Three LA-based Covid-19 long-haulers talk disability justice & grief
A conversation with Karla Monterroso, Pato Hebert, and Fi Lowenstein
I met Karla Monterroso and Pato Hebert after the public health crisis of Long COVID brought us together. All three of us contracted Covid-19 in the spring of 2020, when the first cases were recorded in the United States. All three of us utilized the Body Politic Covid-19 Support Group I co-founded in 2020, when we went on to develop long-term symptoms. All three of us still live with some variation of the chronic illness, known as Long COVID.
In the years that have followed, our once-online friendships have evolved as we’ve been able to spend time together in Los Angeles—a place all three of consider home. In January, we found ourselves once again isolated from our in-person communities, as LA battles a public health crisis. We convened on a video call to check in, share thoughts, and begin to process what we’d been experiencing.
Fi Lowenstein: Thank you both for being here with me. Would you each briefly introduce yourselves?
Karla Monterosso: My name is Karla Monterroso, and I am a multiracial, muticultural institutional advocate, as well as a five-year Long COVID patient as of March 2025.
Pato Hebert: My name is Pato Hebert. I split time between Los Angeles and New York. I’m an artist and a teacher and—as I sometimes say—a low-key organizer, because I do’t organize as much as I used to when I was an HIV organizer working with queer communities of color. But, I’m still very committed to organizing and engaging when I can—particularly through communities of people living with Long COVID. That’s, in part, what brought me to this conversation.
FL: To start, I wonder if we might each take a moment to describe where we are, and what we are feeling physically and emotionally.
PH: I am in La La. I am where Little Central America meets Historic Filipinotown meets Ktown. I, fortunately didn't have a smoke-filled apartment, and I never lost power, so I've been able to run a filter that I got back in my first year of being sick with COVID. I'm so grateful that I have that filter, and that I've had power to be able to run it. So, I'm still here. Like all of us, I know a lot of people who are in all kinds of layers of losing everything.
FL: How are you feeling physically and emotionally?
PH: Not great. I think I was in a crash,* because I went really hard all year, and had set aside precisely last week, to start to decompress and do very little—and then the fires came. Despite [the air purifier], my eyes are constantly itching. My throat is really sore, and my lungs are not happy. I've had unbelievable amounts of fatigue—I guess it's not unbelievable at all.
*note: “crash” is a common word we use to describe a symptom flare
I feel really fortunate and also really smashed and trying to—as I've done for five years—care for self and a self that's not singular; it's connected to all of you and all the people in my life. Those boundaries feel really confusing right now, and also really uplifting, because so many people are checking in with me. I feel full of both deep gratitude that things aren't much worse in this body and in this home, and also super overwhelmed. Like, I want off this ride!
FL: Karla, what about you?
KM: I woke up this morning and had energy for the first time in a week, and I felt a lot of gratitude for the supports in my life—like, that I can drive to my partner’s house in an emergency. But, I feel like the last week has been a roller coaster of emotion. I had to make a tradeoff between possibly staying in this house where there is smoke—my lungs were hurting after ten minutes of it, maybe less—and getting on a freeway in 50 to 100 mile per hour winds. It’s an impossible choice, but you make it. I decided to leave, which I think was the smartest thing for me. When I got out of the car, I saw an entire tree get pulled out of its roots on the street and fly. I was like, “Ooh, little planet, I know you are angry. You have every right.”
I think I was in shock for the first two days. I got to my partner’s house, and I had three or four asthma attacks that night, and threw up several times just from the smoke inhalation. The next day was just pain. Today, I feel like I woke up out of a fog, and now I understand what I went through.
That has been balanced with watching people this week be fucking amazing—Mask Bloc showing up, and us having infrastructure in that way. For everything the government did not provide, we provided for each other.
FL: I relate to some of the things you said—the nervous system roller coaster of it all. I was in a Long COVID crash at the beginning of the year, which I felt like I was maybe just starting to come out of the day the fires started. I lost power a couple of times that night, but I was mostly able to keep my air purifiers running. But, even with two air purifiers going, I could not sleep because I live in an old, drafty apartment and my nose, throat, and chest were burning from the smoke.
