I offered.

In fact, my situation has striking parallels to Rapunzel’s. I live in a second-floor walkup apartment. For over a year, I haven’t been able to leave it. My front and back doors open onto steep staircases. The back stairs, which I share with my hippie landlords, are like something out of an MC Escher house, with steep steps stuck together at Elder God angles, punctuated by strangely shaped landings. Meanwhile, my front steps are built like someone took the suicide stairs from The Exorcist out of Georgetown and twisted them around a central axis just to make the ascent that much more fun.

I’m doing much better now than I have been since my surgery last July caused a surprise! chronic illness flare and left me mostly stuck in bed. But those stairs. My legs, which were once sturdy enough to sprint across the playground after my four-year-old nephew, now threaten to fold under me like a marionette’s, and are definitely not ready for those stairs. Which means I’m empathizing hard with Rapunzel.

Girls just wanna have COVID-safer intimacy

The chronic illness group chat is a hoot. There are I think eight or 10 of us, all women and femmes, straight and queer, from different walks of life, raunchy af, all at the end of our rope with being so desperately ill. We connected, indirectly, because of desire: in a Facebook group for “singles” with ME/CFS. When the mods repeatedly sided with the most aggrieved men’s rights activists in the room we staged a virtual walk-out and have been exchanging complaints, commiseries, chronic illness tips, and nudes via messenger ever since.

Being housebound, if we’re going to go with that language, does not stop us from feeling or acting on desire. H. has an electric sexual connection with a partner whom she calls “boomerang” because he keeps coming back, no matter how hard she hurls him away. A. had an ongoing a fling, until recently, with the hot phlebotomist who would come to her house to do a blood draw every week. V. and E. have long-distance partners who are also chronically ill. K. has a devoted following on OnlyFans and a few local friends-with-benefits who are willing to come to her and practice COVID-safer intimacy.

As for me…until recently, I’ve been too sick to want anything other than the cessation of sickness. But now that my condition is a little more stable, I’m getting restless. And I’m thinking about the slippery, unstable, insatiable nature of desire.

Desire is a moving target

Just a few weeks ago, all I wanted in the world was to be able to go outside. And now, I’ve gotten my wish—and I’m not satisfied. I’m restless. I want to walk. Run. Feel ease in my body. And I’m lonely. I field irritating impulses to text my most toxic exes. I’m whacking away bad ideas like I’m in a psychic batting cage.

One thing about being seriously ill is that it burns away everything extraneous. Your deepest priorities pop into focus. You stop wanting stupid shit, or really anything that isn’t absolutely essential. The petty distractions of the ego are so obviously petty distractions. Its obsessions and addictions can’t hook you.

It is strange, as I recover some energy, to watch that stuff creeping back. Frankly I’m not sure how to feel.

Give me salad greens or give me death: a reading of “Rapunzel”

So I turn to another princess in a tower for answers: the original Grimm brothers’ “Rapunzel,” one of the strangest allegories about desire that I’ve ever encountered. Maybe allegory is the wrong word. The story has a bizarre, unsettling dream logic that is blindingly unsubtle, but also resists easy analysis.

“Rapunzel” opens with desire: a childless couple who desperately want a child. But that plot thread gets dropped when the wife notices a gorgeous patch of rapunzel—a type of salad green—growing in the garden of the sorceress next door.

"Oh," she said, "if I do not get some rapunzel from the garden behind our house, I shall die."

This seems a little dramatic. Weirder still, her husband hurries to fetch the greens because he also believes it’s possible die of desire. And, weirdest of all, when he gets caught stealing the rapunzel and spills the whole story to the sorceress, she seems to agree that desire can kill.

"If things are as you say, I will allow you to take as much rapunzel as you want. But under one condition: You must give me the child that your wife will bring to the world.”

The sorceress takes the child—named Rapunzel after the salad greens—and when the child reaches 12, that dangerous age for girl children, the sorceress locks her in the iconic tower. Prince Charming hears Rapunzel singing in the forest, and “he could have no peace” until he finds her; his desire for her is as consuming and destructive as Rapunzel’s mother’s desire for salad greens.

This story is big on the toxic and destructive nature of desire. Desire makes people physically ill. It drives them to break social rules, upend relationships and living arrangements, and invite danger and physical harm. Ultimately the prince abandons his literal kingdom because he is sick with desire. Desire leads the sorceress to terrible vengeance.

