Yesterday was severe M.E. day. Myalgic Encephalomyelitis is a complex, chronic, multisystem, neuroimmune disease. There is no approved treatment or cure and breakthroughs are just now being made in terms of biomarkers. It is the most underfunded disease according to its disease burden with one of the lowest qualities of life - lower than MS, late stage cancers, renal failure, congestive heart failure, and bleeding ulcers. 50% of Long Covid mirrors M.E. and 25% of people with M.E. experience a severe form of the disease.

I am so grateful I was never severe and even more grateful I seem to have recovered in a way that indicates I no longer need to worry about a lifelong M.E. diagnosis. But I wanted to share my experience with this illness, as someone who lived in the shadow of its hallmark symptom for years with my type of LC, and even just as someone who has witnessed its devastation on a community that took me in when I lost access to other communities.

When I got LC, I dealt constantly with symptoms of ME. Had I known about the condition in my first 3 months of illness, my recovery might have been shorter. Our society tells you to push through it, keep going. That is incredibly dangerous with LC and ME.

Its hallmark symptom PEM (post exertional malaise) is a delayed, disproportionate worsening of symptoms even after minimal cognitive or physical exertion. If you have PEM, you have ME. Every time you push through, you get sicker. Every time you exercise, you get weaker. Every time you try to expand your world, it shrinks back smaller. Malaise doesn’t cover it. Your body feels like it was hit by a truck, your chest feels like it’s under an elephant, your thoughts won’t come home, light and sound hurt you, you feel like you have the flu, you’re aware of every movement taking energy, allergic reactions increase. Rest doesn’t come easy, and it doesn’t alleviate. You’re left waiting for relief that may not arrive. People can slide from mild to severe by living in a boom-bust cycle. People can also go from mild to severe due to infections, and many have in the last few years due to SARS-COV-2.

I don’t share my story for pity. I share it because I can. Most advocates for this condition and LC are so ill that writing one post on social media means weeks spent in silent dark. I haven’t had clear PEM for over a year now. I’m living with repercussions from LC still, but I’m living without the chokehold of ME. At my most severe when I ranged from 5 to 50% of former capacity, I would’ve qualified as mild.

But I will never forget how it felt to wake up and realize breathing took energy & it was energy I didn’t have. The choice of dancing one night when I finally could even though I knew I was risking weeks of pain & limited capacity or possibly permanent loss that could mean I’d never dance again. Building a nest on my bed on days I couldn’t walk to the kitchen. The joy of a day without chest pain after 9 months. Having free energy to braid my hair.

I used to leap blindly into adventure. After getting sick, I was painstakingly aware that every step forward carried the hidden, unpredictable toll of every step back.

There’s a documentary about ME called Unrest. John was the only person to watch it & talk to me about it. Really one of the few people to talk to me about being sick at all. I remember a friend asking if I was really too sick to do stand up or if I just lived in LA where stand up goes to die, as I canceled on a show I’d finally booked while my brain felt like it was on fire from neuroinflammation.

I think most people didn’t see me as missing once I left their view, and that’s how it goes in this world. That’s why this illness is so dangerous. People are only visible at their best as it is, but many people suffering like this can’t be visible at all. We leave them behind without pausing at their absence. There’s no dramatic exit from our world, just a gradual slide from the light. #MillionsMissing

John stayed by my side across the country through everything & I did my best to be by his. During each adventure he went on, we’d talk about me joining next year. One time a conversation of maybe’s & sublet-searching was followed the next day with me saying I was reinfected again. The night I got my second infection that led to LC in the first place, we’d been talking about starting a podcast that was going to mostly be me asking him to tell his NYC stories. He read my draft for my first post sharing my LC experience when I was only a few months in, and we talked about how it felt like people were ignoring not out of malice but ignorance. When I couldn’t leave the apartment and was missing NYC walks with him, we planned a FaceTime and he took us to the streets.

We both had a tendency to hide how hard things were to not be a burden to other people or to help other people, and I still hid a lot of how hard everything was from him, but he was my main confidante.

The last four years have been a back and forth slide with my health. The last year has mostly been forward. Monday, June 15th, I used a weed whacker at the farm. I was excited to talk to John about it because of what it felt like it meant. After he left this plane of existence the next day, I spent 3 weeks in NYC walking where he’d walked, following where he led, and standing by his side on adventures he’d shared without even counting my steps. Safe to say that’s a bigger deal than weed whacking considering I used to count steps from my car to my apartment. The life I’d spent years grieving and accepting the loss of was within reach but the heart & soul of it was gone.

I spent a lot of the last few years grieving the present and the future as I lost control over both. This new loss made me revisit that grief with a finality right when it felt like possibilities were returning. In wrestling with grief & time lost & all I didn’t reclaim, I am trying to be kind to myself & remember I made mistakes but some paths back were stolen. I know now I could’ve visited in the last year. I’d talked of visiting this spring but I had things to get straight and rooms in my head to clear, and the return was placed on a big emotional pedestal when it should’ve just been about seeing John back in our town. All my regrets can’t be placed on illness. But it is so hard when you haven’t had access to the light to remember what it’s like to stand in it, let alone believe it’s safe to seek.

