blue disposable face mask on the ground

The Pandemic is Over (but, really…is it?)

Blogs / By
Vaccines are up, infections are down and masks are coming off. Huzzah! Of course, we want everything to be okay. The pandemic has been traumatic. It has impacted us all deeply. As a global society we are bored of being quarantined, lonely for lost companionship and each of us are processing grief, from the loss of normalcy to the death of loved ones from COVID-19. To finally come out of homes and reconnect with friends and family feels incredible.
But the pandemic is not over.
COVID-19 is still highly active, here at home and around the world. Those who have not been vaccinated remain extremely vulnerable. COVID-19 continues to be spread from person to person through respiratory droplets or aerosols – this has not changed. What has changed is that now in our midst are variants that are virulent and highly transmissible; and, we will see more variants before it’s all over. As reported in the Atlantic, “In the U.S., unvaccinated people might be less likely to encounter someone infectious. But on each such encounter, their odds of catching COVID-19 are now greater than they were last year”. At this time, due to vaccine skepticism, partisan politics and concerns about employment and/or immigration status, only about half of American citizens have received a first dose of the vaccine. Further, the majority of children remain unvaccinated. While children are less likely to experience severe infections, they can be infected. In the U.S. more than 3.5 million children have tested positive, making up about 13% of cases.
At this time, children represent a growing share of new COVID-19 cases. And, children can get very sick from the virus. About 300 children have died from COVID-19 and close to 15,000 have been hospitalized. Economics, complacency and a desire to return to ‘normal’ are driving decisions to lift mask mandates for vaccinated individuals in indoor spaces. But, leaving the responsibility of masking to the individual may be short-sighted. Masks protect not only the wearer but also the community, especially vulnerable individuals such as children and those who are immunocompromised. There is no way to know whether a person who is mask-less is fully vaccinated or choosing to forego their mask for another reason.

 

There is another group for whom the pandemic is not over. For individuals with Long COVID, the pandemic has hit especially hard. COVID infections worldwide have surpassed 170 million. Thirty per cent of all people who become infected with COVID-19 (that’s 1 in 3) experience lingering and debilitating symptoms. The severity of the original COVID symptoms does not factor into the likelihood of developing Long COVID – people who are completely asymptomatic develop long COVID; so do children.
Millions of people are suffering with isolating, debilitating and frightening Long COVID symptoms. Many of those who were hit during COVID’s first wave have been sick for more than a year. Surveys of Long COVID patients have identified up to 98 different symptoms including, extreme fatigue, POTS, dysautonomia, muscle/joint pain, insomnia, rashes (MCAS), chest pain and pericarditis, anosmia and migraines.
Long COVID constitutes an epidemic unto itself. There should be an outcry. Unfortunately, little is known about long COVID and the syndrome remains off the radar for most people. Long-Haulers are not counted by any government in any consistent way. This lack of diligence means there has been no determination of prevalence, cause, course of illness or outcome. It is almost impossible to find trained providers or treatment. The plight of Long-Haulers is significantly worsened by the absence of research; the unavailability of therapeutics; and, the lack of visibility and empathy for those who are suffering. Physicians are often quick to attribute the long-term impact of COVID-19 to psychological factors such as anxiety, rather than to the latent effects of a pathogen still causing harm somewhere in the body. The damage that medical gaslighting inflicts is not trivial. To be told by a medical professional that an incapacitating illness is all in ones head is devastating. Rather than receiving support and treatment, patients must absorb this unnecessary trauma. The resultant self-doubt is maddening. It creates confusion and hopelessness that significantly encumbers recovery.
Relational Space is committed to artistic activism. So, when I became sick with COVID-19 in March of 2020 and subsequently developed Long COVID, it was an instinctive decision to create an exhibition that would bring attention to this syndrome and champion change. Of course, the lockdown meant that the immersive installation would need to be virtual adding a new challenge for the participants.
The vision of Relational Space is to to create new knowledge, curate immersive installations and build a more just and sustainable world, inspired by art and transformed through truth.
The stories we tell are important – after all, social change can occur when as little as twenty-five per cent of the population adopt the position. Starting with evidence-based narratives, artists and scientists are able to blend knowledge and skills sets in facilitated sessions in order to curate compelling, immersive exhibitions able to cultivate empathy, promote transformational learning and bring about positive social action.
An open call yielded an incredible lineup of accomplished artists and scientists (see Participant List at end of post). During February and March of 2021 these twelve talented individuals met in three, 90-minute, facilitated virtual sessions. A third of the participants were struggling with Long COVID and one participant has endured ME/CFS for 14 years.