Time takes a cigarette

When it comes to desire, nicotine has been a great teacher. I’ve quit smoking more times than I can remember, and it is a lesson in craving in its purest, chemical form. Because, when you come down to it, there is never a justification for smoking. Ultimately, there is only the bare sensation of wanting, and the thoughts, emotions, and stories that bare sensation stirs up.

When you strip away the fantasies and projections it’s wrapped in, craving feels kind of like irritation. Like an unbearable itch. Anticipation that is both sweet and excruciating. That contains promise, and also deprivation. That teases and titillates the ego. That stimulates and focuses attention.

Most of the time, desire is more than just craving. It is tangled in our identities, our values, and what we think we owe other people. It gets complicated.

And desire is a strange, slippery thing. Even when you get what you want, you’re never going to be satisfied. The Buddha observed that 6,000 years ago. As my body heals and I pass one milestone after the next, I do celebrate the wins, but my sense of lack keeps pace with me; my desires just keep moving up Maslow’s damn pyramid. Needs become wants, and wants become irritating, nagging reasons to continue to feel aggrieved. My desire is conditioned and reconditioned as my situation changes.

Right now, I itch for intimacy. I peer into futures that might never materialize, fretting because my immune system will probably always be too busted to thoughtlessly share air with an intriguing stranger. I lean into memory. I crave the magic of closing a circuit with a glance. The electric high of creating a badass l o o k and magnetizing attention from across a crowded bar. And that feeling probably won’t be as easy to achieve, I speculate, masked and in my 40s, as it was in the pre-coronavirus days. That is, assuming I’m ever well enough to hit a bar again.

This line of thinking leaves me feeling thwarted, restricted, and deprived. The princess locked away in the tower is more resonant than ever.

Meanwhile, my sicker self from six weeks ago scoffs at me across time. Where’s your sense of perspective? she asks. What happened to “all I want in the world is to go outside?” Why are we thinking about this nonsense? What gives?

Desire is a super power: Audre Lorde and “The Uses of the Erotic”

I don’t want to give myself grief for having desires. Especially desires that are pretty basic to the human experience. It’s not like I’m a billionaire hoarding wealth for its own sake. Or a nicotine addict wishing for a cigarette even though it will actually potentiate, rather than satiate, her cravings.

I also don’t want to demonize desire itself. Desire is a facet of the creative life-force that Audre Lorde names the erotic. For Lorde, desire is a mirror that shows us our deepest needs and values, and pushes us to pursue our true callings in defiance of a culture that would have us repress and kill off parts of ourselves. No discussion of desire would be complete without mentioning Lorde’s classic essay, “Uses of the Erotic: The Erotic as Power.”

For the past five or so days, I’ve been in what people with ME/CFS colloquially call a “crash.” That basically means that my nervous and immune systems are FREAKING OUT with disproportionate fury because I pushed my body past the invisible, unpredictable line of its energy limits. I had been so excited to be able to go outside! I guess I overdid it. So now I’m stuck in bed, waiting for the symptoms to ease, curled on my side with my limbs tucked in like a boiled shrimp, my body humming and twitching with inappropriate adrenaline, trying to relax, trying to rest, and everything hurts, and I’m bored out of my mind, and my migraine medicine is only barely working, and god, I miss the person I used to be.

I’m a Leo rising, and I love my theatrical streak. I love having an aesthetic and putting together a look. I love owning the karaoke stage. I love the sharp and nuanced energetic exchange of flirtation, and the collaborative, cathartic engine of intimacy and sexuality. I love rising to the challenge of witty repartee, and the thrilling novelty of interfacing with a foreign intellect. I love feeling strong, playful, fierce and embodied. I don’t think the answer to my predicament is to shut down my desire for these things, even if, from the confines of my second story apartment tower, they are a torment to think about. They also remind me of who I am.

Desire is a torment to the characters in Rapunzel, but it is also the prime mover of the story; without desire, there would be no story at all. No locked-up girl child, no siren forest song, no forbidden romance, no daring escape, and ultimately, no blissful reunion.

At the same time, there’s an edge at which desire becomes corrosive and embittering. Especially when you want something that you really don’t have access to. If your situation is unendurable, and you can’t change your circumstances, the best way forward may be to change what you want, or find deeper satisfaction in what you have. There may be limits I have to accept, for the time being, at least. I mean, I’m definitely not ready for the apps right now.

And, as I observed in an earlier writing, when desire comes up against limits, it can give rise to creative solutions that bring us to completely new places. Maybe my current limitations can be an invitation to explore new ways of being in intimacy.

Or maybe that’s a horseshit platitude. I go back and forth on that.