This is a world where the light is increasingly inaccessible. In reentering the world, I’ve had to weigh what is safe, what I’m willing to risk losing. I wanted to be a road comic. I was no stranger to the liminal & lower standards of living, and I certainly didn’t plan for my future well. After this kind of illness, I got a glimpse of what it was like to be trapped in between living and dying. I started caring about protecting myself because I knew what it felt like to truly lose control over who I could be, to barely remember some days who I had been. Over the years, every choice became a gamble because the world where this virus actually got under control slid off our timeline’s ever steepening cliff as we accepted worse and worse conditions in the name of status quo & bare survival.

Time is our most precious resource, and this illness steals entire timelines from some people. Even when you’re mild, you have to carefully allocate your energy. You think you have to do that already with the demands of current society, but with this illness it’s not capitalism that consumes you but an empty void you have to accommodate without warning. Doesn’t sound that different in theory, I know. But in all the time you hand over to the rigamarole and all the decisions you weigh, you’re not deciding whether or not you have the energy to brush your teeth today; and if you do, if that might mean you won’t have the ability to do so tomorrow.

I’m so grateful for how much I’ve recovered. There are people very dear to me who haven’t. People who became my community when community could only exist online. Casualties of us accepting a lesser world in the name of playing at normalcy. People who have to watch the world burn by as we keep getting it wrong.

I know the amount of control I lost over my life dealing with the mild range of symptoms. I can’t imagine living constantly and only in the worst moments of that illness, and for some people my worst days would be their best. I can’t imagine the constant weight of grief over the life they lost while living in a world so limited that even allowing themselves to expend the energy to feel that grief could result in the walls closing in even more.

This is a cause close to my heart. The lack of acknowledgment over the huge increase in disability while covid is still disabling people is a large part of the dissonance I feel in the world. I think being unable to overlook that world shift while most everyone else got to put the pandemic behind them has been a big part of my inability to live alongside the numerous dissonances of collapse and just reclaim my place on stage as a silly goose. I’m a goose that spent years with the canaries, and I can’t unhear their songs.

And hey, combine the steep increase in disability due to covid with the current news on how this administration is handling disabilities and you’ve got some bad news, baby. People in power have known what’s been happening over the last few years, and their plan to deal with it isn’t kind.

We’re all living through an increasingly confusing present while our options for tomorrow and our chosen futures are being stolen from us. I think it’s a fact of our current world that we don’t grapple with enough. I think it’s a type of loss we can’t comprehend, a type of loss we think we can’t fight to prevent. That inability to face and comprehend it is one of the reasons illnesses like this go unfunded, untreated, and often labeled as made up. In the back of our heads, we think there must be something wrong with people who don’t get better, that it can’t be that bad. We tell ourselves we would be able to push through. We can’t face the fact that that loss of control could happen to someone because that means it could happen to us. But it is happening - in so many different ways in this timeline - and all we do in ignoring it is make our own paths back less likely to ever be found while the invisible toll of those left to fall by the wayside grows each day.

If you want to learn more, there are links at the bottom for folks to follow, ways to learn more, and places to donate. Keep an eye out for CTAs to fight for funding and to maintain the current protections and care in place for people with this kind of severely limited quality of life and capacity. Fight back against the current administration’s attack on disability rights.

But honestly, I think part of the reason we’re in the wider mess we live in now is because of how ready we were as a society to shrug off how the world had changed due to the pandemic. We were so ready for it to be over, we gobbled up the lie that it was. We didn’t care about the vulnerable. We didn’t stop to think who that might include, that it might include us or our loved ones - not that that should matter but it does to our tribal brains. We didn’t sit with our grief or trauma. We traded growth and examination for returning to the hustle. And good god, that has snowballed into this mess where the powerful realized what they could get away with and we are all vulnerable in new and exciting ways while very few make the time to stop and build shelter for others.

Look, I get it. There’s never enough time. But if we don’t stop time now, time and the wish that we could turn it back is all we’ll be left with.

If we’re going to get through this mess, it’s time we really examine what community care means. Time we start to reconsider what small daily sacrifices we can choose to make before we lose it all just because we didn’t slow down enough to sit with what we stood to lose. Grief reveals everything. For a brief moment in 2020, we were all seeing clearly, grieving together, and demanding change. (I know, not all of us). If we don’t demand the world stop enough for us to slow down and grieve the worlds we’ve already lost now, we will keep losing new versions of it without giving conscious consent until this place is unrecognizable and we don’t even remember what’s missing.

Information & Ways to Help

Donate to Open Medicine Foundation

https://solvecfs.org/

#MEAction LinkTree

Clean Air Club Chicago - Making events more accessible in Chicago. Learn more about how to do the same or borrow air purifiers if you’re in the area

Clean Air Clubs in the US

Fran Haddock's LinkTree - GoFundMe's for People with ME

A few IG Accounts

Open Medicine Foundation - Research

@MEActNet

@TheSickTimes - Award-winning nonprofit news site covering the Long COVID crisis

Clean Air Club in Chicago

Nikosuvisto - Documenting Severe ME through Photography

Allie @MigraineDestroyer Bedbound at 26 - Documenting Severe ME & Her Substack -

@Themme_Fatale - "Disabled D-slur Drag Clown" - Living with Long Covid & ME

@RhymesWithDiva

@m.e_and_sophs_ - One of the millions missing

When you’re in the middle of a crisis, part of your body begs the question, “How long will we be here?” The same thing happened when lockdown started. The same thing happened after my second infection with SARS-COV-2 when I got sick then sicker then a different sick then just didn’t get better. The same thing happens daily as we’re inundated with news of the world’s various states of collapse, updates on scrolled-through genocides, tweets about unsanctioned war, quiet dissolution of human rights. We want to prepare ourselves, we want to be ready. Our nervous systems long for an end date. We need to know. How long?

