“Death, disability and suffering due to COVID-19 have been preventable since day one”

California parent reflects on the social and personal trauma of three years of pandemic

The World Socialist Web Site recently interviewed CJ, a single parent and worker living in Northern California. After attending a virtual meeting of the Educators Rank-and-File Safety Committee, CJ learned about the Global Workers’ Inquest into the COVID-19 Pandemic and felt compelled to share her personal experience as a worker, parent and global citizen.

CJ describes herself as “journey[ing] through personal ignorance, fear, academic curiosity, anger and activism since the pandemic’s onset.” She says her “views on society, social injustice, systems, institutions, government, capitalism, democracy, medicine, science and her place within the fray” have completely changed during this time.

Drawing from her experiences and research, CJ concluded, in discussion with the WSWS, “The further destruction of our health care system and its dedicated workers is nothing less than barbaric. The 200,000 orphaned American children deserve retribution today. Pandemic-related intergenerational trauma is inevitable. Our government is to blame for these monumental (and continuing) losses.”

Nancy Hanover (NH): What was your impression of the early months of the pandemic?

Like many people around the world, I first met the announcement of a fast-growing “global pandemic” in March 2020 with disbelief. I was fortunate to have a job that could be easily performed remotely, so my employer closed the office and work/life was different, but it went on.

As California plunged into its first pathogen-related lockdown in over 100 years, I, like many, thought that this mystery coronavirus would be easily extinguished: The US is known for being one of the most innovative countries in the world. And plus, we’re a wealthy nation, right? And so powerful. How bad could it be?

While following the shrewd and progressive rules set forth early on by my state’s governor (directed, in part, by California’s deputy public health officer and the state’s emergency response team), I began noticing cracks in the US national pandemic defense plan: From our nation’s “leader” trivializing COVID-19 and playing political puppetry in lieu of orchestrating a coordinating national emergency response to what was clearly a national and global threat; to realizing we didn’t have enough—if any—PPE stockpiled for frontline workers, particularly health care, military and other emergency workers; to the clear politicizing of the very institutions designed to explain, direct and ultimately protect public health; to top-down, blatant political and social corruption, misinformation and obvious incompetence—I became suspicious and alarmed. I became especially worried when I noticed the proliferation of misinformation and skewing of science-based facts in the news and among people I know.

Months into the pandemic, amid the beginnings of public and political anti-lockdown protests, the state’s public health officers, grappling with their own understanding of COVID, began allowing the formation of “social bubbles,” where an individual or family would limit social interaction with another individual or family—a distorted precursor to “contact tracing.” My daughter and I formed a “social bubble” with my boyfriend who conveniently lived across the street. We agreed to follow the rules as lockdowns transformed into mandates (like public masking, essential shopping and social distancing).

In June 2020, I suddenly became ill with unusual symptoms that included daily migraines, fatigue, gastrointestinal tract problems and cognitive challenges, which lasted for about four weeks. While suspicious, my symptoms were not completely debilitating. My past history with viruses was limited and my immune system was tough, easily clearing an infection in 2-3 days. I had no pre-existing medical conditions at this point, had always been active, a healthful eater and mentally solid.

Unfortunately, even if testing was publicly available in June 2020 (due to shortages, testing in California was limited to pre-op patients and people who were known to be exposed and obviously sick), I didn’t immediately recognize that I may have contracted COVID. Over three weeks after I became ill, I convinced my health care provider to test me. The test came back negative for COVID. Today we know that it’s crucial to be tested at the onset of symptoms. Like most viral pathogens, infection begins pre-symptomatically 2-3 days prior to the onset of symptoms. But COVID-19 is also different from other viruses: Roughly 60 percent of infections are transmitted by asymptomatic carriers (JAMA, January 7, 2021).

After avoiding public contact, following all the public health rules, ordering groceries for delivery, paying for an Amazon Prime membership to avoid going to stores and supply chain shortages, and spraying anything that anyone else touched with 90 percent isopropyl alcohol, just in case, I wondered, “How could I have contracted COVID-19? Was it that contagious?”

