#accessibility #substack #minotaur #activism/covid #blogposts #shame #organizing #interdependence

the labyrinth beneath your feet

instead of long covid

call it a labyrinth, which you,
bull-headed in your conviction
to live and let live,
have crafted into a home.
every winding wall painted
to catch every bit of light
that wanders in.

in the absence of a world
that will have you, marvel
at the one you created:

what some might call a cage
you call a practice. you circle out
and in, and at your center
you find yourself, your own
good company.

and when they do see your face --
this mask that some
might call a portent
of all they wish to forget --
call it love.

squint at everyone above
your monstrous muzzle
so they can see you smiling
so they know

out of most everyone
in the room, you
will be the last one
to do them any harm.

after andrea gibson

I’ve been thinking about the myth of the minotaur a lot lately.

To recap the mythology: the minotaur is a bull-headed boy born to King Minos and Queen Pasiphae, the result of an elaborate punishment for King Minos from the gods.

This monstrous child, Asterius, is locked in a labyrinth beneath the city of Knossos and fed sacrificial Athenians until he is eventually slain by the epic hero of the story, Theseus.

As with most mythology, we don't have a canon text explaining the inner workings of Asterius' mind. We are left to wonder -- was he more monster, or man? Was he rendered monstrous by his birth, or through his loneliness? And what of his mother -- could even a mother love such a monster?

I am inclined to say yes -- after all, would a mother who so hated her son name him Asterius, a name which means of the stars.

When I think of Asterius, a condemned child, wandering about those endless halls, I am filled with such a deep sadness. The band Moonface executed this loneliness really beautifully in their song, Minotaur Forgiving Knossos, in which Asterius tries to forgive the city full of people above him, all doing their best to forget the monster that exists beneath their feet.

I have taught myself to dance alone.
I hear your parties and your music in the evening.
I hear your laughter and your singing creeping over the walls
So I taught myself to dance alone.

(Just as one must imagine Sisyphus happy, I must imagine Asterius dancing.)

![[the minotaur - watercolor painting - august 2025.png]]

After my third (known) COVID infection in November 2023, my existing Long COVID symptoms worsened to the point that they caused perpetual discomfort. I was dizzy, tired, my heart would race at seemingly random times, and my ability to tolerate heat became nonexistent. I can remember some of the symptoms starting to occasionally abate in March 2024 when I started using interventions recommended by my friends with POTS, though I do not have a formal POTS diagnosis. Later, I would develop daily allergic reactions that would cause constant itching all over my body. These are manageable with a daily anti-histamine, but I have been noticing the efficacy of the medication starting to lessen.

It is after that infection that I started masking and taking COVID precautions again, which had become admittedly lax since the vaccine. I had fallen into a false sense of security, lulled by the maskless world around me. It wasn't until my long COVID worsened and I started connecting with online communities struggling with the same that I really started to understand the risks this ongoing pandemic poss to me and countless others. I can't help but wonder -- if the symptoms become worse and more persistent with each passing infection, what will happen the next time I get COVID? How long will the symptoms last? What new ones will arise?

It is no wonder, then, that I feel this sad kinship to a being condemned to a life of loneliness due to circumstances beyond himself, circumstances that have rendered him unable to live among others.

I became outspoken about my experiences among my social circles and on social media, desperate to tell others about the risk. It was also an attempt to justify myself and my new array of precautions and needs, in a way. I am not trying to be unreasonable! I am not crazy! This is what is happening inside my body, and I don't want it to happen to you!

I would often be met with crickets. I became suddenly and acutely aware that, contrary to the left's commitment to paying lip service to accessibility, most people's willingness to take precautions had serious limits around their convenience.

Logically, I know that most leftists don't want at-risk people to suffer, despite their actions that do nothing to prevent said suffering.

So We Find Ourselves In The Labyrinth

I think, what it comes down to, is that our worlds as COVID cautious and non-COVID Cautious people -- both online and in real life -- are different. We occupy many of the same spaces, but we have different experiences of them. Further, the resulting outcome of long COVID means induction into the labyrinth. Having to cancel plans due to flare-ups of symptoms. Having to vaguely explain being too sick that day:

but not like, sick-sick. I just. I can't today. I'm sorry.

