Painted Into Corners

The World Keeps Shrinking For The Vulnerable During Covid-19 Pandemic

Sometime in mid-March of 2020, my husband suggested that we visit our favorite local restaurant, as it might be the last time we could for a little while. Covid-19 had made its way here and shutdowns were coming. Back then I didn’t know that it would be the last time my husband and I would done at our favorite restaurant possibly ever, nor that my son and I would share our last meal at his then favorite, now permanently closing restaurant a few days later on March 19th. 

In my state of Ohio, a stay-at-home order went into effect on Monday, March 23, 2020 at 11:59PM. Our Republican governor surprised me in this handling of the pandemic early on when he said, “We haven't faced an enemy like we are facing today in 102 years - we are at war. In the time of war, we must make sacrifices, and I thank all of our Ohio citizens for what they are doing and what they aren't doing. You are making a huge difference, and this difference will save lives. Right now, we are in a crucial time in this battle. What we do now will slow this invader so that our healthcare system will have time to treat those who have contracted COVID-19 and also have time to treat those who have other medical problems. Time is of the essence." I was impressed in the mess that had become our political climate. His words, I hoped, would convey a powerful message.

I picked up my son from school that Monday. Students had gone to collect laptop computers in preparation for remote learning. He was sick, which wasn’t uncommon for him. Like me, he has autoimmune disease and, also like me, school had always meant one respiratory infection after another. This time, as we would learn some time later, he had Covid-19. By the time our school went remote, the pandemic virus was already circulating our school buildings and coming home with students.

The remainder of the 2019-2020 school year being remote provided some relief. I was no longer worried about the recent threats at my son’s school, which were deemed serious and credible enough that the FBI had been called in to investigate. The world was quieter, the skies were clearer, and life moved at a slower pace. Social media filled up with bread recipes and crafty projects. I embarked on my own DIY adventures, installing under-cabinet lighting and painting almost the entire interior of my home. But there was a lingering and unwelcome guest among us. My husband had been sick in January with what we assumed was the flu. At the time it was easy for us to avoid each other as we weren’t yet married or living together, and I didn’t get sick. He, however, didn’t seem to get better. His cough, a rather violent one that would leave I’m gasping for air and red-faced from what I can only describe as the utterly violent nature of it, was still going on when I got sick in March. Although I was concerned about him possibly catching my almost equally violent cough, he oddly did not. We found it a bit strange that we had been infected in different places months apart, but he was obviously immune to whatever I had. This led us to become curious as to whether it might be Covid-19, but we brushed this off for the most part as over-worrying.

While my husband kept coughing, I appeared to recover after about 3-4 weeks of coughing. I’d had a dry cough, though I felt a desperate sensation that I needed to clear my lungs. It was the kind of urge you would feel before moving a lot of junk from your lungs by coughing, except that nothing moved. And nothing I tried, from steamy showers to Mucinex and everything in between, made a bit of difference. Eventually, it went away, and I felt normal again. Unfortunately, normal would be brief.

Summer came along and my husband was still coughing. I was worried at this point and encouraged him to get some chest x-rays. He did, which revealed angry lungs and also the suspicion of an aortic aneurysm. He had just had extensive preventive cardiac testing done shortly prior to this and there was no sign of an aneurysm, so we hoped further testing would rule it out. Instead, the aneurysm was confirmed, along with an enlarged left ventricle and diastolic dysfunction. These findings are consistent with a post-viral cardiac inflammatory process. By now, we knew we were most likely dealing with Covid-19 post-viral illness. 

Around the very same time, I started experiencing a constellation of seemingly random symptoms including tinnitus, pins and needles sensations in my extremities, trouble concentrating and remembering, dizziness and balance difficulties, and I lost nearly 75% of my hair. I would eventually be diagnosed with post-viral autonomic neuropathy or dysautonomia. The hair loss was something called telogen effluvium, which occurs after severe stress to the body and was happening somewhat frequently in Covid-19 survivors. We had been marked by Covid. 