So, from my urban tower, I work the edge of desire and acceptance. I take this time to try to figure out what I really want. I reassure my better nature that I’m too mature to text the toxic exes. And I ask myself: When is it skillful to lean into desire as a portal to authenticity and self-actualization, and when is it skillful to curb the jagged edge of craving and find contentment within the boundaries of my current predicament? I don’t have any easy answers.

I’ll give the last word to PP Arnold covering The Rolling Stones.

Your thoughts in the comments, as always, are encouraged and appreciated. Talk to me about desire, craving, and the frustration of not always getting what we want.

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Of course, to the rest of us, that future is a nightmare of violence and erasure. It represents an existential threat to our way of life, our bodily autonomy, self-determination, and safety; our access to basic sustenance, medical care, legal protection; a repudiation of our most deeply held values and our right to exist at all.

The hate-fueled populist movement is like a great wave rising and crashing through the culture. Arguing with these people—or even just having to hear their poisonous doublespeak—is like being pulled into the disorienting swirl of deep water. There can be a visceral feeling of being caught and dragged down in the undertow. A feeling of helplessness. Of moving against a frenzied collective energy. Of not being able to get your bearings.

Jean-Paul Sartre and Judith Butler don’t want you to feed the trolls

There’s a reason fascist doubletalk is disorienting. It is folly to argue with the fascists on their own terms because you can’t really argue with individuals who aren’t acting in good faith. One of the defining traits of fascist discourse is that it plays fast and loose and inconsistent with reality. Jean-Paul Sartre explains fascist rhetorical strategies in a 1944 essay on the Nazis written in the wake of World War II:

Never believe that [fascists] are completely unaware of the absurdity of their replies. They know that their remarks are frivolous, open to challenge. But they are amusing themselves, for it is their adversary who is obliged to use words responsibly, since he believes in words. The anti-Semites have the right to play. They even like to play with discourse for, by giving ridiculous reasons, they discredit the seriousness of their interlocutors. They delight in acting in bad faith, since they seek not to persuade by sound argument but to intimidate and disconcert. If you press them too closely, they will abruptly fall silent, loftily indicating by some phrase that the time for argument is past.”

Judith Butler makes the same argument about the present-day “gender critical” discourse:

The anti-gender movement is not a conservative position with a clear set of principles. No, as a fascist trend, it mobilizes a range of rhetorical strategies from across the political spectrum to maximize the fear of infiltration and destruction that comes from a diverse set of economic and social forces. It does not strive for consistency, for its incoherence is part of its power.

That’s why arguing with those people makes you feel like you’re drowning: Their arguments are inconsistent and specious by design. There actually isn’t anything to hold onto. Rhetoric, to fascists, is a convenient tool with which to batter and disorient; arguments are tools of convenience, and can be discarded and picked back up at will. The project is one of mass gaslighting and manipulation.

Who has the energy to push back against that? Who can answer that kind of malice with good faith? In the presence of empty rhetoric and religious, celebratory fervor, of course we feel helpless, of course there’s a tendency to want to shut down, tune out. Dissociate or numb out.

I want to propose that, rather than trying to engage these people on their terms, it’s more effective turn away from the populist dark magic and toward our own, more powerful magic: the ability to dream the queer futures into being in the present.

Queer futurism in the actual 90s

It was the 90s. I was 16 years old. My girlfriend S. and I were co-presidents of our school’s new Gay Straight Alliance (GSA)—an organization that officially consisted entirely of straight allies, since the only out lesbian at school was bullied into transferring the previous year. Queerness hadn’t yet entered our mainstream, even in the liberal area where I grew up. But, squinting hard, we saw glimmers of it everywhere, lurking just out of sight. We hoarded those glimmers. I remember learning what bisexual meant from an interview with Michael Stipe in Rolling Stone magazine and thinking OH MY GOD THAT’S ALLOWED?? I remember trading pirated VHS copies of films that modeled new ways to be in relationship, blowing our teenage minds wide open. Bound, the Wachowski’s campy 1996 lesbian heist drama featuring hard femme fatale Jennifer Tilly and butch force of nature Gina Gershon. Go Fish, Rose Troche’s sweet 1994 indie romance about girls in backwards caps and Birkenstocks finding awkward, adorable love. 

We organized a school trip to the nearest urban Pride parade in June of that year. I told my parents I was spending the day at a friend’s house. Late morning, the GSA students piled into one of the school’s dusty white vans with our faculty advisor and drove as close to the parade route as we could get.

