I’d like to have published an article that day, or gone to a protest, or joined fellow patients at one of the various events taking place in honor of the occasion (shoutout as always to the excellent Sick Times). But I was too ill, as I often am.

I am homebound, only occasionally leaving my apartment with difficulty for medical appointments, and my welfare at home varies. On good days, I can read and write and spend time with friends. On bad days, I “crash,” am beset with migraines, I wait for the storm to pass. I take my medications. I am a reluctant convert to audiobooks. I cover my eyes with satin and silk. Little luxuries. I cry.

How to raise awareness for this disease that makes us so tired, so weak, and so small? I have tried so long to be loud, but who can hear me here, alone in this apartment?

On Long COVID Awareness Day, I posted a few tweets about my life, my experiences, yet felt so far away from the world. It felt perfunctory, hopeless. Is it possible to speak about Long COVID without having others speak over you? Without having people flood in to insist you are not ill, or that you are ill from the vaccines, or that your experiences haven’t happened, or that your suffering is unfortunate, but necessary?

What about the alienation of speaking about Long COVID and being continually greeted by the deafening silence of those pretending not to hear?

Oh, yes, people you know - knew - from your everyday life, those who fight for “equality,” whatever that means to them. People with strangely large platforms online, you don’t know why they have them, now you suspect it’s because they told a good joke once or twice, nothing more. Influencers. Politicians. They say nothing. They do not care.

My mother died on January 3, and since then I’ve struggled to return to my advocacy work.

My mom cared.

She died after a fall, after a brain bleed. I do not think she forgot me until after she forgot how to breathe.

Beware the Ides of March, she used to say of March 15, the day Julius Caesar was assassinated, and the famous line in Shakespeare’s play. Beware the Ides of March, and now she’s dead, and the Ides of March is Long COVID Awareness Day.

The romance is draining from the world.

The art is draining from the world.

I am draining from the world.

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Today, for example, I imagine ringing her up, telling her I’m back at work on The Gauntlet, writing away. She always loved to hear that.

“Yes,” I’d tell her, “I’m writing about how devastated I’ve been since you died.”

My mom died on January 3, 2026.

A bunch of doctors gathered in the hallway outside her room to thank her for being an organ donor, reading a tribute written by my father. The doctors learned about her master’s degrees in math and music, and how she conducted our church choir for decades. They listened patiently as they learned she taught college and high school math classes for many years, how she took up painting after retirement, how she was a loving mother to two children: my brother Kevin, and me.

I was here in DC, still homebound, watching via Facetime on Kevin’s phone. A dear friend lay in bed with me while I sobbed, holding my hand. They removed all the life support. She breathed for one more hour.

Since January 3rd, I’ve read Crying in H Mart by Michelle Zauner, The Mercy Papers by Robin Romm, A Heart that Works by Robb Delaney, A Very Easy Death by Simone de Beauvoir, The Joy Luck Club by Amy Tan, and The Year of Magical Thinking by Joan Didion.

I guess I’ve approached grief the way I approached the pandemic: with a hunger for more information. Trying to understand is a coping mechanism. I think of those interviews with CEOs where they’re always bragging that, as kids, they’d take apart their toasters and VCRs, desperate to know how their electronics worked. Maybe I’m like that, but with tragedy.

I know much more about grief than I did a month ago. I know that I do not move through the “stages of grief” in a linear manner - denial, anger, bargaining, sadness, acceptance. Rather, I seem to experience each of them repeatedly, in an endless loop, ricocheting wildly between boiling rage and the snotty, wailing. convulsive sobs of a toddler (the latter loud enough to alarm my cat).

As far as stages of grief go, denial is my favorite. As times, I feel quietly certain that mom is, as always, at home in Pittsburgh, going about her day as I go about my day. I understand why denial is both typical and necessary as part of the grieving process. You simply cannot spend 24 hours a day fully aware of your loss. You must allow your brain to protect you from it at times.

But denial is fleeting, and as time goes on, it’s more difficult to dwell there. Denial curdles and mixes with bargaining, my least favorite flavor of grief.

Bargaining takes many forms.

I fantasize about the sort of daughter I’d be if my mom came back- a much better one, certainly. I’d start by heeding her requests to call every day, which I found to be over-bearing when she was alive. We usually spoke about once a week, sometimes every other week. When I was well, this was due to my busy schedule; after I got sick, it was due to my migraines and exhaustion.

Even on our last call, she repeated her common refrain as we were getting off the phone, “call any time,” to which I’d say, “I will,” to which she couldn’t resist adding, “you know, Jane’s kids call every day,” in a gentle teasing sort of way, Jane being one of her sisters. “Oh, well, we can’t all be Jane’s kids,” I’d always tease back.

These kinds of ideas- if you give my mom back, I’ll be a better daughter- aren’t uncommon, I learn. They’re pretty classic “bargaining”.

A friend of mine tells me that when her father was in the hospital last year, on his (so they thought) deathbed, she made all sorts of promises about becoming the perfect daughter should he only pull through. He lived. “And now,” she sighs, “I’m an evil daughter again.” I laugh. I find it oddly comforting.

There are other forms of bargaining. Imagining what you could’ve done differently to prevent the death of your loved one- that falls under the “bargaining” category too. And boy, do I do a lot of that.

My mother was suffering from Parkinson’s dementia. Although she’d only been diagnosed within the past year, she’d been declining over the past two years, losing her ability to participate in many of her favorite hobbies and daily activities like playing piano, painting, knitting, conducting the choir, driving and cooking.

But she still carried on relatively normal conversations with me, other than the occasional trouble with word finding or losing the thread of a thought. And as for her decline, to a degree I saw what I wanted to see. I wasn’t as worried as I should’ve been.

I hadn’t realized how dangerous day-to-day life was becoming for her. But on December 22, my dad informed my brother and I that my mom had fallen on the stairs. The following weeks were harrowing, with bad news following bad news. She never left the ICU.

My parents had been talking about moving into assisted living- why hadn’t I urged them to move faster?

My mom mentioned to me that she had had a fall recently- why didn’t I ask for more information? I told her to get a cane, and she had responded “oh, I don’t think it’s time for that yet,” while laughing. I replied, “mom, I have a cane, and I’m 39!” Why didn’t I press the issue? Why wasn’t I more worried about her mobility?

I literally write about disability for a living, and it didn’t occur to me to ask about the mobility modifications at our house?

All these thoughts occur and reoccur to me, swirling, chaotic, while the fact of her fall remains, stubborn and unchanging: December 22. Three days before Christmas. Three days before her birthday. (Yes, her birthday was Christmas Day). The day before my brother was driving home for a visit.

And what about the random chance of it all? What if I’d called her the morning of her fall? What if I’d called her right before she’d walked upstairs to look for whatever she’d gone upstairs to get? My dad said they’d been getting ready to go to an eye doctor appointment, but that the appointment had been rescheduled from an earlier date. What if that appointment had never been rescheduled? What if, what if, what if?

I sometimes believe that my mother is going to text me, and as long as I am good and do not mention this whole “falling down the stairs-catastrophic brain bleed” ordeal everything will revert to normal. She will ask me how my day was, and I will say I had a bit of a headache, and we will move on from there. It will be like an alternate universe sort of arrangement, and I won’t complain, which is the price of admission.

This too, is bargaining. I’ll do my part universe. I won’t question. I won’t complain. You do your part. Bring her back.

I felt badly about these kinds of wild ideas until I read Didion’s book, where she describes exactly these sorts of strange, “magical” thoughts, refusing to give away her beloved dead husband John Dunne’s shoes because he may need them “when he comes back.”

Sometimes I speak aloud to my mom. A friend, who is Iraqi, assured me that “in some cultures it would be weird not to do that.” I appreciate that the more I learn about grieving, the more I receive the message that there’s simply no right, wrong, or too-weird way to do it.

I will say that I seem to have moved beyond my initial impulse to constantly talk about “bringing mom back,” which I know discomfited my brother after about the 7th time I mentioned it. But I couldn’t help myself. It’s simply how I felt and it kept slipping past my tongue. “Does anyone have any ideas about bringing her back?”

Something about being so close to her in time made me feel like it wasn’t impossible to undo her fall, her accident, to somehow reverse what happened. As more time goes by, this feeling fades, though not entirely as of yet.

Maybe I’ve watched too many movies where characters slide seamlessly into alternate universes, travel through time back to critical moments, undo something that mustn’t have happened, fly around the world backwards until something terrible never was.

A few weeks before she died, my mom texted me about my then-newest article on the Gauntlet, Uneasy Peace, marking 2 years of living with Long COVID, and over a year of being totally homebound. It is the last article of mine mom ever read.

She wrote “well, your latest article is heartbreaking and beautiful and wise”. I wrote back, “thank you mom!”

She responded, “A friend thanked me today for recommending the book All the Beauty in the World to her. She had finally read it after three years. It somehow seems similar to your article so I’m going to read it again.”

“Haven’t read it!” I said. “Maybe I should check it out?”

“For sure!” she advised. “It’s about a go-getter, whose life changes when his brother dies.”

Those are some of the last texts we ever exchanged.

I find it strange, but also comforting, that my mother recommended a book about grief to me just before she died. It is a little life-preserver I grab onto in the vast sea of motherlessness where I now find myself drifting.

All the Beauty in the World follows a man who, after the death of his brother, leaves his upwardly mobile job at The New Yorker and gets a position as a security guard at the Met. For ten years he walks the halls of the museum, living life at a slower pace, finding solace in the galleries.

It’s easy for me to see why she liked the book. She loved the Met. She loved New York. She loved art. I find myself reading the book not only as myself but also through her eyes- registering what she’d have enjoyed. It makes me feel close to her.

My mother was not religious, not spiritual. She loved opera, the theater, the symphony, she played piano and guitar, she sang, she painted, she quilted, she dragged me to every art museum. While I’d speed through, she’d lag behind, reading every tiny little placard and seemingly absorbing every tiny little brushstroke.

Like the author, art is where mom found her solace, and where it seems she’s encouraging me to find mine. In my own art, in her art, in all art; in all the beauty in the world. In expressions of grief, fellowship, joy and love that have survived centuries, and been appreciated across generations. In my work, my writing. In her paintings. In music and books that express what I cannot possibly.

In the words of others who somehow know already, better than I, what I am feeling.

The last painting she ever completed was of my beloved cat, Beatrice. She didn’t want to finish it because her symptoms were worsening, and she didn’t feel it was up to her usual standards. I’m so glad she did. Last April, she showed my brother and I the finished painting over Zoom, and last July, during her final visit to my apartment in DC, she brought me the painting in a frame.

I have another painting of hers. It’s a gorgeous painting of a greenhouse, which she completed while she was perfectly healthy. But the one I look at and cry every night is the painting of Beatrice. The painting she finished when she was sick, and struggling, and questioning whether it was really any good. The painting she gave me the last time she saw me, the last time she ever saw me.

I have a good friend who lost his father in a tragic accident about five years ago, who’s been a great support to me during this time. He sent me a poem which he found comforting during early mourning. The poem, called For Grief is by an Irish poet, John O’Donahue.

I loved the poem, and sent For Grief on to my dad and brother.

My dad replied, “That’s the same author who wrote the blessing your mother photographed in her last days and which I read at the end of the service!”

Sorry- what??

I asked him to clarify- why had mom photographed the O’Donahue blessing, which was sitting in her desk, in her last days?

My dad doesn’t know.

Here’s the blessing, which was one of the final photos in my mother’s phone, followed by one of the Christmas tree and a few of the dog.

Beannacht / Blessing

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.

And when your eyes
freeze behind
the grey window
and the ghost of loss
gets into you,
may a flock of colours,
indigo, red, green
and azure blue,
come to awaken in you
a meadow of delight.

When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.

And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

I am, like my mom, an agnostic. I don’t believe in any organized religion, and I’m not particularly spiritual, aside from thinking the laws of physics are pretty gnarly and pretty cool. But I’m going to choose to think of this as a last message from my mom, because it was on her mind, because she loved us, because she wasn’t able to say goodbye the way she’d have wanted to, because I know she wishes she could comfort us now.

You spent my whole life working these words of love around me, mom. You are the invisible cloak that minds my life. You will never be gone. You will never be gone.

This year, I was planning to do this same.

Instead, I want to take a minute to acknowledge this newsletter’s first and greatest supporter, the person who has encouraged and praised my writing since I was 6 years old, and who has masked and protected me from COVID reinfections without protest: my mom.

Her birthday is Christmas Day, and this Christmas she turned 73.

While I was growing up, she always insisted that we carefully identify which presents were “Christmas” presents and which were “birthday” presents- ensuring that no one used the date as an excuse to skimp out.

Unfortunately, three days before Christmas (and her birthday), my mom had a bad fall on the stairs in our family home. She had previously been diagnosed with Parkinson’s dementia, which likely led to her fall.

Since then, she has been in the ICU. She has bleeding in the brain which has been ongoing for a week. We are unsure whether she will recover, but desperately hoping that she will.

I have been unable to travel to my mom’s bedside since I’m homebound and largely bedbound with Long COVID in DC, and my parents live in Pittsburgh. I cannot drive anymore, nor am I well enough to fly.

Although I am far away, via Facetime I can see up close that our medical system is overburdened. A massive flu wave is pouring into ERs and ICUs nationally. I’m frustrated that there is not enough care to go around; it’s even more frustrating knowing we don’t have to live this way, with such massive waves of preventable airborne disease.

I asked my brother to put a sign on her door requesting that doctors and nurses mask when they enter her room. From what I can tell via the background of video chats, they do seem to honor this request- sometimes. And sometimes not. When they do, the masks are, of course, surgicals. There is only so much I can do to protect my mom from a medical system that does not understand airborne infection control.

I wish my mom were here so I could complain to her about it. I wish I could get annoyed with her one more time for loving doctors and doctor propaganda a little bit too much, like her obsession with ER and now The Pitt. I wish she could read this article and text me something sweet and supportive after, like she always does.

I will return with a real wrap-up sometime in the New Year, when I’m in less of a crisis situation. In the meantime, I so appreciate your continued support, and I do hope your holiday season has been better than mine.

Hoping for a better and healthier 2026 for us all,

Julia

No miraculous recoveries for me. Nor the slow, day-by-day improvement either. If anything, I seem to have gotten worse with time; November was a particularly bad month for me. My step count was egregiously low, hovering around 320 per day after a better September and October had me between 500-600 steps daily.

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On hearing the show’s stated premise, I was even more intrigued: “The most miserable person on Earth must save the world from happiness.”

In my daily life as a Long COVID patient, disabled by an infection in late 2023, it sounded like a tagline I might write about my own efforts over the last several years.

The happiness in question, of course, being “back to normal” - a state of affairs wherein all humans are repeatedly infected with a dangerous virus while being told it’s safe to catch, slowly or rapidly losing their health over time at varying rates. I.e., a false happiness.

The happiness in Pluribus, too, is a false one. And it, too, is spread by a virus of sorts.

I don’t believe Vince Gilligan set out to write Pluribus as a COVID analogy, but unmissable references to the pandemic abound as he sets up his “joining event.”

[SPOILERS AHEAD]

After astronomers detect a repeating, non-randomized sequence beaming at Earth from hundreds of light-years away, they set about decrypting it and soon realize the quaternary signal codes for the four components of DNA.

Months later, in a government lab, two scientists are shown experimenting on lab rats when one breaks PPE protocol. “I can’t feel anything in these gloves,” she complains, stripping off an outer-layer, heftier glove and revealing a thin rubber glove beneath. (I like the shades of anti-condom and anti-mask language in this throw-away line; there are, of course, other ways to go about doing what she needs to do without shedding PPE; protocols exist for a reason.)

Just then, the thought-to-be-dead mouse she’s handling bites her; it’s both an animal-to-human transmission event, and a lab leak.

She collapses but appears to be regaining consciousness as her lab partner carries her from the room. When we next see the lab partner, he’s approaching a security guard- and kissing him on the mouth. Mouth to mouth transmission continues through several scenes. At one point, Patient Zero opens a box of donuts and carefully begins licking them all, top to bottom, and replacing them.

As each worker is kissed, licked, and infected, they gather and familiar swabs appear. They begin, in creepy coordination, using the type of swabs we’re all so familiar with from COVID testing, to swab their cheeks, drawing little smiley faces into now infected specimen dishes. The dishes are then packed away, presumably to be shipped off for their mass infection project.

Let’s take a moment here. Whether or not Vince Gilligan meant to evoke the pandemic with this show, this is a show carrying a lot of psychic COVID baggage. The show begins with misused PPE, animal transmission/lab leak (pick your theory!), and the inversion of early pandemic measures.

Rather than social distancing, these characters immediately begin kissing on the mouth. To me- and I’d guess, many other COVID cautious individuals, the invaded personal space and licked donuts evoke people’s continued insistence that they have the right not to isolate and mask while infected with COVID.

What’s mine is yours, what’s yours is mine.

Rather than swab to prevent the spread of disease, they swab to further it. And while to many this may feel like a far-fetched, sci-fi premise, for those of us living with Long COVID, it does in fact feel that most people today are actively promoting the spread of COVID rather than engaging with our ongoing efforts to halt and reduce the virus’ spread.

For example, we’ve known for years that cleaning the indoor air by introducing higher ventilation standards and HEPA filtration standards would drastically reduce airborne illness. There’s a new technology called Far UVC that inactivates viral pathogens in the air. Combining these two could be a game changer- drastically reducing how much we all get sick. Yet no matter how much we bring up this idea- and no matter how often and how seriously their children get sick- people seem to prefer getting sick than breaking from The Borg.

And The Borg, to be clear, is approximately where the show goes next.

This “virus” from space functions to join all humans together into one superbeing- a hive mind. Well, almost all. Carol, our hero, does not get absorbed into what Pluribus dubs “The Joining”. Neither do 12 others. “In Albuquerque?” asks Carol, hopefully. “In the world,” responds Everyone.