My friend just got out of an unhealthy, long-term relationship and shared part of why she keeps self-sabotaging, “I think there’s a part of me that doesn’t feel like this is permanent. Nothing feels permanent. There’s still a part of me that’s still expecting him to show up and us to go back.”

Nothing feels permanent, but it feels like forever. The question is: how long will it be forever?1

The question we think we’re asking is, “How long will things be like this?” But in our guts, if we’re honest, we’re asking, “How long before it can be how it was?” I think we know that’s the wrong question, but we ask it on repeat anyway.

I recently moved back home to the farm I grew up on in Kansas. My dream was always to travel, to live in New York. Growing up in a small town that most people never left instilled in me a need for discovery. Or maybe just: growing up nowhere left me with the need to be everywhere. It’s one of the things that drew me to comedy. Losing your mind on the road: no longer just for poets and gold seekers heading west; now also for modern day philosophers selling their souls to the algorithm. Comedy and travel are still my dream. Though stand up is looking less appealing as it’s cannibalized by the internet. I guess most everything is suffering that fate.

Another friend recently announced she was leaving Colorado because it was too expensive there to get her feet under her. I told her I was back in Kansas for a while too, and I’d have to explain why later. There are a multitude of personal reasons I can rattle off, little things that stack up, the expense of living & my health included. My folks live a few minutes away in our small town, my oldest sister 20 minutes away. My family is wonderful, and I have land here that is beautiful in spring. I have rooms to wander in an endless cycle of forgetting why I left the last one and projects that require stillness and time.

But all those reasons for the why and how of it happening now don’t feel like they cover it. It’s reminiscent of when someone asks how you’re doing and there’s an echo of the everything behind your stumbling, “Oh, pretty good, you know.” I am here because that echo, the dissonance of continuing as I was while everything is how it is, got too loud. The compass was spinning and the destinations unknown.

I am grateful to have this home, a stable place I can visit to tend to who I am. Obviously having access to land is a privilege. Every day on the internet is a reminder of how lucky I am. We watch people’s homes be reduced to rubble. We witness people ripped from the arms of their loved ones, stolen from communities. People who’ve chosen to live in my home state are having to flee as the government no longer recognizes who they are. My generation’s individual displacements and returns are a whisper in the cries of a world turned over, and the din will only get louder as crises compound. Livable habitat is shrinking. Whether by climate change or fascism or war, it is all by our own hand.

Yet another reason I can rationalize not currently chasing my childhood dreams: the world I dreamed about is dying. Our ability to dream is dying. Our dreams have to change.

Back in 2020, I’d chased my dreams by moving to NYC. I was only there for 18 months. In 2022, I took a spring trek to LA that was supposed to be temporary, but covid disabled me and I never got to go back to New York. The haphazard cross-country journey left my belongings scattered in boxes from NYC to my sister’s in Kentucky to my parent’s attic.

I’ve since gathered most boxes and unpacked quite a few. In unboxing, I have discovered a treasure trove of items that I’d packed away for unknown periods of time, objects put into purgatory until a more stable home surfaced: half a box of Maldon salt left in storage last year in LA (you don’t throw away the good stuff), sample bars of shampoo and conditioner shoved among sweaters in New York, a set of dishes my parents bought me in college that wouldn’t fit in the car-move to Denver. All expirations void in the search for a home.

I’ve had a bit of an unconventional trajectory, but I don’t think the experience of unpacking boxes you’d forgotten about or packing belongings without knowing when they’ll be opened again is rare in my generation. A friend of mine recently started a comedy show called “Adult Show & Tell” in Madison, WI. She announced the first show with the following image:

If you’re near Madison, check out her show. She’s a wonderful producer, person, and comedian, and I know this will be a blast.
Get tickets for her show in Madison

She left LA during the fires, another unintentional uprooting with scattered landings: destination unknown in time and space.

My generation & the generations after us don’t know when or if we’ll own homes, but the uncertainty stretches further than that as our jobs become obsolete and what used to be the bare minimum becomes unattainable. Old dreams wait in attics while we try to start fresh ones in 250 square feet studios. We chase down dreams while they die and accept what we have to to make it work as we try to build in the middle of collapse. We move like strays, displaced by catastrophes and anomalies growing ever more commonplace.

Part of accepting moving back home was accepting new limits with disability. I don’t know how long it will be before I can work the full-time job or two it would take to survive in New York or even Denver, even if stand up were one of those jobs. How long it will be before I can rely on my body and brain to catch me. I don’t know if any of how I used to move in the world will ever fully come back, and the world isn’t getting any easier to navigate.

Everyone who asks if I’m doing better, seems to be asking, “Are you back to how you were before?” I am better, but I’m not the same. Some of that change is for the better though. Better is such a tricky word. I’ve gotten extremely lucky in that I have absolutely improved, but part of getting better after improving has been managing how I am different.

