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Long COVID-We Are Here

On March 5, 2020 I woke up to a tickle in my throat. This scratchy feeling turned into a sore throat with a cough, body aches, chills, and fatigue. I had contracted COVID-19 – New York, first wave.


Other than seasonal allergies, I had no prior medical conditions. I’m generally quite fit and have been an athlete throughout my adult life. I am a reasonably happy person - optimistic with a good sense of humor. I’m in a healthy, committed relationship. I’m clever enough to have an advanced degree. I practice yoga. I meditate. I don’t eat mammals. I juice. Nevertheless, I became very sick; experienced a cytokine storm at 3 weeks; and, remained acutely ill with an abundance of serious COVID symptoms for three full months. Most of the acute symptoms finally resolved in June but that was just the beginning of my story.


I began to exercise to regain my pre-infection level of fitness, doing yoga and running a two-mile course in my neighborhood. Similarly, I began to add work back into my schedule. For two months I continued under the assumption that I was on a steady recovery trajectory. But then, near the end of August, I was hit again, not with a reinfection but with the long tail of COVID – the first of several ‘relapses’ or ‘flairs’ that are more commonly known as ‘long-hauler’ symptoms.


To be sick is never easy. To be sick without knowing what one’s illness is, how it will progress or whether it will ever truly resolve, is terrifying.


What is long-hauler syndrome? Are the symptoms temporary or will they last forever? Are the relapses cumulative? Degenerative? What are the therapeutics that facilitate healing? Is there clinical information or medical care to tap into? What is happening to me?

So many questions but hardly an answer to be found.


What is known is that there are millions of us globally – long-haulers who are experiencing an array of disabling symptoms; and, there is little to nothing in the way of comprehensive research or treatment strategies to draw upon. I know that the complete dearth of resources and the continuous dismissal of individuals (especially women) seeking help, is heartbreaking.


Thus, Relational Space is putting forward an Open Call. We (https://www.Relational-Space.org) are asking for scientific and artistic expertise to come together. This is a call to action for the needs of Long-Haulers. We are extending an invitation for partners and volunteers to join us in forging this initiative as well.



Long COVID - We Are Here is a fearless exploration into the long-hauler experience. It aims to raise awareness about the impact of this disabling post-viral epidemic; open doors for a research/medical community already strained by the COVID-19 pandemic; compel the establishment of an international, funded Long COVID research agenda; and, urge widespread physician training related to COVID long-haul syndrome.

Globally more than 60 million people have been confirmed to have been infected with COVID-19 – more than 12 million in the U.S. alone. Ten to fifteen percent of people who contract the virus will experience enduring symptoms - meaning millions of people are long-haulers already, suffering from puzzling symptoms that affect the entire body. Long-COVID constitutes an epidemic by itself.

The long-term effects of COVID-19 are insidious and far-reaching. Long-haulers endure crushing, sustained symptoms ranging from extreme fatigue, dizziness and brain fog to neurologic, GI, cardiac, and/or cardiovascular distress. Nonetheless, some doctors routinely dismiss patient concerns as emotional problems such as depression or anxiety, and fail to provide adequate medical support. Further, the medical profession, as it stands, is comprised of highly specialized providers (e.g. allergists, cardiologists etc.) so treatment decisions are made within these narrow specialties. But the enduring impact of COVID-19 appears to be both systemic (i.e. impacting multiple organs) and idiosyncratic, according to each person’s unique physical response.

Further, research into long-COVID is sparse and underfunded. The impact of enduring symptomatology will have broad social impact on our health-care system and society as a whole; however, we have yet to initiate comprehensive, international research campaigns related to Long-COVID able to explore demographics, symptomatology or prognosis. Who are the long-haulers? What is happening within their bodies? What is their long-term prognosis? Pew Research Center (Oct, 2020) reported that we have no substantial data on the number of long-haulers or any detailed information like age, gender, medical histories or course of illness nor do we know if-or-when these symptoms might resolve. This leaves more than 7 million people to fend for themselves with what is a terrifying, life-altering chronic illness.

The paucity of research regarding long-COVID; the dearth of trained providers, treatment resources and holistic strategies; and the frequent dismissal of individuals seeking medical care is unconscionable. What is needed is a well-funded comprehensive research campaign that translates into evidenced-based strategies; an international clearinghouse of empirically-based articles and treatment resources; and, physician training so that Long-Haulers receive individualized, coordinated care across specialties with diagnoses that are covered by insurance.

Process

Relational Space, is bringing scientists and artists together to collaborate and co-create a virtual installation that raises awareness about the long-hauler experience and stimulates meaningful knowledge exchange regarding the deficiencies within and critical needs of this community. For this Open Call we invite artists, scientists and especially anyone affected by Long COVID to submit work that reflects and illuminates the current crisis and the longer-term impact of living with the COVID-19 long-hauler experience.

What is the experience of long-haulers with post-COVID syndrome? How does it feel to be chronically ill without adequate research or medical resources? What would be the impact of increased awareness, research, medical care and hope? How can we facilitate immediate responsiveness for this neglected population?

Cross-pollination quickens creativity and innovation. Relational Space brings scientist and artists together to collaborate around powerful data-driven narratives for knowledge exchange, new knowledge creation and to co-create immersive installations able to inspire and mobilize our global community. Scholarly papers and art works (or developed ideas for creating those works) will be selected based on response to the Long-COVID – We Are Here narrative. These selections will form the foundation for co-designing the installation.

The online exhibition will take place April 29-May 30, 2021 and will be promoted through social media including Facebook, Instagram, Twitter and others. Submission instructions for Long-COVID – We Are Here are available here. This installation will be virtual – therefore, while all mediums of art are welcome, artworks and project ideas that translate well into a virtual installation will take precedence. We encourage and welcome a variety of media and formats including, video, sound, performance, socially engaged works and other new media.

The chosen interdisciplinary scientists and multi-sensory artists will meet as a team in private, virtual collaborative sessions. They will blend their respective expertise in three 90-minute facilitated sessions via videoconferencing with an asynchronous platform available for between meeting communication. All participants will be equal and active partners in the exhibition’s co-creation. The resulting installation will be live-streamed and recorded.


Please join us in this endeavor and pass the word along: Long COVID – We Are Here.

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