It Could Be So Much Worse

Pato Hebert and Alexandra Juhasz

From: Patrick Hebert

Sent: Saturday, December 12, 2020 2:29 PM
To: Alexandra Juhasz
Subject: Re: some prompts

Hi Alex,

Sorry for slow reply. School has been extremely difficult and I’m having 1-2 medical appointments daily, including rescheduled endoscopy and colonoscopy on Mon for ongoing GI challenges.

In terms of your prompts, for me, the photos I’ve been making are the embodiments of many of the questions you are asking.

What is a COVID body? Who is a COVID person? What is the value of COVID disclosure? They are less literal and textural, and very ambivalent. Is the body always human or can it be land? What do living relations and public space (parks) have to teach us about time, access, endurance, cycles, the human (and therefore dis-ease) in perspective?

I see the PPE as embodiments of care. When in touch with the ground or shrub growth they become something else, somewhere between fallen (accident) and abandoned (agency). No longer of practical use, now of environmental destruction, they slide between the titles of the two series—Disembodies and Lingering. They have many attendant feelings and states. Sadness, wonder, gratitude, concern, hope, fear, appreciation, curiosity, attentiveness, doubt, loneliness, connectedness. And as my friend Reid Gómez so astutely observed early on in the work, the land is very present. The human body (COVID or otherwise) is absented in the most obvious, representational forms but ever implied. The virus and pandemic are at once abstract and visceral, everywhere and nowhere, immediate and endless. And, of course, isolation. Ghosting. Care that is essential and not enough. The limits of the human.

I’ve attached but a few images. I continue to make more. Or maybe they, and COVID, make me. Saw gastroenterologist, neurologist and acupuncturist this week. The lingering is exhausting. 

From: Alexandra Juhasz
Sent: Saturday, December 13, 2020 2:29 PM
To: Patrick Hebert
Subject: Re: some prompts

I’m sad about all your appts, but glad you are being seen.

I get to see hives dr. at long last on Tuesday.

I’m attaching a response to and enlargement of the writing you sent to me.

In this experiment, I’ve used our email exchange as a format for socially distanced attention, respect, and learning.

Since March, our interactions over text, email, phone, Zoom, PowerPoint, and shared Word docs, have been places of ongoing comfort for me. 

I have found in you a wise and attentive ally who brings your new experiences of the body to long-learned interpretations of the body politic.

It has been startling, frustrating, and saddening to see how knowledge hard-won through AIDS activism does not simply carry over into our struggles with another virus.

I am most curious, today, to think alongside you about COVID-19 stigma.

We have both been practicing disclosure since the first weeks of the US pandemic.

And yet, each and every time I do it—come out with COVID in a Zoom room, express that I am sure that others have or have had COVID, have suffered and lost loved ones—it stays equally, or perhaps even more taboo, and yet always somehow also experienced as a relief.

At a recent event with the What Would an HIV Doula Do? collective, I expressed to those in the Zoom room that I was becoming increasingly perplexed by COVID stigma and a related lack of disclosure.

The pressure not to tell is definitive. 

The sense that I am dirty or have done something wrong is palpable.

It is clear that my words of disclosure will muddle an unstated and shared contract rooted in hygienic fear and oozing control.

But why? Where does this come from?

This is not the same as AIDS stigma, given that virus’s close connections to sex and drugs.

With COVID—while real-time reporting has made clear that the poor, the worker, the brown, the aged are suffering and dying disproportionately—we also see the most powerful contract the illness.

Fellow-Doula, Nick D’Avella suggested that COVID stigma is generated by a neo-liberal commitment to and investment in self-care and regulation.

I think this is true.

You and I, the COVID body, are asked to be ashamed of not managing properly; we must close the spread.

We are requested to repress contagion’s symptoms: its sores, fevers, fears.

And, oddly, we are also pressed to tell and show all, as part of a mystical act of warding off.

As if our revelations can hold the space for all future violations.

Why should I be ashamed of having COVID?

I caught it in early March on a train, or in a store, or at an expensive restaurant, or in my living room, or in bed with my partner. At a movie?

Maybe I didn’t catch it: I was never tested. In March, only the ill suffered this verification.