There was electricity in the air. We parked the van and fell into step among the most colorful, joyous procession of people I had ever seen. People in fabulous costumes, alive with energy and laughter, moving toward the parade route, the epicenter of the best party I had ever been to. I had never seen a drag queen in person before; with their makeup artistry and fabulous showgirl outfits, confidence and poise, drawling “bitch” and “giiiiirl.” Women wearing Birkenstocks and Save the Earth tees, who gave no fucks what patriarchy said about how they should cut their hair, holding hands, casually kissing under flapping purple triangle banners in the blinding sunlight, butches and femmes topless except for x’s of electrical tape, leatherfolk roaring by on motorcycles, vests and chaps flapping in the wind, shirtless boys gogo dancing on floats, androgyny, mullets, the smell of sunscreen, and rainbows, rainbows everywhere! I’d never seen anything like this crowd, this energy, this level of freedom, queer joy and aliveness.

Love seemed to permeate the air. This giddy, wholesome, gorgeous feeling of liberated energy, as if something repressed had been let out at last, and the feeling was heady and ecstatic. I felt nourished, like a plant in high summer, as if I were absorbing the fabulous vibe of the event through my pores. I felt so high. I was radiant, smiling so hard my face hurt, and everyone was smiling at me. I don’t know if I’ve ever felt so euphoric. And afterwards, I was different, because I knew a different world was possible.

Incubating liberated futures: pride as a political strategy

There’s a reason the right is obsessed with shutting down pride parades and drag queen story hours. These events overflow with contagious joy. And the power of queer joy cannot be overstated. The distorted right-wing accusations of “grooming” and “ideology” mask the very real magnetism of queer spaces. Queer joy invites everyone in attendance to imagine radical new futures for ourselves and our culture. The fascists know enough to fear our joy for the fully functioning nuclear reactor it is.

The parade was a gestational space. In retrospect, my own queer future could not have existed without such queer events and spaces. The parade nourished a sense of freedom, possibility, and solidarity that is alive in the present, now, today, in me and in the culture around me, because of the magic that was woven there. Even in times of great repression, queer spaces have been alchemical powerhouses where possibility was modeled and explored, and new cultural forms were nurtured into being.

In short, I think we can win because our parties are better than theirs. By scores and fathoms and orders of magnitude. Maybe I’m naive, but that’s what I believe. I think the best thing we can do is stop letting the fascists set the terms of the debate and start making the political field a ballroom. We need to double down on joy as a political strategy. If we could get more folks out to drag queen story hours, if we lean into that experience of joy, I think we have a better shot transforming the cultural and political landscape in our image.

We throw a much better party

Right now so many people around me are experiencing paralysis and helplessness. Especially in the face of the hypnotic, feverish energy of the dark Trump occultists at their weird hate-fueled revivals. Trump’s culty, ranty megachurch rallies are like the dark mirror of a really good night at the disco. There is such temptation to wither before that energy. To dissociate. But, frankly, we throw a much better party than they do. All they have is hate. We have love. It seems like a cliche, but hey, where do you think most people would rather be? What’s more, every marginalized people have their form of pride. Every culture has sources of identity and joy. Let’s tap into that as a source of strength and magnetism.

I guess what I’m trying to do with this writing, for myself, and maybe for you, is to recall my own form of magic. To move toward solidarity and liberation. To remember that there is unbelievable power there, and that from the soft darkness of those gestational spaces we have already changed the world. A great antidote to despair and paralysis is to go to a drag show or put on a disco album. To find and celebrate community, to gestate queer futures, to remember what is possible.

Last night I had a vision of a disco in the sky
I saw angels and saints dancing together, like a mystical dream inside of my mind, but I remembered to move, I remembered that groove
I remember the thump of the bass and the pump of the kick
Because my heart was almost out my body and I felt free, I felt joy, I felt things I never thought I'd feel before
It was deep, it was soulful, it was techno, it was disco
A kaleidoscope of sounds, it was truly underground
It was an essential mix in the clouds, where we could dance and sing out loud, and everybody loved everybody else
There was no hurt, there was no sorrow, there was no pain
And like children we danced and we laughed, and we played without a care in the world
Without a flicker of despair, it was all about house music
It was that thing that we shared
A tribal feast of rhythm, a ceremony of sound in my mind
I must have went to house heaven…because nothing's that divine.

-Jamie Antonelli, “Divine” (Source.)

Party in the comments

Do you have a story of queer joy? Post it in the comments! (And if you’re comfortable, check “post as note” to spread the love.) Let’s inspire each other!