When you sit in loss long enough, it doesn’t become about how long it will last. It becomes about what is happening now. What is possible in this moment. And it’s in learning about what you can’t do that you learn more about what you can do. It’s in accepting what isn’t possible, that you find out what is and what it will take to reach it. It’s a process I think could be useful in this liminal space we find ourselves in, this time of monsters.2

It isn’t my dream to be here forever. But now that I’m here, and I realize I am here for an unknown period, I’m finding I do love it. I’ve let some dreams creep in of what the place could look like in a year, or how I might return biodiversity to an acre or two. In stand up, the feedback is immediate: the flooding rush of a good set and the devastating hollow that follows a bomb, both of which feel like they’ll fill eternity. But all the pay off from work on the land takes time and might not show up at all.

I know if I’m to get anything worthwhile done or if I’m to discover what could be, both in the literal changes of the land and the invisible ones in my head, I have to stop asking how long I will be here and just let now be the forever it feels like.

Last week, my friend John updated me on his cat Grandpa during a call, “She’s been hiding in the bedroom. I accidentally locked her out for 9 hours, so now that she’s back in, she’s refusing to leave. It’s like she’s worried just because something went away temporarily, it could go away forever.” Something we certainly couldn’t relate to at all.

Part of me has been sitting in a room I was locked out of. I think we all did that to an extent after lockdowns. A door was shut unexpectedly for an unknown period of time. Once it opened, we scrambled back in, blindly sitting in a space we thought was the same, refusing to leave with the newly programmed terror of it going away again stuck in our heads.

Sitting in unknowing is uncomfortable. Sitting in any new space is uncomfortable. I’ve gotten more comfortable over the last four years with all I don’t know.

I could fight myself and the world for fleeting moments when I get to eat again the bright pieces of what I knew once to be true, the hard-earned discoveries about my heart and the world. Or I can accept reality and go hunting for some other knowing.

Maybe the more we cling to the shape of our dying dreams, the less likely it is we’ll be able to save them. Maybe they’re supposed to decay, organic matter returning to the soil. Let it rot. Let the seeds return to the earth. Who’s to say it all won’t grow back. It’s terrifying not knowing how long it might take or how recognizable it might be when it does, but if it’s held above ground, wriggling and kicking, life will no doubt waste.

There are plenty of references to non-living systems being most successful when they mimic the natural breakdowns of nature.3 Maybe the dreams of our generation, individually and as a group, can follow the same path. Though we race time and lose ground the longer we wait to start the process.4

Maybe this all is rationalization, putting a big narrative bow on events largely out of my control. There are infinite ‘maybe’s in the unknown. That infinity can be terrifying or freeing. Whether this is foolish rationalization or not, it’s what my brain needs to move forward. I know that’s what we all need to do in a sense. Release the dying world and start the patient work required in the interim while we wait for the old to finish crumbling so the new can grow. Good luck out there. Let me know if you discover how long we’ll be waiting.

“I guess the only answer I have right now is books,” I laughed to my dear friend in the afternoon as we rambled through the delirium, looking for anything to say that did more than address the fog of unreality. “That’s all I got. If we all read more, maybe we can find our way out of this. Learn enough. Imagine something different.”

She tells me of her new excruciating and debilitating pain, then slips into discussing how her newfound foothold in the world is potentially dissipating with it. It’s a common occurrence in the world of chronic illness, but this one is particularly cruel. Oh you thought you’d already figured enough out? That you’d finished the marathon? No more hoops for you, huh, kid?

“I haven’t even processed that. And then today I keep coming back to: what if it isn’t even here? If we trigger a chain reaction event.”

We discuss how little good comforting yourself out of the feeling of today would do you even if you were capable of it. Neither of us want to be.

“We passed all these landmarks where it should have ended. So many events that should be world-ending. But it keeps going, and it’s going to just keep going. Has to get worse before it gets better. More and more people will suffer even if we can burn it down.”

She mentions that being the problem with accelerationists. “The people who are going to die in the burning are the people at the bottom.”

The vulnerable go first. “The people who’ve been burning.” A pause in discussion opens momentary floodgates where our grief for the world as we’d dreamt it hums in the silence.

I tell her about another book I’d read. “This scientist invents a humanoid AI that is too close to human for most people. Everyone calls for its destruction so it can’t destroy us. She says people needed to convert her invention into this world-ending being because we’re actually afraid nothing will stop us. It was that book you recommended to me. The Mountain in the Sea.”

“What book?”

“Ray Nayler. Hyper-intelligent octopus.”

“I don’t think that was me.”

“Oh, well then where did it come from?”

I tell her of another book. A grid-collapse apocalypse set in an Ojibwe community far north. “The Moon of the Crusted Snow. An elder talks about youth telling her the world is ending, but their world already ended and they’re still here. Anyway, I think you’d like the octopus one. Since you recommended it.”

Outside in the wind alone, I pass the apple tree. It is the only remaining member of the fruit orchard my dad planted a year short of half a century ago, before starting a family. Half of it lies split, splayed on the ground. A lightning scar carves the flesh of the limb I used as my first step off the ground when I was little enough to think climbing 4 feet to the sky and tucking yourself behind leaves meant pure invisibility. The severed limb whips its new growth in the steady wind. Gentle white buds quiver, opening to ask for pollination and receiving punishment. The ground-bound limb had somehow held open its path to sustenance despite the irreparable break.