During the “joining event” during which the vast majority of the world population uploads into one hive mind, Carol’s partner is one over 800 million people who don’t survive the process. I found this artistic choice to be both interesting and important.

First, “The Joining” itself is a mass death event. To get to the other side- the “new normal” that is so wonderful, 800+ million people must die, but this is neither commented on nor mourned by the survivors. If and when it is broached by Carol, the fact is met with discomfort- not because of the death, but because of the topic of death. “Ya gotta break a few eggs!” she shouts sarcastically to a sullenly quiet room.

Secondly, there is the narrative decision to take Carol’s partner off the board, and how this affects her character and the character’s willingness to be hostile to “the new normal”. As a COVID safe person myself who’s been active in this community for some time, a partner who is not themselves COVID safe is an incredibly difficult dynamic to navigate and ultimately leads usually to either a break-up or the COVID-safe person pushing their boundaries in order to join the “back to normal” world.

We see this play out when Carol insists on meeting the handful of other English-speaking people who were not able to “join” with the hive mind. Unlike Carol, all of them bring family members, and all of these family members have “joined.” One woman who is particularly hostile to Carol, Laxmi, has a young son.

While Carol immediately wants to discuss how to bring down the hive mind, the other unjoined individuals disagree with her. They want to join their family members.

This felt realistic to me as a COVID-safe individual without children or a COVID-unsafe partner. In particular, parents of young children seem to avoid information about COVID-19, and even people who previously sought out such information may avoid it once having children. It’s more pleasant to be part of a group that says COVID is not dangerous - and psychologically more soothing- than it is to look more closely when people you love are on the line.

Especially when those people you love may be out of your control. If you can’t control what is going on at your child’s school- if you can’t control what your partner does outside of your home- if you can’t control what your parents choose to do- isn’t it better to join the “back to normal” party and have some fun, than to rage against the machine? To be the world’s most miserable person trying to save the world from happiness?

This dynamic is well represented in Laxmi and her son. As Carol- with nothing left to lose- begs her to understand that her son is not really her son anymore, but is also an ex-boyfriend, and a pilot, and a trained gynecologist- Laxmi grows more and more hostile, insisting that she knows her own son. At dinner, Carol begins asking him technical questions about gynecology, which he immediately answers, much to Laxmi’s horror and offense.

Unsurprisingly to anyone in the COVID-safe community however, she is not angry with the Hive Mind for infecting her son; she is angry with Carol for exposing how the virus has affected him.

It’s unclear how much the Hive Mind itself can question or break free from the virus. We know that when Carol loses her temper, the Hive Mind goes into some sort of shutdown mode, seizing up and causing worldwide chaos. People behind the wheels of cars, flying airplanes, whatever they may be doing, get into accidents; it’s mentioned that the first time Carol yells at the Hive Mind, 11 million people die.

“Shutdown Mode” feels like a pretty apt comparison for those of us attempting to get information about our situation living with Long COVID to the wider world. We have a smaller, more aware community that argues with us about the best course of action- people like Laxmi. These people may understand that COVID exists and is infecting people, but feel that “it’s here to stay,” “we can’t fight it”, and “I’d rather be with my family”- giving themselves up to the virus in order to join with the majority due to fear of isolation.

And then we have the larger world, the “back to normal” world, much of which acknowledges no threat from COVID, some of which simply cannot and does not say the word COVID and seems to go into some sort of fugue state when it’s mentioned.

These are the people who repeatedly post things like “there is a respiratory virus going on and it’s not the flu and it’s not RSV and it’s a mystery virus and I have no idea what it could be”. Nurses who don’t mask in a NICU. Leftists throwing superspreader events during COVID waves and ignoring every disabled person asking them about protocols. People who cannot seem to fathom any middle ground between “2020 lockdown” and “doing literally nothing at all ever to prevent COVID spread”.

People online claiming they’ve “never had the virus” when their own post history shows that they’ve had it several times. People mocking those who mask when they previously begged people to mask for the safety of family members. People asserting they’ve had “no lasting damage” from COVID while listing new onset medical issues they’re suffering from since their infections (I can’t, of course, know for certain which medical issues are arising from which infections, nor do I claim to; but by that same token, when a certain medical issue is a known sequelae of COVID, it can’t be ruled out by the person in question as a post-COVID medical issue either).

I’ve often spoken about the experience of Long COVID feeling like living inside a horror movie. Because it’s not merely that we’re so sick with this new disease- a disease our doctors don’t understand, often knowing less about it than we do, staring blankly at us as we bring up new studies and clinical trials. It’s not merely that we’re so sick and we don’t know for sure what is going wrong inside us- a freaky, body horror sort of feeling.

It is not just the illness. It is the bizarre social response to COVID that has grown up around us that isolates and alienates us, creating a constant sense of pressure, anxiety and tension. People do not believe in our illness, and not only do they not care to help us avoid reinfection, they actively work to ensure that reinfection risk is as high as it can possibly be.

When we ask people who nominally believe in listening to marginalized groups to do bare minimum things to reduce infection risk, they, along with the rest of the Hive Mind, resort to insults and mockery. There is no left or right anymore; it’s dizzying. There’s just: The Blob. A massive group of Most Everyone on Earth who Does Not Care that COVID disabled us and we must avoid reinfection.

A massive Hive Mind who won’t stop kicking us while we’re down, recoils at the thought of reducing spread of the virus, and shrieks if try to explain that yes, we really got disabled by COVID and we really exist. “Leftists” who agree with fascists that it’s unreasonable to ask people to mask in a pharmacy or a grocery store to reduce the spread of a virus that disables people.

Why? I’ve never encountered something so strange, so bizarre.

Each day I feel like I’m waiting for some fever to break, but it never does. While I lost my ability to walk down the street as a 38-year-old, no one would acknowledge anything was wrong, nor acknowledge why I might want to avoid another infection. “We’re back to normal,” says the Blob, “this is normal.”

I am in a support group with dozens of other Long COVID patients where we discuss treatments, doctors, experiences, medications. One woman recently shared that she can no longer transfer from her wheelchair to make it to the bathroom independently. I felt so deeply terrified. Online, the Hive Mind mocks us.

The quietest channel in my Long COVID support group is called “Improvements/Recovery”. No one ever really posts there.

The Hive Mind shares one overwhelming belief, downstream from which all other behaviors flow: COVID is harmless. If that foundational belief shatters- the central tentpole of back to normal which has been supporting a fantasy world since 2021-2022- everything else must be rebuilt from the ground up. It is, as some have put it, a “load bearing delusion.”

But it’s not the first, only, or last load-bearing delusion our society runs on, and that’s why it doesn’t surprise me that Gilligan could write a show so closely matching my experience while not necessarily thinking of my life with Long COVID at all.

The idea that we continue burning fossil fuels the way we are- that we can continue expanding fossil fuel infrastructure- that’s a load bearing delusion. Nothing that anyone in government is doing matches anything near the scale of the crisis, and yet everyone walks around grinning and flying and partying like there’s no tomorrow. Hell, there might not be!

Capitalism, unchecked growth and consumption on a planet with finite resources, will lead to a middle-class American lifestyle for all before the world is scorched: load bearing delusion.

Everyone gets equal opportunity in the land of the free and the rich are rich because they worked harder than you and the homeless are homeless because they made bad choices: load bearing delusion.

Poor countries are poor because of bad governance, not because of decades of neocolonial pillage and foreign resource control by the first world: load bearing delusion.

I could go on.

And for me it’s interesting because, when I hear the words, “back to normal,”- back to normal in the context of COVID, of the lockdowns, of the pandemic, I also hear them in regard to every single one of those other load bearing delusions just listed.

“Back to normal” was never just about forcing you to accept that life was going to be worse from now on, and you better not think about fighting back. You better not demand paid sick leave for the many more days a year you’ll be out sick. You better not ask for legal protections since this new virus might end up disabling you at work. You better not ask for clean air or far UVC. You better not even ask for COVID tests that consistently work.

It was also about getting back to the office. About losing that little taste of free healthcare you got, and extra unemployment. About halting the George Floyd protests. Ever notice how often people talk about “woke dying” and “woke died back in 2020” or “you can’t tweet like it’s 2021 anymore”? Back to normal was about Back to NORMAL because people had a little too much time, a little too much money, a little too much attitude, and a little too much freedom.

They said back to normal, and they meant back to normal. All of it. Capitalism, racism, sexism, environmental destruction, and disease. Back to the office. Welcome back, back to the Hive Mind. Hustle for your check. Buy yourself something nice. Immigrants are the problem. Disabled people are the problem. Trans people are the problem. Woke is dead. Now take that fucking mask off your face.

At one point in Pluribus, Carol is speaking to the Hive Mind, in the body of an authority figure. He assures her they are going to “figure out what is wrong with you,” and when she asks what he means, he replies, “so you can join us.”

This is the ask of our state, of our governments. If you’re COVID conscious, they want to psychologize you, stigmatize you, threaten you, until you “go back to normal.” They want us to join back up with the Hive Mind that tells us to leave any weak and wounded person behind to suffer and die. That there is no society, and no community- only capitalism, only hedonism, only selfishness, only consumerism.

For those of us who are sick, homebound and bedbound, it’s admittedly, a bit harder. It is a bit harder to propagandize a person who’s been disabled by a virus that that virus isn’t dangerous. But should we ever recover, we too will be encouraged to rejoin the Hive Mind, encouraged to forget our fellow disabled comrades, encouraged to learn no lessons, practice no solidarity, fight no battles but those we fight for ourselves.

I think- I hope- that that won’t happen. In Carol I already see a hero for the COVID era, for the COVID aware, and for the Long COVID community.

So, thank you Vince Gilligan.

If you haven’t had the pleasure, allow me to introduce us: I’m Julia, and I’m part of the Long COVID community. We’re the most miserable people on Earth. And we’re here to save the world from happiness.

Yesterday, Jamelle Bouie, a popular progressive columnist for the New York Times mused on Bluesky that “a commitment to public health obligates you to get vaccinated and, when you are sick, do what you can to avoid spreading that to other people. The demand that one mask at all times in public spaces is, I think, unreasonable.”

Before I begin this column, I’ll note that I quite like Mr. Bouie’s writing. It’s why I follow him. This piece isn’t intended as a nasty takedown or anything of the sort; it’s intended to respond to a broader cultural sentiment raised here: masking is unreasonable, and what I find interesting about this particular framing.

A few things about the full statement: first, vaccines do not prevent infection well, and within weeks of receiving a booster shot, they do not prevent infection at all. Therefore, while they serve public health by potentially alleviating some burden on local hospitals, they don’t slow the spread of COVID at the community level. This Journal of Infection study looking at the VE (vaccine effectiveness) of the XBB booster vs infection found “VE declined rapidly and by approximately weeks 9–12 post vaccination, the VE point estimates were close to zero with considerable uncertainty in the estimates from day 60 onwards”.

Secondly, a note about “when you are sick.” I’ve already covered in this article about common COVID misconceptions that nearly half of COVID infections are asymptomatic. This meta-analysis found that the “overall estimate of the proportion of people who became infected with SARS-CoV-2 and remained asymptomatic throughout infection was 44.1%”. This means you do not know when you are sick.

Even people who do get symptoms are often contagious before symptoms emerge- usually a day or so prior to feeling that tickle in their throat or that unpleasant cough.

So, the only tool we have to prevent the spread of COVID- to avoid infecting and sickening other people- is consistent masking. Which is frustrating. You could even call it unreasonable.

You could call the situation unreasonable. You could call the situation our government has put us in unreasonable. You could direct your frustration over said unreasonable, untenable situation upward, where it belongs: at the government, not downward, at struggling sick people, who have no choice but to engage with COVID safety practices including masking.

We are not being unreasonable to expect freedom from infection with a pathogen that will certainly further disable us when we step into a public space. We are not being unreasonable when we expect solidarity from nominally progressive people. We are not being unreasonable when we demand an end to this charade that COVID is “normal” now and we’re all going to have to accept endless infections- so if that means disability, loss of career, loss of home, loss of life for you, you’re a write-off. That is not a progressive argument.

Let’s talk about the “reasonable” things being asked of Long COVID patients in our current reality.

According to the masses:

It is not reasonable to ask “regular” people to wear masks ever, but it is reasonable that anyone and everyone who cannot afford another COVID infection must wear masks always, everywhere forever, knowing one slip-up could mean permanent loss of function, loss of career, loss of house and home, loss of life.

It is not reasonable to ask for any COVID safety from the less vulnerable, but it is reasonable to ask for maximum COVID safety from the most vulnerable- and all the attendant hassle, time, energy and money that involves. (This, rather than demand an institutional, long-term mitigation and elimination plan from the government).

It is not reasonable to place any expectations on the broad back of the majority of society, but it is reasonable to pile everything the majority won’t do on the thin slice of disabled people who are carrying their own weight and attempting to carry everyone else’s as they drown.

Do abled people understand, when they say it’s “unrealistic” to expect people to mask everywhere, that they are describing the only guidance disabled people have received re: how to get through another day alive? Like, very literally the guidance from the CDC as to how to survive the ongoing pandemic - by constantly masking, by testing every person around us, by avoiding the COVID that those around us are doing absolutely nothing to stop spreading?

Sounds simple, until you consider trying to adopt some of those measures yourself, does it?

Do abled people understand that following this non-guidance is made a hundred times more difficult when, culturally, people chose to deny they can do anything to help halt the virus as we desperately tighten our masks on a crowded flight, pray over our tests when we get home, and isolate ourselves from former loved ones who won’t stop endangering our health?

Do they understand that when they envision attempting to avoid COVID in our current climate as unnecessarily burdensome, they are picturing a hectic, difficult game of frogger that people more vulnerable than them have no choice but to wake up and play each morning?

Why not recognize: wow! What a difficult reality we’re creating for anyone who’s been harmed by the virus. That could be me next, since I’m getting reinfected in these bi-annual waves. Instead of complaining that disabled people are asking me to participate in normalizing COVID mitigations, why don’t I acknowledge the absurdity and severity and difficulty of this situation? Why don’t I participate in changing the culture before it’s my turn to suffer as others ignore me?

Yes, it is difficult. It is burdensome. You could call it unreasonable! But when you shrug off the difficulty and burden of practicing COVID safety in the current climate, you are casting that burden onto the shoulders of those who are already carrying more than you are. Who can afford infections less than you can. Who in many cases have fewer resources than you do and almost certainly have fewer safe social outlets than you will.

Most abled people can adopt a somewhat curtailed version of COVID-safety that reduces risk a great degree without abandoning social life entirely, whereas many COVID safe people, including those suffering from severe Long COVID, have to practice much stricter precautions and may additionally be isolated by disability.

Abled, adapted COVID-safer living might include guidelines like masking in indoor public spaces, but unmasking for outdoor drinks, dining and gathering. Add in rapid testing for those unmasked gatherings, and the picture isn’t perfect- but it significantly reduces risk from the current norm of “doing nothing” and “pretending COVID doesn’t exist”. It begins to re-introduce concepts of masking and testing to the culture and destigmatizes them. It’s important to socialize the ideas that it is okay to mask and to test for COVID, instead of constantly framing them as “crazy” and weird.

And what of clean air? An objection I often hear is that masking is an “individual intervention” and we need institutional change. First, your individual intervention will halt chains of transmission. You personally will save lives, save humans from disability, and your decision to introduce masking and testing within your social circle helps move culture. Culture is critical- especially if you’re somebody influential like say, a New York Times journalist. But I’d also add that we will never get clean air without public pressure, and there will never be public pressure without public awareness that COVID is dangerous. As long as the public continues to treat COVID like a cold the government has no incentive to move on clean air. Step one is admitting you have a problem. The government hates masks so much these days because they are a visual challenge to its propagandist narrative: it is perfectly fine and healthy to repeatedly contract COVID-19. This is a lie.

I was disabled by this virus nearly two years ago. It is not “crazy” to avoid a virus that already disabled me. It would be extremely odd to accept the public propaganda that this virus is harmless over my body’s own truth: that it has been destroyed by this virus, despite having received my vaccines when I was infected in November 2023, despite having taken Paxlovid. I am not brainwash-able, I am no one’s partisan pawn. I am living proof. COVID can and will harm you.

For people with Long COVID like me, precautions are likely to be much stricter (although self-destructive behaviors are a thing, many people with Long COVID go to great lengths to avoid reinfections). Rapid tests are notoriously faulty, and many people who practice stricter COVID safety prefer to use higher accuracy- and more expensive- home tests- like Metrix and Pluslife. Unmasking outdoors can also be risky, although not as risky as indoors. But for those with Long COVID- for those who’ve already lost careers, homes, and the ability to walk down the street- even smaller risks may not feel worth gambling on.

Is it “reasonable” to have to mask all the time? To have to test people all the time? Of course, it is not reasonable, nor fair. That is why COVID-aware people continue to advocate for change. As mentioned above, we want clean air in the form of upgraded ventilation and filtration standards. We want and demand institutional-level mitigation and elimination. Because none of what we’re being asked to do is reasonable nor fair. It is constant stress and constant danger being placed at the feet of people newly disabled by a disease that even our doctors barely understand.

Long COVID is not reasonable. When I developed it, I was not asked whether I felt having migraines 25 days out of the month, or losing the ability to walk down the street, or having to use a chair in the shower at the age of 37, was reasonable. I wasn’t asked whether losing my ability to drink alcohol, smoke weed, drink caffeine, and eat gluten was reasonable either. I wasn’t asked whether week-long crashes in which I find myself too ill to sit up were reasonable. I wasn’t asked whether saving up energy, day after day, to find the strength to shampoo and condition my hair, would be reasonable.

