The Pandemic is Over (but, really…is it?), Long COVID: We Are Here! A Virtual Exhibition

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.