The day rewinds: reading a substack or two alongside the news and quick text bites of doom on twitter, catching a video of children forming human shields on bridges over lunch. A woman, whose face we’ve watched shift and melt with despair and determination through her people’s genocide, marches through the devastated landscape of her city, holding a white board with a call to action.

I head to another corner of this c-shaped, generational home. At the end of the trailer-house leg, added before my birth, the side of the open expanse where the sun is setting stretches wide. The wind usually dies down when the sun sets. When it rises and when it sets, the air changes, things get quiet and the birds take over the prairie soundtrack. Not tonight. 10 minutes to sundown and it still howls like the sea. Branches leaning and cracking. Loose metal on the barn threatening to join with the sky.

The air whips into me as I turn a corner around the house into the unprotected northern wind, memories of it shifting my hair in constant directional change before noon. The sun’s dropped far enough to emit the perfect orange glow.

A work meeting with a brief mention up top. What are you going to do? Not mention it? My coworker from Brazil: “Things are pretty crazy up there.” A couple minutes reverence for the undoing of all illusion of humanity. The casual casualty that is our world in its possible ending.

My feet carry me to the front door, and I grab my camera and return to the sun setting behind the collapsing playhouse under the creaking windmill. The patchwork, one-room building stands unwavering in the wind while the metal vane of the mill creaks high above it. Flourishing trumpet vine that’s just coming out of winter dormancy secures both the playhouse and windmill to the ground. Twisting twigs of new growth, constantly staking claim, trap them in their collapse. Before either could fly away, the wind would need to tear up roots. I spent some of my last spring out here documenting the vine’s growth while I tried to heal and grow my own capacity.

Tomorrow marks day 31 of documenting the sunrise since arriving at the farm this March, the last intended consecutive day. I’ve been working on the project for several reasons that aren’t relevant here, but one of them was the consistency of the routine itself. Partway through, maybe on day 8, on a particularly unstable world day, I thought about how I’d made it easy on myself. I’d chosen an activity centered around the one constant in routine these days. The reliable revolution. A simple assignment: The sun will get up tomorrow. See what you can make of it if you do too.

I have felt a little lost in time. Or who I am to the world outside my head anyway, has been a little lost to lost time. The only way to fix that is to jump back in. So hello.

I wrote the segment after this around June 7th. Written and wrapped in a morning. Ready to go. Then in getting ready to leave the farm for LA, the ICE raids started. “Started” used with the same looseness used when we talk about most all the horrible things happening that suddenly got horrible enough to swing our focus for a while. And as I tracked the raids, those June words got buried in time under that nagging pull toward urgency to do something about the next thing. Words and feelings from a month ago lose relevance as time stacks its quickening events. Bombing Iran. Protests. Floods. Nice grasp on reality you got there. Would be a shame if we added another month of collapsing chaos to it.

There is no catching up. There’s no right time or way to talk about any of this. Some of my own personal startings or failings to do so seem to face the same blocks. How do I catch up with someone I haven’t seen in years without giving any context. I had so little control over how I moved through time for so long. Illness & disability from covid turning hours of activity into the loss of self for a week or more when I was already only popping up occasionally at not my best to say hello. Who I was was buried under how much of a struggle day to day life became with loss of health.

Now here I am on more stable ground with notes from lost time. “Hey, so good to see you. How’ve I been? Oh you know I got sideswiped enough that I ended up in a different reality than most of the people in my life and now that I’m finally capable of it, I’m trying to re-enter a society that branched off without me. How about you? Which reality did you land in? ”

How do I choose what to start writing or sharing first after it all stopped for so long. Ramblings in my head about how a person’s usefulness is being redefined and and those definitions are becoming weaponized - all the patterns across the news screaming the dangers of it. How can I talk about January fires while July raids bear down on us. Everything feels so important and somehow nothing is because it’s all happening at once and so quickly and how could there be room for it all? Make room for a fragment at a time and give that fragment your full fragmented attention.

You have to keep track of so much on this timeline. Keeping track of yourself becomes impossible. What, be aware during all this? Our awareness is kind of tapped out tracking genocides and fascism, you want me to be present during all of it too?

Anyone who feels they aren’t a brand new person or at least waking up in a brand new world after the last everything is lying to themselves and in for a bit of a shock when they get around to processing. That or they’re boring. Which honestly in this economy? Good for you.

But I don’t know how you make a difference here without protecting your sense of self. When the whole aim is to wear down individualities and people’s worth. When the aim is to fracture our connections and attentions and communities to keep us weak and compliant and separated. Or hey even if it’s not the aim, it sure is a handy side effect.

So hey, how are you? I’m sorry it’s been so long. Where should we start?

June 7th, 2025 - Sometime in the morning on the porch watching the birds on my childhood farm in Kansas

This little chapter of time at the farm is almost done. I didn’t accomplish what I thought I might, didn’t write 8 essays, didn’t let all the thoughts out so they’d stop eating at my head & become potentially digestible for strangers. Didn’t start a video series or podcast or write a new 10 or even get used to regularly sharing who I am online. Didn’t magically heal my illnesses.* But I am different than when I arrived at the end of March. In ways I can’t prove or monetize. In ways you only think to track in the middle of nowhere.

*(Note from July, I actually did recover quite a bit of my capacity, whether through all the rest or practices or supplements or just the luck of time since it’s been almost a year since my last reinfection. I did more than I would’ve been capable of 3 months ago this month, and I am grateful.)

