Flattened
We remember being asked a year ago to help flatten the curve. Public health officials, elected leaders, and reporters would show us graphs with ominous upward slopes. These messengers all performed the same gesture of pushing their hand downward. Everyone needed to help flatten and slow the upward surge so that infections might decrease and hospitals wouldn’t get overwhelmed. The two of us remember this well because in March 2020 we unceremoniously joined thousands of others on COVID’s rising curve.
We remember being asked a year ago to help flatten the curve. Public health officials, elected leaders, and reporters would show us graphs with ominous upward slopes. These messengers all performed the same gesture of pushing their hand downward. Everyone needed to help flatten and slow the upward surge so that infections might decrease and hospitals wouldn’t get overwhelmed. The two of us remember this well because in March 2020 we unceremoniously joined thousands of others on COVID’s rising curve.
We are writing now because we are still on it. Our lingering COVID and lack of finality long after our infection join us with at least 3 million Americans now known as COVID long haulers. In March 2021, as the vaccine rolls out and the COVID curve shifts into one of its many downward cycles, we are each marking our one-year anniversaries of surviving. This is and is not a time for celebration.
For the two of us, long hauling has meant enduring over a year of symptoms that change across the systems of our bodies. Although the two of us have gone to the hospital multiple times, we are fortunate to never have been admitted with symptoms severe enough for oxygen support or intubation. When only the most severely ill can demand precious resources, in some sense we are lucky that our symptoms don’t qualify. For Pato, these symptoms have nevertheless been brutal: neurological, gastrointestinal, and pulmonary. For Alex, ongoing, minor, and disturbing: gynecological, vascular, integumentary (skin).
No one has escaped COVID unaffected. All of us – the infected and the affected – have been changed, scared, bored — flattened. But when you’re on the curve, infected and trying to navigate COVID’s impact on your body, things can get disorienting. We need more defined routes to health. Alex was not authorized to get a test in New York in the early pandemic. She talked to doctors who were kind but not of much help in understanding COVID’s long-term impact on her body: post-menopausal bleeding, eruptions of hives, acid reflux, heartburn, elevated heart rate, night sweats. For Pato, it is the fatigue and the fog. He still can’t keep track of his doctor’s appointments. He’s constantly behind and overwhelmed at the job to which he somehow clings. He struggles with sleep. He has regular bouts of crying due to pseudobulbar affect.
We need new curves to mark COVID’s long haul as it moves into its second year.
Aren’t We There Yet?
Like everyone else, long haulers yearn to embrace our loved ones, watch movies, have a date night, survive the barrage of bills, go through a day without endlessly worrying. There is an eagerness to be anywhere other than here. Aren’t we there yet?
COVID moves so quickly, and yet pandemic time can feel so slow. The vaccines have been developed far faster than for previous novel corona and other viruses. Yet this month Pato has to take yet another breath test to measure the progress of his lungs. Some states are lifting public health measures on dangerously accelerated timelines, while Alex is still utilizing anti-histamines to recalibrate her system.
One year in, the pandemic leaves people wanting a redemptive story, an arc of resolve, an end to this jagged journey. Folks clamor for a new trip: away from the homes where we isolate, the routines of work and physical distancing, the traumas of suffering and loss.
Yet our own previous work on HIV/AIDS and ableism, as well as COVID’s ragged asymmetries, remind us that there is no easy exit. COVID does not affect everyone equally. Latinx, Black, and Indigenous communities are and will continue to be disproportionately impacted by the pandemic. Poverty restricts recovery.
America’s persistent inequities mean that this is a time when we must ask you to join us for the long haul.
Come Meet Us on the Curve
It’s hard to be sick. Yet long haulers still leverage skills, victories, and vision. We have formed peer support groups, shared remedies, conducted rigorous research, and contributed to policy. Long hauling is exhausting, difficult work, and we cannot do it alone.
There have been promising successes. COVD long haulers built online and local communities, and vibrant, active support groups like We Are Body Politic. We helped to mobilize the Long COVID Alliance alongside scientists, public health experts, and drug developers. Long haulers contributed to effectively lobbying for research dollars from the National Institute of Health.
Long haulers are making a new world, one that isn’t predicated on old, unjust ideas of normal or able, reductive notions of healthy or virus-free. Moving forward into the long haul means forging altogether new paths. Long haulers can’t and won’t be left behind.
But there is one group who cannot meet us on the curve. These people are our dead. 542,000 in the US and counting. Part of our long haul journey will be our much-needed mourning, a shared reckoning with all that we have lost as well as all that must change.
To be well requires housing and healthy food. Access to medical care without gaslighting, racism, stigma, discrimination or cost. We need COVID-specific clinics and dedicated case managers to coordinate the care teams that long haulers require to heal. We need jobs and worker protections that make room for the ups and downs of long hauling. We have to dismantle ableism and update the Americans with Disabilities Act.
In short, we need you and a shared society newly built for the long haul.
The Long Hauling series offers learning with selected activists, scholars, artists and friends––some of whom are chronically ill and disabled, some of whom have had or have COVID, all of whom are long hauling. This phrase, originally from transportation, refers to “any form of trucking where drivers are expected to spend the night away from home, as the journey is too long to be made in a day.” We use long hauling in a similar way, as a signal of extended effort and temporality. Something that can be short or quickly over is not long hauling. This is true for the transport of goods, living with chronic illness and doing political organizing over time.
Changing over a long time period brings up matters practical, political, and existential. What if something is going to take longer than expected, longer than hoped, longer than was in our plans? What new resources will be needed? How will we strategize differently? What needs to be done, now? What won’t get done? How will we acknowledge and respond to the pain, fear, uncertainty and perhaps even the pleasure of this unexpected delay or extension?
Matters of place and people are also raised: where will we sleep, eat, receive care, nurture hope? Who will help us on our extended journey? Pato and Alex have found solace, comradeship, ideas, and energy by talking together about our long hauling with COVID, bringing other cultural and political experiences to bear, writing about this, and sharing our words.
Since we first completed this piece in March, our bodily experiences of COVID have changed and our commitment to understanding the complex, varied, and meaningful durations of this pandemic has deepened. As longtime sero-negative AIDS activists living and working in the US and internationally, we are particularly eager to build out the duration and spatiality of COVID’s politics into a larger community. Hence, Long Hauling, wherein we ask ourselves and other writers: what might it mean to craft a society through compounding practices of critique and care?
* All images are by Pato Hebert, “Untitled” from the Lingering series, 2020-21.
** The first part of this essay was written in March, 2021. The final section was written in September, 2021.