By the end of July, I learned that my boyfriend wasn’t entirely honest about his bubble safety behavior. At heart, he didn’t believe that COVID was actually a threat to anyone. As the only broken link in my protected system, the likelihood that he brought COVID-19 into my life early on was high.

Unfortunately, over a year later in August 2021, I began experiencing a strange combination of symptoms. After paying thousands of dollars for pointless baseline testing, lots of gaslighting by doctors and a ton of online research, I realized I’ve been suffering from a condition that exactly resembles post-acute sequelae of SARS-CoV-2 infection, commonly known as “Long COVID.” As of today, my symptoms have persisted for 15 months.

NH: Can you explain more? Why did you come to that conclusion?

First of all, my daughter and I had, in early 2021, practiced our own “Zero-COVID” policy. I supplemented my already healthy lifestyle (think hikes, parks, biking, camping, exploring, adventuring—low transmission risk activities) and offset work- and pandemic-related stress by walking the hills above my home for an hour each weekday morning.

In August 2021, I suddenly became breathless while climbing a hill. I thought, “Shouldn’t I be getting in better shape?” A week in, it became so bad, I would have to stop and catch my breath. Soon my chest started to tighten at home, long after my walk. I had to stop walking altogether. There were few moments when I could take a full breath—what I call a “satisfying breath.” Now I know that this is called “dyspnea.”

I had no history of asthma, and any allergies were mild and seasonal. Eventually, it became uncomfortable to sit or lie down. I wasn’t able to sleep, so I made an appointment to see my doctor. In addition to the dyspnea, I experienced mild diarrhea, headaches, fatigue, “brain fog” (medical term, “cognitive impairment”) and had a hard time focusing on work-related details, especially in the afternoon.

My brain felt tired. I was tired no matter how much I slept. I began taking afternoon naps on weekends after minor activities (like walking on the beach or touring a garden). I have NEVER been a nap taker. My daughter was shocked. I considered that these might be age- or menopause-related problems, but they came on so suddenly, normal explanations didn’t add up. I began keeping a journal and looked into mold and carbon monoxide poisoning in case there was an environmental cause. None of these theories could explain this set of symptoms and their sudden onset.

My medical journey began when the first doctor I saw prescribed albuterol without any type of diagnosis. Albuterol didn’t help. Additional visits revealed that the doctors were fixated on my lungs and heart and nothing else. I tried bringing up my other symptoms.

One doctor flat out told me, “I don’t have time for your other symptoms.” When she said that to me, I cried and then quickly switched doctors. For years I’d only come to see her for annual “well check” visits—a patient with a near-perfect medical history—no major illness, no comorbidity. The new one, a referred internal medicine specialist, seemed to be a kind man but only expressed interest in my lungs and heart—again. He ordered numerous baseline tests which subsequently came back normal.

I continued to ask my doctor to consider my competing symptoms. He ignored every email. I did a lot of research and realized that my symptoms fit perfectly the emerging studies and discovery of a chronic form of COVID. The NIH was funding studies all over the US and eventually, with the help of studies and activist groups, the CDC posted clinical diagnostic guidelines for health care, doctors and patients. I sent well-documented information to my doctor who denied I had COVID and at the same time, told me that “there was no diagnosis for this form of COVID.” And that was that. The doctor was just a small piece of the oversized corrupt, dysfunctional US health care machine. Now I know firsthand why the US ranks so low globally in medical outcomes, somewhere between Cuba and Costa Rica.

About six months later, as “Long COVID” became more well known, more patient and citizen action groups began forming and experiences were shared online and in human interest news articles across mainstream media. Ed Yong at The Atlantic produced some exceptional, poignant and well-documented COVID-19 investigative journalism. As it turns out, my experience with these doctors was my first introduction to what is commonly called by patients with complex medical conditions as “medical gaslighting.” This nonsense cost me stress, needless COVID exposures and thousands in out-of-pocket costs on top of the thousands my employer and I pay in premiums each year.

What did I do next? I used my instincts: I reviewed my journal and considered articles on the implications of inflammation and decided I was experiencing some sort of roving, multi-organ inflammatory response to something—maybe COVID.