I am not ashamed of having COVID. I am an AIDS activist and viral shame’s mandate is racist, homophobic bullshit with a history of destruction, pain, and indifference I know too well to re-engage. My defiant pivot into disclosure is a podium that starts from privilege: that I “got better,” have a job, am white, like to write (with you.)

Our writing is a privilege: a public, inter-active disclosure that might be holding a place and promise for more.

Thinking with you is part of what keeps me most alive,

and yet this runs aside your enduring illness.

Your images help me see your pain, and also healing.

Your fear, and also calming.

Your isolation, and also connection.

But I’d rather you were well.

I look forward to your thoughts.

Love

Alex

From: Patrick Hebert
Sent: Tuesday, December 22, 2020 1:05 AM
To: Alexandra Juhasz
Subject: Re: some prompts

From: Patrick Hebert
Sent: Saturday, December 12, 2020 2:29 PM
To: Alexandra Juhasz
Subject: Re: some prompts

Dear Alex,

I’d rather I was well too. I wish I could undo my own ableist underpinnings therein, even as I also wish that some combination of rest, mindfulness, acupuncture, naturopathic supplements, Western pharmacology and countless care from beloveds could undo all that COVID continues to unravel in this body.

Buddhism teaches me to make room, to cultivate spaciousness for the uncertainty, discomfort and many feelings that arise on the ronacoaster.

I am reminded not to cling to outcomes like getting “well,” to not be averse to the nasty flare-ups I still experience. I practice sitting (or slumping, or stumbling, or striding—and weeping) with this COVID body in its many shifting states. I recall old urban slang for the remarkable: “That’s sick!” It makes me laugh, and heed that inversions hold open the prospect of something else arising from the here and unwanted.

Still, I wish I trusted our words and images to be enough, because thinking and feeling with you is part of what keeps me alive too. “And yet this runs aside your enduring illness,” you write. Yes. And what comes to me as I read your caring wisdom is that it also runs inside my enduring illness as well as the broader pandemic. Lingering is the name I have come to use for one of these photographic series.

I might also call it a body, a body of work. Like my (this) body, it is a series of uncertainties, a series of possibilities.

Living with COVID is not only about discomfort, frustration, impatience, yearning, or concern. There can also be enduring, healing, revelation, learning, and pleasure. But so much is disorienting and unknown. Long COVID is a dispiriting and confusing lingering. This reveals my temporal and spatial preoccupations. I have been living somewhere between the unpredictable, the possibly chronic, and an inverted now. But I am living, as fully as I can and then some.

A few weeks ago, my students gave each other a lovely prompt for their weekly writing reflection: “Has there ever been a time when you felt like a part of your body was not yours?”

I do not feel that this body is mine, in the sense of being anything I possess or control. But I also don’t feel that it is COVID’s. We now belong to each other and to something more. This is a bit like the way that we are fortunate to steward land (not own or extract or vanquish it), and perhaps even belong to a place with time and care.

I am trying to sit with the longing and belonging, the bodies and disembodiments that come with COVID. A lover once told me that he wanted to own his HIV. He meant that he didn’t want it to get the best of him, didn’t want being poz to be the primary determinant of his life. This was in the mid-late 1990s, and I think he also meant that he did not want to die.

I often think about his agency and resolve, even as I desire no ownership over COVID. When I walk the park and pay attention to the things that can be found there, the land helps me to feel connected to another kind of enduring, seasonal cycles and geologic time, things much larger than this moment. And then the PPE bring me back. Masks, soil, shimmering light, a COVID body.

Where does the COVID body belong? What is it that COVID undoes? What is undue on this never-ending timeline of lingering? I want vaccines and relief packages and universal healthcare. These political and structural necessities are vital. Yet I have learned to stop grasping at I will be healthier if, things will be different when, we will be better because …

COVID feels like an endless sky of uncertainty. Perhaps this is the COVID body. In the parlance of the day, our bodies got receipts. Our bodies are receipts.

Of course, there is nothing uncertain about 318,000 COVID deaths in the United States alone. Any talk of the COVID body must contend with these COVID bodies. Our dead, disproportionately brown, Black, Indigenous, elderly, poor. Devastating. Yet we don’t all die. 76.8 million people are infected worldwide, and it is estimated that at least 10% of us are COVID long haulers. How will we get ready for a few more years or a decade or generation or lifetime of the recovering COVID body? Are we ready?