Upon realizing and ultimately accepting what had happened to us, then quickly realizing that reinfections were happening in people, we set out on a mission to do everything we could to protect ourselves from further infection, preserve our health, and fight for recovery. The thought of reinfection was frightening, to say the least.

There was still a feeling of solidarity as we entered 2021. Joe Biden had won the election and he seemed to take Covid-19 very seriously. While I didn’t have high expectations of him as a president, I did believe he would fight the pandemic, encourage use of all of the tools we had, and keep protections in place. At the time he took office, we had surpassed 400,000 American lives lost to Covid-19. This was nearly double the number Joe Biden had said was so unthinkable that anyone responsible for it should not be President of the United States. Considering his campaign statements and the fact that we had vaccines rolling out and therapeutics on deck, I felt hopeful. I even let myself think happy little what-ifs, like what if things stay on this path and the kids and I can resume our weekend visits to the skating rink? What if my husband and I could return to the gym? Masked and cautious, of course.

My hope did not last long. To my utter horror, The Great Unmasking commenced in May of 2021. Joe Biden was acting as if we had won the marathon but we were miles short of the finish line. It defied all logic and reason, and laid to waste all of the efforts and sacrifices we had all made leading up to that point. Children under 12 were not even eligible for the vaccines yet, and because of schools, they are our greatest spreaders of respiratory illness. Further, assuming the Covid-19 vaccines had actually been capable of what Joe Biden and CDC Director Rochelle Walensky claimed, I know enough about history and medicine to be aware that it took a years to get diseases under control even with excellent vaccination rates and a highly-effective vaccine. Doffing masks before the vaccine rollout was near complete was like throwing away every other tool in the tool box because we had one new tool; big jobs require more than one tool.

As we worked our minds around this new obstacle, these moved goal posts and adjusted our expectations and hopes, the entire situation had begun to wear on us. My husband was dealing with double and triple the workload at the hospital, now mandated overtime, and constantly training new hires as the mass exodus of employees from healthcare continued and trainees were immediately overwhelmed and also left, all while dealing with Long Covid himself. Our time together, now as newlyweds living together, was far less than we’d previously shared as a dating couple living apart. What time we did have was impinged upon by one or both of us having a flare of symptoms, exhaustion, or a surprise day off that was now his turn in the rotation of mandated overtime to work. I felt certain that leadership would have to realize this current trajectory was not sustainable and do something to improve the situation. Instead, they made it drastically worse.

At the end of December 2021 just after the holiday gatherings and as the Omicron wave peaked, the CDC shortened isolation time guidance to a grossly inadequate 5 days. My husband was immediately surrounded by coworkers in nothing but surgical masks working while infectious. Within a week, despite his N95, we were both infected.

Our second Covid-19 infection was brutal for both of us. Though “mild” enough that we avoided hospitalization, we both suffered for a couple of weeks. My sinus pain didn’t leave me for over a month and the headaches came and went for several more. We both had brief pauses in our Long Covid symptoms, but only to have them return with a vengeance even worse than before, bringing new symptoms along. Feeling utterly defeated by this point and almost certain things could not possibly get worse, in February 2022, CDC Director Rochelle Walensky went on a podcast and said the quiet part out loud.

Good masks in healthcare combined with adequate isolation time guidance would have spared my husband and me the Long Covid hell we were now living after spending two years recovering, and not yet completely, from our first bout with Covid-19. Hearing the CDC Director say these words, I knew for sure we had been abandoned. It was like being kicked in the guts. The anger and depression were consuming. It was a fight to keep going on. But again, I adjusted my sails, accepted my losses, sold a bunch of my pre-pandemic stuff and invested in things that we could enjoy outdoors, and refused to be defeated by a system that would dispose of me and everyone like me for the sake of malignant capitalism.

Still, somewhere inside I still believed there would be a reckoning. A realization. A surrender flag waved, even if it was a quiet one disguised as something else by leadership, to the “power through” and vaccine off-ramp strategies our leadership seemed so fiercely attached to despite vaccines becoming less and less effective and Covid-19 spitting out more and more virulent progeny. Oh, but I was wrong.