I wasn’t asked whether needing a wheelchair to get to my new cardiologist’s office in the sprawling Georgetown MedStar building felt reasonable.

Sometimes in life we don’t get to decide whether reality is reasonable. Sometimes reality is just reality.

And the reality right now is that if you refuse to engage with the science- the science that shows that COVID is a virus that disables human beings, and that this virus is asymptomatic 44% of the time- then you are spreading a disabling virus, and you are harming people. If you believe it’s unreasonable that you have to wear a mask indoors to prevent the spread of that virus, turn your irritation and your ire toward the target that deserves it: your government.

Get angry. Join with us and punch upward, not downward. Get angry that you have to do these ridiculous, annoying, unreasonable things in year 6 of the pandemic, instead of being assured that a disabling virus won’t be spreading in every public space long after this problem should have been handled with upgraded indoor air quality and new technologies like Far UVC.

Get angry that your government decided it would be a-okay to allow this virus to circulate year-round with no end in sight.

Get angry that your government knows that Long COVID is now the leading chronic illness among children and it is doing nothing but continuing to force a long-disproven narrative down your throat: it’s fine. It’s safe for children to get COVID. Again. And again. And again. And again. And again. And again.

If you can’t imagine having to live like those with Long COVID are being forced to live indefinitely- but, no, let me correct myself. If you can’t imagine being forced to live with a fraction of the inconvenience, in a fraction of the fear that those with Long COVID are being forced to live indefinitely, trying to avoid an infection with the virus that already took their livelihoods or their ability to read or their ability to walk, think about what it means that our government is forcing that reality on people around you. Think about what it means that you’ve cast off the burden of that reality by denying it, magnifying the difficulty for others more vulnerable to COVID than you are.

Every person who doesn’t mask and test intensifies the difficulty of viral evasion for the remaining people who are working to avoid COVID. And for those of us who cannot afford to catch it- many of whom have already been grievously harmed by one or more infections- seeing people dismiss COVID safety as “too difficult” and “unreasonable” is a complete slap in the face.

It is just as difficult for us. It is more difficult. You are making it more difficult. And on top of that, we are so, so, so, so sick. You can’t even imagine how sick so many of us are.

Well, I don’t believe you can. It’s clear that you aren’t trying.

But Long COVID can happen to anyone. We keep saying it. Nobody listens. For convenience I continue to separate “those with Long COVID” who must avoid another infection from those without- who can afford some mystery number of infections. But it’s possible your next infection may disable you too. It is for yourself, as much as for others, that COVID is worth avoiding. The “unreasonable” of wearing a mask indoors does not compare to the “unreasonable” of Long COVID plus the “unreasonable” of scrambling to avoid another infection while the still-well-enough people sniff that doing anything to mitigate the virus is simply asking too much of them.

I am not sure why so many people do not believe that COVID is dangerous. The science is not particularly ambiguous. I do know many people do not believe we are sick. I know others don’t believe we are that sick. As I sit by my living room window on a high floor in my apartment building, I watch people running their errands. I long to be one of them again. I imagine being able to walk to the end of the block, to the coffee shop. I imagine ordering a coffee, even though I can’t drink coffee anymore because caffeine is a migraine trigger for me now.

I miss drinking it black. I miss drinking a tall soy vanilla chai latte, even though I wouldn’t order that now, because I used to get that at Starbucks, and I stopped going there, because of the boycott.

I imagine walking down to Dupont Circle and laying in the grass reading, like I did for so many years when I was well.

I imagine taking the clothes I’ve needed dry cleaned for years now to the dry cleaner (if it’s still there), and I imagine going to the post office myself instead of sending my friends. I like fall. I like fall in this neighborhood listening to Lana del Rey and sipping my coffee. I imagine going to the market and picking up seltzer waters and paper towels and not paying the 89 billion percent mark-up on delivery that I have to pay, because I’m homebound.

It wouldn’t feel unreasonable, I think, popping on my mask before I walk into the supermarket, and wave hello to the security guard who used to complement my shoes (if she’s still there). No, it wouldn’t feel unreasonable at all.

A sampling of comments:

“slight?”

“ok genuinely what is the cause of this why is it happening to everyone Help”

“what could this be? I have this and I’m 19-20”

“the brain fog’s so bad, the lion can’t even bring himself to care about anything”

“Getting reeeeeeeeeeal sick of all these viral anything-but-covid posts”

Copycat posts followed, with others sharing tongue-in-cheek lists of symptoms they’re “not concerning” themselves with. A summary on X said that the meme “prompted users to share personal stories of Long COVID symptoms including chronic fatigue and heart palpitations. Long COVID impacts 10-35% of infected individuals worldwide, with 2025 studies in the New England Journal of Medicine and BMC Neurology confirming persistent cognitive deficits like memory and executive function.” X user latkedelrey shared the summary, stating “well i’m glad everyone’s thrown in the towel on the matter since we’re all doing so well”.

The fact that COVID infections damage our brains is not debatable. There are hundreds of studies to support that COVID affects the brain, leading to memory, attention, executive function, and mental health issues. Dr. Ziyad Al-Aly already put together a great compendium of information and research concerning what we know about COVID and the brain last year- although, of course, more has emerged since then.

His piece, COVID-19 Leaves Its Mark on the Brain, is subtitled, “Research shows that even mild COVID-19 can lead to the equivalent of seven years of brain aging”. The piece thoroughly reviews the cognitive risks of COVID; below is a selection from a longer list of studies in the piece:

• Large epidemiological analyses showed that people who had COVID-19 were at an increased risk of cognitive deficits, such as memory problems.

• Imaging studies done in people before and after their COVID-19 infections show shrinkage of brain volume and altered brain structure after infection.

• A study of people with mild to moderate COVID-19 showed significant prolonged inflammation of the brain and changes that are commensurate with seven years of brain aging.

• Laboratory experiments in human and mouse brain organoids designed to emulate changes in the human brain showed that SARS-CoV-2 infection triggers the fusion of brain cells. This effectively short-circuits brain electrical activity and compromises function.

• Studies show that even when the virus is mild and exclusively confined to the lungs, it can still provoke inflammation in the brain and impair brain cells’ ability to regenerate.

• COVID-19 can also disrupt the blood brain barrier, the shield that protects the nervous system – which is the control and command center of our bodies – making it “leaky.”

Al-Aly goes on to cite this large NEJM study, which found that people infected with COVID-19- even those who had mild infections - “had significant deficits in memory and executive task performance.”

It would be wasteful for me to rewrite Dr. Al-Aly’s entire article. Please do read it. The evidence has been building for years and has been consistent; COVID causes brain damage. Despite the clear evidence, we’ve continued to infect the population, not once, but repeatedly, with no plan to end the onslaught of reinfections.

I think of COVID as a double threat. Yes, it is a dangerous virus because it is a deadly and disabling virus. Yes, it is dangerous because it attacks the brain, heart, organs and immune system. It can kill you if you contract it; it can also disable you long-term. It can cause you to drop dead of a heart attack or stroke months later, to develop an autoimmune disease or diabetes over the following year, or reactivate your latent EBV or HPV or chickenpox, giving you shingles.

But the other threat of COVID, particularly at the population level, is its ability to reinfect.

Because if COVID were a one and done virus- a virus that bestowed lifelong immunity, like measles or polio (generally) do, the cruel logic of “let it rip” and “back to normal” would ultimately work for the “survivors”. For those who didn’t die, for those who didn’t develop Long COVID from their one and only infection, for those who didn’t suffer brain damage or too much bodily damage on their first shot out of the gate, then that would’ve been it. We really could’ve gone back to normal. For those who’d been harmed, well life sucks. Losers lose, winners win. And this is the attitude that the people who consider themselves “unharmed” by COVID have very publicly and boisterously put on as they took their masks off these last several years.

But COVID isn’t a one-and-done virus. And it doesn’t reinfect at a rate that is similar to other viruses of its severity. It’s more severe than the flu, yet the average person only contracts flu once or twice a decade. People are contracting COVID every year or so (and if you think you aren’t, bear in mind that 40+% of COVID infections are asymptomatic)- some people twice a year. People are spinning that roulette wheel- or rather, the Russian roulette wheel- often. Like, really often. Like, way, way, way too often.

The danger of COVID is its inherent danger, yes, but it’s also its relentlessness. It’s that when you get away with your 5th infection it’s coming right back for you a 6th time. A 6th time in year 6? And you’re a 6-year-old child? Is it really such a mystery that teachers are complaining that “COVID babies” can’t say their names or tie their shoes coming into kindergarten? We’ve been serially infecting children with a virus that damages their brains. We know it does this. And we just…. keep doing it?

What’s odd about the political climate surrounding forever COVID is that I really don’t see what the counterargument is against the idea that we should stop infecting children with a brain damaging virus. Reactions online seem to be simple disbelief that COVID damages brains- but this is anti-science. The science is clear. However, today we still have a hegemonic refusal to acknowledge COVID as a threat- from the far-right to the far-left, it is a largely united front to treat COVID as the cold it is so clearly not.

What interests me about the “the lion does not concern himself” meme is the cracks it puts in the central fiction of the lies being told about Long COVID since 2022. Since that time, we’ve had two main narratives about Long COVID. The first, usually spewed on the right but too often adopted by the left as well, is that Long COVID is not real. It’s made up, it’s something lazy people use to stay in bed and get out of work, and/or it’s hysteria and conversion disorder.

But the second, more often left-wing narrative, is the one which is really punctured here. This is the narrative the left uses because it allows them to be “sympathetic” to Long COVID patients while refusing to mask or take any sort of preventive action. This is the idea that Long COVID is real, it exists, but only a certain kind of person gets it, and it’s a small minority of people. There’s something special about them, it must be genetic or something, and it doesn’t really affect most people.

Even people with Long COVID themselves sometimes buy into this idea. I see it in our support groups. We’re the unlucky ones, everyone else is walking around getting it a billion times and they’re “completely fine”.

But I don’t trust anecdote, I trust science. And science says that with each infection, risk is cumulative. Risk to the heart is going up. Risk to the brain is going up. People may react to the virus is different ways, at different rates. But nobody can get a virus that is objectively bad for you, objectively harmful, that we know invades the brain, degrades the immune system, and attacks the blood vessels, dozens and dozens of times, and just “be fine”. That is not how human bodies work.

Just last week, a devastating new study from The Lancet found that risk of Long COVID in children didn’t go down after their second infection; instead, it more than doubled. And this was in the Omicron era, with no significant difference noted between vaccinated and unvaccinated kids. The threat of Long COVID does not disappear with more infections. It amplifies.

What I see with “the lion does not concern himself” meme is those gigantic masses of people who didn’t get immediately, devastatingly harmed by COVID questioning the symptoms that are slowly accumulating over time and infections. They are being harmed, more slowly, in more subtle ways. Disabled people, and people with Long COVID, have been calling ourselves canaries in the coal mine for a reason. We may have been harmed first and worst, but we are warning you that COVID is dangerous because our bodies are made of flesh and blood - hearts and brains- just like yours.

Often when people online claim that the studies about Long COVID “can’t be true,” their evidence is that we’d be seeing a catastrophic level of damage around us by now were their findings accurate- and I’d argue that you can’t see what you refuse to see.

If thousands of studies are telling you to look for a certain kind of harm and then millions of people start wondering why they are experiencing exactly that type of harm, is it so hard to connect those two dots?

Does anyone want to connect those two dots?

Is anyone going to concern themselves?

Recently, his HHS announced that the FDA was authorizing the fall COVID vaccines only for “high risk groups”. His announcement, posted to X (formerly twitter), claims that vaccines will be available to all patients who want them “after consulting with their doctors.”

What was once an easy trip to the pharmacy will now become a multi-step process for millions of Americans, discouraging vaccination for those who do want the shots. Access to medical care itself can be a challenge in the US, with around 25 million Americans estimated to be uninsured. Even the insured may have difficulty finding the time or money to visit a doctor.

In general, it is considered good public health practice to make public health tools as accessible as possible.

However, this is hardly the first pandemic mitigation tool to be made less accessible over time; it might more accurately be said to be the latest and last.

A successful and healthy response to COVID would have seen our public toolkit expand over the last five years. Most critically, we would’ve seen a comprehensive plan for upgrading indoor air quality in all public buildings. Such a plan would’ve minimally comprised new ventilation standards, new air filtration standards, indoor CO2 monitoring, as well as public education in order to communicate the function and necessity of these measures. Hospitals, schools and congregate settings like nursing homes and prisons could have- should have- been prioritized.

We also could’ve begun to adopt Far UVC, one of the most promising new technologies that rapidly inactivates pathogens in the air. Distinct from Far UV, Far UVC emits radiation in a narrow, skin-safe range. We’ve had years to build and adapt our infrastructure, making clean indoor air a collective goal rather than an individual burden.

An article published in Photochemistry and Photobiology titled “Far-UVC Light at 222 nm is Showing Significant Potential to Safely and Efficiently Inactivate Airborne Pathogens in Occupied Indoor Locations” spoke to the efficacy of the technology back in November of 2022. Yet in the nearly three years since, no federal government official has ever broached the topic.

Indeed, no institutional anti-COVID measures were ever adopted. Contrast this with waterborne disease prevention, foodborne disease prevention, bloodborne disease prevention, and sexually transmitted disease prevention, all of which the state invests significant resources in mitigating and eliminating. Instead, the process of unwinding the COVID response at the institutional level- and bury the memory of COVID at the individual level- was begun.

This process was incremental, but thorough.

“We have the tools,” was the famous refrain of the Biden White House when speaking of COVID. Yet what became of them? Let’s take a look.

Mask mandates, of course, were unwound, and beyond that, masks were stigmatized by those in power. Leaders took their own masks off, publicly mocked them, and Biden, an elderly man with a host of pre-existing conditions, even failed to mask while actively infected with COVID. Privatization also moved masks, vaccines, and tests out of reach for many, as COVID centers were closed across the country. Masking, testing, and vaccination all declined precipitously - even before RFK Jr. got his paws on policy. Only 23% of American adults got a COVID booster last season.

As the technology behind home testing improved, the home tests offered by our government never did. They continued to offer RAT tests, which have a notoriously high false negative rate. In 2022, CIDRAP published a piece titled “High false-negative rate limits value of rapid COVID tests for kids,” which cited data showing sensitivity of RATs as 64.2% in symptomatic children and 56.2% in asymptomatic children. The piece went on to observe, “For reference, WHO and FDA performance standards for rapid antigen tests specify a minimum sensitivity of 80%”.

Meanwhile, brands like Lucira and Metrix raced ahead, producing home tests with PCR-level accuracy. The government never distributed these or any accurate home tests, likely due to cost. Today, Altruan, a German company, offers a small, costly little testing device (several hundred dollars) which, once purchased, accepts $5 tests that can test up to four individuals simultaneously with PCR-level accuracy. The US government not only hasn’t looked into offering home devices like these- the FDA under Trump also banned the importation of the cheap and accurate Altruan tests into the country.

I don’t know if I have to point out that it is of limited usefulness to distribute tests that fail to meet the FDA threshold for performance standards. Even worse, there was never any awareness campaign aimed at educating the public about the high false negative rates of these tests. In a certain light, the distribution of a small number of tests that do not meet minimum performance standards may look more like a PR move than a legitimate effort to limit viral spread.

For all the outrage surrounding RFK’s announcement, it’s not even the first move to limit vaccine access we’ve seen. In May 2023, President Biden the pandemic emergency declaration came to an end; this declaration was what provided for, among many other measures, free vaccines for all. The Bridge Access Program was intended to ensure that vaccines remained available for the uninsured and underinsured, but this too ended by August 2024. In a country with tens of millions of uninsured people, out-of-pocket price for a COVID shot can cost $200 or more.

It is never good public health policy to take a free disease mitigation tool and begin charging money for it. This is a bad idea whether that tool is a condom, a vaccine, a mask, or a test for any illness. The decision to do so can only ever discourage disease mitigation, contribute to disease spread, and- if your issue is spending- ultimately cost the economy money.

By the same token, rather than encouraging sick people to stay home, the CDC bowed to industry pressure, continually shortening the COVID isolation period until it became essentially nothing at all. From 14, to 10, to 5 days, down to “24 hours if your case is mild”, which was broadly interpreted to mean “24 hours” or “nothing”, workers were thrown to the wolves for the sake of employers.

Thinking rationally about this decision exposes the irrationality at the heart of every “let it rip” policy; force a sick worker into an office, school, or restaurant, and what follows? More sick workers, more sick days, more chronic illness, more disability; a predicted outcome which is borne out by data.

As COVID centers closed, vaccines were privatized, masks were stigmatized, and even the measly free four rapid tests per household per holiday season were shut down, individuals became increasingly responsible for their own safety.

Many disabled and immunocompromised people were (and are) forced into increasingly difficult and untenable situations at work and at home, attempting to protect themselves from encroaching infection on all sides. Those who can afford to- and many who can’t- are forced to spend money on masks, tests, air purifiers, filters and more.

Vaccines are an important tool in the COVID mitigation toolbox. They ensure that if you are infected with COVID-19, your infection will not be as severe as it would otherwise be. They reduce your risk of Long COVID, and they reduce your risk of hospitalization and death.

It’s also critical to get boosted each year, because the virus mutates rapidly, and protection from each booster fades with time. The peak of vaccine protection happens between the two-week to three-month mark, but does wane quickly. The vaccines are updated each year because new variants are constantly evolving, which is in large part a result of unmitigated spread of the virus.

The vaccine is a critical tool. It’s also an imperfect tool, and one that works to blunt the impact of a COVID infection once you are already infected. It is a tool that is most effective once an infection occurs; in other words, a tool that should be used when other tools in the COVID toolkit have failed.