We cannot get there, without being here.

A colleague recently commented on what she sees as my tenacity and grace. I told her that I don’t feel that way at all. I was tired that day. I was asked how I’m doing while on camera in a 1:1 breakout room. I could barely stop from crying in the face of the question, my condition, and my utter exhaustion. My not crying was not about tenacity or grace. It felt more banal, an effort to simply stay on (the) call, manage the basics.

If I expressed the fuller truth, if I cried, all those frightened non-COVID bodies might collapse under the details, our density and duration, the intensity and the agony. They just want to be reassured. But some days I don’t have any reassurance to offer. Only resilience.

I am not dead. I am profoundly uncertain. I have moments of hope amid deep ambivalence. I am curious. I have no idea what to prioritize, or even when or how to return this message. Sometimes I don’t give a damn about anything. Whole hours disappear and I have no idea why or what has happened.

The fog.

When I disclose, as I often do in Zoomed group settings, I find that the uninfected sit back and go quiet or offer murmured condolences, while the infected lean forward into their own imminent disclosures and a desire to connect. We survivors are often restrained and weary, yet also stretching and eager. It seems many haven’t had the space to reveal their experiences with COVID. They ask if we can talk 1:1, later, compare notes, exchange strategies and resources. There is a sharing, a solidarity, that pushes against the loneliness, hurt, and angst. It can help to know someone else is going through something similar. To be believed from jump. To meet someone who’s had it longer than you and is still going. To not have to translate.

The stigma you write about is real, the shunning that so many people experience, the shame. The “How did you catch it …” tinged with “How could you?” The virus’ threat and people’s fears converge in our infected flesh, a flesh that to others feels neither warm nor cold because it is mediated by the screen. COVID’s constant disembodiment cum abstraction.

I have been thinking a lot about the paradox of the screen as a form of care. If we cannot gather or travel or touch as we’d like, the screen becomes as important as masks, and just as normalized yet alienating.

I’m trying to understand the isolation that is endemic to COVID, and how little the needs of the infected are foregrounded when media and public health talk of quarantine. Isolation and control are the structure of the plot and the protocols—protection of the uninfected—not consideration, connection, and care of the recovering. No wonder stigma is produced on endless loops. We hear far too little about the nuances of harm reduction, the dangers of shaming and fear as strategies of safety.

The voices of the coronavirus that do get featured too often bounce between the tropes of pitiful, lucky, or heroic. Mostly we are seen as vectors of infection and a risk to others, not agents of and partners in change. And for the long-haulers, we disrupt the dichotomy of dead or recovered, sick or well, risky or safe.

You and I often talk about people’s voracious fascination with the parading of symptoms. Perhaps this cataloguing animates in part because it makes COVID more real. The detailing or worrying or reciting through the screen brings the “it” that is COVID back into the body. But I think this is also part of why stigma persists. People’s fear and collective suffering are brought to bear on the individual body. The COVID body. We don’t see or experience people infected with COVID spending time and space with one another. Nary a long hauler march, or even a small gathering. Isolation. Beyond the specter of the ER’s triage is the mirage of long hauling.

If I can stigmatize that body—over there, on the other side of the screen—then COVID can’t be me, and I have no accountability or reciprocity, just the Corona Games of survival, la COVIDa loca.

Are narcissism, stigma and greed the COVID body? Isolation, worry, distance? Diligence and fierceness, instability and porosity, beauty and persistence? The body of best intentions. The body as shared aerosol. The body of amalgamations. The body as plural, ecological, lyrical, vulnerable, incidental, magical, speculative, tentative, developmental. The COVID body of becoming.

My neurologist offered me a new medicine that used to be prescribed in large doses in psychiatric treatments but was later discontinued. It’s now being used in the COVID care clinic as part of an experimental approach to headaches, insomnia, and brain fog. Check, check, check. For some patients it seems to help, for reasons that aren’t yet understood. I’ve only been on it a week. We’ve doubled my dosage and will continue to add 10 mg in exploratory stages. I can’t yet tell if it’s working.

The neurologist also mentioned another med that can help with my bouts of crying. But it can conflict with and counteract the first med so she says we should hold off for now.

Then she reminded me that anxiety and depression are very common in COVID long haulers. This, too, is the COVID body. Anxious and depressed. Not only, but typically. She asked if I have a therapist.