 

The creativity and vision of the participants was evident from the beginning. The project was undertaken with compassionate focus, agile thinking and a enduring spirit of activism. The 3 sessions were dynamic and collaborative, yielding deft insights and innovative design. The diversity within the group was approached enthusiastically. It enhanced the synergetic co-creation and cultivated a virtual, immersive and co-curated exhibition – Long COVID: We Are Here!

https://www.LongCOVIDWeAreHere.com Elements provided by each participant were blended to create the final production, made virtual by the expertise of Sam Baumel.

 

Long COVID – We Are Here! is a fearless exploration into the long-haul experience aiming to: 1-Raise awareness; 2-Compel an international, funded research agenda; 3-Advocate for a global repository of open access articles, resources, therapeutics & treatment strategies; 4-Urge widespread physician training and patient support. Further, this Long COVID: We Are Here! exhibition unites in solidarity with other debilitating and frequently dismissed syndromes such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for increased visibility and support.

 

To see the exhibition, go to:   

ttps://www.Relational-Space.org


or link directly: 

https://www.LongCOVIDWeAreHere.com


 So, is the pandemic over? Well, certainly some things are better for some people. Many countries are reporting fewer new COVID-19 infections; however, cases have increased in 65 countries. Vaccine disparity is significant. Only 1% of the more than 1 billion vaccines injected worldwide have been administered in Africa. The same issues are being seen in Latin America and the Caribbean. Moreover, 45 percent of vaccine doses that have been administered to date have gone to just 16 percent of the world’s population. The truth is that high-income countries own more than half of all global doses purchased, enough to cover more than twice their adult populations.

As a wealthy country, the U.S. has been somewhat successful in vaccinating itself out of the pandemic. But the virus has not gone away. The virus may eventually morph into an endemic source of disease that becomes seasonal, like the flu. Immune system training may evolve COVID-19 into infections that are equivalent to the seasonal cold; but, we just don’t know. This is not influenza, it is a novel coronavirus with ever emerging variants. We remain in the dark about what the virus is capable of in terms of its mutations and how the long-term effect will unfold.
Despite dwindling case numbers and deaths in the U.S., those who are unvaccinated and immunocompromised continue to be at risk. Children are increasingly being exposed to mask-less people in public places and serious variants continue to spread in our communities. Finally, the enormous scope and scale of the global pandemic means that cases of Long COVID are currently rising and will likely endure far beyond the pandemic’s contraction. More and more patients are experiencing major symptoms that linger for months. As such, Long COVID will persist well after the contagion ends, representing significant individual, public health and economic burdens.
Pandemics do not end all at once. This is unquestionably true for COVID-19. Infectious-disease experts have been clear that the novel coronavirus is unlikely to be eradicated. We must find ways to approach new outbreaks of the virus and plan for the certainty of Long COVID. Further, the pandemic will not end uniformly throughout the world. The crisis is more likely to incrementally recede, especially as vaccination rates continue to rise.
So, yes, let’s raise a glass together and celebrate. Let’s dance the night away in blissful reemergence – but, maybe for the time being, we gather outside. And, I for one, will continue to wear a mask in indoor environments. While mask wearing has become optional for those who are vaccinated, the pandemic is not yet over. Consider treading lightly – for yourself, for your neighbors, for family and friends. It is not you alone that is touched by your actions. We are a single community, connected and affected by the decisions of others.
~~
Long COVID: We Are Here!
Participants
Sam Baumel is a creative producer based in New York City with over a decade of experience. Sam consults with nonprofits, advertising agencies and businesses to help them tell stories with video and virtual reality. His success can be attributed to a passion for discovery – Sam loves learning about his clients’ industries and how to help them fulfill their missions. He collaborates with a diverse roster of talented creative technologists, independent filmmakers and companies carefully selected to best suit the scope of each project.