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Persephone would rather stay up here, thanks

Patience has never been my strong suit, and I’m not very good at being sick. One year into my bedbound era, I’m a hyperactive child gazing out the window, my imagination buzzing so loudly that it drowns out the algebra teacher completely. I am a clunky 1950s robot caught in a paradox between “must do the thing” and “can’t or I’ll crash myself,” keeling over in a tangle of sparking wires and metallic limbs. Chronic illness is a straitjacket. Chronic illness is a cement block that cartoonish movie mobsters have chained to my feet. As my condition slowly improves, my newfound energy seems to be channeling itself into irritability, impatience, and longing.

I have been working with the Empress tarot card since last fall. She bubbled up out of a mathematical formula as my tarot card of the year—a kind of guiding light or archetypal theme that’s supposed to help orient me through 2024. (For more information on this card of the year thing, see end note.) Honestly, this feels as bitter as the irony of being sick in the summertime. As if I am being asked by a tactless universe to thrive at a time when I cannot. In Pamela Coleman Smith’s iconic illustration, The Empress sits in the midst of a lush landscape. It is high summer there, much as it is here, now, on the Eastern seaboard of the United States, where I live. Her seat is luxurious, draped and cushioned, her dress loose and voluminous, her crown set with 12 stars, presumably representing the months of the year. The landscape around her seems to be bursting with the health and growth of the summer season, trees and grasses racing each other toward a bright yellow sky. You can practically hear the buzz of insects, the chirp of bickering birds.

The Empress represents the earth. The archetypal mother. Associated with the number three, she is creativity and Creation itself, life force, healing, the feminine principle who sits opposite the Emperor. She is Demeter and Persephone. The cycles of the seasons. I think of growing things. Verdant, tangled gardens. Colorful fruit and strange, carnivorous flowers. Ecosystems that sprawl and self-regulate, vibrating with mysterious, decentralized intelligence; life begeting life, decaying, lying fallow, gestating, and begeting life again. But the story of the Empress is just as much about life breaking down into mulch that nurtures new seeds as it is about what sprouts. So much of the Empress’ story takes place underground, in the quiet and fertile dark.

Persephone spends half her time in the underworld, after all.

And speaking of the underworld

There is a natural boom-and-bust cycle to ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a complex disorder of the nervous and immune systems and my primary diagnosis, that lends itself to guilt and self-recrimination. I push my body to the breaking point, and then break, and then melt down and wait in pieces, like the second Terminator in the James Cameron film, for my little bits to converge and reform into a humanoid shape that can go back to chasing down John Connor. (This is such a dated reference, but that film made an impression. In the 1990s, we kids had never seen anything like that clip.) It is not always easy to predict what will cause a “crash,” and when I am finally over a crash, it is hard to resist the natural tendency to want to throw myself back into activity—which is likely to cause another crash. Living with this illness is like walking always on thin ice, and it is so very difficult to listen for the first signs of cracks.

I try not to blame myself too much for these difficulties. Severe ME/CFS is an unforgiving illness, and a trip to the bathroom can break me if I’m already vulnerable. And in some ways, it’s even harder to manage my energy as I gain a little bit more capacity, because the goalposts have moved, and I’m having to learn my body’s boundaries all over again.

But I was also in the habit of driving my body past its true capacity before I got sick. Like many of us, I come from a lineage of refugees, and my body holds a felt sense of scarcity and vulnerability. This makes me very susceptible to capitalism’s promises and threats about the payoffs of success and the perils of slacking off. The malignant sorcery of white supremacist capitalism imagines everything—and everyone—as an exploitable resource to be stripmined for materials or labor. It seems normal to drive our bodies into the ground. So much of learning to manage my illness has been about unlearning these habits.

Pacing as devotional practice

How to replace the boom-and-bust cycle of ME/CFS with something more sustainable, to bring the ecosystem of my body into greater harmony, is an ongoing area of inquiry for me. This is a practice called pacing, which is the single most effective tool for managing long covid and ME/CFS, or any illness with an element of crashing 24-72 hours after activity, also known as post-exertional malaise (PEM).

Pacing requires attention. I’m learning my body’s rhythms, habits, and limits. I use biometric information and my own felt-sense to anticipate a crash before it becomes inevitable. I begin to notice, in real time, the subtle, edgy rush of a depleted body running off stress chemicals. I am learning my mental and emotional ecosystem. I notice that sometimes pushing past my limits can feel subtly virtuous, and that leaving a task half-finished can sometimes feel subtly shameful.

