The fish tasted awful.
Lori Cooper doesn’t like to ruin anyone else’s good time at the dinner table, so she kept the taste of the fish to herself.
It was harder to hide how exhausted she felt.
Cooper, on a synagogue trip to Morocco led by her husband, Rabbi Neil Cooper, excused herself from the table and went back to her room, where a fever and terrible body aches soon followed. Respiratory issues came later, only after she and the rest of the Temple Beth Hillel-Beth El group made a tense, winding trip back to the United States on March 18-19.
After they returned, Cooper was hospitalized twice, with pneumonia that got worse and worse, and COVID-19, evident from the shattered glass look of her lungs on a CT scan. It was all a blur — Cooper doesn’t remember much of her hospital stay.
Though she started to feel closer to normal by May — her ability to taste has returned to normal — the onset of the virus was followed by months of drawn-out, debilitating medical and emotional complications. She’s developed an auto-immune disease (which may not be connected to COVID, but is nevertheless challenging); she hasn’t seen her children or grandchildren in months; she feels angst and guilt related to her survival, coupled with newfound pains in her joints and fatigue that’s never abated.
And her experience — that of the COVID long hauler, as those who have endured similar trials have come to call themselves — is hardly unique.
“It’s quite a scary time,” Cooper said. “Our world is scary right now.”
Long haulers, according to Harvard Health’s Coronavirus Resource Center, are those who contracted COVID-19 and have not fully recovered weeks or even months after their initial symptoms. Some long haulers began with mild or moderate symptoms; others may have first showed symptoms toward the beginning of the pandemic, but never received lab confirmation of COVID-19 due to the initial scarcity of tests. Much like the symptoms of COVID-19, those of “post-COVID-19 syndrome,” as it has been termed, vary widely, encompassing fatigue, shortness of breath, continued loss of taste and smell and much more.
A survey of the increasingly large Facebook groups, WhatsApp group chats and Slack channels dedicated to support between long haulers reveals the widespread anxiety and fear around the long-tail effects of coronavirus; tens of thousands of long haulers share aches and pains, odd tastes and new sensations, asking if anyone else has heard anything new on the news or from their doctor.
Rabbanit Dasi Fruchter, leader of the South Philadelphia Shtiebel, has found more comfort than she expected from such groups. Since Fruchter, her mother and her father were all diagnosed with COVID-19 in March, their bodies have tangled with the virus in different ways. Her father, asymptomatic; her mother, hospitalized; Fruchter, to this day, smelling and tasting rancidity for nearly eight months, along with fatigue, nausea and headaches. That’s not to mention the confusion and grief that she’s learned to dwell with.
Though not a heavy social media user, Fruchter began to join some of the larger long hauler groups, trying to get a sense of what was happening to her.
“We are each other’s doctor. It’s very strange,” she said. “But since there’s no real data out there yet about what exactly to do, it’s like the way that I think about a beit midrash sometimes. It’s communally sourced knowledge.”
Dr. Fredric Jaffe, a pulmonologist at Temple University Hospital, explained that doctors simply don’t know enough about COVID-19 yet to be able to understand what’s happening to long haulers like Cooper and Fruchter.
“It’s a novel virus. So we don’t have a year [of] data. We don’t have two years, we don’t have five years, we don’t have 10 years, as we do other diseases,” he said. “So the symptoms that we’re seeing, like fatigue and continued shortness of breath, or headaches — name a symptom and somebody probably reported it. Did it activate these things? Or is it part of the disease? We don’t know just yet.”
Only with time, Jaffe said, will the long term effects of COVID-19 (on long haulers and non-long haulers alike) be more fully comprehended.
But even the short-term observations are concerning; Dr. Sadia Benzaquen, a pulmonologist in the Einstein Healthcare Network, said that he’s seen a high incidence of severe lung scarring among COVID-19 patients in the ICU.
When David Forsted, a retired doctor himself, tells the story of his battle with COVID-19, he does so with slow, labored sentences. Forsted and his wife were on the same synagogue trip to Morocco as Lori Cooper.
“My birthday is March 24. I woke up on March 25, and I couldn’t breathe,” Forsted said.
Forsted, 74, who said he was in the best physical shape of his life prior to the pandemic, remembers almost nothing of what happened between that day and late August. He was sedated, he was intubated and he was on a ventilator. Today, Forsted needs to sit on a bench in the shower and can only move about with the assistance of a walker. His right wrist appears to have lost most of its function, and he was forced to learn how to brush his teeth and comb his hair with the left.
“They don’t talk very much about people like me,” Forsted said.
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