Helen Collen, originally from Brooklyn, NY, is an award-winning costume designer of 25 years. 18 of those years were served as the resident costume designer of the Billie Holiday Theatre in Brooklyn where she received a mayoral citation in 2014 for her services as an artist-in-residence. Helen is also a union affiliated wardrobe- supervisor/seamstress/costumer who has worked on Broadway, for major studio films and for television. Her costume designs and wardrobe work have appeared in hundreds of performances around the country that include the Kennedy Center in Washington, DC, CBS LateNight with David Letterman, Radio City Music Hall, ABC’s ‘Dancing With The Stars’, NYC’s classic American Place Theatre, HBO’s ‘The Wire’, Baltimore’s famed Centerstage theatre, to name a few.As a fine art photographer she has successfully exhibited photos three times- twice in New York City and once in Los Angeles. Helen’s medium of choice to showcase her photos is Vibrachrome-a metallic option that allows the reduction of carbon footprints during reproduction. Not being limited to videography, painting, drawing, or avid reading also Helen’s crochet artistry-an eclectic mix of soulful hats, worn by performance artists including Macy Gray, Kelly Ripa and Common, can be found at  

www.helucination.com

Helen’s writing and editing credits are varied and include multiple press and/or media releases, copy for tv, poetry and short stories. As a songwriter (BMI reg.) She co-writes songs with her husband Phil Collen, lead guitarist of Def Leppard and singer god-mother Debbi Blackwell- Cook for the blues-rock-n-soul band DELTA DEEP featuring Phil on guitar and sharing lead vocals with Debbi. “Delving further into different creative mediums for a continued sense of exploration, expression and fulfillment is a continuous journey”, she states. “I am very grateful to be excepted into a community merging art and science for the sake of ignited resolution-a fiery exclamation of the need to find a permanent end to long haul Covid. And I do believe with all my heart there is an end.”.

https://www.helencollenphotography.com

 

Dominik Havsteen-Franklin is a Professor of Practice (Arts Therapies) at Brunel University, with a Ph.D. in Art Psychotherapy and Metaphor. He is also head of the International Centre for Arts Psychotherapies Training (ICAPT) for Central and North West London NHS Foundation Trust, Vice President for the European Federation of Art Therapy and a member of the Council for the British Association of Art Therapists. His research focuses on applying empirical methods to investigating and evaluating the use of arts to facilitate changes in health conditions. His recent research has centred on co-designing and investigating arts-based dynamic interpersonal therapy (ADIT) for depression, creative and resilience engagement (CaRE) for frontline healthcare workers, developing arts-based psychosocial practice in South Africa, and is a co-applicant for an NIHR funded large scale RCT (ERA) investigating the effectiveness of arts therapies for heterogeneous groups in mental health services. Dominik supervises PhD students from a range of arts disciplines. He also continues to work as a consultant, an art psychotherapist and a clinical supervisor for the National Health Service. Recent articles include: https://www.sciencedirect.com/science/article/abs/pii/S0197455620301209?via%3Dihub https://www.frontiersin.org/articles/10.3389/fpsyg.2020.589744/full 

Ali Pattillo is a journalist, audio, live event producer working as a reporter at Inverse magazine covering health, climate change and science. Previously, Ali covered health at CNN with Dr. Sanjay Gupta. She graduated from Columbia Journalism School in 2019 and Dartmouth College in 2017. She produced the Fourth International Vatican Conference: Unite To Cure in 2018. The interdisciplinary conference broght together scientific, political, business, and faith leaders to explore how science, technology, and 21st century medicine will impact culture and society. 

https://vaticanconference2018.com/  She has written multiple articles about Long COVID, the most recent, 12/7/2020 Inside the Virtual World of Covid-19 Long-Haulers discusses the experience of long COVID including personal reports of symptoms, challenges and the need for research and treatments.

https://www.inverse.com/mind-body/covid-19-long-haulers

The archive of Ali’s work at Inverse, can be accessed here:

https://www.inverse.com/profile/ali-pattillo-19621088

Ali Pattillo website: 

https://alexandrapattillo.com/

Pato Hebert, MFA is an artist, educator and organizer. Hebert’s artwork explores the challenges and possibilities of interconnectedness. His projects have been presented at the Ballarat International Foto Biennale, the Songzhuang International Photo Biennale, the Centro de Arte Contemporáneo in Quito, Beton7 in Athens, PH21 Gallery in Budapest and IHLIA LGBT Heritage in Amsterdam. Hebert’s work has been supported by grants from the Rockefeller Foundation, the Creative Work Fund and the California Community Foundation. In 2008 he received the Excellence in Photographic Teaching Award from Center in Santa Fe. He serves as Chair of the Department of Art & Public Policy at Tisch School of the Arts, New York University, where his students have twice nominated him for the David Payne-Carter Excellence in Teaching Award.