Pacing requires discipline. Not the discipline of pushing the body through more pushups so the drill sergeant doesn’t think you’re soft. Rather, the discipline of the ego surrendering to subtle signals from the body that we are done with pushups for today, Sarge. The word discipline comes from the same Latinate root as disciple, and can invoke the same notion of focused attention and devoted practice. I use technologies like timers and step counters to help me stay mindful of my limits as I work or move, but ultimately, it is up to me to find the loving motivation to prioritize rest above doing something I may desperately want to do. Persephone can’t stay above ground forever.

Pacing is frustration. It burns me. It asks my passionate, capricious, desiring and aversive ego to surrender to the reality of what my body can and can’t support. To my hyperactive inner child, who wants to run til her lungs burn and scream in triumph from the top of the monkey bars, surrender is as intolerable as gripping a hot coal. But a wiser, older part of me knows that pacing is my reality; not only is it is my best shot at living sustainably, but by staying within my limits, I am slowly increasing the scope of what I can do. The struggle is ongoing.

Nature is fractal, the world is a scrying tool

In The Future is Disabled, Leah Lakshmi Piepzna-Samarasinha writes that disabled QTBIPOC (queer and trans black and indigenous people of color) have already developed, through the challenges of incarnation, the creative solutions and survival skills that humanity will need if we’re to survive what’s coming. I am a white, cisgender woman, but I wonder if I am seeing some of Piepzna-Samarasinha’s disabled futurism play out in my own life. As my body, my own little slice of the planet, falters, the skills that are allowing me to come back into right relationship with it are also skills that make my world kinder and more sustainable.

Don’t get me wrong, I’m not trying to argue that there’s a higher purpose to my illness or intention behind it. That’s not how this stuff works. Suffering is senseless. But life on earth is fractal—what plays out on one level of the system plays out at other levels, at scale. And systems intelligence is nonlocalized, emergent—logic operating without origin. And meaning is something we get to make, using life itself as a portal into our own intuition, reading significance into our experience like tea leaves or tarot cards. And the longer I’m sick, the more the entire world starts to seem like a scrying instrument. I think there is great value in looking at our lives this way.

I am learning to listen to my body and mind with more intimacy and nuance. I am excavating deep places where I have internalized extractive capitalism, and where those reflexes are causing harm. I am learning how I affect my environment, and how it affects me. I am learning to tune into my own inner knowing, to observe how my body and environment actually respond to my behavior, and to course-correct in order to maintain harmony. I am learning deep compassion for other people and animals who are sick or suffering. I am learning that I am inextricably connected to other people. And that their decisions—to mask when ill, for example—affect me directly. I am learning that what is happening to the planet is connected to what is happening to my body. And I am learning to accept reality, to surrender to the physical limits of what my body and environment can and cannot do.

In systems theory, learning refers to deep, structural changes to the organization of a body. Illness teaches in that sense. I would never choose a curriculum this punishing for myself or anyone else. And, as I observed in a previous writing, there is no guarantee that anyone will survive an initiation. But there’s no denying that this illness is a curriculum in sustainability, surrender, and radical acceptance of what is. For many folks, ME/CFS is an illness of remission and recurrence. At the moment, with the support of pacing, pharmaceuticals, and the privilege of rest, my body seems to be finding some kind of tenuous balance. And I’m trying to surrender to the processes I’m in. I’m trying, friends. I’m trying.

Tarot card of the Year

This is an idea developed by Mary K. Greer that uses numerology and tarot to suggest a yearly archetypal theme. For more info, check out her book Tarot for Yourself. Or, if you’re not into math, pick a card on your birthday that feels intuitively resonant and work with it over time.

Further Reading & Resources

On the subversive power of rest, deep ecology and the wild magic of natural systems, and spirituality and the tarot.

• Rest Is Resistance by Tricia Hersey.

• Emergent Strategy by adrienne maree brown.

• Mutual Causality in General Systems Theory: The Dharma of Natural Systems by Joanna Macy

• Novelist and philosopher of chronic illness and deep ecology Sophie Strand, here on Substack.

• Writing, podcasts, and workshops from artist, author, and tarot scholar .

Dear reader…

Anyone else struggling with summertime, summertime sadness? Or thinking about backhanded, ambivalent “lessons” of tough life experiences? If you’re working with a tarot archetype this year, how is it resonating with you, seven months into 2024? I’d love to hear from you in the comments!