Spaces that were once sources of community and solidarity, supposed safe spaces, are rendered very much unsafe. Open mics, concerts, protests. I see them advertised with no mention of COVID precautions in place, and I find myself having to weigh an evening of community and joy against months of suffering. The evening always loses.

![[the minotaur by Jordi Garriga Mora.png]]
(Art by Jordi Garriga Mora)

I hear your laughter and your singing creeping over the walls.

I became starkly aware of something disability justice advocates have known for a long time -- even the most progressive communities are alright with you being excluded from the space and conversation if your needs pose too much of an inconvenience.

These days, when I make yet another post urging my community to mask, I am immediately flooded with regret. Part of it is that I don't want to be the angry activist that shames people for their choices, knowing that shame is not an effective way to go about changing minds

Another part of it is that I know and love people who don't mask, and despite the inherent lack of a very specific but very tangible safety I feel around them as a result of their choices, I still love them. I never want to be a source of shame for them.

I am not sure how to balance this with the fact that every so often a friend will come to me and tell me they're now dealing with long COVID and they're reaching out because I'm one of the only people they know who is vocal about the topic. That is part of why I often feel this desperate urgency as I wonder who among my friends might find themselves a part of this club no one wants to be in next.

In talking about this loneliness, I must express the ways I am routinely hurt and disappointed by my community, by people I love. By shining a light on it, I know I risk isolating myself further. Yet, by allowing this loneliness no light, by allowing it to simply circle in and around itself endlessly in the dark, I know that nothing can improve. I can only continue to writhe in and around my hurt. I can only continue to feel my disappointment and fear, while knowing that my friends know how I feel, leading to a strange tension that is difficult to name.

apathy is death.png

Why Most Of My Community Doesn't Mask

A while back, I used an anonymous survey to ask my Instagram followers (which are largely comprised of people I know from my local scene) why they don't mask. After months of speaking out and sharing my experiences with Long Covid, I was noticing that no one would respond to my posts about the topic openly, and I wanted to better understand what was going on.

Why Did You Stop Masking Anonymous Survey

Only one person said they truly thought masking wasn't necessary and that COVID was no longer a risk. The rest of the respondents essentially said that they know they should mask, but they just can't. Either due to sensory issues, anxiety around potential backlash, feeling self-conscious being the only one masking in a space, or a general fatigue around anything pandemic-related.

These responses are also reflective of the apologies I receive in real life from those around me who explain why they can't mask when I share my frustrations around COVID apathy.

I always smile, nod. It's okay. I understand.

Meanwhile, I have an arsenal of unspoken responses to each given reason playing in my head.

You know what's a sensory nightmare? Your body feeling like something is deeply wrong. Constant dizziness. Chronic pain.

You know what triggers anxiety? Feeling like you can't get enough air and that your heart is gonna pound out of your chest for no reason.

You can't mask if no one else in the room is? Are you unable to commit to your convictions in a way that isn't reliant on other people agreeing with you? How is that going to work when we're trying to combat a rising tide of fascism?

You don't want to go back to 2020? So many of us have no choice -- COVID never left us, so we don't get to leave COVID behind.

At the end of the day, all of the reasons pale to the possibility of inflicting suffering on others, whether knowingly or otherwise.

That said, I don't know if there is any reasoning with this avoidance, as I don't think people are operating based on logic when they don't mask despite their stated ethos around access. There is a complicated miasma of trauma around the pandemic and an inability to contend with just how much we have been let down by our government and our neighbors, leading to a continuation of suffering that we are afraid to really be present with. So we try our best not to be with it. We need to pretend everything is normal so our hearts don't break.

That is, until you have one too many infections, and you find yourself with no choice but to be with it. Every day. In your body. Gnawing at the wires of your fraying mental state as you wonder What is wrong with me? Why am I so tired? Why can't I shake this? How do I get back to feeling okay?

I know that these reasons, which mean everything in the world I live in, mean nothing in the world most people live in -- the world in which COVID is basically a bad cold these days. I also didn't think about long COVID as anything more than an abstract and unlikely possibility until it took root in my body, as I also didn't know anyone in my circles also struggling with it. And while my feeds are now inundated with wastewater updates, COVID heat maps, and obituaries of advocate after advocate who have succumbed to their ongoing symptoms or a new COVID infection, you might only encounter COVID as a topic when pesky people like me already happen to be a part of your orbit.

