Long Hauling

Long Hauling

Long Hauling is a series of essays highlighting the stories of “long COVID” survivors and community efforts to use the lessons learned from other viruses to provide care for patients during the early months of the outbreak and into the uncertainties of late-pandemic years.

Over the time of our engagement in this series—as people infected with COVID and as longtime AIDS organizers—our work has tried to mark and understand COVID’s temporalities and flows. At the beginning of the pandemic, nothing was known about the disease, and people found each other online to learn, listen, and stay real. 

After our initial infection in March 2020, we collaboratively crafted writing about not getting better. “You’re Still Sick” was our first piece created while long hauling with COVID. This work from the summer of 2020 became 1 of 9 in this series Long Hauling. In real and evolving time, we worked together to understand, validate, and reckon with COVID’s unfolding uncertainty. 

We crafted three additional writings over COVID’s first twelve months. We strived to name and understand how to work with long hauling as a political framework for the many pandemics and crises in neo-liberal times: 

#2: “It Could be So Much Worse,” January 2021 
#3: “COVID’s Decompressing Bodies: A Cultural Critique from the Long Haul,” February 2021 
#4: “Join us for the Long Haul,” March 2021 

With the kind invitation of ArtsEverywhere.com we gathered our first year of thinking onto this beautiful site as a grounding. We then reached out to activists, artists, scholars and thinkers who could extend the specificities of the COVID long haul that we had been documenting to learn from and connect to other troubles, places, and movements: community efforts in storytelling, archiving, and harm reduction, surviving illness, and organizing steadily over long periods of time. We needed others to imagine through, within, yet also beyond the pandemic. We knew we must use everything from audio archives to zines, op-eds to theory, mutual practices of aid and cohabitation, so as to thrive over the long haul of sustained illness. 

The five essays we commissioned were more elegant, more profound, more painful, personal, and powerful then we could have imagined. They extend pandemic thinking into related fields of practice and resilience, including: 

#5: On Indigenous and local scales of time, media, and memory: “Telling Stories that Started Before Our Loss,” by Melissa Olson 
#6: On the artful, communal rendering of pain: “How Does it Hurt,” by Nishant Shah 
#7: On harm-reduction, organizing, and place: “Communities of Drug Use,” by Tamara Oyola-Santiago 
#8: On disability, family, and hope: “Mapping the Disability Trap,” by Jason DaSilva 
#9: On technologies of survival, pedagogy, and administration: “Unmute: Scattered Thoughts on Zoom Fatigue,” by Neta Alexander 

In this overview to the series, we pause to reflect. Even as ideas and needs from earlier cycles of the pandemic stay with us, we find ourselves in a yet another new moment of COVID time, with its own rhythms, troubles, and terms. 

Right now, in March 2022 as COVID begins year three, we want to think about: 

Asynchronous Lingering rooted in recalibrations, the slog, new cycles, new gradations. 

How do we recalibrate for the chronic and the ongoing? 

Disaggregating Disclosure so as to reckon with how COVID disclosure is now social, socially mediated, and culturally sanctioned as social media. 

What is the political value of this disclosure? 

Not Tellable times when press coverage about Long Hauling is heartbreaking and politically demoralizing, based in willful obfuscation, identifying people with Long COVID as hysterical buzz kills who are not letting people celebrate the pandemic’s end. 

What happens when you’re expected to suck it up and hide what’s resonant for you? 

COVID as Interspecies Existence that requires building solidarities because the Long Hauling body is no longer your body, it is a host of larger tectonics of inequities, it is a force within relations. 

Who or what else should be part of your network? 

We have been humbled, saddened, energized, moved, and educated by our work with the five authors in this series, and the larger ArtsEverywhere community. In bringing a close to the arc of this series, we offer two seeds — acts of solidarity and community-building. 

As one next step, we invite you to sign this pledge for #LongCOVIDJustice created by a coalition of organizations: 

In the third year of the global pandemic, we must end practices and policies that ignore, marginalize and deprioritize chronically-ill and disabled people.” 

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13 min Read Now

How Does it Hurt?

When the world is caught in collective pain, it is strange that we don’t know how to talk about it. In this creative and personal pain-scale, Nishant Shah names, heeds, and measures a shared language for holding pain.

Communities of Drug Use
9 min Read Now

Communities of Drug Use

What does it mean to be ‘in community’? How do we do this in the day to day and in the contexts of multiple pandemics, settler colonialism, racism, sexism, the war on drugs, economic inequity, homophobia? What does it mean to create a collective that sustains and moves to act?

Mapping the Disability Trap
10 min Read Now

Mapping the Disability Trap

When Jason DaSilva, director and disability rights activist living with multiple sclerosis, is separated from his son, he has to make a decision: stay in New York and receive the medical care he needs, or move to Texas to be the father he wants to be.

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