Alexandra Juhasz, Ph.D. is Distinguished Professor of Film at Brooklyn College, CUNY. She is a core faculty member in the Interactive Technology and Pedagogy Certificate Program at the CUNY Graduate Center. Dr. Juhasz writes about and makes feminist, queer, fake, and AIDS documentary. She has a Ph.D. in Cinema Studies from NYU (1991) and attended the Whitney Independent Studio program as a video maker (1988). Author and/or editor since 1995 of scholarly books and writing on activist media in light of AIDS, black lesbian and queer representation, feminism, and digital culture, Dr. Juhasz is also maker of videotapes on feminist issues from AIDS to teen pregnancy as well as producing the feature fakes “The Watermelon Woman” (Cheryl Dunye, 1997) and “The Owls” (Dunye, 2010). Her current work is on and about feminist Internet culture (fakenews-poetry.org), with a most recent book, “Really Fake” with Nishant Shah forthcoming from U MN Press (2021), and two others on AIDS recently released or coming to press from Duke: “AIDS and the Distribution of Crises” (ed., with Nishant Shahani and Jih-Fei Cheng, 2020) and “We are Having This Conversation Now: The Times of AIDS Cultural Production,” with Ted Kerr (forthcoming). Kodandi Nithyananda is a multi-media artist whose work touches themes of the body as ephemera, the intersections of resilience, advocacy, illness, disability and pandemic, queering the sublime, and spaces of interiority. The artist’s work comes from a meditative space and is informed by life in an ashram and time spent as a monk. She has experience in web design, graphic design, arts, art education and fabrication. She is experiencing Long COVID at this time.

Shona Patterson, PhD (Brunel University, London) Shona Paterson, PhD (Brunel University London) has a transdisciplinary background in Natural Sciences (Marine Biology, Coastal Resource Management) and Social Science (Climate Adaptation, Social Justice, Governance). With a special interest in marginalized communities and social justice and equity, Shona’s recent research has focused on global flood risk and resilience, adaptation, and adaptive capacity in urbanizing coastal areas. Paramount to Shona’s work is the generation of defensible research informed by the needs of society and co-created with intended beneficiaries. Her work not only bridges science and policy but also focuses on effective and fit-for-audience communication of data and knowledge to ensure increased open and impactful discourse around risk. Paterson, S. et al (2020). Examining the Potential of Art-Science Collaborations in the Anthropocene: A Case Study of Catching a Wave, Frontiers in Marine Science, 7, 340.

doi.org/10.3389/fmars.2020.00340

https://www.researchgate.net/publication/341488469_Examining_the_Potential_of_Art-Science_Collaborations_in_the_Anthropocene_A_Case_Study_of_Catching_a_Wave

 

Heather Raikes, Ph.D., is Founder and Director of Neopoetics, a creative research studio innovating at the intersection of future-focused art and design research and the developing immersive technology ecosystem (XR/VR/AR/MR). Drawing upon decades of creative inquiry in media art, human-computer interaction design, UX, 3D visualization, immersive storytelling, performance, video, animation, and embodiment, Neopoetics probes, discovers, and creates emergent sensory experience. Heather led production of groundbreaking early XR experiences and applications, including The Holographic Workstation financial data visualization that forged new models for 3D information design; SK-II’s holographic story experience for the Tokyo Olympic Pavilion; Capturing Everest VR, a 360 video documentary of an Everest summit that won a Digital Innovation Emmy Award. She has a Ph.D. in Digital Arts and Experimental Media. Her work has been exhibited throughout the world at venues such as ISEA International, Culturest, On the Boards, Henry Art Gallery, and The Kennedy Center, and granted fellowships with the Center for Advanced Inquiry in the Interactive Arts and Oculus Launch Pad. Heather is a former professional modern dancer with the Erick Hawkins Dance Company. Her creative work is uniquely rooted in the body, and in the design of embodied interfaces with emerging technological systems.