Right now, our government has cast aside, stigmatized and privatized the insufficient prevention tools we once had- masks, tests, isolation periods, and paid sick leave- while entirely failing to expand our prevention tools into the systemic realm: ventilation, filtration, Far UVC, CO2 monitoring, and more expansive social policies like a new OSHA standard to protect workers from on-site infections.

We would have fewer variants and fewer surges- protecting the efficacy of the vaccines for longer- if we took mitigation of the virus more seriously, and relied on other tools in a robust toolkit, rather than abusing the vaccine as if it were the only tool available to fight COVID.

Over the past several years, the Biden administration narrowed the focus of the COVID response to a “vaccine only” strategy. Because our current vaccines are non-sterilizing, because protection fades rapidly, because the virus mutates quickly, we now know that this strategy does not meaningfully limit the spread of COVID. That’s why we are currently in a summer surge of the virus- with an estimated 1 in 55 Americans infected yet again, according to wastewater data.

Limiting the spread of a virus that is causing a great deal of illness, a great deal of social disruption, of sick days, of lost wages, of disability, of chronic disease, of post-acute complications- and yes, it still leads to deaths too- is the fundamental goal of public health.

We work to limit the spread of things like lice, bedbugs, pink eye, and chlamydia without having to have long, circular debates about how many people die of them each year. That’s because the primary purpose of public health is to reduce disease burden on the population level- because, even failing death, even failing disability, disease is unpleasant, an economic loss, and a quality-of-life issue.

RFK Jr. is attacking the final weapon our government offers us in the battle against COVID. Everything else we arm ourselves with- our masks, our air purifiers- is done out of our own pockets, and seemingly against our leaders’ express wishes and sometimes against their advice. But as we watch politicians turn on this final tool in the toolbox, can we not at last agree that our government has no plan to control COVID-19?

Our government has no plan to mitigate this wildly contagious virus.

Our government has no plan but infect you repeatedly, in biannual nationwide surges, with a highly disabling virus, as research continues to show that repeated infections carry myriad long-term risks.

Our government has no plan but to offload the costs of this virus - the costs of mitigation, the costs of infection, the costs of long-term damage to your health, the costs of lost wages- onto you.

We must face up to this. We must approach this problem anew, with renewed vigor. We must fight for our right to vaccines just as we fight for a comprehensive mitigation strategy, complete with clean air in all public buildings, CO2 monitoring, Far UVC, free masks and tests, public education, and universal paid sick leave.

We don’t have the tools. And we deserve more than one.

I went into a weeks-long crash, unable to do much of anything but lie in bed with my migraine cap on, reflecting on what I wish had gone differently over the last several years. Sometimes I think about the week I caught the virus, but more often I think about life before the pandemic entirely. A world with no virus, I imagine. Some random combination of events strings together differently, back there in the fall of 2019. It all works out the way it didn’t. SARS-COV-2 never infects a human, or never makes it to this side of the Pacific. What would life be like?

I recently wrote about how much time I spend wandering around in my memories, revisiting friends, concerts, parties, bars, even jobs and trips to the gym. It’s strange though; even old photos have an air of doom about them. Like there’s a ticking clock over my head. 18 months until everything changes, I think. I didn’t know.

My crashes are hard to describe to someone who hasn’t experienced them. Yes, the migraines are bad. During this crash just past, I had a migraine that lasted six days after drinking a Thai iced tea (my body hates caffeine now, thank you COVID). But the migraines aren’t really the “crash”. Some people have described a PEM crash as a “hangover” or “flu” feeling, which I’d say is broadly accurate. The nearest I can get is to say, you feel like you really, really need to lie down. You feel…. sick. It’s a full body, generalized, sick-ness, from head to toe. And when it gets bad, you won’t even be able to sit up, not for more than a second.

Today, I am sitting up. Over the last five days or so, I’ve finally been able to sit up after three weeks of lying down. I spent a few hours yesterday sitting up. I’ve spent a couple hours today sitting up. And I’m doing okay. Why? No one knows. Not me, not my doctors, not anybody’s doctors. Not even the researchers being paid to study Long COVID and (hopefully) working on figuring it out. It’s a lonely feeling.

It’s a middle-of-the-ocean-no-life-preserver sort of feeling. I’m out here beyond where science has mapped. Here be dragons.

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I’ve been mostly homebound since last June, and fully homebound since last September (other than doctor’s visits). I’ve spent nearly a year in my one-bedroom apartment, watching people walk past on the sidewalk far below, blithely running their errands, remembering how it was once so easy. Sometimes I pick a stranger and track them as they trudge up the street, following them until they’re out of sight. I don’t feel resentful, just curious. What are they doing? Where are they going? How does it feel to be in such a powerful body? Do they know how lucky they are?

My brother shares some wisdom he’s gained from watching people on the Mr. Beast isolation challenges. “It would be good if you had a little outdoor area,” he muses. “As soon as they give people a little outdoor area, they spend a lot of time out there.”

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Whatever it is, coronavirus has made the mighty kneel and brought the world to a halt like nothing else could. Our minds are still racing back and forth, longing for a return to “normality”, trying to stitch our future to our past and refusing to acknowledge the rupture. But the rupture exists. And in the midst of this terrible despair, it offers us a chance to rethink the doomsday machine we have built for ourselves. Nothing could be worse than a return to normality.

Historically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next.

We can choose to walk through it, dragging the carcasses of our prejudice and hatred, our avarice, our data banks and dead ideas, our dead rivers and smoky skies behind us. Or we can walk through lightly, with little luggage, ready to imagine another world. And ready to fight for it.

As ever, Arundhati observed the bigger picture incisively, correctly sensing in early April of 2020 that a “return to normal” would present a missed opportunity for needed, radical change.

Her language - “refusing to acknowledge the rupture”- seems almost mild compared to what ended up happening. Most people refuse to even speak the word COVID. When they get sick, they do not test for COVID. When they get COVID-like symptoms, they claim to have the flu in the middle of summer, or, even stranger, they post videos inquiring “is there something going around??” People who engage in COVID mitigation practices are mocked, harassed, and accused of being mentally ill.

Art avoids the pandemic, to the point that it’s odd- as if all TV shows, books and movies take place in an alternate universe where COVID never happened.

Memories of the part of the pandemic that people acknowledge (2020-2022ish) are retconned to fit right-wing narratives. Many people now seem to believe that more teachers and workers should’ve been socially murdered to accommodate Republican demands to reopen before vaccines. This has to do, most likely, with the political and social normalization of social murder over the past five years, to the point where no one blinks at telling a disabled person to stay home indefinitely or die when they express that COVID must be mitigated because COVID is deadly for them.

In other words, prejudices were dragged. Hatreds were dragged. And carcasses? Yes, we’ve got plenty of them, too.

Life for a few of us, though, has radically changed since 2020. And as difficult as that change has been, I believe it is a function of our attempt to travel through this portal Roy described as a small group, without as much community support as we need.

I’ll clarify something before I continue. In 2023, I developed Long COVID, and in 2024 my condition became severe. I am now homebound. However, the “portal” I feel I travelled through would be the one I choose to enter when I began masking again during Omicron wave one, in late 2021-early 2022. So I’m going to speak a bit about my experiences being COVID safe, in the COVID safe community, from both sides of the Long COVID divide.

But I’ll start before any of that. Way before.

After college, I spent several years working in international public health. I became disillusioned with the work, as I found that our USAID and Gates Foundation contracts were not addressing the heart of the issues afflicting my assigned regions in Sub-Saharan Africa. Giving out mosquito nets and TB medication was all well and good, but these people needed more money, I began to realize, and the US was part of a system that impoverished the Global South. Why was Bill Gates, unelected by anybody anywhere, setting health policy in countries all over the world? Just because he was rich? A major influence on my thinking at this time was none other than Arundhati Roy.

I picked up her book Capitalism: A Ghost Story on a grey, overcast day at a local lefty bookstore/coffee shop one afternoon. It was a slim little volume; I had just ducked in from the drizzling rain for an Americano, and saw it propped up by the cash register. I remembered liking her novel (at the time, her only one), The God of Small Things, in high school, so I bought it on a whim. But wow, that book. Soon after, I moved on to The End of Imagination, and then I hungrily consumed everything else she’d ever written. I learned more about neoliberalism, corporate power, displacement, indigenous land rights, NGOization, privatization, I could go on. I felt like she taught me something new on every page.

I began to think of myself as “a tiger on a leash”- her descriptor for young activists who are recruited into liberal think tank and NGO work, keeping them safely away from radical spaces and ideas.

But what to do with what I now knew? At first, I simply felt overwhelmed.

I began cutting out of work more, drinking more. I spent a lot of my 20s partying, getting lost in hedonism because the world felt hopeless, self-medicating before finally medicating-medicating. I left my office job for bartending, which I did, semi-happily, for years. Finally in 2015, I got excited about Bernie Sanders’ run for President and got an entry-level job as an organizer for his campaign out in Nevada. From there I began doing more political work. Was this my answer- was this how I could feel engaged, useful in the world?

For a while, it was. And then, it wasn’t.

I loved organizing. I loved the people I met and the work I did. But the change that could be effected within the system felt limited - even Bernie himself often speaks to the reality that organizing shouldn’t be something that occurs only around elections and election cycles. And then- COVID. In 2020, liberals and progressives made space for disabled people to continue to be part of organizing, to co-exist with the realities of a virus that we simply can’t be in a room with. By 2022, those options were disappearing. By 2024, they were a rare exception.

This trajectory broke my heart, repeatedly. I knew back in 2022 that if I ever caught COVID, I’d be likely to develop Long COVID due to my underlying conditions. In late 2023, I caught COVID, and by mid 2024, I became homebound with severe Long COVID. The message I received, loudly and clearly, from my former “home” in progressive politics was quite simply: That does not matter. My health does not matter. My life does not matter. I do not matter. Try continuing to advocate for a movement that believes these things. Try believing such a movement is radical.

However, in 2022 as I realized no, vaccines would not be preventing infection, that no, breakthrough infections were not rare, that yes, vaccinated people could go on to have serious outcomes including death and debility, and that yes, Long COVID was very real and very scary, there were people who did still care. These were people who advocated for mitigations, loudly and clearly, who masked in public spaces, who organized mask distributions, who shared mutual aid, and held mask-required events.

As most people allowed themselves to be swept, gently and surely, back into the waiting arms of self-centered individualism for the sake of consumerism and capitalism, a few brave people firmly refused to be gaslit by the state into accepting a “new normal” that was observably, objectively, objectionably worse than the normal we’d already been suffering under.

They quite simply said, “no, I’m not going to accept that you’re making things even worse for the most vulnerable. I’m going to do something.”

And they’ve been doing something! Every day since!

It seems we get so few opportunities to do things that can meaningfully help one another. Every day I have to scroll past so many mutual aid requests that I can’t give to, because I simply don’t have the money to contribute to them all. But when I leave home (unfortunately, very rarely now), I can always put on a mask. I can always guarantee that I’m not going to infect someone, disable, or kill them, be responsible for them losing their livelihood, home, partner, be responsible for them ending up like me, trapped indefinitely in their one-bedroom apartment.

That doesn’t mean I never find masking annoying, or that I mean to say that masking for a few hours here and there would be the equivalent of masking at a public-facing full-time job. Like most maskers, I advocate for comprehensive clean air upgrades that would ultimately drastically reduce the risk of catching airborne illnesses in public spaces, and reduce the burden on individuals. But I also feel sad that people who spend so much time reading leftist theory cannot spot an opportunity to directly care for others when it is staring them in the face, and instead continue to participate in harming others while said others beg them to stop.

But this article isn’t about them, it’s about those who have walked through the portal, and what life is like over here.

Well, I won’t sugarcoat it. Lonely. So many of our comrades chose not to come with us, that yes, it is lonely. The biggest downside of masking and practicing COVID safety is the social opprobrium we receive, born on the right wing, tolerated and then advanced across the political spectrum. This social rejection and stigma is no mystery, no accident; it is a meticulously constructed psychological project intended to shoo people back to the capitalist, individualist “normal” Roy referred to in her 2020 essay. Walking through that portal must come with a social cost, the public must be chastised away from preaching any doctrine of community above oneself. Only weirdos walk away from (gestures broadly) alllllll this.

It’s also scary. I’ve already been disabled by one COVID infection, and cannot afford another. Imagine being so harmed by an infection that everyone around you refers to as harmless that you can’t walk more than 500 steps a day. Imagine you have to plan your week around taking a shower (sitting down). Imagine that you know what getting worse looks like- and it’s your friends who can’t get out of bed anymore at all. And as you suffer through all of this, people continue to call the virus that did this to you a “cold”, refuse to test for it, refuse to wear masks, act like it’s their God-given right to spread it, and even act like you’ve slapped them if you suggest that it’s not.

But what else is it? Living on the other side of the portal? You’re now outside of “normal” entirely. You’ve been cut out of “society” which comes with many negatives- but maybe a few positives? Your friends are COVID safe people, many of them disabled. You cannot participate in social events where people ignore disability justice. You’ve had to build a parallel world, this new, tiny little world through the portal. Freeing. New. Stripped down. Real. Lacking artifice. Lacking distraction.

On the other side of the portal, we often bemoan learning how many people truly do not care about our health. But we also learned who truly does care, or met people who do. We have this knowledge now, knowledge we never would otherwise have had. Transactional people and relationships are long gone. The people around us are trustworthy, because they have to be.

If we didn’t know it before, we learned that socializing doesn’t actually have to revolve around spending money on restaurants, make-up, outfits, or any sort of conspicuous consumption. Those things are and can be nice treats, but they aren’t necessary to relationships, love and care. In fact, as I sit in my one-bedroom apartment with my handful of girlfriends these days- the only place I’m well enough to see them anymore- I often think of these lines from The Grinch:

And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'till his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas, perhaps, means a little bit more.

When I constantly see leftists bemoan the idea of COVID precautions because indoor dining, I think, what if community, perhaps, means a little bit more.

I do think there is just one group of people who’ve walked through the pandemic portal with little luggage. It is those of us in our N95 or KN95 masks and air purifiers, our up-to-the-minute Nature studies, our hand-drawn Zines and our mask-required poetry readings and our dance parties and our distro events. It is those of us who left behind so much else. It is those of us who were asked, how many lives would you trade for indoor dining and said, well, I guess zero. Those of us who were asked, how long will you care for your neighbor and said, I always will. Those of us who were told, you don’t have to love anyone, not anymore, and said, that’s what makes me a radical.

The pandemic has been a portal, for me, for many others. It still is. Come find us here.

Among the cruel cuts? A provision stating that Medicaid recipients must work, volunteer, or attend education or training for a minimum of 80 hours each month. Defenders of the bill point out that this work requirement contains exemptions for the elderly, pregnant, caregivers, and yes, the disabled. But disabled according to whose definition?

That’s right, disabled as defined by the very same government snatching back benefits in the first place. The exemptions in the bill are based on the strict SSI definition of disability, and, while the law will be administered at the state level, documentation will doubtless come in play. The bill does not allow for states to include additional exemptions of their own. Significant questions remain concerning enforcement, but the goal of the requirement is clear: reduce spending by booting people off Medicaid.

According to the State Health Access and Data Assistance Center (SHADAC), only 10.1% of Medicaid recipients qualified for Medicaid through a disability pathway in 2023, but 33.9% of recipients self-identify as disabled. There are many reasons for this discrepancy. SSI and SSDI are notoriously difficult and time-consuming to qualify for, with some people waiting years to receive benefits, and others never receiving them at all.

Wait times have soared in recent years, with initial decisions taking an average of 220 days - or 7.5 months. In 2022, only about 1/3 of initial disability applications were approved, with rejected applicants then having file an appeal within the next 60 days. From there, you’ll wait another 7 months for your reconsideration decision. If rejected again, you’ll be waiting an average of 15 months to get a hearing before an SSA law judge.

Overall, about two-thirds of disabled Medicaid enrollees do not receive SSI, meaning they haven’t gone through the often-lengthy process of documenting their disability with the state. And SSI enrollment is lowest among younger folks, as seen in this 2023 data from KFF:

Among 19-49 year olds, people in the prime of life, 70% of disabled people on Medicaid do not have SSI. This age group is ripe for targeting with work requirements, falling as they do within peak working years, yet failing to have the medical paperwork on file they may need for an exemption. It’s likely that documentation will be a hurdle for anyone who doesn’t currently have it. According to SHADAC:

during New Hampshire’s 2019 implementation of its Medicaid work requirement, the Granite Advantage Health Care Program, the state received only 1,951 exemption requests based on medical frailty—far fewer than expected given that more than 10,700 individuals had previously self-attested to that status. This gap highlights the significant administrative barriers that may prevent eligible individuals with self-reported disabilities from securing exemptions under Medicaid work requirements.

In other words, when means testing or onerous bureaucracy is introduced, the number of people accessing a public benefit plummets. This, critics are quick to point out, is more often than not the point of means testing and bureaucracy; to reduce the burden on the state. Far from weeding out “fraud” or “graft,” it simply weeds out the most vulnerable.

But beyond universal bureaucratic hurdles, patients suffering from illnesses that are less well-understood, particularly those without objective biomarkers and which appear invisible, will face additional challenges. Many types of Long COVID, an umbrella diagnosis that is both new and stigmatized, fall squarely in this category.

Reporting has tracked the difficulties Long COVID patients have had accessing SSI for years. In 2022, Betsy Ladyshetz, now co-founder of The Sick Times, wrote about the issue for KFF Health News, noting that, “July 2021 guidance recognized long covid under the Americans with Disabilities Act but didn’t extend to the Social Security Administration, which runs benefit programs.” A year later, in 2023, reporter Morgan Stephens of CNN again covered the story, but no progress had been made. “Nearly three years into the pandemic, long Covid still isn’t included on SSA’s listing of qualifying disabilities,” Morgan reported.