For months I’ve had a GI surgery scheduled for tomorrow. But it’s just been postponed due to the COVID surge that has left Southern California’s ICU capacity hovering dangerously close to 0%. All non-essential surgeries cancelled. Los Angeles has become COVID’s epicenter, a cauldron of accelerating suffering. The gastroenterologist counters the surgeon, says that maybe I don’t need the surgery after all, that perhaps my guts are just experiencing the lingering effects of COVID and things will improve with time. “You’re doing all the right things. Keep exercising and adjusting your diet, and let’s see how things are in a few more months.” Inflammation. Confusion. Lower abdominal rumbles playing hide-and-seek.

These, too, are the COVID body, as are the blood draws and endless bills, the future appointments with the pulmonologist and acupuncturist. Follow-ups.

How are your rashes?

Un abrazo,

Pato

To: Patrick Hebert
Sent: Tuesday, December 28, 2020 1:05 AM
From: Alexandra Juhasz
Subject: Re: The COVID Body poem-list and other notes

Dear Pato:

Can you believe it? My hives appointment has been cancelled and rescheduled yet again.

I realize I’ve had these grotesque, flowering, burning eruptions of skin, everywhere multiplying, since summer. So macho am I, that for months I simply overlooked them, naming them as bug bites. Then, over more months: I endured. They will and do pass.

Perhaps they—like the after-menopause bleeding that also began this summer, which I’ve monitored and treated with sonograms, pelvic exams, a DNC in a surgery ward, visits to a gynecological oncologist, hormones, late-life maxi-pads, and ever more COVID-aware follow-up visits—are an enduring symptom of the undiagnosed COVID that no one, let alone me, understands.

And yet, it could be so much worse. 

I endure these real indignities, threats, symptoms in the small gratitude and niggling embarrassment of my privilege: aware that for others, for you, for the dead, for the intubated, for the poor, for the families, for the uninsured, my COVID body is an easy price to pay.

I am learning that this calculus—it could be so much worse—is the logic and lifeblood of the sick and shameful COVID body. Words as a talisman; as a way of not having to see the self; as a method to honor and acknowledge the other; as a tactic, when so few are available, to name the structural imbalances of race, class, health, and education that make our distinct COVID bodies.

But as your work and words reminds me: the earth, time enduring, the trees, the sky, the colors and textures of pleasure and solace, all meet us through great imbalances. Their unequal scales create horizons by which humans can also make sense of our pain, our place, our commitments—by embracing them.

And as crazy as this dissymmetry is: I am so appreciative each time you ask after my lowly, silly hives; in turn, I ask back about your bones, surgeries, brain. I learn with you how to hold the particularities of pain, the possibilities of power, the certainties of oppression, and the joys of life, in one shared unequal embrace; a different logic for COVID bodies; one I hope we can pursue as a COVID politics, also unfolding. 

with love, alex


NOTE: Second to last image is by Alexandra Juhasz, 2021. All other images are by Pato Hebert, from the Lingering and Disembodies series, 2020.


Pato Hebert is an artist, teacher, and organizer. His work explores the aesthetics, ethics, and poetics of interconnectedness. He has exhibited in galleries, museums, and community spaces around the world. He is currently working on projects about nuclear energy, American football and resistance to colonialism. He has also worked in grassroots HIV prevention initiatives with queer communities of color since 1994. He serves as Chair of the Department of Art and Public Policy at Tisch School of the Arts, New York University. You can follow him on Instagram @volandito.

Dr. Alexandra Juhasz is Distinguished Professor of Film at Brooklyn College, CUNY. Author and/or editor since 1995 of scholarly books on activist media in light of AIDS, black lesbian and queer representation, feminism, and digital culture, she also makes videotapes on feminist issues from AIDS to teen pregnancy as well as producing the fake documentaries The Watermelon Woman (Cheryl Dunye, 1997) and The Owls (Cheryl Dunye, 2010). Her current work is on and about feminist internet culture and AIDS with two recent books: AIDS and the Distribution of Crises, co-edited with Jih-Fei Cheng and Nishant Shahani (Duke University Press, 2020), and We Are Having This Conversation Now: The Times of AIDS Cultural Production, with Ted Kerr (forthcoming from Duke University Press in 2021).

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