Jeffrey N. Siegelman, MD is an Associate Professor of Emergency Medicine and Associate Residency Director at Emory University School of Medicine. His academic interests include ophthalmologic emergencies, as well as using simulation for resident education and assessment. He is experiencing Long COVID and has been vocal about advocacy for research and treatment. Siegleman, J. N. (2020). Reflections of a COVID-19 Long Hauler, JAMA, 324(20):2031-2032.

https://jamanetwork.com/journals/jama/fullarticle/2773056

 

Bettina von Stamm, MBA, Ph.D. (Design Management, London Business School) is the Founder and Director of the Innovation Leadership Forum. She works with leaders and leadership teams to give them confidence to innovate and collaborate in the 21st century. She delivers executive programs at prestigious universities and corporations around the world. She is a storyteller, inspirator and catalyst to enable different ways of thinking around, understanding, and enabling innovation. Bettina is a prolific writer in the fields of sustainability and innovation including written 5 books (The Innovation Wave, Managing Innovation Design & Creativity, The Future of Innovation, Innovation – The Path of Embracing Change to Create Value, Secrets Of Working Across Five Continents).

Karta Thomas is a ceramicist working on her degree at University of the Arts Central St. Martin’s, London. She is also an advocate for social change related to ME/CFS, recognizing the overlap of suffering and disease course between ME/CFS and Long COVID. When a virus she contracted in 2007 left her with profound protracted fatigue and multisystemic dysfunction, she experienced first-hand the invisibility, disbelief and underfunding that post-viral syndromes are met with. It took her 2 years to receive a diagnosis of ME/CFS and a further year to obtain medical tests and help. Her condition is largely self-managed through her own research on ME/CFS forums and associations. She is one of the moderators on an ME/CFS/Fibromyalgia online forum counting 4.1K members worldwide. She is a volunteer participant in the “Cure M.E.” Biobank study conducted by the London School of Hygiene & Tropical Medicine.

https://cureme.lshtm.ac.uk/

She is part of the Bethlem Gallery artist led research group.

https://bethlemgallery.com/

She is a qualified Hatha, Kundalini and Laughter Yoga teacher. She specialized in Yoga for ME/CFS and as such she is on the advisory panel of a yoga charity.

https://www.grdp.co.uk/

She worked 20 years in the pharmaceutical industry, in R&D Coordination and Regulatory Affairs, interfacing with The European Medicines Agency. On re-joining the workforce after 4 years of interruption due to ME/CFS, she became a Rehabilitation Worker for the Visually Impaired and later worked in the NHS as an ECLO at Moorfields Eye Hospital in London, where she helped patients navigate the practical and emotional impact sight loss had on their life. Instagram:

https://www.instagram.com/kartadharma/

https://kartadharma.wixsite.com/karta

Facilitation by Leigh W. Jerome, Ph.D., Founder and Executive Director of a non-profit gallery and forum, Relational Space, Inc. She is a mixed media and installation artist and holds a Ph.D. in Clinical Psychology. She is currently experiencing Long COVID. With many thanks to Kirsten Richert, CEO Richert Innovation Consulting.
Musician Contributions
Susan Levine, MD is a Board Certified Infectious Disease specialist who is a member of the Centers for Solutions for ME/CFS at Columbia’s Mailman School of Public Health, as well as a clinician/researcher affiliated with the Center for Enervating Disorders at Cornell, where she is a visiting researcher. She served as former Chairperson of the Federal Advisory Committee on CFS (CFSAC) and sees both COVID and non COVID related `long haulers’ in her clinical practice’. Custom Piano Tracts: · Schubert in a flat major opus 90 number 4 · Bach Praeludium, BWV 846 Jean Sophie Kim Pianist, singer and educator
Jean Sophie Kim has performed as a concerto soloist, recitalist and chamber player throughout the world. She has performed at the Alcazar Palace in Seville, Weill Recital Hall in New York, Fine Arts Building in Chicago and the Banff Centre in Canada, among others. She has degrees from the Manhattan School of Music and the University of Western Ontario. She has worked on the creative team for the David Lang’s Mile Long Opera in 2018 for the architecture firm Diller, Scofidio and Renfro. She is a long-time conductor at the Grammy award-winning Brooklyn Youth Chorus. Additionally, she has collaborated with producer David Maurice of Fox Grove Music on commercial music endeavors from children’s songs to avant-garde pop. · Phillip Glass, Etude #2
Other contributors:
Jody Britt is a fine art consultant based in New York. She contracted Covid 19 during the first wave in New York March 2020. Prior to her Covid 19 illness, she was a pilates devotee and enjoyed a long history of riding horses. Upon her recovery, she looks forward to resuming these cherished activities.
A journalist for the first 20 years of her career, Dr. Laurie Nadel is a psychotherapist and specialist in acute stress, trauma, and anxiety issues. She is considered a thought leader in the emerging field of acute stress and PTSD. From trauma to addictions–through workshops, lectures, and one-on-one sessions–her focus is helping people find new ways to heal.
 Noah Greenspan, PT, DPT, CCS, EMT-B is a Board-Certified Clinical Specialist in Cardiovascular and Pulmonary Physical Therapy with over 27 years of cardiopulmonary physical therapy and rehabilitation experience. n 1998, he founded the Pulmonary Wellness & Rehabilitation Center, a Manhattan-based physical therapy practice specializing in the care of patients with cardiovascular, pulmonary and complex medical conditions.