At the Detroit auto show in September 2022, Joe Biden announced in a 60 Minutes interview that the pandemic was over. At the time, nearly 4,000 Americans were dying of Covid-19 every week. For them and for the families of the 1.1 million Americans who had lost their lives to the virus so far, the pandemic was anything but over. For the still millions more of us suffering with Long Covid, for the healthcare workers strained beyond any reasonable level in our beleaguered healthcare systems, for the children who are being repeatedly infected with a virus that has already sent our life expectancy plummeting a year for every year of this pandemic, this is anything but over. He then went on to say that he doesn’t even think about Covid-19 deaths.

And it didn’t get any better from there. At his 2023 State of the Union address, Biden announced, “Covid no longer controls our lives,” another devastating and grossly inaccurate assessment of the pandemic situation. And by now, even those who were supposedly on the side of science and claimed allyship to those most affected and endangered by Covid-19 had long abandoned their masks and what we now know was only performative concern as they grew weary of such precautions interfering with showing off the latest Seophora lipstick lines and the Urgency of Brunch. Biden’s address was cheered and lauded and even bolstered his approval rating.

As many Americans carry on enjoying, if temporarily for many who will sadly soon join our Long Covid ranks, their pre-pandemic lives with presidential approval and encouragement, the most vulnerable of us have been increasingly painted into corners. Having given up on any hope of returning to restaurants, malls, and theaters, even the hope of safely accessing necessary medical care, prescriptions, and groceries has become increasingly dangerous.

In the wake of the continued delusion that Covid-19 is no longer a problem, masks are increasingly disappearing in healthcare settings. While healthcare settings already dealt with some of the most vulnerable people, the fragility of their conditions by the time care is accessed is increasing. With all efforts to ensure patient safety from Covid-19 disappearing, people who have been avoiding care for years already are more afraid than ever to access it. Preventive appointments and procedures that may have discovered a condition before it became emergent are no longer happening, resulting in crises and even deaths. And when these valid, reasonable concerns are expressed, patients frequently face gas lighting and receive mental health referrals for “health anxiety”.

If all of that wasn’t enough, the Johns Hopkins Covid-19 Data Tracker will cease reporting, and May 2023 will being an end to the Covid-19 Emergency Declarations. As a result, the “personal risk assessment” that public health officials are suggesting individuals make for themselves is nearly impossible, especially for those who are not wealthy. Without adequate information on Covid-19 community levels,  people are unable to know their true level of risk. Without the Emergency Declarations, there will be no more insurance coverage of Covid-19 tests, making it an out-of-pocket expense that many Americans cannot afford, especially as a preventive/pre-test option. Telehealth, the only safe option to access healthcare for many vulnerable Americans, is also on the chopping block. The Covid-19 landscape for vulnerable or even cautious individuals trying to invest in their health and futures by avoiding a virus that the CDC admits affects “nearly every organ and organ system of the body weeks, months, and potentially years after infection,” is not only unsafe at this point but increasingly outright hostile. Even in New York City, one of the most progressive places in the country, the mayor is saying that anyone wearing a mask should be forced to remove it before entering a store - a potentially lethal risk being imposed upon the immunocompromised.

While I have been consistently wrong about the timing of leadership realizing the need for and implementing a 180-degree turnaround on Covid-19 management, the need remains. I was wrong because I assumed common sense and the good of humanity would be factored in. I’ve learned they won’t, unless it in some way becomes either profitable or less expensive than the status quo. It would be impossible for leadership not to know how things end on this path, but it appears we have reached a point in our house of cards late-stage capitalism where they intend to ride the status quo until the wheels fall off.

No one is coming to save us. Staying healthy is an act of rebellion now, and an investment in the future that we are on our own to make. As long as people are willing to die for the Urgency of Brunch, they will keep sacrificing you. Masks are not indication of a desire to be governed, but an act of defiance against a government that has encouraged us with smiles and flowery speeches to climb into to the death machine on our own, willingly, without so much as a second thought to anything but that pre-pandemic “normal” which wasn’t at all normal to begin with.