Seasons change everywhere - even in LA with its stagnant stolen palms. In New York, spring slams against you. Life breathes again after months of isolated marches through winter. Parks come alive with people who’d forgotten their depression can melt in the sun on the tongues of strangers. Spring and then summer are events, punctuations to chapters where the carefully curated nature tells you again it can’t really be controlled. Spring in Kansas is different. You take it in slowly. I think mostly because there’s not much else to look at.

Two months isn’t much time. I planned for it to be enough to do more than I did. It wasn’t. But it was enough for whole fields to shoot from inch tall soft green blades to over a foot tall golden stalks. Growth, fruit, starting to turn. Enough time for shelterbelts of trees to fill in from skeleton silhouettes to bushed green guards. Enough time for the birds to move in. I couldn’t tell you what all they’ve had time to do. Hours of watching them swoop and fight the wind and chatter, but they haven’t been polite enough to translate for me. Even though we provide the houses, they haven’t once invited us in. Vines have overtaken my old playhouse, blocking the nailed shut door. Iris have come and gone.

It’s easier to track time here not because it goes more slowly. I’ve seen enough sudden summers to know how quickly change happens on the prairie. But because there are fewer carriers of its effects.

I think it’s comforting to us as a species to track time. We do it in cities too. We find buildings slowly being torn down and document their descent in our instagram stories. We pick a favorite tree and let its curling bark grow just enough to brush it off. We find and claim our own homes to anchor us in time.

That’s part of what has made the last few years (decade probably) so disorienting. It is impossible to track the changes. There are too many carriers of its effects. Time hasn’t sped up but we can’t keep our eyes on any one sign of change or decay. This year especially has gone rapidfire. We get used to it. We notice less because there’s too much to notice. We can’t track the seasons because we’d have no time for anything else.

I think if you’re able, it’s important to track time as best we can. Not all of it. You wouldn’t function. But if you don’t track it at all, you will lose who you are in it. The world will have become something entirely different while you scrolled and sometimes slept. Two years of a genocide will have buried your heart under its rubble. You will have forgotten the promises of what the world was supposed to be when it stopped. And not noticed that when it restarted, you accepted a new, inaccessible one where people fall to the wayside because that’s just how it is. It’s all just how it is. But it’s not at all how you once wanted it to be.

I started a little essay about trying to track time back at the end of January. Finished it in March. Scrambling to add more and more events, account for more and more pieces. It never felt finished. So I didn’t share it. It’s useful now to look back on. Find not just how my brain has changed in writing, but just how many markers of the passage of time have been buried by even larger, more pressing landmarks.

So I’m sharing it here. Even though the idea of sharing something about January in June is very silly. Even though I have structured other ideas about new events and who I am in them. Maybe who we are in time should hold relevance for a little longer anyway.

January-March writing:

Time has been a bit difficult lately. I feel like most people can agree something went off the rails in 2020 but since 2025 started, time has felt more like an avalanche. Not a real life avalanche. An avalanche that exists in one of those constantly generating animated loops. At the end of the day there you are at the bottom of the hill buried in snow and somehow it pans wide and starts again from the top. A groundhog day of suffocating crises. I’ve managed to keep my nervous system relatively chill. The last almost three years of chronic illness have taught me a few useful skills in that area. But I start and end nearly every day with the heavy feeling that there is something I am supposed to be doing. That something is coming, something is here, and there has to be something I can do.

But between capitalism and life and the avalanche, I end most days feeling like I’ve done nothing at all. Yes there are good days and I am learning and aren’t we all, but there has to be something we can do.

I’ve felt a similar compulsion for the last almost 3 years since being disabled by covid, especially when I started doing better. Honestly I’ve felt it since 2020 but it’s more personal and constant now. Oh wait before that. I remember the story I wrote when Kavanaugh was confirmed, remember that first heart-dropping 2016 election in the green room of a comedy club, remember when I was a kid the necessity of cutting 6 pack rings to save the fish. People are always saying “everyone’s always saying the world is ending.” I miss when it was happening more slowly, or was just going to blink out or however y2k was going to (and maybe should’ve) went down.

The urgency has compounded. I feel like with everything I’ve learned and all the people I know now who’ve helped me and who’ve been abandoned by the world, that I have to do something. Since I was a kid, I’ve written, so that’s what my drive has become. There’s a part of my brain constantly circling around the idea that if I could just figure out the right way to say it all, I could help save the world. Yes, I know how that sounds. Hey it’s not like I’m going on missionary trips. Or all right, not help save the world, at least help one stranger. Butterfly. Ripples. That whole thing.

But the last 2 ½ years have been such a survival whirlwind and the world hasn’t stopped doing that whole messing with time thing, so I’ve ended up with haphazard notes. I feel like my minotaur barbarian in an old DnD game that my friend Rachel drew, fumbling a roll for disguise and standing before you having rolled down a hill, covered in leaves and sticks and information I’ve picked up along the way. Trying to make an excuse for the lack of continuity when I can barely explain the tumble. “I am in disguise” and you’re not falling for it. Hopefully this is the start to the detangling.

I don’t think I’m the only one having trouble with time lately. Space and time are rapidfire now. No sooner do you catch a piece of reality than a new one is hurtling toward your glove.