 

woman in mask covered in flowers

The Ties that Bind (15 months in) By Ruby Engel

Submissions / By

The Ties that Bind (15 months in)

By Ruby Engel

 

People say I look okay

But I don’t really feel that way

There’s so much that is wrong with me

I wish you could just look and see

I never know from day to day

If I can keep my symptoms at bay

“Aren’t you better?” I often get asked

Friends and family are aghast

When I say, “No, I’ve not improved”

Long COVID does not want me to”

They don’t understand, it’s been so long

They think “alive” means “recovered” – they are wrong

There are still remnants of the old me

They’re frayed and tattered like a flag by the sea

Imprisoned by this uninvited guest

Who appears to be on a quest

To win this war I never waged

And has made me feel so aged

I’m trying hard to resume life

But many days bring only strife

When you can’t think or walk or move

How can you get back in the groove?

Often I’m able to get some things done

But then a switch flips and the juice is gone

It always happens in just a flash

One moment’s fine, the next I crash

Sleep does not help the fatigue I feel

It doesn’t seem to help me heal

Long COVID really takes a toll

It’s an endless game of Whack-A-Mole

Every time I have success

New symptoms pop up to make me stress

But I won’t give up – I’ll whack away

Until I will be able to say

“Haha! I win! You lost the game

And though I may not feel the same

I’m me, I’m back! You can’t have me forever

Long COVID be banished – these binds I now sever!

Uncategorized / By

Exhibition Participants

Sam Baumel – Creative Producer, NYC

Ali Pattilo – Science Journalist

Kodandi Nithyananda, Multi-media and New Media Artist, California

Jeffrey N. Siegelman, MD – Asso. Professor of Emergency Medicine, Emory University School of Medicine.

Leigh W. Jerome, Ph.D. – Artist, Clinical Psychologist and Founder, Relational Space

Helen Collen – Fine Art Photographer & Visual Artist, NYC

Pato Hebert, MFA – Artist, Chair of Art & Public Policy Dept, Tisch School of the Arts, NYU

Shona Patterson, Ph.D. – Director, Center for Global Lives, Brunel University

Bettina von Stamm, MBA, Ph.D. – Founding Director, Innovation Leadership Forum

Dominik Havsteen-Franklin, Ph.D. – Professor of Arts Therapies, Brunel University

Alexandra Juhasz, Ph.D. is Distinguished Professor of Film, Brooklyn College, CUNY

Heather Raikes, Ph.D. – Founding Director, Neopoetics

Karta Thomas – Ceramicist, London, UK

 

Coming Soon

Uncategorized / By

person in wheelchair with laptop

Coming Soon

We are diligently compiling the most reliable and useful community resources for you! We have the highest standards for quality of content and want to check everything before offering it on our site.

If you have any community resources, websites, articles, publications, media, or information that you want to share please offer them on our submission form and we will gladly review all available resources!

 

original call for entries for the show

Long COVID: We Are Here!

Blogs / By
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!