The next morning, AQI was 440 in my area, and I realized I need to get out of here. I think if I’d been in a more stable physical state when it started, I might have felt like I could have withstood it. But, I just felt like this is the last thing I can handle. So, I managed to get to the desert for a couple of nights, but I couldn’t afford to stay longer. So, I came back through LA, found a free studio in Santa Barbara, and then managed somehow to drive myself from LA to Santa Barbara. I drove past both fires that day—Eaton on my way in from the desert, and the Palisades fire on the way north. While driving, I just kept saying to myself, keep your eyes open, because they were stinging from the smoke and I was so tired. I just ate my first meal of 2025 a couple of days ago.
KM: Me too. It’s so hard to explain to people what it means when my autonomic functions are not working—like, I can’t digest things.
FL: So true. You mentioned your doctor had recommended some new care routines in light of the fires. Are you comfortable sharing those?
KM: Absolutely. My lungs had gotten a bit weak, so they put me on a five day course of prednisone to help build them back up. They gave me anti-nausea meds, because all of the smoke has really impacted me. There were about fifteen other medications I don’t remember, including a course of antibiotics for the worsening [sinus] infection that came from the smoke. Today was my first good day, but I also know if I take that too far, I will not have another good day. So, I only took two meetings today. But, I’m a small business owner, so if I don’t work, there’s no money. You’re making tradeoffs.
FL: Pato, are you managing to pace at all?
PH: I am pacing and gracing, meaning giving myself a little more room than I might have eight years ago. It’s hard to see that, because I feel completely overwhelmed. Whatever I do or don’t do feels inadequate to this body’s needs, to my collective body’s needs, to the moment. I couldn’t stay on top of the work, even if I tried. But, unlike you, Karla, I have an institutional job. Unlike both of you, I’ve had the benefit of that since before the pandemic, so I was never at grave risk of losing my insurance or my paycheck—which is itself a structural kind of pacing, although there’s a ton of ableism I’ve had to navigate, in doing that job. That, in turn, left me some resources that I had set aside in a 15 month arc to unplug, decompress, pamper, and self-care. It was exactly this week of the fire when that process was needed. This crisis is completely swamping my sense that I can actually come to a healthy place of sustainable calm. So I have to not run that game on myself, and just have grace with the hot mess of it all—pun intended.
KM: In addition to that, there is no pacing through heartbreak. I’m really heartbroken. I was really intentional when I moved to the Northeast Pasadena Altadena area, because this was the community I want to be around, and so much of that is gone. I know that a lot of people are working really hard to make sure that it can be rebuilt, and I’m doing my own efforts to make sure that there’s fundraising for the Black and Latine families in that area, and for mutual aid. But, they sent all the trucks to the Palisades knowing how much danger we were in everywhere, and then it took the time it takes to get from the Palisades to get back to the east side to get us help. That feels like a deep violation.
That happens because we are a multi-class neighborhood with people of color. This is how the theft of what we create happens. I’ve been processing that. My experience of heartbreak as a human has been that if you don’t really feel those things and move through them, they become this coating around your heart for the way that you interact in the world. So, I’m trying to be really intentional to let myself be mad, and sad, and disappointed, and feel the sense of abandonment from those systems.
Where I really lost it was understanding that some of the first people to die were disabled, and no one came for them—
PH: And, were caring for other disabled people! In one of the only places where it was possible to find home over the decades of racial segregation, violence, and redlining! I think the three of us are renters, and though I’m grateful for the conversations about ownership in Altadena, I don’t think a lot of non-Angelenos understand the scale of precarity. I mean there’s already 70,000 Angelenos on the streets with no stable shelter, and tents blown everywhere in the winds. Now on top of that, all the renters who there is going to be no easy insurance claim for. The scale of this going forward is really immense, and I appreciate you sharing the way you are, Karla.
FL: It’s a very intense grief, and you’re right that grief doesn’t pace, grief doesn’t take a break when you need it. Everything you two are talking about is also making me think about the people who aren’t being given a break from work, and the employers who have been minimizing this disaster. I know we’re all familiar with that denial around a catastrophic event. I’m so worried about all of the people that are going to develop long-term health issues. I’m so worried about all of the people who have health conditions right now, who are experiencing this in such a heightened way. There wasn’t a lot of news coverage of that initially…
KM: It took social media pushback. I wrote this Medium post about understanding that my house couldn’t protect me. It was built in 1924 and is very drafty. As a country, we’re living in a similar kind of house. It does not have the structure [we need], and we keep trying to fix it by putting tape on windows that need to be restructured. The only response we have to every broken system is more police, please! The part that bothers me is that there was no plan for this. There was two years of water that gave us vegetation, and we knew it was a tinderbox.