Charlie McCone, a 35-year-old in the Bay Area, first applied for SSDI in 2022 after a COVID reinfection left him bedbound and unable to work. Today, he is unable to walk around the block without suffering debilitating migraines and fatigue. He can work a maximum of about two hours on a good day. Despite legal assistance, he was immediately denied for SSDI during his initial application, and is now on his 3rd stage of appeal awaiting a court hearing. Of his experience with SSA, he says:

It has been the most demoralizing, undignified, and enraging experience imaginable. The process is already egregious for people with the most explicit and measurable disabilities, my attorney says she regularly gets denials for clients with stage 4 terminal cancer, and hence the process is nearly impossible for those with invisible disabilities harder to measure within the framework of conventional medicine and safety net, like Long COVID. The idea SSA can easily determine who is disabled and not is a catastrophic misunderstanding. People with severe ME/CFS and Long COVID are experiences some of the most disabling conditions known to the history of man. These are people unable to leave their bed or house, and unable sit at a desk or concentrate for longer than an hour a day (sometimes minutes) — and almost always are subjected to years or denial, appeal, just for the chance to live in abject poverty (avg SSDI payout is $1,538).

The difficulty Long COVID patients have had accessing SSI and SSDI was the subject of a letter written by the Senate HELP Committee to then-Social Security Administration (SSA) Commissioner Martin O’Malley in August 2024. Sent by Senator Tim Kaine and signed by fellow members Sens. Tammy Duckworth, Ed Markey, Angus King Jr., Bernie Sanders, Tina Smith, and Richard Blumenthal, the letter pertains to the barriers people with Long COVID are encountering as they try to access Social Security benefits.

This letter made several requests of SSA, including that SSA begin tracking and publishing data on applications relating to Long COVID, that SSA review the NASEM report and create a new Long COVID ruling with input from patient groups, and that SSA restore the “treating physician rule”

The “treating physician rule” was a rule that, prior to 2017, an applicant's primary care physician or main treating physician would be weighted more heavily over the opinions of physician(s) who met with the applicant briefly in the course of SSA proceedings. As for the other requests, they point to both a concerted effort to bury Long COVID (ongoing refusal to release data related to Long COVID applications and rejections at SSA) as well as an utter failure to modernize and accommodate the existence of Long COVID at all (urging SSA to review the NASEM report and introduce new guidance to evaluate Long COVID patients).

All of these issues are likely to remain relevant as Medicaid purges the “able bodied” who do not complete requisite work hours from its rolls. SSA is charged with determining who is disabled, yet, as a body, it is unfamiliar with the definition of Long COVID, has yet to standardize guidance concerning Long COVID, fails to prioritize the testimony of treating physicians for Long COVID patients, and fails to provide statistics about the rejection rate of Long COVID applicants.

Since 2020, the pandemic has been disabling working-age people at unprecedented rates. Some sufferers know they have Long COVID and identify themselves as such; others don’t, due to deliberately poor public health communication or to stigma. There are Long COVID patients who are too sick to work, who do not have any real treatment options, who also may not have language to describe their illness. Many of these people, importantly, may not have laboratory testing confirming their illness due to the nascent and ongoing nature of Long COVID research.

In order to receive SSI/SSDI, applicants must demonstrate to the Social Security Administration that they have a medical condition that is “expected to last at least one year”. Here again, Long COVID minimization and stigmatization may hinder patients as they attempt to access work requirement waivers. Reporting has repeatedly highlighted optimistic studies wherein patients recovered within months, and these reports could be used to argue that Long COVID patients can’t be certain that their illness will last beyond a year.

All this is to say that attaching work requirements to Medicaid will accomplish something, but that something won’t be increasing the labor pool. Work requirements won’t get people who are too disabled to work, working. They will save the state money by snatching healthcare away from very sick people who are suffering, but don’t have the documentation to prove it- in some cases, simply because the infrastructure to document their illness barely exists. Such requirements will prosecute people who’ve been disabled by a virus that is being categorically denied and disappeared by the state, as its victims are labeled lazy liars.

On the flip side of the states’ targeting of disabled populations is its targeting of immigrants. As violent raids across the country continue to snatch mothers, fathers, neighbors and friends from their communities, the economic impact of these amped up detentions and deportations have begun to be noted even by critics on the right. Speaking this week, Agriculture Secretary Brooke Rollins said of farm laborers:

There will be no amnesty. The mass deportations continue, but in a strategic way. And we move the workforce toward automation and 100% American participation, which with 34 million able-bodied on Medicaid we should be able to do fairly quickly.

It’s a stunning and stark example of the intersectional nature of oppressions. As the state arrests and deports one marginalized group- undocumented migrant workers - it now expects to call on another - poor, mostly disabled people on Medicaid- to step in and take over that labor, so the upper classes don’t experience any disruption to their expected services.

People with Long COVID, of course, are not the first nor only chronically ill and disabled people who will be affected by these cuts. There are plenty of conditions that have been viewed as “malingering” and cast as “hysteria” prior to 2020, including other post-viral illnesses which, due to lack of funding, continue to be difficult to diagnose and treat. But since the number of patients “living off of” the state continues to increase at an unprecedented rate, the hatred directed at these populations ramps up accordingly.

The US isn’t the only place we’re watching these ideas gain support. In the UK, harsh bills attempting to force disabled people into work have been pushed forward by, not the conservatives, but the Labour Party. In March, the UK government released its “Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper” aimed at cutting billions from its disability programs. Just as in the US, government officials claim that they are going to sort out who is “really” disabled and who is “faking”, who is “lazy”; therefore, the legislated push to force disabled people into work is righteous, not cruel.

To review: state fails to control virus. State negligently allows people to become infected. State claims no one can be hurt by this virus. When people subsequently report being hurt by virus, state calls them liars. When people try to collect benefits, state denies them, then begins cutting them. When people try to access healthcare, state tells them to get back to work and runs propaganda campaign to paint them as lazy and dishonest.

I’d be remiss if I didn’t mention that this framing- that people with Long COVID are lazy, that they are fakers, that they are crazy, and that they need to get back to work- has a clear place within the COVID normalization project and makes perfect sense when viewed as part of that larger political whole.

I’d be remiss, too, if I didn’t mention that this is why it is so very disturbing to see people on all parts of the political spectrum repeat this heavily politicized outlook about Long COVID, a disease which can afflict anyone after any infection. People with Long COVID are not liars, fakers, crazy, paranoid, or lazy. They were simply hurt by a circulating virus that can disable human beings, that has killed tens of millions over the last five years.

When you mock and stigmatize Long COVID patients for sharing their stories, advocating for COVID mitigations, and describing their symptoms, you are doing propaganda work for the state. You are advancing the state’s interests; in this case, throwing disabled people who are too ill to work off of Medicaid by fostering doubt about the legitimacy of their disease.

There is no scientific doubt about the existence or legitimacy of Long COVID, only political doubt. But it is this political doubt - and the lack of a political framework to acknowledge and support people with the disease- that will enable the government to deny patients benefits, subject them to impossible work requirements, and snatch away the health insurance they need to survive.

Yes, eight days ago I underwent a Stellate Ganglion Block procedure in yet another semi-experimental attempt to treat various Long COVID symptoms, including dysautonomia and migraines (both of which SGBs show some promise in alleviating). The nurse at the neurology and pain center asked me to pick a playlist, and I’d attempted to replicate the feeling of relaxing on a beach. And it had gone pretty well until needle met neck.

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Of course, it is no mystery why so many children are getting Long COVID. So many children are getting Long COVID because so many children are getting COVID. Over, and over, and over again.

So many children are getting Long COVID because COVID causes Long COVID, and children are not “immune” to COVID, they are not becoming healthier with each infection, and the adults around them are doing nothing to mitigate the virus.

Newsweek’s piece relates the shocking findings of a new RECOVER study: that up to 5.8 million American children now have Long COVID, making it the most common chronic illness affecting children. However, this fact is not treated with any urgency by Newsweek, nor is the current approach to COVID- do literally nothing- questioned as the proper one.

Instead, the article does some equivocating about whether Long COVID has actually surpassed asthma as the most common chronic illness affecting children before accepting that, at the very least, the two are neck-and-neck (a mere five years into COVID’s existence). The article goes on to call for more research and more vaccination- certainly two critical pieces of a functional COVID response.

But, as always, Newsweek ignores prevention as a lost cause, never even touching on the reality that airborne viruses spread more easily in poorly ventilated classrooms, or that high-quality HEPA filtration could help bring down transmission, or that socially normalizing measures like masking and testing would mitigate the onslaught of infections in children. We’ve known for years that new Far-UVC lamps can reduce the level of indoor microbes by 98% in under 5 minutes- yet the public hasn’t even heard of the technology, much less have we discussed introducing it into classrooms.

The RECOVER study lays out a now well-established conceptual model for understanding categories of Long COVID (or PASC) presentations. These categories include exacerbation of underlying conditions (e.g., “persistent cough in children with asthma and chronic lung disease, diabetic ketoacidosis in children with diabetes, exacerbation of mental health and neurodevelopmental conditions”), persistent symptoms of acute infections, and de novo conditions (“including new-onset autoimmune conditions, such as the development of type 1 diabetes”). As the study notes, “These conditions may follow mild or even asymptomatic infection.”

Additionally, children are at risk for MIS-C:

One example of a serious complication after infection that was identified early in the pandemic is multisystem inflammatory syndrome in children (MIS-C), which results from a hyperinflammatory response to SARS-CoV-2, observed 2 to 6 weeks after initial infection.

Below, Figure 2 from the RECOVER study, showing organ system involvement of PASC in children.

Of course, the RECOVER study is hardly alone in affirming that children are being harmed by endless COVID infections. During the earliest days of the pandemic, political leaders pushed convenient narratives about children being unlikely or even unable to catch or transmit COVID without evidence. Ultimately, schools were reopened without any upgraded air quality measures even before children were vaccinated, while the science showed that children, just like adults, were at risk for myriad post-viral health problems.

As time goes on and studies accrue, those health effects only continue to come into focus.

A recent study focused on characterizing Long COVID in young children, finding that 14% of infants-toddlers and 15% of preschool aged children in the study met the criteria for probable Long COVID. Symptoms to watch out for included poor appetite, trouble sleeping, wet cough, dry cough, stuffy nose and daytime tiredness/low energy.

But these classic Long COVID symptoms are not the only kinds of health problems seen in children.

Already in late 2020, researchers at the Children’s Hospital of Pennsylvania had “found elevated levels of a biomarker related to blood vessel damage in children with SARS-CoV-2 infection, even if the children had minimal or no symptoms of COVID-19.”

A fall 2024 study found that kids with Long COVID have impaired neutrophil function, which correlates to the severity of their condition. Neutrophils are a type of white blood cell that help defend the body from infections.

In April, Nature published a look at Post-acute cardiovascular sequalae of COVID in children and adolescents, accomplished using electronic health records. The study found that:

children and adolescents with prior SARS-CoV-2 infection are at a statistically significant increased risk of various cardiovascular outcomes, including hypertension, ventricular arrhythmias, myocarditis, heart failure, cardiomyopathy, cardiac arrest, thromboembolism, chest pain, and palpitations, compared to uninfected controls.

A study in Taiwan found “Increased post-COVID-19 behavioral, emotional, and social problems”, with the authors reporting:

Compared with the control group, the COVID group in the post-COVID condition had more severe symptoms of inattention, hyperactivity-impulsivity, opposition, a wide range of emotional and behavioral problems, and poor school functions, school attitude, social interaction, school behavioral problems, and interaction problems with their parents. Compared with the pre-COVID condition, the COVID group had greater severity of inattention, somatic complaints, thought problems, internalizing problems, poor school functions, and interaction problems with their parents in the post-COVID condition.

If many of these health effects sound familiar - vascular damage, heart damage, immune system damage, cognitive damage- that’s because children are, after all, human beings. It should have been intuitive that a virus killing adults would not be perfectly safe for children to catch, but economic and political interests were behind the wheel- not kids’ wellbeing- as pundits and influencers raced to proclaim that children would not and could not be hurt by infections.

There’s plenty we still don’t know about what cumulative infections will mean as kids rack up another 5, 10, 15, 20 infections- or about what post-COVID looks like in 5, 10, 15, 20 years. A new study found that, “despite milder clinical respiratory symptoms, children’s metabolic disturbances mirrored those seen in severe adult COVID-19 patients, indicating a shared inflammatory response to SARS-CoV-2,” which the authors note indicates a need for further investigation. But in the meantime, before the implications of altering kids’ metabolic profiles are fully understood, how many more variants will we allow to rip through schools?

Since 2019, school attendance has taken a massive hit and never recovered to pre-pandemic levels, for obvious reasons; kids are sicker. Yet media pundits and politicians adopt an attitude of utter cluelessness as sick days remain high around the world, pushing evidence-free narratives about parents refusing to take schooling seriously, and instituting ever-harsher punishments for absent students. The UK government even ran a misguided campaign to push parents to send their children to school sick, a move that can only result in more sick children and more absences.

A recent article in the Daily Mail conflated “kids staying home sick” with “skipping school” with this bewildering opening sentence:

Parents are being told to send their children to school with coughs and colds after a poll found one in four adults think it is okay for youngsters to skip school.

The statement is profoundly revelatory; it seems to mix up the propagandist explanation for school absences with reality, ultimately presuming them to be one and the same. Parents are scolded for not sending their kids into class with “coughs and colds” because it’s not okay to “skip school”- at a time when the press is trying to sell the narrative that kids are simply choosing to skip school, not sick.

This “new normal” of absence, illness and chronic disease is a far cry from the placating vision we were sold by minimizers back in 2020, 2021 and 2022. Last week, RFK Jr. staged a coup against the Advisory Committee on Immunization Practices (ACIP), firing all 17 members. Among his replacement nominees? Martin Kulldorff, co-author of the Great Barrington Declaration who claimed, on May 15, 2022, “75% of American children have already had covid, providing strong natural immunity against future infection.”

Kulldorff, now handpicked by MAHA to help dismantle access to vaccines in the US, was mainstreamed by news outlets across the political spectrum. In fact, he was platformed in September 2020 by none other than… Jacobin. “Children and young adults have minimal risk, and there is no scientific or public health rationale to close day care centers, schools, or colleges…school closures are especially harmful for working-class children,” he stated in the outlet.

His framing conveniently neglected to mention that teachers, and elderly and immunocompromised family members were also being protected by keeping children in remote schooling prior to vaccines. He also failed to mention that it was teachers’ unions demanding school closures as a condition of safe employment, that working-class people are less likely to have access to quality medical care should they become infected, and that it was wealthier parents- not poor parents- who were most willing to send their kids to school in person. But even his central claim - that children have minimal risk from COVID- wasn’t true.

Both the idea that COVID is harmless to kids and the idea that kids had some sort of “strong natural immunity” after their first infection should be debunked by now. It’s obvious that children are being continually reinfected, and that many children are suffering from Long COVID. (As to whether Kulldorff believed that “immunity” to COVID meant protection from infection, I’ll let his own words in Jacobin condemn him: “For nursing homes, the key is to utilize staff with acquired immunity and to frequently test other staff members as well as all visitors.”)

But clearly, the truth does not matter; only keeping kids in school, adults at work, and business-as-usual operating matters, and Kulldorff’s economy-friendly narratives provided a helpful bridge to push people back into their (profitable) routines.

It’s worth noting that at the time Kulldorff and the rest of the GBD crew were proclaiming COVID’s harmlessness to kids, they couldn’t possibly have had enough information to determine the veracity of their own claims. Viruses like the chickenpox, EBV, HIV, HPV, and HSV often present with mild initial infections but may cause major damage years later. We now know COVID can as well.

For so-called experts to run with an assumption that an initially mild-presenting acute infection would be long-term harmless was just that; an assumption. They were willing to gamble the health of a generation of children on a guess in order to go “back to normal” because that’s what the oligarchy clamored for. Because it costs money to shut the world economy down. Because people who mattered were angry. Because children aren’t people who matter.

Over the past five years, Kulldorff and the other authors of the Great Barrington Declaration have won an utter cultural victory over those who sought to protect public health, not least because so few on the left fought to defend disabled and vulnerable people as COVID was normalized. It is now accepted that “lockdowns” were an “overreaction” - despite the fact that The Economist estimated the global excess death toll attributable to COVID at nearly 30 million people as of January 2024.

This is not accepted because anything Kulldorff said was correct; it is accepted because it was repeated so many times, because it is economically and politically convenient for the oligarchy, and because the alternative- that COVID was dangerous- is scary. It’s scary because today, COVID is not gone. We did not, as Kulldorff claimed we would, all develop immunity. Our kids didn’t. They still catch it, in their schools which do not protect them from infections, where air quality has not been upgraded, where snotty kids are encouraged to come to class no matter what.

So if COVID is a virus that can disable them, damages their blood vessels, raises their risk of heart failure and cardiac arrest, causes autoimmune disorders, diabetes, and a range of mental health and cognitive problems, then we’d be doing something really awful by failing to deal with, or even acknowledge it. Maybe even unforgiveable.

For years now, right-wingers have successfully mainstreamed the “you-do-you” approach to public health. The concept was that everyone should simply gauge their own risk level and then expose themselves to as much or as little COVID as they like. In practice, of course, this is absurd; we all share public air. But even to the degree some of us are able to have control over our environments, this approach never accounted for children and babies, who could not possibly consent to being infected with this virus repeatedly from birth.

We now have nearly 6 million children in this country dealing with Long COVID, more than suffer from any other chronic illness, and the virus has been circulating for only half a decade. Do we plan to keep reinfecting these children with the virus that has already harmed them, a dozen more times before they even reach adulthood? Do we plan to disable more kids before they ever get to experience what a healthy body feels like? When we joke about it “not being worth it” to take mitigating measures like masking and testing, do we understand that it’s not just our futures we’re calling worthless?

