This post was originally published on St. Louis American

By Sylvester Brown Jr.

A cup of coffee during the 2020 winter holidays alerted 15th Ward Alderman, Megan-Ellyia Green, that she might have contracted COVID.

“Every holiday, I buy mint Coffee Mate,” Green explained. “I didn’t taste anything in my first cup of coffee. The next time…again, nothing. That’s when I thought, ‘oh, shoot!’”

Within 24 hours of her observation, Green got a fever and severe body aches. By week three after her diagnosis, she was experiencing severe headaches, heart palpitations, and insomnia. It seemed like her mind wouldn’t “shut down” as pain continued in her nerve endings.  

“It felt like I was caked in mud, my legs and arms felt weighed down all the time,” Green recalled.

The symptoms lasted for months. Some, she said, still linger to this day. Green, a Tower Grove South resident, lives alone with her Shar-Pei/boxer mix, Dewey. As a self-described “active person,” Green said depending on others while contending with continuous pain has proven to be frustrating and mentally depleting.

Green caught COVID in the first year of the pandemic. Although coronavirus patients complained of lingering symptoms, researchers had yet to give the condition a name. Today they’ve identified the ailment as “Long COVID,” also known as Post COVID syndrome or long haul COVID. People experiencing the malady have a wide range of new, returning, or exacerbated health problems weeks or months after being infected.

The St. Louis American cited a recent study detailing how as many as one in three people who survive COVID experience lingering symptoms. Some of the more surprising indicators include hair loss, brain fog, erectile dysfunction, shortness of breath, prolonged loss of taste and smell, and several other neurological and respiratory conditions.

Toni Evans, a BJC employee, wasn’t aware that there is an official name for the pain she endured since contracting COVID almost two years ago.

“I was an experimental lab rat. I got it in March 2020, when the pandemic first struck,” Evans said. “I got it before doctors even knew what to do.”

Toni Evans in her North county home. Photograph by Wiley Price/St. Louis American

Evans gave a harrowing account of catching COVID. At the time, she worked for Children’s Hospital. She can’t say for certain, but Evans is sure she got the illness from work. She recalled stopping at an urgent care facility and getting tested. The results came back negative. She went home, drained and exhausted, took a shower, and went to bed. What happened over the next three weeks are a blur, she said.

Her children told her she took part in a Zoom family meeting but didn’t say much, which is unusual. After not hearing from their mom, Evans’ adult children went to check on her. Her daughter said she was in her bedroom, unresponsive. Evans has brief flashbacks of being in a Missouri Baptist Hospital room surrounded by doctors and nurses. She remembers them flipping her on her side or back to clear her lungs. Someone said something about her having pneumonia. Her family informed her that things had gotten so bad, doctors advised them to start getting their mother’s affairs in order.

Two months later, in May 2020, Evans was finally released from the hospital. She was home, but she wasn’t pain-free. She had severe headaches, nerve pain, a torn rotator cup, and had somehow developed a limp. Doctors told her the symptoms were related to detoxing from the ventilator and injuries sustained from having her limp body constantly repositioned to clear her lungs. She accepted that explanation then, but more than two years later, she still has post-COVID troubles.

“I feel like a bus has run over me,” Evans said. “I have heart palpitations from anxiety, insomnia. My doctors say I have ‘chronic PTSD’ because I’m scared to go to sleep. That’s what happened the first time. I went to sleep and almost woke up dead.”

Last year, while at a nightclub, Evans’ knees buckled. She fell and broke her wrist.

“It hasn’t healed yet,” she said. “It’s those types of things I’m still dealing with.”

Green said she was fortunate. She read about and enrolled in a new program offered by Washington University School of Medicine called “Care and Recovery After COVID-19” (CARE) Clinic. According to the University, the clinic provides “coordinated and collaborative care among 11 specialties. Visits include a comprehensive assessment of acute COVID illness, symptom history, current symptoms, and screenings for potential complications and more.”

The unknowns of COVID are still unfolding. Researchers are still trying to figure out issues like how the immune system reacts to long COVID, the cause of “brain fog,” that uncomfortable “spaced out feeling” COVID survivors speak of, or how the virus increases levels of anxiety, depression, and insomnia in people.

One thing is certain: Long COVID is here for the long haul. In a recent article, a researcher theorized that because so many people in such a short amount of time have the same viral disorder, a working model of treatment for post-COVID patients and future infectious diseases may be developed soon. This hypothesis underscores the value of the local COVID clinic’s work.

Green said the clinic has helped as she works her way back to normal. Evans hadn’t heard of the program but welcomed the news of a clinic dedicated to treating the aftereffects of COVID. Both women worry what COVID may mean for society in general.

“I think as a country we have not even started to understand the long-term impact of COVID or how it will affect the workforce or people with ongoing disabilities, “Green said. “I don’t even know if there are conversations about providing a support system for people with Long COVID.”

Evans, who’s thankful that none of her children or grandchildren contracted COVID from her, also worries about people going back to work with ongoing undiagnosed illnesses.

“It used to be you had to quarantine for 14 days, now they’re saying you can go back to work in five days,” Evans stated. “I have good insurance, but I feel for those who’ve had COVID and no longer have symptoms but are still dealing with this disease.”

Sylvester Brown Jr. is The St. Louis American’s inaugural Deaconess Fellow.

Patients who are still experiencing prolonged symptoms after COVID-19 can call the CARE clinic at (314) 996-8103.