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The view from the bathroom floor

It’s May 2020, the height of pandemic lockdown. I am facedown on the bathroom floor, fading in and out of consciousness. My partner—spouse—husband—whatever—has shut down, which is a thing he does, a defense against overwhelm. It’s like his nervous system shorts out, like the circuits cannot carry so much empathic current without damaging the neural wiring. I don’t exactly blame him; to be fair, he has work tomorrow, and if he fucks up at work, in addition to losing something he is deeply invested in, the financial hit will punch a cannonball-sized hole in the side of our little economic unit that we absolutely won’t be able to recover from. Moreover, my health emergency has been constant and ongoing for weeks. So yeah, I don’t exactly blame him. But I don’t forgive him, either.

Sophie Strand wrote in a recent essay, in a burst of annoyance at trend-spotting psychedelic tourists, that many of us don’t get to choose our initiations. And that many of us don’t survive them. “Mindfulness isn’t some sterile, packaged experience of transcendence, or Costa Rican ‘shamanic plant ceremony,’” Strand says. “Those with chronic pain or illness, those with psychological anguish and PTSD, experience ego-destroying trips every day when they lie on the floor next to the toilet and try to pass through the needle’s eye of unbearable pain. When they decide to stay alive for just one more minute.”

Whether we live through them or not, I don’t believe we ever actually survive these types of initiatory experience intact. I think it’s fair to say that, one way or another, regardless of whether the fragile, complex, interpenetrating systems of the bodymind collapse so completely that the processes of life actually cease—we never survive an initiation. That’s what makes it an initiation. When the body and mind reach a threshold of crisis, they must transform if the organism is to survive. What emerges past that crisis threshold is fundamentally changed.  

Back on the bathroom floor, I am not thinking about financials, or the fraying fabric of my marriage, or initiations, or anything at all but surviving the microcosm of this moment. My awareness expands and contracts, my thoughts break apart and try to coalesce as I move helplessly in and out of consciousness. My mind spits out glossolalia, gibberish, fragmentary and nonlinear, like frames cut from a film reel flashing randomly on a screen. I think of one of those pinwheel sparklers you see on the forth of July, spitting out bursts of colored sparks. The groundless horror of not being able to make sense. A rush of pins and needles, tingling in my hands. My body spasms, pumping out more bile. My vision blurs. Gray numbness. Timelessness.

In the bedroom across the way, the bedframe creeks as my spouse turns over, expels a snore. No one is coming to save me.

Stop the pandemic, I want to get off

Do you remember what things were like in 2020? The the bizarreness, the horror and rank surreality of early pandemic? In the United States, the already strained medical system was actually in crisis. Our local hospital system, overwhelmed with asphyxiating COVID-19 patients, was short on respirators and rationing care. In fact, so many people were seriously ill that field hospitals had been opened at the local convention center. Looking back, it seems unbelievable that I was left to fend for myself when I was that sick. But I had, in fact, been advised by doctors to stay out of the hospital at all costs.

I had been catastrophically sick for several weeks at this point. Because I did not have respiratory symptoms, it did not occur to anyone that I could have COVID.

I had no diagnosis. No institutional support. No idea what was going on. I had no context, no story, no map, to explain what was causing my illness or these episodes of systemic crisis; whether it would kill me, whether it would last forever, or what the long-term consequences might be. That sense of narrative dislocation elevates the experience of suffering by adding a dimension of confusion, terror, and overwhelm.

Diagnosis not only gives you a map that makes sense of what’s you’re going through when you’re sick—it also functions as a kind of on ramp to medical and community care. When you have no diagnosis, often, you also have no support. The medical establishment doesn’t know what to do with you, and the people around you are uncomfortable, afraid, and maybe even skeptical about your condition; without institutional structure and meaningmaking, illness is disorienting, overwhelming.

It took almost three years of intermittent remission and recurrence of my illness for me to get a clear diagnosis. Prior to dealing with Covid’s long shadow, mainstream medicine hadn’t really studied complex, multi-system, post-viral illnesses like mine. When I first met the specialist who diagnosed me, she said, somewhat wryly, to give it a few years, because mainstream medicine was catching up. And she was right. Now, Ehlers-Danlos Sydrome (EDS), myalgic encephalomyelitis (ME), postural orthostatic tachycardia syndrome (POTS), and mast cell activation are much more well known in the medical community. But back then, as far as my family doctor was concerned, I might as well have had the Andromeda strain, or whatever it was that made aliens bust out of your chest.

Given the pandemic emergency, and the institutional culture and ecosystem they are operating in, I try not to blame the doctors who ignored me or suggested—unbelievably—that my illness was all in my head. But I don’t forgive them, either.