What if, when kids get sick, we teach them to stay home and rest instead of going into school anyway and infecting others?

What if instead of assuming Long COVID is going to happen to “someone else’s” child, we assumed it might happen to our own, and acted accordingly?

What if instead of listing reasons it’s impossible to confront or deal with this problem, we set about trying to solve it, because we are, after all, the adults in the room?

What if instead of doing absolutely nothing, we did something?

Without further ado, here’s the most important information the public needs to- but probably doesn’t - know about mitigating COVID-19 this summer.

1. A large proportion of COVID-19 infections are asymptomatic- meaning those infected show no symptoms at all.

This meta-analysis from 2022 looked at 38 studies and found that 6,556 of 14,580 cases were asymptomatic, and the “overall estimate of the proportion of people who became infected with SARS-CoV-2 and remained asymptomatic throughout infection was 44.1%”.

Studies have consistently found that a high proportion of COVID cases- usually in the 35-45% range- show no symptoms. This is a critical piece of information for the public to understand when it comes to controlling COVID outbreaks and protecting oneself from infection.

If well over a third of COVID infections are asymptomatic - and COVID can also spread while people are pre-symptomatic, a day or two before they have symptoms- many of the guidelines being put forward are simply hygiene theater. They might make you feel safer, but they can’t really protect you from COVID- because you can’t know who has COVID just by looking.

In other words, “stay home if you feel sick,” “mask up if you feel sick,” “take a test if you feel sick,” and “here’s a list of common COVID symptoms” are all pieces of advice that would work to contain and control the outbreak of a virus that is always symptomatic, but they won’t do much to contain or control a virus that is often asymptomatic. And implying that you can know when you have COVID, implies that if you feel well, you don’t have COVID, don’t need to mask, and don’t need to test- which is precisely why we find ourselves in a never-ending series of COVID waves.

2. For those who are symptomatic, COVID can present like a flu, a cold, allergies, a stomach bug, or anything in between

Even the use of “razor blade throat” as a nickname for the strain may do more to confuse the public about the virus than educate them. It’s true that some people will end up with the aforementioned painful throat. But for those who have other types of symptoms, will they know that COVID can present differently in different people?

Since the original strains of COVID, a proportion of patients have experienced nausea, vomiting and diarrhea from infection, something few people seem aware of. A review study found that, “Diarrhea was the most common GI symptom, affecting 11.5% of the patients, followed by nausea and vomiting (6.3%) and abdominal pain (2.3%)”

Others experience no symptoms but a mild tickle in the throat or allergy-like symptoms. That’s why it’s not particularly useful to ask “what are the symptoms” of the new strain of COVID; because unless you test, you can’t know whether your illness is COVID or not.

3. Vaccines alone are not enough to prevent infection

As news broke that RFK Jr. wants to end the recommendation to vaccinate “healthy” children and pregnant women, many people online pushed back. But among the well-meaning comments, I noticed a pattern emerging: liberals insisting that they had “never had COVID” because “they were vaccinated”. This is not accurate. Our vaccines may provide some protection against infection for a matter of weeks, but that protection wanes rapidly. From last week’s piece in The Gauntlet:

It should be noted COVID vaccines provide very limited protection against infection. A Journal of Infection study looking at the VE of the Comirnaty [Pfizer] XBB.1.5 vaccine found that it reduced risk of infection by 70.63% at 14 days after vaccination, but “VE declined rapidly and by approximately weeks 9–12 post vaccination, the VE point estimates were close to zero with considerable uncertainty in the estimates from day 60 onwards".

In other words, vaccine efficacy vs infection declined to near zero by 60 days post-vaccination- and many people are making claims that their vaccines are protecting them from infection months and even years past the point of their last shot. This simply isn’t what these shots do. They’re approved on the basis of reducing risk of hospitalization and death, which they demonstrate an ability to do at the 4-6 month mark (although VE vs hospitalization and death also wanes over time, which, along with viral mutation, is why boosters are critical).

Novavax, a protein-based vaccine and an alternative to the mRNA vaccines that have been heavily pushed by the US federal government, is somewhat more durable. Of Novavax, a JAMA Network study found, “the estimated vaccine effectiveness during the first 4 months after full vaccination was 31% against notified SARS-CoV-2 infection and 50% against symptomatic COVID-19. Estimated effectiveness waned against infection but remained stable against symptomatic COVID-19.” 31% at 4 months is nowhere near the 100% at 4 years protection that people seem to imagine they have- but it’s better than “close to 0 from day 60 onwards”. That’s information the public should have, in order to make educated choices about COVID prevention.

In any case, one annual shot, as current guidance suggests, simply can’t protect people from infection as many seem to believe.

This means that, as people are “making their own risk assessments” about COVID, they are making those risk assessments based on false assurances and wrong information. How many people might mask if they understood that their vaccines cannot protect them from infection, that many COVID infections are asymptomatic, and that even asymptomatic and mild infections can lead to silent damage or Long COVID? Or that they unknowingly might be passing infections on to vulnerable people, including family members and friends?

If members of the public believe they’ve “never had COVID” because they’re vaccinated- which again, isn’t actually possible- they’ll refuse to adopt other mitigation strategies, like day-to-day masking, testing, or pushing for clean air, because they believe they are not capable of catching nor spreading the virus.

This is a major public health issue: you do not want to have a population that is capable of catching a disease believing that they are unable to catch or spread that disease. Confusing, out-of-date, and mixed messaging around vaccination has left the public unable to make informed choices about how to protect themselves- and others- from COVID.

4. Rapid tests have a high false negative rate- especially during the first days of symptoms

This is where even a desire to do the right thing is going to run up against the very limited number of tools we have to control COVID- and why activists and in particular disabled people have been advocating and agitating for better mitigation resources for years.

In the earliest days of the pandemic, COVID tests were free at COVID centers. Then, as COVID centers closed across the country- despite cases remaining higher than ever- the White House would occasionally reopen the free test program whereby a family could receive four tests per household. This number of tests is totally laughable, especially given the accuracy rates of Rapid Antigen Tests (RATs).

A review study found that RATs had a false negative rate of 67% in the first 4-5 days of symptoms. For more accurate results, patients are encouraged to repeatedly test, ideally over the course of several days. This, of course, adds up. But a single RAT test simply cannot rule out a COVID infection- and reporting should emphasize this. (A positive RAT test, on the other hand, is accurate; if your RAT test is positive, you have COVID).

PCR tests are much more accurate, but for most people, they’re both more expensive and more difficult to access. Accessing a PCR generally involves making a doctor’s appointment or visiting an urgent care, itself a major point of disease exposure for vulnerable people due to ongoing lack of infection control. If you can afford them, Metrix are a good option for at-home tests that boast PCR-accuracy. You’ll need to buy a card reader for $50, then each test is $25.

Access to accurate tests for illnesses spreading in the community is never something you want stratified by class, although it’s hardly anomalous in our healthcare system. Local Mask Blocs have attempted to fill the gap where government has abdicated, sometimes offering rapid tests for free, but a strong public health response to COVID would require free, accurate tests on demand.

5. COVID is fully airborne and can transmit over long distances - more than six feet

Yes, even the WHO and the CDC got this one wrong back in 2020. And that might be more forgivable, if they’d done a better job correcting their error with public relations campaigns as extensive and expensive as the original “social distancing” messaging that people still remember.

Instead, they quietly acknowledged that COVID is fully airborne in 2021, but failed to update important recommendations like infection control protocols in hospitals, and seem more concerned about preserving their reputation than educating the public about their mistakes.

Now, most people have an incorrect mental model about the way COVID can spread. They believe that if they keep their distance from other people in a store, like a supermarket, it’s impossible for them to get COVID. They back away from a coughing person in the pharmacy, but don’t think it’s necessary to wear a mask. They emphasize measures like handwashing and sanitizing surfaces, which turned out to be a minimal form of transmission for COVID.

It’s important to know that COVID can hang in the air like smoke, for hours. You can catch COVID from someone who has already left a room if it hasn’t been well ventilated. This is why indoor clean air is so important; COVID activists want to ensure that we are changing out indoor air (ventilating) as well as cleaning that air (filtrating), so that COVID doesn’t sit in the air as you walk around the grocery store.

Putting it all together

Each time a new wave crops up, the media scrambles to let the public know that COVID is spreading “again” (although of course, a new wave has arrived because the virus has been spreading continuously since 2019). But each time, it fails to inform the public that nearly half of COVID cases are asymptomatic, that COVID looks different in different patients, that vaccines do not prevent infections, that rapid tests have high false negative rates, and that COVID is fully airborne.

Taken together, the virus I’m describing is much more difficult to control than the one the press presents. The press frames the virus as something that can be halted by familiarizing yourself with the symptoms, staying home once you feel sick and test positive, and avoided altogether by simply getting vaccinated or keeping ones’ distance from sick people. None of these claims are really accurate. But they all fold much more easily into the political project of “Back to Normal”.

In other words, the virus I’ve described - one that is often asymptomatic and evades vaccines- requires ongoing mitigation measures above and beyond what our political leaders were willing to provide, so the realities of the virus were….softened. Whittled. Reshaped.

The misinformation that reigns in liberal spaces is not the result of accidental miscommunication. People don’t know that the virus is asymptomatic 40% of the time because there is simply no universe where that virus is controllable without an elimination strategy, or a day-to-day mitigation strategy. The facts I’ve listed in this article are not just little-known facts; they are inconvenient truths.

Liberals like to believe that they are different from the cruel, uncaring conservatives who spit with anger when asked to participate in community care by halting the spread of COVID. However, to maintain that philosophical distance between themselves and conservatives, they’ve constructed an alternate universe where “halting the spread of COVID” requires nothing more of them than an annual vaccination, an inaccurate test, and staying home when already ill.

In actual fact, halting the spread of COVID is far more difficult, and requires much more commitment and diligence. It’s where the rubber meets the road and where most people, it’s clear, are unwilling to walk the talk of community care. To halt the spread of COVID, we must practice mitigation measures on a daily basis. That means consistent masking in public. It means testing, with an accurate test, if you’re going to be unmasking around others. It means acknowledging not only the benefits of our current vaccines, but also their limitations, because we do, in fact, “believe in science.”

“Razor blade throat” makes for a sexy headline, a scary symptom, and a nasty horror story, but for 40-some percent of those who will go on to catch NB.1.8.1, there will be no red, bloody throat or hacking cough. There won’t be any reason for them to assume they should take a test, throw on a mask, stay home, or presume their vaccine “failed”. But just the same as the bloody-throated lung-hacker-upper that everyone will be careful to keep six feet away from on public transit, those people will pass COVID on to a new baby who has to be hospitalized, a young woman who goes on to be disabled, or a senior citizen who goes on to die.

That’s why we need to address the way we think about COVID-19, and infectious diseases generally, with urgency. It’s time we abandon the paradigm of symptomatic spread that leaves us trapped in endless waves of infection, and embrace a proactive, holistic view of airborne disease control that begins with clean indoor air, and encourages people to adopt measures like masking and testing. Until then we’ll continue to be sick- and confused about why we’re sick.

Complicating matters, the shots we refer to as boosters are in fact updated shots that reflect ongoing mutations to the virus. Vaccine makers work to match each fall’s new shots to circulating variants; the closer the strain in the vaccination to the circulating COVID variant genetically, the more effective it will be.

Viral mutation is one reason that getting updated shots is important for everyone who is medically able- not just the “vulnerable”. As COVID continues to spread far and wide with no containment strategy in place, mutation will continue to occur. Right now, we’re seeing the new variant NB.1.8.1 take off in China. Our current vaccines are formulated for the KP.2 variant (in the case of the mRNA shots) and JN.1 (in the case of Novavax). These strains were both dominant last summer, with XEC also producing a winter spike. But many people only received the initial shots, which were formulated for the original, wild-type strain.

The public largely fails to understand that having had two or three shots back in 2021 does not make them fully vaccinated. In fact, 2021 COVID vaccines are doing little to protect them in 2025. The previous vaccine formulas are no longer authorized; if you wanted to get a 2021 formula vaccine, you couldn’t, because it’s outdated. You’d get a 2024-2025 formula vaccine, and later this year, you’d hopefully get a new formula shot.

Along with the genetic mutations the virus has undergone over the past four years, our vaccines do not produce long-lasting immunity, with significant waning in efficacy shown after the three-month mark. In 2024, a research team at Emory University discovered why, finding that the mRNA vaccines “fail to generate mature and durable antibody-producing cells in the bone marrow.” Their results were published in Nature Medicine as reported in NIH Research Matters:

The scientists found that they could readily detect long-lived plasma cells that target tetanus and influenza. In contrast, while shorter-lived antibody-secreting cells specific to SARS-CoV-2 were abundant, long-lived ones were mostly absent. Even among five participants who had recent SARS-CoV-2 infections and vaccinations, long-lived plasma cells against the virus were scarce in the bone marrow samples.

This study provided an explanation for a phenomenon that had already been observed in vaccine efficacy data: rapid waning of efficacy with time. Take, for example, the VISION data looking at efficacy of the updated 2023-2024 monovalent booster, formulated for the XBB strains, collected between September 2023-March 2024. This data found that among immunocompetent adults, the booster reduced risk of both an ER visit and hospitalization by 50% at 7-60 days after vaccination. However, by 120-179 days after vaccination, or 4-6 months, risk of hospitalization was reduced only 25%, and risk of an ER visit was reduced not at all. Over the course of just a few months, vaccine protection was significantly lowered- halved, in the case of hospitalization, and wiped out in the case of needing the ER. For immunocompromised people, the numbers were, of course, worse; at 60 days, risk of hospitalization was reduced 38%. By 4-6 months, risk of hospitalization was reduced only 14%.

Being honest about both the capabilities and limitations of our current vaccines is critical for building a functional, holistic COVID response with science at its heart. If the public had been educated about the inability of our current vaccines to provide strong, lasting protection across years and variants, that would increase demand for additional interventions like clean air, sick leave, testing, and masks, as well as for research funding for next generation vaccines. It would also have increased demand for “booster” shots, rather than driving demand down. However, both parties have pushed the narrative that the pandemic is “over”, that COVID became “mild” during Omicron wave 1, and that the initial vaccine rollout “ended” the threat.

Now, Republicans are using the public’s complacency to push the few tools we have left out of reach. In fact, in FDA Commissioner Marty Makary and Center for Biologics Evaluation and Research Director Vinay Prasad’s NEJM piece arguing for the restriction of vaccines, they specifically call out Americans’ reluctance to get boosted as part of their justification for limiting access, noting, “Less than 25% of Americans received boosters each year, ranging from less than 10% of children younger than 12 years of age in the 2024–2025 season to 50% of adults over 75 years old”. Would this abject failure to boost the country have occurred if the public had been informed that their vaccines were waning significantly by the 4-6 month mark? That immunocompromised people’s protection from hospitalization at month 6 was 14%? That new variants require new vaccines?

The decision to limit access to new “boosters” is a decision to limit access to COVID vaccines, full stop. These shots don’t simply “top up” protection from shots you’ve already received; they contain protection to genetically distinct strains of the virus that your body won’t be able to easily recognize without a new vaccine.

This is a decision based, not in science, but in the false belief that the “unhealthy” are a static, unchanging group of people, and that public health is an individual choice, not a collective pursuit of government. This belief is held by both Republicans and Democrats, and has been pushed into the mainstream by most major media outlets over the last five years as widespread, repeated COVID infections were normalized.

These beliefs- that only a small population of “at risk” people need concern themselves with COVID, and that it’s not the government’s responsibility to control infectious disease- have enabled our leaders to abandon collective mitigation efforts while shredding the meager tools we did have in place early on. Not only is the public invited to believe that COVID only threatens “at risk” people, we are also encouraged to “other” and stigmatize at-risk people via mixed messaging.

Despite clear CDC guidance that many remain at elevated risk of death and poor outcomes from COVID, nobody in positions of power will wear a mask in public, creating the impression that mitigations are wrong, outlandish, and out of step with their own issued advice. This makes it impossible for most people to either identify themselves as high-risk, or to identify high-risk people as allies with aligned interests. In fact, collective public health benefits all, not only those currently in high-risk categories.

Reviewing the list of conditions that make one high-risk for poor outcomes from COVID, we all know plenty of people who fit the criteria on the list. People with asthma, diabetes, people who smoke or are pregnant, people with cancer, even people with mental health conditions like depression and people who are overweight are all included in the “high risk” category. Yet years of stigmatizing messaging about those who chose to protect themselves from COVID- that they are weak, weird, bad, and crazy- makes people in all of these groups unlikely to take individual measures to protect themselves. A perfect example is our former President Joe Biden. An 82-year-old man experiencing cognitive problems and prostate cancer, he waved a mask around jokingly when exposed to COVID. He could not conceptualize of himself as “high risk” because when “high risk” people are otherized, nobody wants to assign themselves to a stigmatized group.

When the public believes that “most” people don’t have to fear COVID, and they automatically categorize themselves as “most people,” they see no need to mitigate the out-of-control spread of the virus in public spaces; thus, the state has no need to upgrade indoor air quality, no reason to provide paid sick leave and preserve work from home, no reason to provide free masks and tests, and no reason to encourage masking and testing behaviors.

It’s certainly true that some people have more health conditions and risk factors than others. But those categories are highly porous, and people move across the border from “healthy” to “unhealthy”- and even back the other way- every day. One of the fastest ways to move between the amorphous “healthy” and “unhealthy” categories is to get infected with COVID-19 and fail to recover, a condition known as Long COVID. Vaccines cannot eliminate your chance of developing Long COVID, but they can reduce your risk. A systematic review of 12 studies published by the European Centre for Disease Prevention and Control (ECDC) found that vaccination reduced the risk of Long COVID by 27%.