Ultimately, I am writing this because I don't want to keep approaching social media with my gut impulse to rage at COVID denial. I would rather show up with honesty, nuance, and understanding toward why you might not be masking right now, just as there are some things I want you to understand about the experiences of those who have Long COVID.

I am often angry, as much as I'd like not to be, and in being angry I am coming to find that anger is not a gentle friend, but it is a good one. Allow me this moment to set aside my own gentleness, in the effort of being good instead. I will share this bitter, angry truth.

Your at-risk friends are often lonely, and might feel even lonelier in your company.

It is a loneliness I have learned to live with, but it stings all the same. It lives in my bones. It haunts the halls of my veins.

While this experience has meant I've had to retreat from the spaces I once found life-giving -- concerts for my favorite local band, poetry open mics, third spaces like coffee shops -- I came to be very comfortable with solitude in these last few years, in part because it is so damn painful to feel lonely when surrounded by the people who are supposed to be your community. To feel this divide between you and everyone around you. To wonder if it's all in your head, if you're unreasonable, if your friends are annoyed with having to deal with you and your needs.

I feel it every time I put on a mask before entering a store and my friends don't. I feel it every time I have to ask that we modify our plans to be more COVID cautious. I feel it every time I have to debate seeing someone, knowing they were recently at a big event or on a flight unmasked.

I want to be clear. I love my friends, and I will continue to love them, regardless of their masking practices, regardless of how much it can hurt at times, regardless of the risk that loving them can pose to my health. This is not me sub-tweeting any group of people in my life to shame or break ties with them. In fact, they will be the first people I send this to. While I would love for them to read this and feel moved to align their actions with their stated ethos of access and inclusion, not just for me but for everyone like me, the reason I am writing and sharing this is because I know I am so far from alone in this loneliness. There are countless people like me, who may have had to retreat into the labyrinth themselves, who might not know how to share their experiences with you, the person reading this.

We Do Not Have To Be Alone in the Labyrinth

There is a beautiful inverse to this loneliness.

It's the comfort I feel around people who do mask, who care enough to take action and inconvenience themselves for the safety of others. Whether they're a stranger I see in passing and we exchange a little nod, or my loved ones who I can comfortably share a space with, knowing they have done all they can to keep me safe, and I have done the same for them.

As the number of people I know who have long COVID or are otherwise at-risk grows, so do our resources. My friends and I chipped in to purchase a PlusLife testing system together. We discuss the newest resources and treatments for long COVID. We lend each other air purifiers for events, and portable air purifiers for whenever one of us is taking a plane or bus. We notify one another when we're sick or of potential exposure and then test accordingly. We mask on car rides down to gallery openings where our friend, the artist, has been kind enough to make the event masked. (Shout out to The Universe Conspires -- check out her new exhibition in Pueblo!) Most importantly, we meet one another in the mutual understanding of our linked interdependence. In a world that is becoming increasingly difficult to trust, we trust one another with our lives in a very literal sense.

I am writing this because I want to inspire you, the person reading this, to do better by knowing the impact you can have on others, not just in the sense of passing on life-altering viral infections, but also in the comfort you have the power to provide or deny to those who are at-risk. In a world that has decided to sacrifice disabled, immunocompromised, and otherwise at-risk people to the meat grinder of a fabricated normalcy, you can be a source of safety and care. You can show the people around you that you are willing to take that extra step to ensure their safety from suffering. In doing so, you help change the norm. You help inspire others who might otherwise feel nervous masking to also take that step.

This is especially true for community organizers. You especially help create the norms for your scene. When you mask and create masked spaces, you influence the culture, and you tell everyone else in the room who is at-risk or struggling with Long COVID:

You are not alone. Though COVID is not over, I am here with you in solidarity. I take your health seriously, and I am going to do what I can to keep you safe.

Other steps you can take

If you read this far, thanks. I know this isn't an easy topic, especially for those who aren't already taking precautions. I know it can bring up feelings of shame, even when shame is not what I want for you.

I want you happy, healthy, and safe.

I want us to be able to get through this ongoing pandemic and reach a day when COVID is no longer a threat to anyone.

I want us to do the hard work of taking precautions and raising our voices about this injustice so that an end to this pandemic might one day be possible, so that one day we might leave the labyrinth and find a world that can safely hold us and our differences.

And when that day comes, I want to be by your side.

Resources for COVID Awareness