Back on the bathroom floor

Pain tethers you to reality. Pain pulls you back into your embodiment. Holds the tender flesh of your awareness to the hot iron of what is. The ego, on the other hand, is a creature of dissociation. It hovers above the ever-changing realm of concrete, tangible reality. The ego is made of stories and extrapolations. It dreams itself into existence in the tension between implied past and future. When pain drags us into the screaming immediacy of what is actually happening, the drama of orienting ourselves as selves, as egos, as social and temporal beings, becomes unbearable. We thrash backward and forward in time, trying to establish cause and consequence, to think our way to prevention and cure, while tethered to the screaming urgency of pain in the present. What’s happening? What caused this? How can I make it stop? The mind is like a wild dog lunging and bolting and yanking at a chain attached firmly to a fixed point, and the fixed point is the pain, which is what is actually real.

It is almost impossible to stop the thrashing of the ego as it tries to relieve its own suffering. And yet, it’s folly to let this kind of frantic rumination escalate. Worry and panic make pain much, much harder to bear. And, as meditators have known for thousands of years, if you can accept what is happening and still the mind, the ego shrinks, or even pops, temporarily, out of existence, and something remarkable happens.

Facedown on the bathroom floor, I accept the possibility that I might die. That no one is coming to save me. I have reached, perhaps, a threshold of initiation. And something shifts. From panic and helplessness to a quieter state of nonfear, as if I am floating at the center of a clear forest pool. The storm in my body hasn’t abated, but for a moment, the storm in my mind calms.

Acceptance isn’t a thing that you achieve once and get to keep. At least, that is the case for me. I can’t just get to a place of acceptance and stay there. It seems I have to fight my way back through the terror and agony to get to acceptance, every time. Sometimes I have to fight my way to acceptance in every moment, from moment to moment to moment, against pain that drags me back again and again. Usually, I don’t get there at all. But sometimes I do. And when I do, sometimes, something in me shifts. And the person that comes back from that threshold is not quite the same.

Suffering is bullshit

I included the Ram Dass quote at the beginning of this piece precisely because it makes me recoil. “Fierce grace?” Really? Suffering is bullshit. It is senseless. There is no virtue or higher purpose in suffering for its own sake. There is no valor, no dignity, in suffering. The glorification of suffering is a tool of oppressors who bully us into enduring exploitation by telling us it is virtuous to endure. And it’s easy, in moments when suffering is absent, to look back at a difficult time and acknowledge the ways we pushed back against adversity, building wisdom and skill. Or to admire great artworks that come out of profound suffering. But there is also a sentimental human tendency to romanticize suffering that I want to try very hard to resist.

At the same time, the skills I have had to develop, and the ways I have had to transform, in order to survive the past four years have made me a wiser, kinder person. I have greater capacity and compassion. I am less dissociated, I seem to feel everything more deeply and vividly. I feel more connected to what is happening to the earth in this devastating, apocalyptic epoch, and to other people and animals, in their suffering and joy. I am less lost in my personal, egoic dreams and fears, desires and aversions, and more connected to what’s real. My behavior is more in alignment with my own deepest values.

And I know, on a bone-deep level, that I can be relied upon not to abandon myself. I did not have that level of self-trust before. I know that I will keep advocating, investigating, and pushing to protect myself and those I love for as long as needed. I know because I did it. And to do it, I had to change. And I changed because I was suffering.

In this dharma talk, Zen master Thich Nhat Hanh seems to say first, that suffering can be a valuable teacher, and second, that the problem with suffering is not actually suffering itself, but rather, our limited capacity to hold it.

When you suffer, you learn compas­sion and understanding. But your suffering can also overwhelm you…To suffer some is important, but the dosage should be correct for us. We need to learn the art of taking good care of our suffering so we can learn the art of transforming it.

Regulated doses of pharmaceutical-grade suffering sound fine, but in this world, we can’t exactly titrate our suffering as we please. So I try to imagine a state of enlightenment in which it is possible to maintain that feeling of acceptance that opens the threshold of initiation in the oceanic depths of suffering. I cannot imagine being so evolved.

Meanwhile, we all get to make, out of the raw material of our experience, the meaning that is meaningful for us. We get to choose how to make sense of our lives. Ram Dass gets to decide that his stroke is fierce grace. I get to decide my suffering is bullshit.

Except I can’t draw any tidy conclusions about these initiatory experiences, these death processes, these underworld journeys—that ultimately almost all of us will go through, as part of the project of being mortal. Whether we survive them or not. So I will stay here in the murky ambivalence of it.

Thanks, dear reader, for being here with me.

I’d love to hear from you in the comments about anything this brought up for you.

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