I’ve been needing to write more for years. A combination of there being too much to write about, the next thing to process coming before the last one was finished, my own process and writing abilities changing with post viral health issues, and a steadily rising low tide feeling that nothing I could say would matter. The last was batted around with the don't be silly swat of, “Well of course it doesn’t matter. Nothing matters in that way. People still say stuff. People say so… so much stuff. What matters is to create.” What matters is output, content, amounts, say something, say anything at all. A waste of time when time is already proving itself difficult to hold. Get to the point.

But I do think there’s something intrinsic to writing that borders on a necessity for hope and belief. That the words will matter. I do believe in writing more than any other form of communication. And I do believe it’s been worn down and picked apart so much by the creation of content and social media and by the internet creating a self-consuming pit of information we couldn’t maintain.

There’s a manufactured doubt about sharing or doing or creating anything right now that I think we all share. Forget the hoops of the algorithm. It’s the impossibility of truth with propaganda and conspiracies. It’s everyone being so trapped in the belief that their own reality is the ultimate truth, the foundation their world is built upon, that there is no room to shake that foundation and change someone’s mind. Some people’s world views are so tightly held that tugging on one belief would shatter their reality. Everything has become so unstable that people cling to their safe world’s existence with a viciousness. We are defensive and prideful now more than ever because we are more scared and overwhelmed than ever before. That’s the generous view.

But even if you are able to get through, to craft something that contains both the thoughtful convincing and the needs of the algorithm it takes now to get a moment of someone’s time, how much of their mental capacity could possibly be left for you? Their time is already filled with constant content and information. We’re too overwhelmed to communicate in a meaningful way.

And that’s just today. Tomorrow there's another truth needs reckoning with. And if something gets through, what is anyone expected to do with it right now? Share it in an Instagram story. Beliefs reduced to 15 seconds. We’re creating ripples in tides.

The constant information and the constant overwhelm is by design. We know that. It’s warfare. But fuck that. We have to have hope. We have to believe what we do can make a difference.

So pick yourself up, unbury yourself from time’s avalanche, start somewhere. I’m starting with January.

January started with fog and smoke. Echoing booms of fireworks as midnight approached with impenetrable mist leaving their light to imagination on the Los Angeles skyline. Palm tree lined hills became invisible even before the sun set.

I’d just gotten a rubber chicken for Christmas. I figured it should witness the invisible fireworks. So I added its classic honks to the joyous chorus of neighbors, countering the rather ominous start to the year and its stifled horizon.

I have to remind myself. Before the fires and smoke of January, there were the fireworks and fog.

While fires still rolled, the inauguration happened.

But that’s not right. January started with terrorist attacks. New Orleans. Tesla explosions. Sometime after all that, the grants disappeared. My sister calling as cancer research was blocked. Before that more rights. Maybe the grants and blacked out reporting were after January. Everything disappearing beneath us. It’s after January already and now more information is disappearing. Released reports from a shutdown CDC about feline to human transmission of bird flu before the reports disappear. Jobs disappearing. Resources. People. Identities. That was February and now March has arrived as it all continues to slip under a rug covering a cartoon pit that would be entertaining if it weren't so evil. Tarriffs. GDP. DOGE. ICE.

Somewhere before the disappearing was a nazi salute. A takeover. No it wasn’t. Yes it was and it is. There's no mistaking it. You don't accidentally heil.

January passed over the country like a rolling brown out.

But then again, no. January started with the fires. Communities wiped out. Communities responding. False alarms at 4 am. Gathering documents. Over 60 mph winds. And across the world, unimaginable loss and brutality still bleeding out under the false gauze of ceasefire.

You see what I mean about time? Too much happens in it to keep it straight.

On my personal timeline for the sake of simplicity, I’m going to say that January started with Paddington. And ended with Paddington 2. In between that - Planet of the Apes, Smile 2, X-Files, Perfect Days, Fire of Love. Similar feelings off the screen. Everything bookended between the story of a bear who is particularly good at finding the good in people. I wish I’d learned everything I needed from him. But I feel like what I needed to learn to start surviving the everything was a lesson learned in the fires.

This isn’t even finished. We haven’t even talked about January yet, not really. Tricked you. Didn’t mean to. Time got away from me. Told you it was slippery.

I hope you can find ways to keep track of who you are in it.

Text on screen:

For the last 6 weeks I’ve documented every sunset in some way out on the farm I grew up on in Kansas. I came out here at the beginning of April to spend spring resetting, seeing family, resting, and working remotely.

I knew I wanted to spend part of my time trying to reclaim some of my own creativity, but I wasn’t sure what my capacity would be. I spent the first work not having any energy or brain beyond work, needing to recover after moving. At the end of that week I caught the sunset from inside through sheer curtains and decided then that I’d capture every sunset in some way.

Since then I’ve spent 5 minutes to an hour every day watching the light change & studying shadows move across a long landscape changing seasons.

I’ve learned a lot, starting with what it’s like to do a project like this with a different capacity than I’ve had during other springs out here. Energy is calculated. And with my POTS (Postural Orthostatic Tachycardia Syndrome) I have to watch my heart rate which I’m not as good at when I’m distracted by pretty light and birds. The highest spike so far was 177 bpm and that’s okay sometimes you have to miss the light changing from orange to red to go put your feet up against a wall. And that’s okay bc take a video of your feet. That will surely come in useful some day. Hopefully not in a desperate monetary way.

