Updated: Jun 16, 2021
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.
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!
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 clien