The sea, vast and enigmatic, can be dangerous with water alone. When sailors of old whispered tales of unknown creatures stalking their ships — ominous shadowy figures lurking beneath their vessels for days and nights – more fears were revealed. In many tales, this large beast emerges from raging waters to swallow ships whole, earning several names in the process, depending on the waters. “Lusca”… the “Krake”…
“Kraken” is how Sheila Johnson described her seventh bout with COVID-19 around November 2022.
At the time, Sheila was the manager of a local retail store, prior to her experiences with COVID-19 that upended that and other aspects of her reality.
Unlike her previous experiences with the virus, this became a monstrous struggle that threatened to drag her down into the depths of long-term illness. However, unlike those previously mentioned tales of old, what she continues to face is very much real, even in the face of denialism.
It’s a story that really needs no more anecdotes or hyperbole, so I’ll let her tell it:
“I woke up one day with swollen hands and feet with pooling of blood. I couldn’t walk and when I used my hands they would swell … My initial cases (of COVID) were severe but not needing hospitalization. That time I just didn’t rebound. I had to take medical leave and then I had to give up.”
Sheila experienced severe dizziness, shaking, heart palpitations, chronic sinus infections and oxygen starvation, among other symptoms.
“I literally have three front full notebook pages of symptoms that switch and change … Not knowing what’s really happening inside your body is a nightmare in itself!”
One added impact of this multifaceted issue is that many people, like Sheila, have to deal with denialism and a lack of understanding, not just from their friends and inner circles, but even the medical professionals tasked with helping them.
She detailed speaking with neurologists and rheumatologists who often seemed hyper-focused on one symptom if not completely dismissive of her problems, but one of her more frightening accounts was when she could no longer remember the Lord’s Prayer.
“I had forgotten it! The word of the Lord is written in my heart! That was crushing.”
She added that she still struggles retaining new information and admitted how these struggles have compounded as she continues looking for work post-COVID-19. But Sheila is not looking for pity. She and others like her are outside doing the work, and finding new ways to build an income source despite these added struggles.
Residents who come across Roses and Lace in downtown Okmulgee, may see some eye-catching window art looking back at them. That is where I met Sheila, doing her part to assist in the beautification of the town.
“I figured it was my time to use my God-given talents! On my good days I write personalized songs also! Trying to find my hustle without putting myself at further risk,” Sheila stated, and mentioned that Michelle at Roses and Lace deserved to get recognition as well.
“She’s been such a blessing to me!” she added.
That final part of the story is necessary because it shows the resilience that many people across the globe are showing. The steps people are making to continue serving their communities – in spite of their struggles with a disease that still brings about more questions than answers.
—
So, what is Long COVID?
Long COVID, also known as post-acute sequelae of SARS-CoV-2 infection (PASC), encompasses a wide range of symptoms that persist for weeks, months, or even years after initial recovery from the virus.
The Centers for Disease Control and Prevention (CDC) defines Long COVID as a wide array of new, returning, or ongoing health problems people experience more than four weeks after first being infected with the virus.
With constant media coverage of humans confined to intensive care units and respirators, the impact of the virus on the respiratory system was pretty evident. However, the psychological and physical complexities of COVID and Long COVID on the brain and cardiovascular system tend to be understated and sometimes misunderstood.
These symptoms can range from fatigue, shortness of breath, brain fog, and sleep disturbances to more severe cardiovascular and neurological disorders — many of which are still being studied, diagnosed, and unfortunately misdiagnosed by patients and doctors alike.
The toll of Long COVID: Some studies have shown that older adults with COVID-19 often may experience cerebrovascular damage, contributing to neural injuries. (Manca et al., 2021) Additionally, evidence points to potential central nervous system damage and its impact on brain function.
Just as the initial virus did, many individuals with Long COVID have found themselves unable to return to work, contributing to a loss of productivity, financial stability, and basic human agency. These issues only exacerbate the challenges faced by these patients and their families.
—
Why should we care?
As with any suffering, it tends to become worse when we feel alone in facing it. Perhaps we’ve have adopted the lie of rugged individualism to the point that it has affected the ways we view the shared responsibility to each other.
Fortunately, others like Sheila have managed to find communities of people who work to understand and feel many of the same symptoms and sentiments, and collectively work towards solutions.
Several of the support group have discussed the struggles and symptoms that they are dealing with, everything from migraines and other aches to loneliness and income replacement.
Other members reported feeling that they are simply being “shuffled from specialist to specialist,” and being medicated without a cure. These issues have existed well before COVID and have been highlighted even by the ongoing opioid epidemic.
These valid critiques of our medical systems lay the groundwork for conspiracies that distort these truths. In the end, we all suffer for it. Just as we talk about big pharma and the profits made through science, there is also money in pseudoscience – and the world post-COVID has become rife with opportunists from all of these groups. We should be critical in addressing all of these issues and willing to have our minds changed in the face of objective truth. We need compassion and discernment.
Other group members reported being told, “You look ok!” or “You don’t look sick,” as if countless diseases are not just as hidden and insidious. Many of them wanted people to understand that Long COVID is real and can happen to anyone and affect any part of their body – especially because of the neurological impact and other unknowns.
Some members – understanding that many patients and well-intentioned doctors alike are still researching ways to better understand and combat this disease – are simply asking for different types of disability assistance, and ways to have some semblance of normality returned to their lives.
“I hope they are building a lot of longterm care facilities and have staff being prepared to handle the pending increase in those requiring assistance as a result of this virus,” wrote one member of the group.
Obviously, just because someone experiences the symptoms does not automatically mean that they are suffering from Long COVID, but one of the issues with the previously mentioned denialism and misinformation about the virus is that it prevents some people from seeking the help they need.
Though Long COVID Awareness Day was recognized on March 15, it’s imperative that we continue to support research as we support each other. The people fighting this often invisible battle are our neighbors, our friends, parents, coworkers. Some of us have seen lives transformed by this and other debilitating diseases, and we should work collectively towards finding solutions more than blame.