Long COVID is not an uncommon outcome of a COVID infection. Estimates vary widely because “Long COVID” is an umbrella term that can comprise both severe chronic illness, and a variety of post-COVID health conditions. But a review study in the Lancet found that 45% of COVID patients had at least one unresolved symptom four months after their COVID infection. This speaks to the extraordinarily high health burden of ongoing, repeated infections. Additionally, risk of Long COVID is cumulative, meaning that every infection increases your risk of developing long-term health complications.

It should be noted COVID vaccines provide very limited protection against infection. A Journal of Infection study looking at the VE of the Comirnaty [Pfizer] XBB.1.5 vaccine found that it reduced risk of infection by 70.63% at 14 days after vaccination, but “VE declined rapidly and by approximately weeks 9–12 post vaccination, the VE point estimates were close to zero with considerable uncertainty in the estimates from day 60 onwards".

That’s why vaccines should not be the end-all be all of a robust response to COVID, but rather, part of a larger strategy that would actually blunt and significantly curtail viral waves in our communities.

This is where we get into the media’s complicity with the narrative Republicans are deploying to limit vaccine access. For years, the media has claimed that “COVID is over” for the community at large; only at-risk individuals need to prioritize measures to protect themselves. This vaccine policy simply follows that rubric. It pushes the logic that at-risk individuals (which, in reality, comprises everyone) are the only ones who are under threat from COVID, and that they can simply chose to protect themselves with their lone vaccination.

Even without the introduction of this anti-science policy, the media and the two-party embrace of the you-do-you approach to the pandemic had already decimated vaccine uptake. As of April, only 23% of adults had taken this year’s shots. That means that even without restrictions, most people had already arrived at the conclusion the Trump administration is now imposing: it’s only a problem for others, not me.

In August 2024, ABC News reported on the newly updated vaccines under the headline, “The new COVID vaccine is out. Why you might not want to rush to get it” with the subhead “Many healthy people have immunity from vaccines and previous infection.”

From the piece:

If you're in a vulnerable population and waiting to get vaccinated until closer to the holiday season, Schaffner said, it makes sense to wear a mask and avoid big crowds, and to get a test if you think you have COVID.

Throughout the last four years, reporting has imagined the so-called “vulnerable” people can somehow exist outside of the society that is freely spreading the virus they need to avoid. Simply “avoid crowds”. If you have to work in a grocery store, ride on a bus or a subway, or hey, seek treatment at an ER? Or if your spouse does? If your child attends a school, like every other child? Well, we won’t get into that. We haven’t really thought it through.

Why would ABC News advise only “vulnerable” people to test if they think they may have COVID? Who exactly does ABC News think these vulnerable people are catching COVID from in the first place?

By otherizing the “vulnerable” population, everyone is free to imagine themselves safe from the worst ravages of COVID; it isn’t me at risk, it’s those people.

Downstream of this belief are various ideas that are damaging and destroying public health: the idea that a healthy person cannot move into the category of “vulnerable”.

The idea that each person can and should make an individual risk assessment based on their individual health status, which doesn’t change and isn’t affected by those around them.

The idea that public health is something we can each do for ourselves.

The idea that none of us owe anything to one another.

The idea that if I don’t feel well, I shouldn’t take a COVID test because I’ll probably recover just fine, an idea equally at home in a Vinay Prasad blog and apparently ABC News.

This is what the new vaccine restrictions once again invite Americans to do; imagine that only some people are at risk from COVID. And if only some people are at risk from COVID, I can imagine I’m not one of them. And if I’m not one of them, I have no incentive to care about the collective project of viral mitigation and elimination. It once again reinforces the false idea that we can know who will be harmed by the virus and how.

President Biden used to assure us that “we have the tools” to fight the scourge of COVID in our communities. Over the past four years, those tools have been under constant attack from the state. Now, we face down new COVID variants with limited vaccine access, masks stigmatized and even criminalized, tests expensive and out of reach to many, remote work under attack, and paid sick leave never codified. Most critically, the conversation around upgraded indoor air quality has never meaningfully gotten underway. Until we see COVID for what it is: a public health crisis affecting us all, rather than an individual problem affecting a few, it’s certain that we’ll continue to wallow in endless waves of the virus.

Story updated 6/2/25: On May 27th, attacks on vaccine access continued as HHS Secretary RFK Jr. announced that HHS would no longer recommend vaccines for “healthy pregnant women and young adults”. Days later, the CDC modified its recommendation for children, using the following language:

Shared clinical decision-making vaccinations are individually based and informed by a decision process between the health care provider and the patient or parent/guardian. Where the parent presents with a desire for their child to be vaccinated, children 6 months and older may receive COVID-19 vaccination, informed by the clinical judgment of a healthcare provider and personal preference and circumstances.

In other words, parents may vaccinate their children, and doctors may recommend that children be vaccinated. However, dropping the clear guidance that all children should receive vaccinations will cause confusion and harm.

Eventually, I swallowed my pride and began listening to books on tape, something I discussed in this essay about learning to accept my need for mobility and accessibility aids. But by this time, my relationship with my gorgeous Penguin Classics Deluxe Edition novels was personal and emotional; I was fixated on finishing them the old-fashioned way. Slowly and steadily, I crawled through books five and six. I knew that, like me, Proust had been chronically ill, and I knew that, like me, he had been getting sicker as time went on.

I joked that reading the books while getting sicker, knowing that Proust was writing the semi-autobiographical books while getting sicker, made me feel like I was living in some warped Charlie Kaufman screenplay.

I had always heard that Proust suffered from asthma, and this is the diagnosis he often mentions in the books. And certainly, asthma before inhalers and modern pharmaceuticals was a serious enough ailment. But I also noted that, at times, his description of his illness matched closely with my own and others’ experience of ME/CFS. He seems to suffer from long periods of being homebound or bedbound, and his condition seems to relapse and remit. At times, he disappears from his own books for a matter of months or even years, noting that he has gone away to a sanitorium but failing to detail what happens there.

When I googled his medical background, another diagnosis came up: Vascular EDS. The ScienceDirect paper about Proust’s possible vEDS contends that the “diagnostic errors” made in the case of Proust are still common in medicine today. A fascinating analysis, and the diagnosis itself makes an argument in favor of possible ME. EDS, which I also have, is a connective tissue disorder that makes one much more prone to developing ME after a viral infection. I speculate that Proust may indeed have had ME, in addition to asthma and vEDS.

Whichever specific chronic illnesses Proust suffered from, it’s clear that he was, in fact, sick. The way the ScienceDirect paper frames the “conventional wisdom” argument for Proust’s hypochondria is revealing and, I believe, critical:

No one who complained of ill health at such length and in such detail could be genuinely ill and still manage an output of three million published words in a career begun relatively late in life.

This argument is not really an argument at all, but an insight into an abled medical system that fundamentally fails to understand chronic illness. Chronically ill people can experience major fluctuations in day-to-day capabilities, their pain may worsen and improve, their capabilities may exist on a spectrum, and an inability to walk, move, or think clearly one day does not preclude the ability to write a masterpiece on another day. Such a statement could truly only have been made by one who misunderstands chronic illness entirely.

Proust was born in 1871 and began writing In Search of Lost Time in 1909. He was 38 years old. I, by pure cosmic coincidence, am also 38 years old this year. (Paging Charlie Kaufman.) What I find so relatable about Proust's experience of beginning to write these books at this age is not (I repeat, not) that I think I’m a super-genius literary icon set to begin writing a historic series of future classic novels. It’s that I, too, as I’ve gotten sicker, have begun to withdraw from the social life that once animated me, and to spend my time thinking, writing, and reminiscing about a past that often feels more real to me than my present or future.

I wonder if this experience- of turning inward, of looking backward- at such a young and typically vital age, an age when most people are in the prime of life- is a state particular to those of us suffering from severe chronic illness.

I remember having a particular kind of anxiety while I was attending college. It was a strong, recurrent, overwhelming anxiety that I thought about often. At the time, adults often informed me that college had been “the best time of their lives.” And I was, to be sure, having a wonderful time at college. But this little tidbit of information from well-meaning adults gave me existential angst. I hated hearing it. “College was the best time of your lives?” I’d wonder, disbelievingly, “So it’s all downhill from here?”

I attended Kenyon College, a private school in a quaint little isolated town in Ohio, far away from the trials and tribulations of the world. During my freshman year, in 2004, there wasn’t yet cell service on campus, which was one mile long and strikingly beautiful. Invitations to campus parties were slipped under my door. I never signed up for early morning classes, the better to sleep in. The fact that I was having so much fun at Kenyon- and that the “real world”, by comparison, seemed so dull and joyless- only further reinforced my concern that adults’ statements about college might, in fact, be entirely literal.

I have a vivid memory of learning that Paul Newman, a famous alumnus of Kenyon, claiming that his years there were the best of his life. I’m sure it was a quote for some fundraising drive, but it hit my existential fear square on the head. Kenyon was the best four years of Paul Newman’s life??? What chance do I have?

I dreaded graduation deeply, and sure enough, my first few years out of college were rough. I hated having an office job. I hated getting up early in the morning, wearing hideous “office” clothing that fit me badly, trying to mold my personality to be blandly office-acceptable. But within a few years, life improved. I got a job bartending and left my office job; I loved doing something social and fast-paced instead of staring at a screen all day. I loved building community with my coworkers and learning the names of people in my neighborhood instead of commuting to Bethesda every morning. I wore whatever I wanted to work, and I came home at 4 am.

As I built my life in my 20s, I was always mindful of the anxieties I’d had back in college. I always wanted to feel like the life I lived was intentional, full of people, work, and hobbies I’d chosen and loved, so that I wouldn’t become a person who would look at a drunken 19-year-old and tell them, “it doesn’t get any better than that.”

I took to travelling by myself. Bartending didn’t offer paid time off, but it also didn’t have any kind of cap on vacation days. I would save up, find friends to cover my shifts, sublet the room I rented in a group house and take off for a month or two, come back and do it again. I stayed in hostels that charged $8 a night. I ate street food. I made friends. I fell in love with the world. I didn’t miss Ohio.

As bartending began to wear on me and my body, I gravitated toward a job that felt meaningful. I ended up taking a position as an organizer for Bernie Sanders’ 2016 Presidential campaign in Las Vegas, Nevada. Organizing was hard work and, since I was starting my career over again, it was an entry-level salary. But once again, I felt fulfilled and happy; again, I made friends. From there I got addicted to campaigns. They combined the high-octane energy of bartending with the adventurous nature of travel. Between cycles I helped out with environmental work at Sierra Club and Greenpeace.

Through it all I prided myself on looking forward; I’d loved bartending, but when the time came to leave, I didn’t miss it. Life was about growth, learning lessons, carrying them with you, new people, new places, new adventures. And then.

The world halted when COVID hit; it halted again, harder, when I got sick. For now, there aren’t any new people, places or adventures, and until I feel better, until there is some medical breakthrough or some existing treatment helps me radically, I won’t be travelling, getting a new job, or making new friends. I’m seized by what I believe to be the same impulse Proust had; I reminisce constantly about the lives I’ve already led. Moments come back to me, oddly, suddenly.

The crunch of wet gravel under my feet at Kenyon as I begrudgingly march across campus to class in the cold, surrounded by gothic buildings in the fog.

The clank, clank, clank of beer bottles as I load them in the freezer ahead of a busy night in the basement of Brass Monkey.

The hooting of an owl outside my grandmother’s house in Tampa, Florida, on a spring night.

The rumbling of a heavy suitcase as I drag it toward the baggage drop, anxious to be rid of it, excited to be heading somewhere, anywhere but here.

Proust was 38 when he went back to the beginning- the very beginning. As early as he could remember. He swims around in his memories of craving his mother’s arms as she sits in the garden, him upstairs in his bed. And from there he proceeds to tell the story of an entire (fictionalized) life. It is this urge that is familiar to me. The way that 80-year-olds in nursing homes long to pull out their photo albums and explain the story behind every photo; that’s the urge of the 38-year-old who is becoming homebound or bedbound.

I notice that my memories don’t tend to feature particular people so much as they do particular feelings, particular moments, akin to Proust’s madeleine. Often my body is in motion in these memories; driving a car, taking a walk. Wandering through a museum in Mexico City, smoking a joint in Prospect Park. It’s strange that after so many years, it’s only now that I’m reminiscing about Kenyon; now, when I’ve fallen out of touch with nearly everyone I was close to back then. It’s not as if I want to be 20.

But I do long to be mobile.

I long to put one foot in front of the other and hear the satisfying crunch of new-fallen snow. I long to step off a Stairmaster in the bazillion dollar gym complex wet with sweat, wipe my brow and head for the showers. It’s not that I long to stumble glassy eyed down a basement stairwell drunk on watered-down keg beer. It’s that I long to feel that life is ahead of me, not behind me.

I can’t know precisely how Proust felt as he began writing In Search of Lost Time. But I venture perhaps, trapped. Disillusioned. Exhausted. Physically, mentally. Tired of people and the transactional, often deceitful nature of relationships (something I believe comes through strongly in the books). His works are a gift to all, surely, but they are a particular gift to those of us who find ourselves trapped at home at a young age. Raw, unsparing, challenging, a work of pure grit, talent and defiance, Proust’s saga allowed him to lay claim to a future by repurposing his past.

Proust, a man so talented that for decades his illness has been doubted on the sole basis of that talent. “No one… could be genuinely ill and still manage an output of three million published words.” It is bizarre, the twin limitations and expectations put on chronically ill people.

Proust, genuinely ill, with an output of three million published words.

Proust, genuinely ill.

I do believe that chronically ill people can read something special in Proust’s works that others may not see. I read these volumes as his dazzling, inimitable love letter to life, his ‘fuck you’ to his illness, and his attempt- via detailed description- to immortalize what was slipping through his fingers: absolutely everything.

For those of us who value workers’ rights, the news is similarly positive. Gallup’s 2025 State of the Global Workplace report found that “remote workers have the highest levels of engagement and life satisfaction.”

Forbes reported in 2022 that a survey of over 12,000 workers found that those who worked from home were “20% happier on average than those who didn’t have the ability to work from home.”

In the UK, the Sunday Times reported that even hybrid workers took fewer sick days than workers who were forced into offices each day, and 68% suffered fewer stress-related physical symptoms.

In addition to promoting better well-being and work-life balance, remote jobs are also more accessible for disabled people, especially at a time when COVID-19 continues to circulate completely unmitigated.

Reducing the necessity of commuting also has myriad positive social effects: for workers, it means more time with their families, to spend on personal hobbies, or resting before the day ahead. For the environment, it means fewer emissions. Consider the millions of people who could be working fully remote in our online, networked world, and what eliminating all those two-way commutes could do for the planet, day in and day out. We saw a glimpse of this world in 2020; carbon emissions fell by a record 7% during lockdowns. Of course, commuting was only a slice of this reduction, but transportation as a sector contributed the “largest share of the global decrease in emission of carbon dioxide.”

Then there are the potential housing effects. Businesses with remote staff save money by shuttering or drastically reducing office space, leading to commercial real estate oversupply. According to Scotsman Guide, a B2B magazine:

In a widely anticipated trend, an increasing number of office properties in the U.S. are in distress…Cities boasting a high concentration of tech companies with remote workers have been hit particularly hard by office vacancies, with Seattle, the San Francisco Bay Area, Denver and Austin, Texas, all posting office vacancy rates above 25% in March…There were 11.9 million square feet of construction starts in 2024, according to the report, down from about 25 million square feet in 2023 and 50 million in 2022.

Less demand for office space downtown leaves more room for residential housing. Meanwhile, lawmakers are currently scrambling to pass legislation to make it easier for developers to transition properties from commercial to residential.

Looking at the landscape in 2021, workers certainly held the upper hand. People were accustomed to working from home by this time, some had moved away from their employers, offices had already begun to restructure, and it was clear that productivity had not been harmed by the remote work revolution.

A competent left and labor movement would’ve pressed its advantage, driving home these gains for workers and ensuring that these benefits wouldn’t and couldn’t be snatched back. Instead, unions, organizing groups, and left commentators sat back and watched as right-wing rhetoric about the “laptop class” became the central narrative about the pandemic shutdowns. Often, left publications even began to regurgitate these claims themselves.

At this point, right-wingers have spent years building their narrative about the lockdowns as a time of milk and honey for the evil “laptop” people. These “laptop class” people were the reason for all the negatives we associate with the pandemic- the virus, in this retelling, has been entirely wiped from memory. That, itself, is a stunning propaganda victory. People talk about children having to be “kept at home” as a tragedy, then attribute this tragedy, not to a novel virus that killed tens of millions of people worldwide- no, no- but to policy decisions designed to protect vulnerable people. In the conservative view, the millions of dead people are simply irrelevant. This is a dramatically, fundamentally politically far-right interpretation of the events of 2020.

It’s also become the go-to interpretation for people on all ends of the political spectrum, because the left has failed to provide a counter-narrative that acknowledges the necessity of protecting vulnerable people, the dangers of COVID, and the importance of the social safety net measures and worker protections introduced in 2020. Instead, claims about the “laptop class” have begun to infiltrate left spaces.

The claim that remote workers were abusing frontline workers by staying home was dreamed up by the capitalist owner class to set workers against one another, and as part of a larger narrative about pandemic protections being authoritarian and unnecessary. In truth, the more people who stay home during a pandemic, the less circulating virus, the better for everyone. The fact that frontline workers were - and are- exploited and underpaid, particularly so during the lockdowns, was not the fault of an amorphous “class” of remote workers, because “remote workers” are not a class. Rather, it was specifically the fault of the owner class, the CEOs, bosses, politicians who fight against minimum wage hikes, billionaires who fund politicians who vote against affordable housing and free healthcare.