My output has been slower than I’ve liked but I know when I go back through I’ll get to watch spring and maybe remember some of the ideas I had when wandering. And then there’s the birds. I’ve taken so many photos of the birds.

So. That’s some of what I’ve been doing. Trusting the process and taking time each day to slow down. I hope you’re able to do something similar for yourself. Especially you know. With the everything. Even if it’s just taking 5 minutes at the end of the day to watch the light change.

I’m back at the farm. My family still has the farmhouse I grew up in, out in the middle of nowhere. The open space kind of nowhere, with a nearby town of 450 and houses sprinkled in once every couple of football fields along surrounding dirt roads.

I’ve been trying to get my feet under me and restart for a while. I came out here 5 years ago in spring when the pandemic started. Thinking then that I didn’t know when it would make sense to spend any period of extended time out here, and I knew it was something I needed to do. When would the world slow down enough again to make the middle of nowhere make sense? If we had to pause for a couple weeks before normal restarted, might as well take advantage.

Now with the world spiraling rapid fire and my own capacity restarting at a crawl with chronic illness, I’m here to find the slowness again. To more intentionally keep track of time for a while.

I need to rest. Find my baseline. See if it can increase. Find out what happens to my body and brain when it’s given more space and time. The last few years have been rolling survival with little room for much else. I don’t think I’m special in that way. Most people only have capacity for survival right now. It just looks different for everyone.

In 2022, I went from a lifestyle of running toward everything I could to one of forced stillness. From a pattern of never fully planned leaps into the unknown next to one where small steps could lead to lost ground.

In 2020 I moved to New York to chase a childhood dream, right before the first pandemic winter. 2021, I went on a solo 10 week comedy tour in a prius to chase home again and be reminded of who I was by seeing everyone and everything I’d been missing since the pandemic began. And by collecting all the different versions of myself scattered in homes and stages around the country. Then omicron in New York. Some more leaps at the start of 2022, rolling movement to LA that was intended to be temporary. Then halfway through 2022, the world became very small again. The rollercoaster of symptoms after my second covid infection made everything about the way I had been living my life impossible.

I’ve been quiet since, partly because I haven’t had the capacity to be loud. Partly because I sort of stopped knowing anything. Or at least I had to just learn for a while. There is so much you don't know with illness. But that's not special, there is so much we don't know right now. Truth has become amorphous and reality is curated, but that’s for another time. I’m not really sure I know anything now, but I know I’ve learned more than I’d like. And I know that I have to feel useful. And I can’t do that while quiet.

I’ve got to learn how to be loud again. Find out what that looks like inside a more measured life.

So I’m back out at the farm, to slow down. Make survival easier. Get better. Obviously to spend much needed time with family. And because home is a place that reminds you of who you are, and I need a bit of that to rebuild who I am on any stage and who I’m going to become as the world keeps backsliding. I’m hoping to visit more homes this year, spend time in places and with people who do the same reminding. But first, I’m here.

I know I’m lucky to have a place where I can slow down, both for physical and mental health. It seems more important now than ever to be able to gather yourself. I want to be useful. I don’t think that’s rare right now either. Most people I know have a steady pull of “there has to be something I can do, something I should be doing”. Sharing stories and consuming information just to make some ripple in it all. Balancing a pull between reminding ourselves of the good in humanity while staying informed on the evil. Keeping up with the times but tracking our own place in it. It’s too much. The constant spiral of the world pushes us forward into lonely patterns of solely survival. In between we try to connect. (A little less sweetly than otters holding hands while they drift and sleep on the water, but you get the idea).

I’ve been swimming in a sense of urgency trying to keep up with the world, needing to help, but it feels like I haven’t done anything tangible. Nothing that feels like it doesn’t wash away in a day. I’m hoping out here to reclaim the tangible. Let myself go painstakingly, intentionally slow but hopefully steady.

Anyway. I don't know what will come of this time. I don’t know what will come of this substack. Except I know I want to get better.

Some of that is resting. Some of that is learning. Most all of it I think will require a lot of intention and listening. Which might make some of the output slow. I’m two weeks in to starting to document and write more and work on to-do’s after a week of simple recovery. I can wander a little farther some days at sunset, and I can think a little more clearly after working for a while. None of this is going straight from the sky to the screen, but allowing input and output the grace of however long it takes is something I need to practice or I will never do anything again. I’m slower now. That’s okay.

Or it might go too fast. A lot of ideas and rambles and projects that have been forced to be small and quiet because I couldn’t keep up enough to let them be free.

I’ll share videos and photos and writing. Hopefully all three of those will get better in the process. I’m relearning a bit who I am, in writing especially, with what is for several reasons a slightly differently functioning brain.

Some of what I share will be writings on the world right now or what I’ve learned through a new lens of chronic illness and disability. Some of it will be what I learned just this week to try to be more useful in the world during collapse. Some will be advocacy.

And there will be moments just documenting spring in the middle of nowhere with videos of following birds in the wind with my little Canon 50mm.

Any useful skills or resources I test, I’ll share. Anything about the process I can translate that might help, I will. Still figuring out all the segments and details and lists.

I just know I need to create again. Do something in the process of trying to figure out how to actually do something about the everything. Hopefully some of it’s funny. We’ll get there. Hopefully some of it’s useful. No promises. Except for the promise of working on getting better, and sharing whatever that looks like.

For now, here’s a minute of morning birds.

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