I then researched and began following an ayurvedic anti-inflammatory diet. Maybe it’s a coincidence, but within two months, my symptoms began to subside. They didn’t disappear, but they seemed more manageable. By January, my symptoms seemed to plateau—no better, no worse. My breathing issues are now mostly confined to overexertion. My chest tightness is triggered by fatigue or stress. If I pace myself and take it easy, I can manage. If something big happens (emotional or physical), it can take me a week or two to recover. The GI tract issues have subsided but still aren’t normal.

Nothing is normal anymore. I’m hoping my previously healthy, strong body will heal whatever’s going on inside. I’m hoping I will be able to die later rather than sooner. Maybe I’ll be exempt from the US’s rapidly shortening life spans.

NH: You’d mentioned having issues with your employer’s lack of workplace safety. Can you tell me more about that?

First, know that my company is one of the largest media companies in the US. It’s owned by a hedge fund which, like every other capitalistic invention, squeezes profits and productivity from every inch of its organization. It’s not easy to be a worker who depends on this system while knowing you and other worker bees are being taken advantage of.

At the beginning of the outbreak and in response to our state’s prompt Stay-at-Home Order, my company’s local leadership enforced remote work except for jobs that must be performed in-person. Essential businesses like ours are exempt from mandates, enabling the company to operate conditionally. Without this exemption, I would have lost my job at least temporarily. During this time, I felt that our company did a good job of relaying public health information to staff. It seemed like the company took the health of its workforce very seriously. I felt proud and hopeful!

Months later, among heightened public protests and pandemic politicization, our governor was caught eating at a fancy restaurant with an unmasked group. California’s “Blueprint for a Safer Economy” was scrapped in favor of the slow and willing relinquishing of pandemic control by governments and public health experts and the surprising handing-over-of-the-reins to everyday people and self-centered, sometimes desperate employers. Unfortunately, the US has never reversed this “strategy.”

As the pandemic raged on and life expectancy began dwindling without notice, my employer conveyed a concern for safety while encouraging vacations. They continued to support remote work and introduced the phrase “whatever makes you comfortable,” meaning that if you don’t want to participate in things in-person, you have a pass (for now). Later I’d realize how patronizing and superficial that accommodation was and how it was another precursor, this time to a phase of denialism which would become a widely accepted social norm in 2022.

By October 2021, my employer began pressuring our team to meet in-person with clients. The approach was passive aggressive; mostly demonstrations by managers that they were attending events and meeting with clients in-person [and we should too: implied]. If this were a sexual predation situation, this type of pressure would be called “grooming.”

By December 2021, COVID was no longer discussed at work, and we never heard from the corporate office again. The term “COVID fatigue” became popular in mainstream everything—the newest social excuse for giving up and going out to eat at a restaurant, as if “wishing” had been an optional way to end the pandemic all along (just click your heels). What if, at some point, I was forced back to the office during this deadly pandemic? What if I got sick and couldn’t work? What if I died or became permanently disabled? I am my daughter’s sole supporter and have nobody to support me.

While being forced to send my child to an unsafe in-person school in September was a significant stressor, the pressure from my employer to return to an unsafe work environment was at the core of my anxiety, and, I discovered, depression. While I’m worried about my daughter’s health and future, my job pays my bills.

This is the first time in my life I’ve experienced anxiety and depression. My therapist said that “general anxiety disorder caused by pandemic trauma” is probably the most common mental health support request these days. Like COVID, it doesn’t exclude the strongest of us.

NH: You previously told me that you’d done some research into worker rights in regard to COVID-19 and workplace safety. What did you find?

I began researching these topics when I started therapy because I felt I needed a legal way to counter an inevitable return-to-work mandate which we were told was coming.

I found that OSHA’s updated rules and recommendations were not only outdated at the time I read them, they favored employer protection. (COVID discoveries and policy were changing at a rapid pace at the time, followed by typical slow motion government agency action). Frustrated, I turned to employment law, contacting a law professor who was quoted in a COVID ethics article I’d read. I searched for legal precedent: Would laws protecting personal religious beliefs apply to my beliefs about COVID? Where’s the line between ethics, morality and law? If I’m free to make my own decisions and the CDC states that individuals should “assess their own risk,” how can my employer overrule what I deem unsafe?