And wouldn’t you know it? Those billionaires and politicians who forced “frontline” workers into factories in 2020 to be exposed to the virus are the same people forcing “laptop” workers into offices in 2025 to be exposed to the virus. If you are in a position to be forced into a workplace by your boss, you’re probably not the class enemy of the exploited masses!

The claim that remote work is bad because not everyone can work remotely is fundamentally an attempt to gin up resentment between workers in order to prevent benefits or privileges from accruing to anyone. This tactic is tried and true. “Wow, those people at McDonalds want $20 an hour- yet paramedics don’t even make that,” is a common argument conservatives trot out. Any time discussion of raising the minimum wage comes up you’ll find right-wingers claiming that raising the wage of one worker will insult another worker, who should be making more than them.

“Forgiving student loans will harm people who already paid their student loans,” is another such argument, setting the workers who’ve paid off their debt against those who haven’t yet done so. In each of these cases, conservatives try to keep workers from accessing new benefits by stoking the resentment of other workers.

Over the past few years, conservatives began to incorporate “laptop class” rhetoric into their culture war armory. It’s a canny way to keep public anger at wealth inequality focused away from billionaires, politicians, and bosses. And that framing has been central to the recent rise of Elon Musk and his DOGE minions; Elon famously demanded that federal employees return to in person work, as his fanboys across X gloated that their perceived “lazy” enemies would be forced to commute again.

DOGE, in turn, began slashing every department haphazardly, cutting everything from USAID to cancer research. Memes from right-wingers have circulated, mockingly informing government workers that they will have to get “real” jobs working in factories and mines. All of this circles back to the perception that “laptop jobs” are not “real work”, something which left organizers unconsciously reinforce when they accept and promote the lockdown grievance politics framing of the pandemic.

Of course, cutting the federal government is an age-old goal of conservatives, as has been the dislike of “academics” and people who are seen as “too educated”. But that’s perhaps why it’s unsurprising to find right-wingers build a culture war around the idea of “laptop people” working at home. What is surprising is to see unions fail to push to protect and expand workers’ new freedoms, and to see liberals and leftists buy in to the clearly bad-faith interpretation that people who work at home are lazy and exploiting “real” workers.

All workers - all people who work for a wage, who are dependent on their income, who cannot survive without their employer, who do not own the means of production, who are not of the ownership class- are real workers. Academics, factory workers, cancer researchers, bartenders, USAID employees, nurses, teachers, writers, actors, flight attendants, baristas. We all deserve healthcare, paid sick leave, to be well-compensated for our time, to work under the best possible working conditions, and to work under accessible conditions. For people who still have to work in person as COVID-19 continues to spread, that will mean upgraded air-quality in every public space as well as liability laws that protect workers from on-the-job infections. For people who don’t, remote work should be standard.

Capitalists like Elon Musk are willing to fight to bring workers back to offices, not for any rational or financial reason. It is a battle for control over the lives of workers, and it is being fought with psychological weapons, with grievance politics and lockdown resentment. Are we willing to fight back in kind? Are we willing to articulate a vision for a future that acknowledges the successes of the past? That snatches back the pandemic narrative from the right-wing and declares, actually, despite the tragedy of COVID-19, remote work was an unmitigated success for workers, employers and the planet, and we are going to fight to keep it?

The right has spent years spinning a narrative about early pandemic measures - imperfect measures nonetheless that saved millions of lives, kept people out of poverty, provided people with the ability to work remotely, and more, during a tragic emergency. In response, the left has continually swallowed the right-wing narrative about these measures, accepted and promoted right-wing framing, and then expecting the public to somehow tack left-wing ideas onto the end of a right-wing worldview.

If you start from the premise “we should’ve let a million more people die rather than switch to remote schooling and close restaurants” you’re not going to end up at “Medicare-for-all” and you shouldn’t wonder why your country is falling to fascism. There are implications within these arguments; implications about the value of human lives, about the importance of protecting the vulnerable, about the primacy of the almighty dollar, and above all about the sacredness of the status quo. And ultimately, the argument for returning to the office, like every argument for the “return to normal”, is an argument for the return of the status quo.

Inside, I told the receptionist where I was going. The building has a strange mix of security measures; the front desk has to call the elevator for you and send it up. Visitors who sneak into the elevator without speaking to the front desk will find themselves in an impotent box; no buttons. I discovered this the hard way on my first visit. Now, I do it all by the book.

The place has begun to feel familiar to me the way, in the beforetimes, a local coffee shop might have. I no longer feel uncomfortable and lost in the hallways. I’m becoming a fixture at my specialists’ offices the way I’d once been at my favorite bars. I know the hours. I know where the bathrooms are.

“Neurology,” I say. And the security guard calls the elevator in their modern way.

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To most logical people, RFK’s two stated ambitions appear to conflict with each other. How can we possibly tackle the chronic illness crisis, while slashing- even halting- funding for medical research into infectious disease? Since 2020, it’s only become more clear than ever that infectious diseases like EBV, HIV, HPV, herpes, syphilis, and now COVID-19 lead to chronic illness.

The answer lies in RFK and his MAHA movement’s broad and basic misconceptions about health, science, medicine, and disease, and their eugenicist fantasies about a world, not free of illness, but free of sick and disabled people.

MAHA, or “Make America Healthy Again”, is an acronym which, like MAGA, harkens back to some temporally ambiguous bygone era when Americans were “healthy” (and great). Never mind that the American lifespan has consistently increased since records began way back in 1860, with the notable exceptions of the Civil War, the Great Depression, and the COVID pandemic. Never mind the invention of vaccines- which RFK himself has been notoriously squirrely when not outright hostile about. Never mind across the board increases in standards of hygiene throughout the 20th century, the introduction of water filtration, pasteurization, and infection control practices.

MAHA wants to “go back”, to “RETVRN” in fascist parlance. Fascist and far-right movements are steeped in nostalgia for things that never happened, happy eras of freedom and glory that never existed; MAHA is no exception. What is it, exactly, that they miss about those bygone eras? What’s changed, what do they want to change back, and how do those things play into their ideas about illness and wellness?

One major difference between the modern approach to medicine and the pre-modern era- the one MAHA seems so obsessed with, with their hankering for “raw” milk, unvaccinated babies, unregulated food stuffs, and unproven folk remedies- is the modern emphasis on prevention and treatment of disease. As in, viruses and bacteria. Another difference is the suite of rights disabled people have won to participate in public life.

Many MAHA adherents do not seem to believe in avoiding infectious disease at all. Take raw milk. It’s milk “straight from the cow” that hasn’t yet undergone pasteurization. Pasteurization doesn’t involve the introduction of any scary-sounding chemicals with long, unpronounceable names; it’s simply the process of heating up milk to destroy bacteria and viruses within. But to hear “natural health” proponents tell it, the process of destroying pathogens isn’t worth the trade-off of destroying potential good bacteria; they claim the unadulterated milk, full of bacteria both good and bad, will boost their immune systems long-term.

These ideas about “building the immune system” echo their beliefs about avoiding vaccines, where again, they believe that disease prevention is a net negative for human health. No studies support these claim, and millennia of human history make a very strong case against it.

MAHA believes that dyes in food can hurt you, as can artificial ingredients, having a bad attitude, failing to get enough sun, eating the wrong foods, eating the wrong amount, sunscreen, lack of exercise, the wrong kind of exercise; all of these things can lead to chronic illness. Diseases on the other hand, the biggest killer of human beings throughout our entire existence on Earth, are good for you. They make the immune system stronger, leaving you better off.

This may seem, logically, odd. Prior to vaccines, antibiotics and modern hygiene, half of babies did not survive childhood, largely due to infectious disease. But their belief system has an internal logic.

To MAHA, sunscreen, pasteurization and food dyes are unnatural, and therefore harmful. COVID-19, measles, the flu, RSV, and any other contagious disease you can imagine are natural, therefore not harmful. Sunlight? Natural, can’t be harmful or cause cancer. Cow’s milk? Natural, can’t really be harmful. Measles? Natural, people should catch it so they can build their immune system. You get the picture. Natural, good. Unnatural, bad.

And when people die doing these “natural” things die anyway, does that suddenly upend their world view? Well, no. Instead, they fold their worldview around these deaths. Death, too is natural, and death too, is good. Take the Texas parents who recently lost their unvaccinated 6-year-old daughter to measles, yet refused to reverse their anti-vax stance, stating “it was her time”. A death caused by something inherently natural and therefore harmless like cow’s milk, sunlight or measles, must have been caused by the inherent weakness of the body, and that too, therefore, is natural. It is the elimination of the weak through natural selection.

In other words, the future MAHA wants is a eugenic one. They dislike that there are so many elderly, chronically ill, weak, overweight and disabled people in our society. Diseases might ensure that those people were, rather than sick, dead.

Liberals act confused about the future MAHA wants; one where people die of common ailments as in the 19th century? But they misunderstand MAHA’s goals. MAHA does not want to save every life. MAHA wants to end the lives of those who can’t survive a world without vaccines, food safety, and hygiene, because MAHA believes that people exist on a spectrum of “weak” to “strong” and that they are the chosen Übermenschen who will survive without those things.

Think of RFK Jr’s strange comments about assessing the “threat” presented by SSRIs, ADHD medications, and weight loss drugs. His concern here is not the medical problem, it’s the medications, which fall into the category of “unnatural”. After his ideas about forcing depressed people to work on farms to “detox” from SSRIs went viral, anti-depressant users were quick to point out that such a project would kill people. To MAHA, killing depressed people who can’t survive without SSRIs is, again, the point. Removing disabled people from society who can’t work productively without medication is the point. That’s not a problem for them, that’s a solution.

Similarly, when MAHA imagines a world without chronic illness, it’s not because they imagine billions of dollars invested in cures for MS, Rheumatoid arthritis or Type 2 Diabetes; clearly it’s not, because their champion, RFK Jr., just cut funding across HHS to no backlash from his base. Rather, they simply imagine that without things like Red Dye #3, sunscreen, fattening fast food and pasteurization, people will stop developing these conditions. As for those who are already sick? Without vaccines, pharmaceuticals, or medical research, the remaining chronically ill will die off. It is “their time”.

MAHA seems to believe that ill health can come only from “unnatural” contaminants (meaning man-made, like sunscreen, “chemtrails” and vaccines), consumption and poor habits. Because consumption and “bad habits” are personal choices, MAHA therefore views health as a personal choice. And in turn, those who develop chronic illnesses or who die of infectious diseases are simply reaping the consequences of their poor choices.

It’s true that well-balanced meals with proper nutrition, clean water and air, and time and space to exercise can contribute to better health outcomes. It’s also true that all of the above correlate with income and access to financial resources. This is where you’ll find that, unsurprisingly, the far-right eugenic thought of MAHA intersects with the racist, classist, jingoist and fatphobic rhetoric of MAGA. It’s not just anyone that will be eliminated by the eugenics of letting diseases rip and stripping funding for social programs. It’s poor people, disabled people, trans people, Black people, indigenous people, immigrants, marginalized people of all stripes.

Of course, while marginalized people will always be more harmed by eugenic policies, it’s not true that well-off ableists will be spared. People also die of infectious diseases randomly, not because they didn’t take their Vitamin D or because they didn’t eat enough kale or because they weren’t on the Paleo diet or the all-meat diet. Anybody can become ill with measles and die; anybody can drink raw milk, get an infection, and die. There’s no special type of person who is immune to pathogens, and if MAHA got everything it wanted, chronically ill and disabled people wouldn’t cease to exist. Instead, as infectious disease flourishes, chronic illness numbers will too.

MAHA seems to believe that by simply allowing “nature” to take over, sick people will die out; you only have to look at all of human history to understand that that, before vaccines and antibiotics, people didn’t “naturally” develop super-strong immune systems making them resistant to measles, mumps and smallpox. They didn’t evolve resistance to cow milk bacteria and skin cancer. They didn’t stop getting sick as the weak died and only the strong survived. Instead, life expectancy was 45 and everyone’s teeth fell out. Many people were “sickly” and home and bed bound.

Of course, disabled people in the past were also denied basic rights that have taken decades and indeed centuries to achieve. Ugly laws targeting the poor and disabled were on the books in the US until the 1970s. Mentally and physically disabled people were kept, often chained and abused in horrific conditions, in asylums from the time of the country’s founding. The deinstutionalization movement only took off since the 1950s. The Americans with Disabilities Act wasn’t passed until 1990.

When we ask ourselves what “healthier” time MAHA is harkening back to, we can be sure they aren’t referring to a time of higher life expectancy or lower child mortality rates. But it may be that they pine for a time when disabled people were segregated from society, and people they consider “weak” died of preventable illness.

It’s worth noting that, while MAHA has quietly been building steam in the background of American political life, chronic illness has been growing at an alarming rate since 2020. But the culprit isn’t SSRIs or sunscreen. It’s COVID-19, which leads to a serious illness called Long COVID and increases your risk of developing dozens of other health problems.

Unlike the wild theories circulated on social media by MAHA moms and meat-eating misogynists, there are plenty of scientific studies that demonstrate this connection. COVID infections are leading to higher rates of cognitive problems, increasing your risk of dementia and Parkinson’s disease. It leads to autoimmune conditions including rheumatoid arthritis, lupus, vasculitis, inflammatory bowel disease, and type 1 diabetes mellitus.

Of course, SARS-COV-2 is not the only virus with post-acute effects. Just this week, the Breakthrough Prize in Life Sciences was awarded to Alberto Ascherio, who demonstrated that an Epstein-Barr infection is the key risk factor for Multiple Sclerosis (MS). In the last half-decade alone, we have made major progress toward identifying a huge piece of the chronic illness puzzle. Viruses and bacterial infections are a major progenitor of chronic illness. Imagine what a game changer that information would be in the hands of a government that actually cared about preventing and ending chronic illness.

Unfortunately, that isn’t what MAHA cares about at all. MAHA cares about their worldview: that health is a personal choice, practiced by superior people. That “clean” food and working out are the only tools needed to accomplish health- not vaccines, masks, air purifiers, or any sort of disease prevention tools whatsoever. Because disease, to MAHA, is a purifying fire that cleanses the population of the weak. And a “healthy” society isn’t a society that prevents illness; it’s a society that embraces it.

Anti-vaxxer ideas are explicitly eugenicist in ways that liberal critiques often elide. For example, liberals will often exclaim disbelievingly that anti-vaxxers are choosing to “risk their child’s life”. But an anti-vaxxer sees it another way: if the child is fit and strong, the child will survive. If the child dies, that is because the child was weak. (And of course, in their mind, since their child is “healthy”, their child is therefore not at risk). This anti-human idea has lately been integrated more broadly into mainstream thought when the topic is COVID. When ongoing deaths and disability from the virus are brought up, this same logic is employed; well, those deaths and injuries are all right, because they happened to weak people. I’m “healthy”, so I won’t get Long COVID.

I wrote previously about how mainstream media’s decision to normalize repeated COVID infections- even as it became clear that long-term disability is a common outcome of a single infection- mainstreamed anti-vaxxer ideas about viruses, immune systems and eugenics. The shared social understanding that COVID is something that “only hurts the weak” and is therefore okay, undoubtedly softened the ground for this same logic to be applied to previously vaccine-controlled viruses like measles.

But this eugenicist logic extends, of course, far beyond COVID. If your loved one doesn’t survive cancer, is that a tragedy because the government cut funding for cancer research? Or, could the argument be made that the government shouldn’t be the business of spending large sums of money trying to help a small group of people who are likely to die soon anyway- isn’t cancer just “nature’s way”? Aren’t cancer patients just, in the words of Anthony Fauci, “falling by the wayside”? Once you start employing the logic of eugenics, isn’t it hard to know where to stop?

Maybe it makes more sense to focus that money on young, healthy people. Keeping them healthy- what RFK calls preventative medicine. But he doesn’t mean preventing infectious disease. He simply means eliminating random chemicals, banning certain types of food, all while cutting regulations and boosting alternative medicine, convinced that this alone will end the scourge of cancer and chronic illness. This, despite the fact that plenty of scientific evidence shows that viral and bacterial illnesses cause a great deal of chronic illness and also contribute significantly to the development of cancers later in life.

It’s critical for people to learn the internal logic of MAHA in order to effectively organize against it, because if you are critical of anti-vaxxers while adopting some of their talking points and central concepts, you ultimately boost their world view. You may be up to date on your vaccines, but do you sneer at the idea that you could end up with Long COVID? Do you refuse to mask because you assume every person harmed by COVID is inferior to you, with your superior eating habits and commitment to the gym? Do you ignore advocates who organize for institutional mitigations like better quality indoor air, because you believe that people who die from COVID don’t really matter the way you do?

All of the above beliefs are in line with RFK Jr. and MAHA’s philosophy about health, wellness, and disease. They are all beliefs grounded in eugenics, the idea that some people are more fit and thus more suited to life. These beliefs are both anti-human and anti-science. It’s not true that feeding your kid every healthy vegetable and every vitamin will protect them from measles. Just like it’s not true that going to the gym 5 days a week will protect you from Long COVID. Disease and disability do afflict the marginalized disproportionately, but they are also random.

Societies are healthy when they work together to protect the collective, not when they individualize health and purposely push the weakest toward harm and death. MAHA fantasizes about reanimating an America that never existed; one where, once disabled people are disappeared from view and the weak die of vaccine-preventable illnesses, everyone remaining will become strong, thin, fit and naturally sunburn-resistant.

Over the past five years, we’ve already seen what happens when “the vulnerable” are left at the mercy of unmitigated disease. It doesn’t make those around them stronger while purging the population of the disabled. It makes everyone sicker, while creating more disabled people than ever before. Eliminating vaccines, ignoring disease mitigation, cutting infectious disease research, banning pharmaceuticals, and institutionalizing people will bring more of the same.