FL: You talk in that post about how the fire felt familiar, having been part of what we often call the “first wave” of Covid-19 long-haulers. I similarly felt that parallel. There’s the abandonment, there’s the acute crisis, then there’s the feeling of what comes next. I did also feel some striking similarities to 9/11, having been a child in New York City at that time, and growing up in the aftermath of that public health crisis. These echoes of past trauma are so complex, because at times it has given me an odd sense of calm or resilience—like, I know what to do, I know what comes next. At other times, there’s a heightened sense of panic—like, oh fuck, another mass disabling event. I know what comes next.
KM: That feeling—I know what comes next—is the most disconcerting part, because so many people around you don’t actually know what comes next and think they do.
FL: Pato, have you also felt the parallels to the early days of the Covid-19 pandemic?
PH: I do have more tools and more community than ever, and I do feel super traumatized. Early in the Covid-19 pandemic, I tried to think of it in a centuries long arc, which is to say the carnage of disease wrought in European colonialism in the Americas—trying to draw strength from what it means that we were almost wiped out, but also that people have survived and endured. Covid-19 is not the same thing, so I don’t want to conflate those, but I was trying to understand with some organizers and theorists who hold the history of the region what the lessons are ancestrally that can give us courage.
What I felt in my body over the last ten days is what I felt in the first six months of 2020, which is that if Karla had a fire next door and your home was full of smoke, or Fi got cancer, we could mobilize around you. But, when all of us are dealing with all of that at once, at scale, the systems of care are so inundated. This makes our way of showing up for each other that much more remarkable, and badass, and also exhausting.
When you ask, are you drawing on these lessons as resilience or you do feel traumatized, I’m like, yes.
KM: The parts that give me the little Covid-19 PTSD that I have to pull myself back from is that the hurt in my lungs is so similar to the acute days [of my initial Covid-19 infection]. That feeling that I’m not safe anywhere, especially in my body, is a feeling that I’ve had to navigate—followed by the survivor’s guilt around it. Then, there’s a part of me that’s like, yeah this happened, and you knew to power down. You are pacing appropriately. This is not you in 2020. It’s a journey to untie production to value. I’m proud I no longer have the feeling that I’m a terrible person for not doing things.
FL: It’s interesting because I’m seeing some of this language mirrored in more mainstream messaging from organizers in LA right now—the idea that we need to pace ourselves in responding to this crisis, that it’s a marathon, not a sprint. Are you seeing disability justice language infused into the larger organizing efforts in LA right now?
KM: I’m kind of of two minds on that. One, I can see how our language has—through osmosis—permeated some places. We’ve said some things enough, even without a communications campaign, that some of that language is getting picked up and repurposed in certain ways. In other ways, it’s like starting from scratch all over again. It’s so bewildering. In my fantasy world, we learned lessons from the pandemic. We would have had a whole new force of community health workers, and changed technical infrastructure to be more accessible to people. All of that work would have made this week still heartbreaking, but we would have had so much more of what we needed.
PH: Yes, and I think that these futures are also here. They’re just not at scale, and they’re opposed and they are imperiled. I wish we had learned more of the lessons from Katrina. I think what Gaza continues to teach us about organizing—that we’re all interconnected—is encouraging. I know from HIV work not to get stuck in deficit models, nor in healing models. There is danger in those two ableist notions. Rather, I try to live vibrantly and dynamically, while also pacing.
I’ve been thinking a lot about nervous systems and collective nervous systems, and I feel like [asking], when will we start loving our land and water as disabled planet—not something that needs to get back to normal or be fixed? How do we keep cultivating disability justice to the level of all our relations, and this planet itself?
KM: It’s so funny you say that, Pato, because I’ve been thinking so much about a communal immune system, and what it means as a person with autoimmune disease—where your immune system as both a necessity and a mutineer that can be overreactive. I’m thinking about punishment versus healing, because it’s happening within movements. We need to remember the enemy right now is the people that are spending significant portions of California’s water supply for people to write cute emails using AI. The gift and learning that I’d want for all of us is to understand what it’s going to take for us to listen and heal, rather than what is going to always be the easiest thing to do—which is dominate and punish.