As it turns out, there don’t seem to be any protections or precedent for any of these situations. However, I found that the ADA (American Disabilities Act, 1990) does protect workers’ mental health. Clearly, my employer’s willingness to put profits over my safety—and my family’s health and financial welfare—was causing significant mental anguish. And if mental health is protected by the ADA, a simple note of request for exemption from my employer’s passive aggressiveness toward me should theoretically protect me by law.

So that’s what I did: I got a doctors’ note exempting me from in-person work events until the pandemic is declared an “endemic” by definition (meaning the pathogen is managed and controlled). For now, my note has worked in my favor—and perhaps my employer’s—as my productivity is up. This action lifted a thousand pounds off my shoulders.

Commuters are seen at a Metro station in Los Angeles, Wednesday, July 13, 2022. [AP Photo/Jae C. Hong]

NH: What have you learned from your experiences?

Death, disability and suffering due to COVID-19 have been preventable since Day One. The 1.1 million American deaths (as of December 2022) were mostly preventable. The 300-400 lives lost each day and tens of millions inflicted by chronic and damaging forms of COVID-19 are preventable.

The further destruction of our health care system and its dedicated workers is nothing less than barbaric. The 200,000 orphaned American children deserve retribution today. Pandemic-related intergenerational trauma is inevitable. Our government is to blame for these monumental (and continuing) losses.

While there’s always much to learn about new pathogens, the science of infectious disease, epidemiology, has been around for 2,500 years: It’s an old science whose fundamentals should be understood by everyone. The principles of biology, nature, math, transmission, exponential distribution, the mechanics of airflow and humans’ ability to adapt don’t change.

The more you allow a contagious, deadly and disabling airborne, nondiscriminatory pathogen like COVID-19 to travel, the more it mutates in ways that evade vaccine innovations and natural immunity. Vaccines do not prevent transmission: Good public health policy and personal choices do.

A healthy population should not be measured in terms of GDP [Gross Domestic Product]. The US system of government has been failing its citizens for decades. Capitalism is destroying lives and our planet. Our greatest assets are being destroyed. What happens around us, no matter where we live or what we do in this world, is relevant to us, especially when faced with a pandemic. Even if surrounding systems are failing, an individual can act or make decisions that benefit others in a positive way.

NH: Can your experience serve as a warning?

Yes, every testimonial from every single person impacted by COVID should be considered a warning—an overdue warning. The writing has been on the wall for decades, the pandemic is just another giant hole in the dam built by capitalistic greed.

NH: What do you think about the importance of the Global Workers’ Inquest and the work of the rank-and-file committees?

Raising our voices and working together to push back on the many injustices workers face today is vital to a secure, peaceful future. Nobody should be faced with obstacles to safe, equitable work environments, decent housing, quality health care (including mental health access), nutritious food, an intact natural environment and low-cost education through college.

If you consider the history of civilization, we find the same friction between those who choose to oppress in order to gain and those who simply wish to live peaceful, long, satisfying lives. The emergence and adoption of modern capitalism followed by industrialization, war and globalization has worn down workers for generations. Material wealth as we know it is held tightly by a chosen few, and given our propensity to measure self-worth in terms of material wealth and social approval, those with less are left with a sense of powerlessness and unworthiness.

The truth is that there are more of us than “them.” If we educate ourselves and our children and organize, we can reclaim our power. History has proven this time and again.

First of all, workers and young people should read and understand the values of various sources of information. Educate yourself and share what you’ve learned with your children. Be curious. Dig deeper. Don’t be lazy. Think critically.

Stand up to crappy employers, stand up for your children and their teachers and never abandon your morals and sense of ethics. My mother once told me to always follow my gut, even if my head was telling me something different. The least I can do is die knowing that I never sold out. Love thy neighbor.

If that isn’t enough for you, decide if you have the skills and passion to activate, organize or lead a movement. Even small contributions are meaningful. You can act by yourself or join an organization whose values and purpose align with yours.

Last, as far as COVID goes, avoid it the best you can and don’t spread it—for yourself and your family but also the world. Most of all, know that you’re not alone.